Candy's 2-1 reply to Linda ?'s 1-31 being frightened
LeeAnn D 2-1 Coumadin & aspirin therapy
Renee M's 2-1 reply to Dee W's 1-29 weight loss experience
Renee M's 2-1 reply to Regina R's 1-30 Coumadin & pro-time blood testing
Margie F's 2-1 reply to Regina R's 1-30 Coumadin & pro-time blood testing
Linda's 2-1 reply to Jon's 1-31 diagnosis, depression meds question
Brenda H's 2-1 reply to Tina's 1-31 LV size question & digoxin
Allen Cravener's 2-1 reply to LeeAnn D's 1-29 defibrillator as a-fib option
Chuck D 2-1 intro, sleep study importance
Linda ? 2-1 getting info from doctors
Linda Latimer 2-1 update, improved heart, back to school & more
Barbara K's 2-1 reply to Jamie's 1-30 husbands & vasectomies
Jamie 2-1 Shannon, selenium, Medline & more
Samantha B 2-1 CoQ10 absorption question
Muriel's 2-1 reply to Gail M's 1-29 drug trial perks & more
Jennifer B 2-1 on Coreg & already off Coreg
Jon's 2-2 reply to Linda ?'s 2-1 anti-depressant meds
Milo 2-2 book excerpt
Heather 2-2 intro, seek correspondents & more
Pete E 2-2 magnesium level question
Keith W 2-2 what is CHF? (in plain talk, please)
Ben B's 2-2 reply to Brenda H's 2-1 heart size & TNF question
Jon's 2-2 reply to Ben B's 2-2 TNF
Pat Latimer's 2-2 reply to Brenda H's 2-1 heart size
Bill D's 2-2 reply to Heather's 2-2 oxygen, transplant, surgery & more
Bill D's 2-2 reply to Tina's 1-31 digoxin
Dave K 2-2 intro, mortality & EF questions
Paul M's 2-2 reply to Jennifer B's 2-1 staggering meds when starting Coreg
Candy 2-3 meds' side effects - Coreg & digoxin
Jon's 2-3 reply to Candy's 2-3 meds' side effects - how do we tell?
Hope M's 2-3 reply to Jennifer B's 2-1 Coreg & metoprolol; beta-blockers
Hope M's 2-3 reply to Linda ?'s 2-1 terminology & to Brenda H - heart size
Hope M's 2-3 reply to LeeAnn D's 2-1 aspirin, Coumadin & more
Linda ? 2-3 is St. John's Wort any good?
Henry Ticknor 2-3 how to get full-text of study/trials?
Jon's 2-3 reply to Henry Ticknor's 2-3 3 possibilities
Jennifer B's 2-3 reply to Paul M's 2-2 have tried that with no luck
Ginger 2-3 update & what is a gallup?
Lee R's 2-3 reply to Dave K's 2-2 how long we have, self-education & more
Brenda H's 2-3 reply to Ben B's 2-2 heart size, flu & colds question & more
Ben B's 2-3 reply to Dave K's 2-2 mortality, steps to take & more
Jon's 2-3 reply to Ben B's 2-3 cath & EF
Ginger 2-3 selenium questions
Jon's 2-3 reply to Ginger's 2-3 selenium, looking for more opinions
Lee R's 2-3 reply to Linda ?'s 2-1 mild depression measures & more
Lee R's 2-3 reply to Chuck D's 2-1 exercise programs & more
Lee R's 2-3 reply to Keith W's 2-2 IHSS, ICDs, info & more
Janet T 2-3 update, SSD, cardiologists & more
Dede G 2-3 intro, any other youngish working moms here?
Heather S' 2-3 reply to Bill D's 2-2 oxygen mishap, update from doc visit & more
Jon's 2-3 reply to Heather S' 2-3 asking the big fella for stuff & more
Tina's 2-3 reply to Bill D's 2-2 enlarged hearts, blood test questions & more
Bill D's 2-3 reply to Keith W's 2-2 plain English answers for you here
Bill D's 2-3 reply to Dave K's 2-2 CHF info, EF & more
Danny Jackson 2-3 intro
Tom S 2-3 pro-time terminology question
Linda ?'s 2-3 reply to Hope M's 2-2 thanks - I'm learning
Pam E's 2-3 reply to Brenda H's 2-2 please e-mail me with address
Ben B's 2-3 reply to Jon's 2-3 cath results
Jon 2-5 AOL & graphics quality tip
Ginger 2-5 homocysteine question
Jon's 2-5 reply to Ginger's 2-5 you're right - it probably isn't good
Dede G 2-5 is there a diabetes&CHF link?
Jon's 2-5 reply to Heather S' 2-3 right-sided heart failure
Robin W 2-5 update, Paul S question & more
Bill D's 2-5 reply to Tina's 2-3 failing hearts, heart rates, meds & more
LeeAnn D 2-5 update, test results & more
Linda ?'s 2-5 reply to Ginger's 2-3 selenium
Sigmund B 2-5 LVAD article of interest
Toni ? 2-5 heart-type symptoms - seek help
LeeAnn D's 2-5 reply to Toni ?'s 2-5 second opinion a must & more
LeeAnn D 2-5 seek low sodium bread machine recipes
Ginger 2-5 chat room behavior request
Donna R M's 2-5 reply to Pete E's 2-2 magnesium levels & arrhythmia, & more
Christy 2-5 seek info on disturbing new symptoms
Robin W 2-6 see Times article about movie
Bill D's 2-6 reply to Danny Jackson's 2-3 chemo induced CHF, info & more
Carolyn H 2-6 update, Disability refusal, seek lawyer & more
Jon's 2-6 reply to Carolyn H's 2-6 insurance companies, attorneys
Robin W 2-6 seek books for children about transplant
Bill D's 2-6 reply to Toni's 2-5 doctors, BP & more
Pete E's 2-6 reply to Christy's 2-5 beware asthma diagnosis & meds - be sure
Candy's 2-6 reply to Christy's 2-5 be sure - see your doctor
Hope M's 2-6 reply to Jon's 2-3 cause of my CHF
LeeAnn D's 2-6 reply to Christy's 2-5 fast/hard heart beats & more
Luc D 2-6 saying hi, update, how's Liz?
Jon's 2-6 reply to Luc D's 2-6 CHF care, Liz
Wendy H's 2-6 reply to LeeAnn D's 2-5 bread makers & low sodium recipes
Bill D's 2-6 reply to LeeAnn D's 2-5 recipe source
Brenda H's 2-6 reply to Pat L's 2-2 thanks, & time frame question
Brenda H's 2-6 reply to LeeAnn D's 2-5 great meeting you, our files, & more
Jon 2-8 prayer request, posts timing
Brenda H's 2-8 reply to Dede G's 2-3 younguns hiding here somewhere - e-mail me
Don G's 2-8 reply to Bill D's 2-6 jazzing up the basic recipe
Susan L 2-8 update, coming surgery, diabetes & CHF, poem & more
Liz J 2-8 hey - I'm home!
Colleen 2-8 update - good news!
Jennifer R 2-8 does anyone understand these test results?
Gail M 2-8 questions about CHF improvement
Bev T 2-8 defibrillator questions - multiple firings
Heather S' 2-8 thanks, fear, cath & more
Jon's 2-8 reply to Heather S' 2-8 fear & bravery, cath
Gary M 2-8 have a-fib & CHF, what should I ask? & more
Linda ? 2-8 lack of bladder control question
Jon's 2-8 reply to Linda ?'s 2-8 somewhat similar problem & more
Sharon J W's 2-8 CoQ10 and Coumadin
Luc D 2-8 to Jon
Gaile 2-8 update & CoQ10 dose question
Jon's 2-8 reply to Gaile's 2-8 CoQ10 dose
Lauren's 2-8 reply to Colleen's 2-8 positive attitude, this site & more
Bill D's 2-10 reply to Gail M's 2-8 questions, answers, info & more
Bill D's 2-10 reply to Heather S' 2-8 caths are a cakewalk, I say
Bill D's 2-10 reply to Gary M's 2-8 CHF info, fatigue & more
LeeAnn D 2-10 EF importance & more
Ruthie A 2-10 update, severe chest pain/SOB episodes & questions
Jon's 2-10 reply to Ruthie A's 2-10 episodes, panic attacks & more
George Murray 2-10 what steps can I take for now?
Lee R's 2-10 reply to Gary M's 2-8 welcome, info, support & more
Lee R's 2-10 reply to Jennifer R's 2-8 can you call your doc for info?
Doug K's 2-10 reply to Jon's 2-8 assistance programs available, maybe?
Jon's 2-10 reply to Doug K's 2-10 so far, so good
Sharyn 2-10 update, question about daughter's serious illness
Jon's 2-10 reply to Jennifer R's 2-8 T-wave meanings
Wendy 2-11 35, mother of 2, seek support & info
Ruthie A 2-11 you must get the right doctor!
Ginger's 2-11 reply to Jon's 2-10 panic attacks, ICQ numbers needed, Bill & more
Jon's 2-11 reply to Ginger's 2-11 panic attacks & heart size
Samantha 2-11 what is normal Vo2max result?
Candy's 2-11 reply to Jon's 2-10 ER examination experience
Al H's 2-11 reply to Ruthie A's 2-10 anxiety attacks & more
Renee P's 2-11 reply to Sharyn's 2-10 welcome back, questions
Renee P's 2-11 reply to Gail M's 2-8 heart size, EF, meds, cures & more
Renee P's 2-11 reply to Linda's 2-8 bladder control
Renee P's 2-11 reply to Ruthie A's 2-10 seeming panic attack & result
Jon's 2-11 reply to Renee P's 2-11 that's one scary ride
Marilyn 2-11 seek help with questions, heart size & more
Roger G 2-11 Jon edits too much
Jon's 2-11 reply to Samantha's 2-11 Vo2max scores & more
Susan 2-11 have arrhythmia, talking ICD, have questions
Katie ? 2-12 heart transplant question
Candy 2-12 update, EF up, thyroid & more
Tom S 2-12 anyone else get this type chest pain?
Madelyn J 2-12 very bad RFA experience
Jon's 2-12 reply to Madelyn J's 2-12 things to watch for
Linda 2-12 electric shock for heart rhythm question
Jack W's 2-12 reply to Susan ?'s 2-11 doctors, meds, getting good care & more
Liz J 2-12 update, getting better & more
Bill D's 2-12 reply to Susan ?'s 2-11 arrhythmia, info, options & more
Bill D's 2-12 reply to Jon's 2-11 heart size becoming normal
Jon's 2-12 reply to Bill D's 2-12 heart size and typicalosity
Jon 2-12 update on my family & more
Bill D's 2-12 reply to Wendy's 2-11 info, right-sided failure & more
Bill D's 2-12 reply to LeeAnn D's 2-10 EF importance
Bill D's 2-12 reply to George Murray's 2-10 healthcare, info, meds & more
LeeAnn D's 2-12 reply to Susan ?'s 2-11 meds vs defibrillator & more
Jon 2-12 posts & to Susan & LeeAnn
Heather S' 2-12 reply to Renee's 2-11 incontinence & possible solution
Jennifer B 2-12 ablation experience different & more
Jon's 2-12 reply to Jennifer B's 2-12 RFA, I don't know the numbers & more
Jamie S' 2-12 reply to Madelyn J's 2-12 RFA experience
Linda ? 2-12 bladder control & some good news
Felix O 2-12 am I cured? questions
Sharon J W's 2-12 reply to Katie ?'s 2-12 some post-transplant numbers
Lee R's 2-12 reply to LeeAnn D's 2-10 importance of EF number
Virginia R 2-12 Coreg & diabetic blood sugar tip
Kay 2-12 SSD requirements question
Jon's 2-12 reply to Kay's 2-12 if anyone knows, please write
Jon's 2-13 reply to Jennifer B's 2-12 arrhythmia recurrence after RFA
LeeAnn D 2-13 turning yellow - should I worry?
Jon's 2-13 reply to LeeAnn D's 2-13 maybe - suggestion
Tom S 2-13 sharing a chuckle
Brenda H 2-13 are hot baths okay?
Jon's 2-13 reply to Brenda H's 2-13 as I recall,
Pam E 2-13 bladder control
Paul S 2-15 update
Pat L's 2-15 reply to Brenda H's 2-13 hot tubs & baths, CHF
Linda ?'s 2-15 reply to Brenda H's 2-13 hot baths & CHF
Margie F 2-15 cath-type procedures & anxiety
Karen K 2-15 hi, update, hot tubs, exercise & more
Jennifer B's 2-15 reply to Tom S' 2-13 people's questions
Jay Q's 2-15 reply to Pam E's 2-13 stunt-peeing & more
Ben B's 2-15 reply to Katie's 2-12 transplant numbers & more
Jon 2-15 bad days & hot baths
Ben B 2-15 anyone use Activan or related drugs?
Tom S' 2-15 reply to LeeAnn D's 2-13 may need to see doctor soon if,...
Liz J 2-15 update & thanks
Ruthie A 2-15 update, swallowing difficulty & question
Tina ? 2-15 questions about exertion, feeling my heart
Mercer Sherman 2-15 Crohn's Disease, site, & more
Chuck Lewis 2-15 doc turned patient, intro, questions
Arlene B 2-15 intro, low sodium recipes available here
Gus R's 2-15 reply to Kay's 2-12 SSD, psych evaluation experience & more
Jon's 2-15 reply to Gus R's 2-15 SSD, judge & psych evaluation
Ben B 2-15 lower leg blood vessel bumps, cardiac index
Renee P's 2-15 reply to Brenda H's 2-13 hot tubs & CHF
Mark E's 2-15 reply to Brenda H's 2-13 hot tubs & CHF
Jennifer B 2-15 what is venous congestion?
Ben B 2-15 should Coreg be started at home?
Jon's 2-15 reply to Ben B's 2-15 Coreg start-up
Pat E 2-15 intro, seek others in same boat
Candy's February 1 reply to Linda ?'s January 31, 1999 - Hello, I think I can say for most of us here, we are all scared about some aspect of our illnesses. I am at times. I'm getting better about that. I used to be scared all the time. Once you learn more about your illness, you will feel like you have more control over your life and won't feel so scared. This is a good place to get support and gather information on your heart. Hang in there. CMPotila@aol.com
LeeAnn D, February 1, 1999 - Hi, With all the talk about Coumadin, I thought I'd share my experience. I was up to 10mg a day and bruised easily. I had read in a couple of magazines - not an article, but little sidebars, that aspirin was a good substitute. I asked my cardiologist if I could be switched to aspirin therapy and he immediately said "Sure." That was the end of my weekly pro-time tests, my having to watch eating things I love like eggs and salads, and the end of my bruising easily. I also have a very low EF (has ranged from 8 to 18). I know this isn't for everyone and definitely not for patients with a history of clots buy hey, you can always ask. LeeAnn from Phoenix, DCM, age 38. email@example.com
Renee M's February 1 reply to Dee W's January 29, 1999 - Hi Dee, It's good you found Jon's Place. There is a lot of good information here. I have had DCM for 5 years. I have always had a weight problem. In 1994, I lost some weight and managed to keep it off, by some miracle! After that, no matter what I did, I couldn't lose another pound. Recently, I was diagnosed with diabetes. I went to see a dietician, who gave me a new eating plan. You really had to watch your portions of food and the total amount you ate. I had to eliminate sugar but learned how to work any food into this plan. I have not felt deprived, even though it's a big change. You can imagine my surprise when, after 3 months, I had lost 20 pounds! I have found that the key to weight control for me is portion size. Any diet that tells you that you can have unlimited amounts of anything is not going to work. Good luck, Renee. AuntOnay@AOL.com
Renee M's February 1 reply to Regina R's January 30, 1999 - Hi Regina, By all means, you must get blood tests at a regular interval if you take Coumadin. In our family, we don't seem to get sick when our pro-times are sky high. Why that happens, we don't know and neither do the doctors. I had bruises on my legs but my father, who has CHF, had no symptoms whatsoever. He has had pro-times as high as 50, without having symptoms. The doctors have told us this can be dangerous. If you are like us, there's no way to manage your Coumadin without regular tests. We have them monthly, and sometimes weekly, when having problems. Good luck, Renee. AuntOnay@AOL.com
Margie F's February 1 reply to Regina R's January 30, 1999 - Hi, I also have been on Coumadin since November. My testing was once a week at first, then every 2 weeks until it was stable. Now it's once a month. Did the doctor's office give you guidelines on how to manage your diet? There are a lot of foods that will throw off the results. If you need more information, I'm sure Jon's site could help but if not, I could send you some general information. Make sure your doctor keeps up on this or find a new one! MFisher238@aol.com
Linda ?'s February 1 reply to Jon's January 31, 1999 - Hi Jon, I was diagnosed with CHF. I wish my doctor had called it cardiomyopathy. The word failure was a real downer! I may not look very bright but I am degree'd and can handle 6 syllable words. What little I know of my disease, I have discovered mostly by bullying my doctors and reading. I know I am suffering from a mild depression but I am an artist and I don't want to take any meds that will dull my senses. What do you think? firstname.lastname@example.org
Brenda H's February 1 reply to Tina's January 31, 1999 - Hi all, I was wondering if anyone knows the regular size range for an LV, I know what my size is but would like to know what to compare it with. Also, Tina, about Digoxin, that is my doctor's opinion. Check some books out from the library on CHF. Good luck. Thanks. Brenda, EF 25%. Hansonfoxi@aol.com
Allen Cravener's February 1 reply to LeeAnn D's January 29, 1999 - Hi LeAnn, My doc is going to try some meds to solve my a-fib problems. He just wants to wait a few months to see if my heart continues to shrink down. So far, so good. If that fails, then I believe you are correct, a defibrillator may be an option. Thanks! Allen Cravener. email@example.com
Chuck D, February 1, 1999 - Hi everyone! I'm a newcomer to this site but have gained a great deal of info from all your posts. I was diagnosed with CHF on 10/18/97 with an EF of 20. I'm 47 years old and my doc says that excessive alcohol consumption was the cause of my condition. Since my illness, I've found that the medical community tends to compartmentalize their thinking. None of these guys really pay attention to anything but their speciality. With this in mind, there is something I want to pass on. One week prior to my ER admittance, I was diagnosed with obstructive sleep apnea. I've noticed several of you mentioning having trouble sleeping. You might want to consider a sleep study. My study showed that I woke up 400 times in one night. If you snore or wake up in the middle of the night gasping for air, seriously consider having a study. After the study, I was issued a CPAP breathing device and have had no trouble since. I get a full nights sleep and have much more energy. I've been able to endure an aggressive walking program and my last MUGA showed an EF of 41. Neither my GP or cardiologist acknowledge any relationship between sleep and my improved EF but I feel there is a direct correlation between feeling better and the ability to exercise. Thanks for all your great posts. Best of luck to all! CDrysd1235@aol.com
Linda ?, February 1, 1999 - Hi, You all sound as if you can cause your doctors to talk to you and interact with you?! My cardioligist is still using his fists to represent my heart chambers and I expect him to pat me on the head any minute. Quite frankly, I'm angry that I am not as well informed as all of you seem to be. I'm going to raise all of my 4' 8" and get into someone's face - even if I have to stand on a chair to do it. firstname.lastname@example.org
Jon's Note: Check The Manual, in the "What can I do" section about "Get the right doc"
Linda Latimer, February 1, 1999 - Hello everyone, I just dropped by to say hi. I have been busy - going back to college. Can you believe it? Well, as long as I take it slow and easy, I can make it ok. This is my graduation semester. I am happy. I still have to go in for the heart surgery, but at a later date. The doctor said my heart had been under such stress for so long that it had swollen up. Then the year I have been off, the heart had gone back to it's normal size. The valve has opened just a bit, but he said it was just left of critical. Yahooo! I still have the atrial fib but it is caused by the stenosis, and the pacemaker is working beautifully. Thank you God, and thank you dear friends on the forum. With much love and graditude, Linda Latimer in New Mexico. email@example.com
Jon's Note: Good luck, and enjoy school - sounds like fun!
Barbara K's February 1 reply to Jamie's January 30, 1999 - Hi Jamie, I went into CHF after having my second child. My husband never goes to the doctor and did not want to have a vasectomy. I had a 3 year old and a 2 week old infant at home, and told him that if he didn't have a vasectomy, I would get pregnant. I would probably not make it but I would live long enough to carry the baby until it could be delivered safely! He would be left to raise a 4 year old, a 1 year old, and a newborn by himself. He made the appointment for a vasectomy the next day! Barbara K, age 35, DCM, in Arkansas. firstname.lastname@example.org
Jamie, February 1, 1999 - Hello, Shannon, I told you in the chat room the other night about selenium and the possible relation to PPCM. Through Jon's Links page, you can go Medline and look up selenium defiency and PPCM. It's abstracts from medical journals. If you have a relationship with your doctor, or if there is a teaching hospital where you live, they may be able to get the full article. Just copy down all the information at the beginning of the abstract, like name of journal, page, etc. I still take a selenium supplement every other day of 200MCG. I used to take it every day till August of 1998, when my EF returned to near normal of 52% with no abnormal heart things. I am basically taking it till the bottle runs out. Talk to your doctor about it. Maybe he will order a special pathology test to check the serum level. I didn't have mine done, but my cardiologist said that it wouldn't hurt. Take care, Jamie, age 29, PPCM. JamieDan@prodigy.net
Jon's Note: Any hospital's medical librarian should order a study for you at no charge. Just go to the medical library inside the hospital and ask
Samantha B, February 1, 1999 - Hi, A while back someone mentioned that CoQ10 isn't effective unless taken with a fatty food, like cheese or peanut butter. Could anyone confirm this? I currently do not take with a fatty food, and I would hate to think that my $35/bottle is wasted. Samantha. email@example.com
Jon's Note: It hasn't been wasted, just not used as effectively as it should. The fatty food really helps. Gelcaps don't need it as much but it still helps - see The Manual
Muriel's February 1 reply to Gail M's January 29, 1999 - Hi Gail, I have been on a drug for Diabetes II for three years. I was in the 2, 3 and now maybe 4 stage. This is my third year. My medication has been free and they pay me gasoline pay at the end of each session. I have been treated royally. They take blood, urine samples each time and an ECG every so often. My blood sugar has been about 90 or so most of the time. Today it was 85 and if it continues lower, they decrease the dose. That doesn't help on your heart medication, but Jonšs advice is good. It depends on who you do it for. It sure helped when Ned's hospital bills and medication were so high. Good luck. Jon, I am keeping up with your family here and with my prayers. Love, Muriel.
Jennifer B, February, 1999 - Hi All, I haven't posted in a while and thought I'd give you an update. The doctors started me on Coreg and I couldn't tolerate it! The minimum dosage wiped me out and being a single parent and having small children to care for makes it impossible for me to continue. My whole body started aching like I had the flu continuously, not to mention the fatigue and off-balance feeling I had! My cardiologist will be pretty upset but my internist totally understood where I was coming from. He did say, however, that this will probably lessen my life expectancy considerably. He said I needed to "make an informed decision." I don't know about the rest of you but quality of life is very important to me. I would rather my children remember me with at least some energy than to remember me wiped out all the time and looking like death warmed over (slightly). Hopefully, attitude makes the biggest difference because I am determined to live a long time! From now on, when someone asks if I "am dying," I will say, "No way! I'm living." firstname.lastname@example.org
Jon's February 2 reply to Linda ?'s February 1, 1999 - Hi, That's a tricky question. Some anti-depressants can dull your senses and others are just as likely to make you restless and a bit hyper. Discuss this with your doc and your local pharmacist - who is an expert on drugs and how to find info about them - and see what your specific options are. Then, a discussion of those drugs might help you choose. Jon.
Milo, February 2, 1999 - Hi, Here are some excerpts from "Who Gets Sick" by Blair Justice, PhD, How Beliefs, Moods, and Thoughts Affect your Health
"It has been said that love cures people, both those who give it and those who receive it. If I told patients to raise their blood levels of immune globulins or killer T-cells, no one would know how, but if I can teach them to love themselves and others fully, the same changes happen automatically. The truth is: love heals. A cheerful heart is good medicine, but a downcast spirit dries up the bones. The doctor who fails to have a placebo effect on his patients should become a pathologist or an anesthetist. In simple English, if the patient does not feel better for your consultation, you are in the wrong game, call it placebo or what you like. Placebo is the doctor within. Placebos surely must have a direct effect on the immune system.
When the sick recover by the use of drugs, it is the law of a general belief, culminating in individual faith, which heals. A doctor who tells a patient that there's no hope is making an enormous assumption in presuming his power is the only one that can restore health. Telling a patient he is going to die is tantamount to a curse. The patient believes it, so it comes true. Healing does not rest in the hands of a selected few but in the hands of every human being. No matter what physicians do, they can only augment the healing process of the body itself. You carry with you the most powerful medicine that exists. Each of us has it if we choose to use it, if we learn to use it."
Milo. via email@example.com
Heather, February 2, 1999 - Hi, I'm Heather and I'm a 52 year old Aussie getting a bit long in the tooth, chronologically anyway. I've just found this site (after vainly scouring Australia) and read up on The Manual and linked info. God bless Jon. I was admitted to the hospital just before Christmas (do not pass GO, do not collect $200), with severe CHF. A battery of tests revealed I had an ASD with Eisenmenger's syndrome (hole in heart with blood flow suddenly reversing direction), Pulmonary Hypertension and COPD. Wow. No wonder I'd thought my asthma was playing up! I was given a potential transplant status and all relevant tests that could be done regionally. Tomorrow I head for the big smoke (Melbourne) for first visit to a big hospital heart center.
Surprisingly, I'm not at all keen on the prospect of transplant and have asked why not repair the ASD and see if that improves matters? Local doctors appear to think it could actually make matters worse. Why? Surely a mended hole is better under any circumstances?
I lost miles of weight due to being unable to eat prior to diagnosis and never knew until the diuretics. Now I have a figure I haven't seen since I was 14, and can borrow my 14 year old daughter's clothes. I have been on continuous oxygen since coming home and take only diuretics (lasix and aldactone), and puffers (salbutamol and atrovent), plus a cortisone inhaler. This may all change when I get to the city but I feel better than I have in years, and now I've been able to get some extra lengths of oxygen tubing, I can get back to my beloved garden and feed my family properly instead of the other way around! I have miles of questions I want to ask, but would also love to communicate one to one with anyone with even slightly similar histories. I notice heart/lung and oxygen therapy does not figure highly on the CHF site, so everyone is welcome. A whole new world is opening up and I would bore my family silly!
On the weekend I was outside and my husband carelessly threw a cigarette butt down. It landed on the oxy tubing. There was a big pop'n'puff, and a huge cloud of smoke wafted past. He vaporised about 2 feet of cord! I decided he was practising a new method of euthenasia. I wouldn't have really minded if he and my son hadn't rolled around laughing hysterically! Does anyone know what prostacyclin is? There is some controversy over the drug in Australia at the moment. My e-mail is firstname.lastname@example.org. Although very cheerful generally, I do feel a bit alone and I would love to hear from you. Heather.
Pete E, February 2, 1999 - Hi everyone, I have been reading posts even though I have not been participating much. I have a question. I have recently gone through an episode where my magnesium level has lowered significantly. I have not been able to get a good answer on a cause. Does anyone have any knowledge or experience of this? Pete E. Peiden@skypoint.com
Keith W, February 2, 1999 - Hi, I am a 32 year old male who has just been diagnosed with CHF. Can someone please explain it to me in English? I also have IHSS and an AICD implant but this is new to me and kind of scary. Thanks. Keith W. email@example.com
Ben B's February 2 reply to Brenda H's February 1, 1999 - Hi, My echo report shows normal LV size range of 3.9 to 5.7cm in diastolic. Mine was 6.2cm - too bad for me. Now my questionis, does anybody know what TNF is? Apparently it is a chemical produced by the body that is very damaging to the heart. Anybody have any more info?
Jon's February 2 reply to Ben B's February 2, 1999 - Hi Ben, It is Tumor Necrosis Factor - a cytokine - and is believed to control body-programmed cell death (apoptosis) to some extent. Researchers are trying to use TNF for opposite reasons. Cancer researchers want to use it to kill or depress fast growing tumor cells, while CHF researchers want to keep it from killing or depressing heart cells and endothelial cells - the cells that line our blood vessels. That's the simple explanation. <g> In CHFers, the worse your symptoms (decompensation), the higher your TNF-alpha blood levels are. Interestingly, our hearts manufacture TNF! My doc wants me to consider an ongoing trial of a drug that suppresses TNF. Here's an article from the Lancet journal in April of last year:
There is accumulating evidence that inflammatory cytokines have an important role in heart failure. Blood levels of tumour necrosis factor alpha (TNF-alpha) are high in heart failure and are in proportion to severity of symptoms. Pentoxifylline suppresses the production of TNF-alpha. This study studied the effects of pentoxifylline on left-ventricular function and functional heart class in patients with idiopathic dilated cardiomyopathy.
We did a single-center, double-blind, randomised, placebo-controlled trial, in which 28 patients with idiopathic DCM were given either 400mg pentoxifylline 3 times daily or placebo. Clinical, echo and MUGA tests were done at study start, and after 6 months of treatment. Primary endpoints were functional class and left-ventricular function.
At study start, characteristics were similar in the 2 groups. Four patients died during the study period, all in the placebo group. After 6 months of treatment, the proportion of patients in Class I or II was higher in the pentoxifylline group than in the placebo group (14 of 14 vs 10 of 14), and ejection fraction was higher in the pentoxifylline group than in the placebo group (average of 38.7% vs 26.8%). At 6 months, TNF-alpha plasma (blood level) concentrations were significantly lower in the pentoxifylline-treated group than in the placebo group (2.1 vs 6.5 pg/mL).
Our results suggest that pentoxifylline improves symptoms and left-ventricular systolic function in patients with idiopathic DCM. These results must be confirmed in larger-scale trials.
Title: Randomised investigation of effects of pentoxifylline on left-ventricular performance in idiopathic dilated cardiomyopathy
Authors: Sliwa K, Skudicky D, Candy G, Wisenbaugh T, Sareli P - Department of Cardiology, Baragwanath Hospital, University of Witwatersrand, Johannesburg, South Africa
From: Lancet 1998 Apr 11;351(9109):1091-1093
Identifiers: PMID: 9660578, UI: 98322015
Title: Tumor necrosis factor in congestive heart failure: a mechanism of disease for the new millennium?
Authors: Ceconi C, Curello S, Bachetti T, Corti A, Ferrari R - The University of Brescia, Spedali Civilli, Italy
From: Prog Cardiovasc Dis 1998 Jul-Aug;41(1 Suppl 1):25-30
Identifiers: PMID: 9715820, UI: 98379677
and Medline for more. Jon.
Pat Latimer's February 2 reply to Brenda H's February 1, 1999 - Hi Brenda, After several echos, MUGAs and cardiac caths, I was told in 1996 that my heart was enlarged to 7.5cm from a norm of 5.0cm. Since being on Coreg along with other meds including Vasotec, the size has gone down to 5.6cm, which my internist called "high normal." Pat L. firstname.lastname@example.org
Bill D's February 2 reply to Heather's February 2, 1999 - Hi Heather, If the oxygen had kept the plastic tubing burning, you might have vaporized your nose. It doesn't sound like your husband and son realize how serious your condition is. Some of us get through to husbands and family by printing out The Manual. I don't blame you for not looking forward to a transplant. Have you read what Jon has to say? Still, sewing up the hole in your heart might be only part of the problem. I hope the cardiologist in the "big smoke" <g> explained it well enough for you to understand. Please come back and tell us what you found out. Bill. email@example.com
Bill D's February 2 reply to Tina's January 31, 1999 - Hi Tina, Please remember we're patients, not doctors. I have heard there is a discussion in medical circles as to whether digoxin is still useful. In that all the big heart centers are still prescribing it, I'd stay with it. There are dangers of an overdose, particularly if you're a seasoned citizen. The symptoms of an overdose are legion, starting off with loss of appetite, nausea, vomiting, diarrhea, extremely slow heart beat, blurred vision, a yellow or green or white halo seen around objects, drowsiness, depression, headache and fainting. Have I left anything out? <g> There are only 2 rare side effects, skin rash and hives. There's a slew of medications that are contraindicated, such as Cordarone, calcium channel blockers, amphetamines, sinus medications and be sure you don't get low on your potassium because of your diuretic. Trials have shown that digoxin won't make you live longer but it will help keep you out of the ER. Bill. firstname.lastname@example.org
Jon's Note: See this page>. In the low dose normally prescribed for CHF, it is relatively safe
Dave K, February 2, 1999 - Hi, I was just discharged from the hospital on 1/29/99, diagnosed with CHF, with all the problems that we all seemed to be blessed with! Since I never was really sick in my life, you can imagine the shock I had. Yes, I suffered from high blood pressure but I was taking meds that I thought had it under control. I am guilty of not monitoring my blood pressure. The one question I can't seem to get an straight answer for is survival rate. I'm at 15% EF. Can this be reversed? What would be the average for a 52 year old male? Please let me know your thoughts and experiences. Akwa1@aol.com
Paul M's February 2 reply to Jennifer B's February 1, 1999 - Hi Jennifer, Have you talked to your doc about reducing some of your other heart meds while starting Coreg? In some people, they can't tolerate the straight addition of Coreg without reducing something else. It might be worth considering. email@example.com
Candy, February 3, 1999 - Hi, After reading a couple of posts, I think I know what is causing some of my physical discomfort. My symptoms mimic what Jennifer describes in her 2-1-99 entry. Could it possibly be Coreg? I will have to ask my cardiologist on the 11th. Also, I get some of symptoms that Bill described about digoxin (lanoxin). Gee, I always thought I was a dizzy dame because I was born that way. <G> Having insight into how medications affect the body is important. I will have to pay closer attention to it. CMPotila@aol.com
Jon's February 3 reply to Candy's February 3, 1999 - Hi Candy, You're right - we do need to pay lots of attention to how meds affect us, but,..., deciding whether it's a med or the illness is incredibly tough, and takes close observation over a period of time. I may decide a med makes me dizzy but it might be disease progression, dehydration, a drop in BP when standing (postural hypotension) due to lack of exercise and de-conditioning, or something else entirely. So be sure to write down your observations for a few weeks before deciding what is the cause of a general symptom like dizziness. If you don't write it down at the time it occurs, your observations will probably not be accurate when you present them to your doctor. He needs accurate info to decide probable cause. Remember that if you look at all the possible side effects of aspirin, you wouldn't get within a mile of the stuff! The list, however, includes all the "possibilities," not the "probabilities." Jon.
Hope M's February 3 reply to Jennifer B's February 1, 1999 - Hi, Ask your doctor if you can try metoprolol instead of Coreg. They are both beta-blockers. I took metoprolol for a couple of years. I started first with 12.5mg, and over about a year's time worked up to 50mg. Then my cardiologist wanted me to try Coreg. I decreased the metoprolol and then started Coreg. I think I was on it for 3 months, and then had to stop it because of side effects. I'm back on metoprolol, but only at 25mg. I get too tired on 50mg. I'm taking it in a time-release form called Toprol XL. I don't have any side effects from it that I can tell. Hope. firstname.lastname@example.org
Hope M's February 3 reply to Linda ?'s February 1, 1999 - Hi Linda, Linda - Cardiomyopathy and congestive heart failure are not interchangeable terms. For example, my cardiologist said I have CHF, but it was very good that I don't have cardiomyopathy. I changed cardiologists because the one I started out with acted like he was king and his patients were little dumb-bells. Believe it or not, I go to his partner now!
The normal range for the Left Ventricle Interior Diameter during diastole (between contractions) is abbreviated as LVIDd and is 3.8 - 5.7. During systole (contraction), LVIDs, it is 2.2 - 4.0. I read that off my echo report. Hope. email@example.com
Jon's Note: That's in centimeters. Hope, what causes your CHF?
Hope M's February 3 reply to LeeAnn D's February 1, 1999 - Hi Lee Ann, I was diagnosed with MVP when I was 7 years old. I'm now 46. I was placed on prophylactic meds for 11 years. I took penicillin and buffered aspirin daily. I never knew why I was always getting bruises on my legs until I grew up and discovered that aspirin was the culprit. Now I've had my mitral valve replaced, and take Coumadin daily. I don't worry about foods at all, because there is just no way to accurately guesstimate the Vitamin K in every morsel, and besides, it all averages out over a few days. I do go in for pro-times once a month, though, and if I take a new med, whatever it is, I get tested in 5 or 6 days. Hope. firstname.lastname@example.org
Linda ?, February 3, 1999 - Hi, Has anyone tried St. John's Wart for mild depression? If so, did it cause fatigue or "fuzz?" My pharmacist recommended I try this and my doc says it can't hurt. Comments? email@example.com
Henry Ticknor, February 3, 1999 - Hi Jon, How can I get a complete copy of the consensus report on beta-blockers? I don't seem to be able to access the American Journal of Cardiology and would be very interested to read the report. Thank you. HRTick@aol.com
Jon's February 3 reply to Henry Ticknor's February 3, 1999 - Hi Henry, You can order it from the medical librarian at your local hospital. I have never been refused the courtesy of a free medical report via a hospital medical library yet. You can also ask your doctor for a copy, although this is usually the slowest way to get one. <g> Most online journals only release full-text versions to paying customers. Jon.
Jennifer B's February 3 reply to Paul M's February 2, 1999 - Hi Paul, You have a good point, however we have already reduced everything except Lasix, which I need because when I swell, I swell everywhere. One day without Lasix can result in my going from a size 8 pants to a size 12 from my abdomen, which seems to retain a large degree of the fluid. My shoes are the same way. My blood pressure swings but is usually low. Last night I was freezing with 2 heavy shirts on and the thermostat set at 80°. It stinks being 32 and feeling older than my grandmother! However, things could always be worse, things could always be worse, things could always be worse. :-) firstname.lastname@example.org
Ginger, February 3, 1999 - Hiyas, I hope everyone is doing well. I had my Ace inhibitor cut to half for 30 days and my BP went up to 180/100. So it's back to full strength. What is a gallop. My doctor said he heard no gallops. I didn't think at the time to ask him what it meant. Does anyone know ? Cya's at chat. Hugs, Ginger. email@example.com
Lee R's February 3 reply to Dave K's February 2, 1999 - Hi Dave and welcome to our club. <G> Survival rates are better than they used to be, what with Ace Inhibitors, beta-blockers, etc,..., and as Bill is fond of saying, the CHF road begins in New Jersey and ends in, well, I can't remember where. In his book, "Success With Heart Failure," Dr. Mark Silver writes, "Doctors are not God; no one knows how long you have to live." Learn all you can. Start here at Jon's Place (check out the Site Index) and watch the sodium, take your meds, exercise a bit when you can, but mostly, learn! You'rer only 52, I am 59, and we have a long way to go as far as I'm concerned. We have younger members and older members, and many who have outlived their physician's predictions. Your EF probably will go up somewhat on your "new" meds. You will have good days and not so good days, but there's still a lot to be thankful for. God bless, and hang in there with us and keep in touch! Lee. LeeRoush@aol.com
Brenda H's February 3 reply to Ben B's February 2, 1999 - Hi, Thanks Ben for your reply. My LV size is 7.8 now soit is still pretty enlarged. It was at 8.0 five months ago, so not much improvement. Oh well, I'll settle for any. Oh by the way, how's everyone doing through this cold and flu season? I've had a cold for 3 weeks now, uugggh. It's a real drag. Thanks again. Brenda. Hansonfoxi@aol.com
Ben B's February 3 reply to Dave K's February 2, 1999 - Hi, The reason why you're not getting a good response on mortality is because nobody really knows. The studies can be sort of depressing, but they are based on old treatment methods. A five year study is by definition five years old at inception. The important thing is to make sure you are on Ace inhibitors and a beta-blocker (if your doc says so). These meds also seem to improve many people's EF. As for me, my EF was read as 20% by one doctor, and 35% by another on the same cath! I picked 35%. Also, you'll probably increase your longevity if you read this site and follow the advice.
Jon's February 3 reply to Ben B's February 3, 1999 - Hi Ben, That EF discrepancy as measured by cath is very unusual. Cath actually measures the pressures inside the heart and arteries, and EF can be determined down to tenths of a percentage point. Echo is considered +/- 8% and MUGA is slightly less accurate than cath. Jon.
Ginger, February 3, 1999 - Hi, Who here takes selenium, and is it really helpful for the heart? Hugs, Ginger. firstname.lastname@example.org
Jon's February 3 reply to Ginger's February 3, 1999 - Hi Ginger, I no longer take selenium, but that's because I dropped almost all supplements for financial reasons. <g> I can't say if it definitely helps your heart but I do know that almost all chronically ill people have a low plasma level of selenium. It is also an anti-oxidant and may help the body utilize CoQ10. I would love to hear other people's opinions about it. Jon.
Lee R's February 3 reply to Linda ?'s February 1, 1999 - Hi Linda, I agree with you regarding the word failure and I think many others, including physicians, agree. Anyway, you mentioned some mild depression. I take a small dose of Prozac and it does not dull the senses (although my memory goes occasionally, but I think that's the lack of blood to the brain, or whatever - old age <G>). If you want to discuss it, please e-mail me. Take care, Lee. LeeRoush@aol.com
Lee R's February 3 reply to Chuck D's February 1, 1999 - Hi Chuck, and it's good to hear from you! I'm happy you are doing well with the walking program. I just finished up with cardiac rehab and it was absolutely great. I plan to continue with the program. Keep in touch. Bestest, Lee. LeeRoush@aol.com
Lee R's February 3 reply to Keith W's February 2, 1999 - Hi Keith, There's a lot of info here at Jon's regarding CHF. Please take a look at the Site Index. According to Dr. Mark Silver, "heart failure is a condition in which the heart does not adequately perform its duties as a pump of blood." But, hey, it's still pumping and that's the good news. <G> I don't know what IHSS is, and I hope someone else can help you, but I do have an AICD, and yes, they are a bit scary in the beginning. Mine was put in August of 1998 and on Christmas day I got my first shock. It scared me, but it wasn't as bad as people told me it would be. Actually it was a pretty good Christmas present when you really think about it because the doc said I was in a bad arrhythmia. It's like having an emergency room in your chest. Feel free to write me and good luck to you. Bestest, Lee. LeeRoush@aol.com
Jon's Note: IHSS is the same as hypertrophic cardiomyopathy - see Medspeak.
Janet T, February 3, 1999 - Hello All, I have finally had the opportunity today to catch up on all the posts. Everyone always has such good questions. I enjoy them all and have learned so much. Yesterday I went to my SSD hearing. Now I play the waiting game to see what they decide. I refused to play the game the government seems to want to play, and therefore have no idea if they will decide in my favor or not. My attorney seemed to think it went well. I feel like my medical records should speak for themselves and I shouldn't have to pour on the pity party. Maybe I'm wrong in this way of thinking, but I don't want to lie or tell half-truths to get SSD, like the attorneys and the government want me to do. Unlike them, I have certain standards I like to keep. My doctors thought it was ridiculous that it had gone this far in the first place. Enough said. It's out of my hands now.
I have felt pretty good since having the EP study and ablation. Nothing like a little "spot welding" as my husband calls it, to make a heart feel better! The increase in my Ace and going back on digoxin has been an added bonus. I'm on cardiologist #3 now and happy for it. For those of you who can't get a doc to talk to you, it's pretty simple - get a new one! I'm hoping this cardiologist will be the one, but if he's not - bye bye. I got a copy of my medical records and the second cardiologist had this to say, "Unfortunately, Janet is quite knowledgeable about cardiomyopathy." Needless to say, with a comment like that, do any of you wonder why I have number 3 now? I refuse to be an uninformed patient again and if the doc doesn't like my knowledge - bye bye. Remember that you choose how to view the world. Live every day like it will be your last! Janet. email@example.com
Dede G, February 3, 1999 - Hi, This is all new to me. I'm a 37 year old female diagnosed in early October, 1998, with CHF - supposedly a very mild case, with an EF of 43% - which they found out through an angiogram. I work full time, have a 10 year-old son who plays two sports at once (right now), and I have a loving husband. By the end of the week, I usually feel like I just can't go on. I'm so tired but I guess that's normal. My CHF was not caused by any of the obvious. They're blaming it on a virus. I'm scared but I'm trying to find out all I can. I've been reading Jon's Place Website as much as I can. Are there any other young (relatively speaking for CHF) moms out there whom I can talk to. Thank you Jon, for having this Website. I'll keep you all in my prayers. firstname.lastname@example.org
Heather S' February 3 reply to Bill D's February 2, 1999 - Thanks Bill, and to Anne, Pam and Sherrell, I'll get back to you all. Actually Bill, I think my family's laughter was caused by nervous relief that I hadn't had my nose vaporised, rather than amusement. Hope so! I'm back from the big city and still in a state of shock. All my vast new knowledge garnered all over the Net was wasted! "Double lung transplant", says he. "Wwwhattt?" I reply. "That's nonsense. Look how well I've responded to oxygen and a couple of lousy diuretics! What about Coreg? What about the other beta-blockers? What about Ace Inhibitors. What about,...,?" Well friends, apart from managing to show off a little, I got absolutely nowhere. To everything I suggested I received a standard response: either it was antagonistic to the lung medicines or useless for right heart failure. Curses. As I told Pam, after suffering the indignity of being left handed all my life, I have to go and contract right heart failure, not left, like everybody else. The only new-flavoured ice-cream I get is digoxin, but he's kind enough to allow me to try CoQ10 and calcium, magnesium and potassium supplements. Any words of wisdom?
All the notes I've downloaded have nothing to say about right heart and meds. My brother in Tasmania is a devout Christian and told me that he'd asked a healer friend of his to intercede with the "big fella" for a miracle for me. As we left the hospital, me pulling my little portable oxy trolley faithfully behind me, I told my husband about it and mentioned that it looked like I could well do with one. His only comment was a dry, "Don't hold your breath!" This time, it was me who started laughing immoderately in the hospital corridor, attracting scandalised glances and embarrassing my big spouse. Don't get me wrong. I'm not a churchgoer, but I do adore Jesus and God. I simply find it extremely egotistical (for me personally) to start demanding miracles when there are millions of wonderful humans out in our sorry world who can't even find food or are far far worse off than myself. I've had my down times, but when it all boils down, it's been a great life with the greatest of all blessings - loads of love and laughter! God bless. Heather. email@example.com
Jon's February 3 reply to Heather S' February 3, 1999 - Hiya Heather, I'm glad you made it back from the big city! I asked a cardiologist acquaintance to explain to me a bit about right-sided heart failure, the possible treatments, and differences from left-sided failure. I'll let you know what he says. For now, see this page.
Churches are just places to meet others who love God. There is nothing particularly worthy in going to church, just the fellowship one hopes to find there is worthwhile. After all, God saw to it that His word went in a book, not on a church wall. ;-) Ya can't demand miracles, anyway. <lol> After all, He really is "the big fella." I try to remember that I love to give things to people that they really, truly enjoy. It gives me pleasure and a deep sense of satisfaction. I get even more pleasure from providing things for my child. Why should it be different for God? He is also a father. I think He likes nothing more than to give His children gifts. After all, He loves us. So, don't hesitate to ask for gifts from God - let Him have the satisfaction of providing good things to His children, as we all like to do. Jon.
Tina's February 3 reply to Bill D's February 2, 1999 - Hi Bill, I know that it helps your heart contract stronger but my heart rate goes low at times. It goes down to around 46bpm. I was also wondering if you knew anything about enlarged hearts, because the doctor told me that my heart was enlarged. Also, I know I haven't taken any blood test yet for my level of digoxin or potassium. I'm not sure how often they usually test that. Would you happen to know? Thanks for your help. It means a lot to me.
Bill D's February 3 reply to Keith W's February 2, 1999 - Hi Keith, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more you learn about CHF, the longer you can live with it. The best place to learn is right here. Click on "Site Index" at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions including what you need to ask your doctors. Jon prides himself on his use of plain English! Bill. firstname.lastname@example.org
Jon's Note: I do, but not always for good reason. I swear Medspeak is contagious! <G>
Bill D's February 3 reply to Dave K's February 2, 1999 - Hi David, Welcome to Jon's Place. This is the best place to find the answers to all the questions that your doctors didn't tell you. Go to the top of this page an click on the words: "Site Index." You should start by reading "The Manual." Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, how long you'll probably live and interesting stuff like that! Most of us get our lowest ejection fraction reading when they did the first cath at the hospital. Mine was 17 but after a couple of months on the right medications, it climbed to 35. At 6 months, it was 41. After that, I leveled out at 37. Bill. email@example.com
Danny Jackson, February 3, 1999 - Hello all, I am a 37 year old female. Ten years ago, I had non-Hodgkins lymphoma. Two years later, I had congestive heart failure from too much chemo. My ejection fraction was 21%. My lungs were filled with blood and my heart was enlarged. On top of that, I had a blood clot inside my heart. My heart function went back to normal in 3-6 months. I used CoEnzyme Q-10, vitamin E, beta carotene, epa and primrose.
As of the first of February 1999, I was having trouble breathing when laying down. I knew what it was. I got the echo, chest x-ray and blood workup. It showed I am operating on an ejection fraction of 15%. After talking to my doctor, he is convinced this is caused by a viral infection that landed in my heart. So here I go again. It would be, and is, easy for me to say "Why?" Instead, I just keep on getting better. I have many more details if wanted. It is late. Good night and God bless you all.
Tom S, February 3, 1999 - Hi, Okay is it "Pro Times" or "Pro Thrombin Times" when one is discussing the monthly, and sometimes bi-monthly bloodletting, for those of us who have been relegated to the rat cage, where we are self-administer warfarin (rat poison and favorite World War I chemical weapon), better known in some circles as Coumadin? To wit, I found at a site defining the "PT clotting" test thusly "Pro Thrombin - A test used to measure the activity of a blood clotting factor (thrombin). This test may be used to evaluate excessive bleeding. Abnormally low factor II assays may be seen in the following conditions: congenital deficiency of factor II, fat malabsorption, heparin administration, cirrhosis, vitamin K deficiency, and warfarin administration."
Jon's Note: Same thing - Pro-time or PT for short. Actually, many doctors/labs are now switching to INR <g>
Linda ?'s February 3 reply to Hope M's February 2, 1999 - Hi, Thanks Hope, my ignorance is what brings me to this spot on the Web, but I am learning.
Pam E's February 3 reply to Brenda H's February 2, 1999 - Hi Brenda, I tried to e-mail you as requested, but keep getting it returned. Please e-mail me again with your address. Pam. firstname.lastname@example.org
Ben B's February 3 reply to Jon's February 3, 1999 - Hi Jon, You're right about the EF discrepancy. I'm pretty sure the 20% value was an initial assessment by my cardiologist, probably more based on my last echo reading than reality. The 35% was on the hospital report of the cath, released about 2 days later, and seems to be more official. I like it better anyway. I'm going to ask my cardiologist about it.
Jon, February 5, 1999 - Hi everyone, I ran across an article by another Webmaster about Aol graphics quality. I have never used Aol, so I don't know if they are as bad as he claims, but here is the tip he gave:
Attention AOL subscribers: The Web does not have to be a blur. This may go under the heading of dah to many of you who long ago figured this out, but since I know many AOL users over the years have complained about the poor resolution of graphic images on Web sites, I thought I'd pass along a solution our Webmaster stumbled upon Wednesday. Apparently "use compressed graphics" is the default setting in AOL for its customized internal browser. To see graphics closer to how they should be seen, follow these instructions:
While in AOL but without the browser in use, go to the "Members" pull down menu at the top of your AOL screen, choose 7quot;Preferences" and click on the "WWW" icon. Select the tab for "Web Graphics7quot; and then de-select the 7quot;use compressed graphics7quot; option check mark. Launch the AOL browser and re-load a page you've seen before. You should notice a huge improvement in graphic clarity, though it still won't be as good as a true version of Internet Explorer.
Ginger, February 5, 1999 - Hiya, It's me again. I don't post for a month and now it seems everyday something is coming up. <lol> My step-father has CAD and had a triple by-pass 2 years ago. I got him to take CoQ10. Well, yesterday he went to the drug store to get some and asked someone at the store to help him find it. Dunno if it was the pharmasist or not. Anyhow, they took him to it and also told him to take Homocysteine too. Well I looked it up and everything I can find on says it increases the risk of CAD. Am I missing something here or reading something wrong? Does anyone know anything about Homocysteine? Hugs, Ginger.
Jon's February 5 reply to Ginger's February 5, 1999 - Hi Ginger, Here's what I had on the old hard drive already about homocysteine:
From: Internist & Cardiologist Edition v39.n21:3, 1998
Healthy Diet Urged for Cutting Homocysteine, CHD Risk
By Jason Kahn, Medical Tribune, 1998 Jobson Healthcare Group
"Because of increasing evidence that homocysteine, a naturally occurring byproduct of protein metabolism, is an independent risk factor for heart disease, the American public should make sure to eat a diet rich in folate and other B vitamins, which can lower levels of the amino acid. But aside from that, no other steps should be taken, such as screening the U.S. population for homocysteine levels, according to a statement released here last month by the American Heart Association (AHA) at its annual meeting.
'Until there is convincing evidence of both a predictive relationship between blood homocysteine and cardiovascular disease and a benefit of homocysteine lowering, its role will remain unproven,' said Ronald Krauss, M.D., one of the authors of the AHA statement and a senior scientist at the Lawrence Berkeley National Laboratory in Berkeley, California. Dr. Krauss added that physicians may want to test homocysteine levels of certain patients at high risk for cardiovascular disease who appear otherwise healthy, but that this would be an individual decision, and not an AHA recommendation. In addition, for individuals who cannot or will not consume enough vitamin-rich foods, vitamin supplements may be an option for lowering homocysteine, he noted.
'The message is that diet is a major controlling variable for homocysteine, and that a side benefit could be a reduction in homocysteine and cardiovascular disease,' said Robert Eckel, MD, chair of the AHA nutrition committee and a professor of medicine and physiology at the University of Colorado Health Sciences Center in Denver. The current Recommended Dietary Allowance for folate is 400 MCG per day, but most Americans eat around 200 MCG to 250 MCG from such food sources as citrus fruits and leafy green vegetables. This, however, does not take into account the recent fortification of the U.S. food supply with folate. In 1996, the government began adding folate to grain products such as cereals and breads, largely because the nutrient helps prevent pregnant women from having children with neural-tube defects.
'We still don't know if reduction of homocysteine reduces cardiovascular risk,' noted Paul Ridker, MD, a cardiologist at the Brigham and Women's Hospital in Boston. He presented data at the conference showing that high homocysteine levels were a risk factor for cardiovascular disease (CVD) in apparently healthy women. In a group of 366 women, those who had the highest levels of homocysteine were 2.6 times more likely to develop CVD later in life than those with the lowest levels of the substance. 'Those on multi-vitamins had lower homocysteine levels at baseline,' he noted. Overall, those who developed CVD had significantly higher levels of plasma homocysteine than healthy women at baseline (14.1 micro-mol vs. 12.4 micro-mol), according to the study.
In other research, investigators led by Peter Wilson, MD, director of laboratories at the National Heart, Lung, and Blood Institute in Bethesda, Maryland, found that homocysteine was linked to stroke in the healthy elderly. Over a 10-year period, increasing levels of the substance were associated with steady increases in risk for stroke in 1,947 men and women with an average age of 70 at the beginning of the trial. Those with the highest levels of homocysteine had a 77% higher likelihood of suffering a stroke than those with the lowest levels after adjusting for other factors such as cigarette smoking, gender and concomitant medical conditions. Nevertheless, 'we looked at all of this evidence,' Dr. Krauss said. 'And despite the evidence of a relationship between homocysteine and cardiovascular disease, not all studies have supported the relationship. We feel that the cost of testing and the unproven nature (of the relationship between CVD and homocysteine) all argue strongly against population-wide screening for homocysteine at this time.' "
Dede G, February 5, 1999 - Hi, I placed my first post yesterday morning, and already I find myself reaching out to all of you. I just found out yesterday evening that I now have diabetes, too. Is there any connection between Congestive Heart Failure and Diabetes that anyone knows about? It seems to me by reading the messages posted on Jon's Place that a lot of people also have diabetes. email@example.com
Jon's February 5 reply to Heather S' February 3, 1999 - Hi Heather, I got an answer from Luigi T, who is an Italian cardiologist/pulmonologist specializing in CHF. He replied to my questions about right-sided heart failure and here's a summary of his information (any misspellings are mine):
The right side of the heart collects the blood from systemic veins and puts it into pulmonary circulation (through the lungs). The right ventricle has a crescent shape - imagine it as a bellows. It handles varying amounts of blood but with a low pressure (normally the pressure in the torax veins is - 5 mmHg and in the pulmonary artery is a maximum of + 20-25 mmHg). The right ventricle's wall is thin and flexible. When it fails, it is unable to give an adequate blood flow to the lungs and therefore to the whole body and the pressure in the systemic veins rises. There are many causes of right-sided heart failure: right ventricle infarction or cardyomyopathies like right ventricle dysplasia; volume overload like Tricuspid (valve that parts the atrium from the ventricle) lesion; rise in pulmonary pressure - pulmonary illness, or pulmonary embolism, or for an unknown cause - primary pulmonary hypertension.
Symptoms are due primarily to systemic congestion of liver and abdomen, so there may be loss of appetite, pain in abdomen, bloating and nausea after meals. Patients may get jaundice and have noticeable edema (swelling) of the leg and abdomen. There may also be fatigue due to reduced heart output. Shortness of breath is usually only present if the abdomen is enlarged or if the right ventricle failure is severe.
The therapy is substantially the same as that for left-sided failure but with some differences: Diuretics relieve congestion and edema but it is important to avoid abrupt falls of venous pressure, so you have to start with a low dose and work up. For the same reason, it is important to follow a low sodium diet and in severe cases, fluid restriction. Nitrates are useful in these patients. They dilate the veins and so tend to relieve the symptoms of the congestion of the abdominal organs. Ace inhibitors may be useful also in these patients because they may reduce the pressure in the pulmonary "tree" and and oppose retention of water and sodium by the kidneys. Digoxin is often used but may be harmful (arrhythmias) in patients with respiratory problems. Moreover, digoxin is a "light" stimulator of the strength of heart muscle contraction but may provoke constriction of the pulmonary arteries, so its effect may be null over-all. In severe cases, low dose IV dobutamine may be useful to enhance the strength of the heart's contraction.
Response to oral therapy may vary because intestinal congestion may reduce the absorption of the drugs, and liver malfunction and lowered kidney function may alter the metabolism of the drugs. Beta-blockers and CoQ10 have not been tested in these patients.
Robin W, February 5, 1999 - Hi all, I've been reading the posts but just not posting. I am still waiting to be admitted for transplant. I still don't know where. Same old, same old. I was wondering if anybody has heard from Paul S. Th elast time I heard, he had slipped into a little worse rejection. I'm hoping not seeing a post means he's home with his family and having the time of his life. Let's all hope the best for him. Robin. firstname.lastname@example.org
Bill D's February 5 reply to Tina's February 3, 1999 - Hi Tina, Wow! I think a heart rate of 46 is awfully low. Mine pumps along at 60 plus and my wife Rosie's gallops along at 90. Does your cardiologist know about this? Some of us have had pacemakers implanted that fire off an electrical impulse if our heart beat gets too low. You are seeing a cardiologist, aren't you? Don't forget we are not doctors! You can't put much faith in what is listed as a certain drug's side effects. Jon wasn't kidding about all the side effects that are listed for plain old aspirin. It's list is 3 times as long as for digoxin. <g> My cardiologist orders blood tests for me about twice a year, more, if I tell him I'm having problems. Tina, you would know all about dilated cardiomyopathy if you'd looked in Jon's "Site Index." When your heart has problems pumping enough blood, it's left ventricle dilates itself. It swells up in an attempt to increase the size of the chamber that pumps your blood. The problem is that it keeps on swelling 'til it's walls are so thin it can't pump at all. The Ace Inhibitor and the beta-blocker slow down the swelling so we live longer at the cost of not being able to do much. Bill. Gee Heather! email@example.com
LeeAnn D, February 5, 1999 - Hi everyone, In regards to selenium - I eat brazil nuts. I keep them in the car. I really can't reccommend anything I do to anyone though, because although I am holding my own, I'm definitely not better. All I know is that the docs are amazed at how well I function. Because I was asked to be in a research study of patients with an EF below 15, I became suspicious that my doctor was fudging to me on the result of my echos. My first doctor last April was hard to pin down and would just keep saying it was around 15. I was later told by the transplant team it was under 10. My MUGA for the transplant evaluation in July was 18, and the echo 23. In October, I had an impromptu echo and I guessed it was the same and my doc agreed. After, I asked the tech exactly what it was and he said, "What did you guess again?" and when I told him, he said "Ya, that was it." Well, I just found out it was 12. So, I guess I'll have a talk with my doc about "protecting" his patients from the truth. Anyway, I don't qualify for the research study because I don't exhibit enough symptoms. See ya. LeeAnn in Phoenix, DCM. firstname.lastname@example.org
Jon's Note: Get a copy of your medical records and you'll have the truth on everything!
Linda ?'s February 5 reply to Ginger's February 3, 1999 - Hi, I've taken selenium for more than five years prior to CHF. I began taking it because I had smoked for many years and my primary-care doctor suggested that I take it daily to repair damage that I may have done to my lungs through years of abuse. I've continued taking it with no ill side-effects. email@example.com
Sigmund B, February 5, 1999 - Hi all you youngsters. Since I am too old (77) to expect to receive a transplant, I've been looking into the status of LVAD's (Left
Ventriclar Assist Devices). Much research is in the works. These were originally designed for end term CHF patients and contain a blood pump that relieves the strain on the left ventrical during blood transfer to the aorta. The pump was driven by an external electrical or pneumatic source. The idea was to keep the "tethered" patient alive until a heart could be located. Much research has gone into the device. Today there are some people now walking around with battery operated, totally implantable LVADs. Anyhow, my cardiogist saw an article in the New England Journal of Medicine that traces the history and operation of LVADs (started in 1984). I can't complain, since I've survived 2 heart attcks and 2 implants - a defibrillator and a pacemaker. Anyhow, I found the article in question at my local library, in the November 19th, 1998 issue. It is slanted to doctors but there is a lot of good material for the layman including sketches and photos. I hope some of you guys and gals find the material interesting and I'm sure the LVAD is something that will save many lives. God bless. sbegun@ hoflink.com
Jon's Note: Don't forget to check out the 8 LVAD articles on the Surgery page.
Toni ?, February 5, 1999 - Hi, I am a 29 year old mother of 3. I have had chest pain for about 10 years, with pain in my left arm and under my left ribs and breast. In July of 1998, I started having chest tightness. It gets tight and goes through to my back. I found out I had a hiatal hernia and they put me on meds. Well, 2 months ago, I started getting vertigo - really dizzy - and I went to the doc's. They said I had depression but I don't. I just started having this squeezing feeling in my chest and in the middle of my back and the middle of my neck through to my throat, and I cannot breathe well. They don't know what it is. They gave something to drink to numb me and I could breathe again. I had an echo done and it is normal, as were EKGs. They also say all my blood work is normal. It hurts too much to eat anything, so I have lost weight. My BP is up to 140/90. Sometimes, they won't give me anything. When I get up and do stuffI, I get tired very fast and run out of breath. I get light-headed and get that chest/arm/back pain but they say nothing is wrong with my heart! I am getting scared and don't know what to do. I have gone to lots of doctors for this. They want to send me South to a gas doctor beacuse they think I have gas trapped inmy throat, but I don't. I have been tired for years and sleep all the time. I can't lift things and get weak fast. When I sweep the floor, it starts to hurt badly. I am in need of help. Can anyone help me, please? What is it that I have? Please write to me soon. God bless you all. Hvenlygate@aol.com
LeeAnn D's February 5 reply to Toni ?'s February 5, 1999 - Hi Toni, I can relate to how you feel and how worried you are because I too have 3 small children, and because of my illness and meds, I feel tired a lot. I know - 3 kids can wear any mom out - heart disease or not! You know it sure sounds like your symptoms relate to CHF but I can't believe you could have a normal EKG and echo if you did. Really though, this Website is only patients and none of us have any qualifications to diagnose anything. I would however, highly recommend you see another cardiologist - or 2. It's definitely worth it. LeeAnn in Phoenix, DCM, age 38. firstname.lastname@example.org
LeeAnn D, February 5, 1999 - Hi, Does anyone have any yummy low or no-sodium bread machine recipes? I got a bread machine for Christmas and would love to try out some low sodium recipes! email@example.com
Ginger, February 5, 1999 - Hiya's, I have sort of a request to make about the chat room. We have been very lucky to have a doctor come sometimes to talk with us. On the nights that he is there, we need to watchout and not bombard him with questions. When all of us ask stuff at the same time, it gets confusing and the window scrolls by and stuff gets missed. So we need to try to ask him one at a time. I hope everyone is doing good and those of you who are new, check out our chat room times and come join us. We learn a lot from each other. Hugs and thanks, Ginger. firstname.lastname@example.org
Donna R M's February 5 reply to Pete E's February 2, 1999 - Hi Pete, I've had problems with low magnesium a couple of times. That comes as a result of diuretics, so I have been on Slow-Mag or Mag-64. I get both through Walmart but it is special order and they don't put it out on the shelves. Mag-64 runs about $4 a bottle cheaper and they are identical. Whenever my electrolytes are checked, so is the magnesium. When it has been low, I have had many more problems with arrhythmias. My V-tach and SVT would begin going into V-fib and my heart felt like it was quivering in my chest like a scared bunny. Basically, it helps heart rhythm. Hope this helps. Donna R M. email@example.com
Jon's Note: It is important - see Nutrient Stew.
Christy, February 5, 1999 - Hi, This may seem minor but I'm concerned. I've had 2 episodes in the last 9 days of very pounding, irregular heartbeat with accompanying high-blood-pressure headache. The first episode lasted 90 minutes, the second (today) only about 20. I was on several meds last week for bronchitis/asthma and I thought that was what caused the first incident, but today's was when I was calmly working. I still take 2 inhalers per day and have for about 4 months, but I am off meds for bronchitis. I took a Donnatal (IBS) last night for colon upset, but those have never bothered me before. What I'd like to hear about is a good Website at which to research this phenomenon, or I'd like to hear what others who've experienced this have learned. Thanks. firstname.lastname@example.org
Robin W, February 6, 1999 - Hi everybody, I just got finished reading the Sunday NY Times (Ok, I know it took me awhile). In the Arts & Leisure section, there is a review of a film by Robert Redford's son, James. It is titled "The Kindness of Strangers" and is a documentary that focuses on organ donations and transplants from the perspective of patients, donor families and survivors. James Redford has received 2 liver transplants. The film-makers are still seeking a distributor. The Times said when the lights came up after the screening, many teary-eyed audience members were seen fishing for their driver's licences and filling out organ donor consent forms. I haven't checked but you can usually get the articles on the Web at http://www.nytimes.com/. It was written by Jean Nathan. Robin W, email@example.com
Bill D's February 6 reply to Danny Jackson's February 3, 1999 - Hi Danny, We've had a lot of patients come through here whose CHF was caused by chemo and radiation. Sometimes I think the doctors blame a viral infection when they can't think of anything else! <g> Welcome to Jon's Place. He has a lot of interesting information hidden in his "Site Index." You'll be happy to know that there are 4.8 million people in the US who've been diagnosed with CHF. There are probably a couple million more that the doctors haven't figured out yet. Are you taking a diuretic? I usually take an extra one if I have problems breathing. Bill. firstname.lastname@example.org
Carolyn H, February 6, 1999 - Hi everyone, I have continued to read but haven't posted since September. I'm the severe tricuspid valve regurg who was hospitalized in June of 1997 with CHF. After being treated in Iowa and St. Louis, I went to Mayo Clinic in Rochester for diagnosis in 9/98. When I left, they told me to return in January of 1999 for a pig valve replacement. At that time (and I still have my original notes), I was told by the surgeon "Right ventricle is quite big. To prevent further deterioration and heart failure, you need to have the surgery. You have had right heart failure. We will replace your tricuspid valve with a pig valve. Your chances of coming through are excellent - 95 out of 100. The major concern is the fact that the entire right ventricle is very enlarged. That's the side which failed in June of 1997 and if the tricuspid valve is not replaced, it may fail again, which would mean death, most likely. The echo shows that the tricuspid valve is really wide open. Isolated severe tricuspid regurgitation is very uncommon. We don't have a good handle on what would be a good time to operate. The left ventricle is fine. Lungs are great. You asked about the episodes of pain in your chest of a pleuritic nature. Next time this happens, tell your physicians in St. Louis to look for clots in the lungs."
After I returned home for several weeks, I called back to speak to the surgeon about scheduling the surgery. He called me back and said that they had decided to postpone and wants me to come back on February 24. In the past week, I have finally gotten a determination from my Long Term Disability company. When I originally was hospitalized, my Short Term Disability carrier investigated and covered me for the full 6 months as a result of "Congestive Heart Failure." Toward the end of that 6 months, I filed for my Long Term Disability through my employer and the claim was denied. They said that they could see no reason why I couldn't return to my position as a Human Resources Manager full time. I filed an appeal and just finally received another letter stating the same thing. They "can find no evidence that I have ever experienced heart failure."
I'm sorry to go on for so long. My, I have been so depressed that this is the first time I have felt I could reach out. Does anyone have any thoughts on my condition? I swear to you I wrote down verbatim what the Mayo surgeon said and now he says that he didn't say that right-sided heart failure could result in death! Secondly, does anyone know of a good Disability attorney in St. Louis or anywhere in the Midwest, for that matter. I feel like I am losing it. God bless all of you for being there for me so many times. Carolyn. email@example.com
Jon's February 6 reply to Carolyn H's February 6, 1999 - Hi Carolyn, Welcome to the wonderful world of insurance companies. Your situation reminds me of the time I ripped up my shoulder at work (lumber mill). The company's insurance carrier sent me to 5, count 'em - 5 - doctors. They picked each doctor. All 5 doctors said exactly the same things for cause, diagnosis and treatment. That same insurance company refused to pay the medical bills when they came due, saying my shoulder wasn't hurt. They denied it all the way to a Work Comp judge who got quite angry at their representative and awarded me a very nice settlement. Insurance companies which pull these stunts hope you will roll over and play dead, so they can just walk away from your claim. Don't. Jon.
Robin W, February 6, 1999 - Hi all, I'm just wondering, has anyone come across any books or materials geared toward young children, concerning heart transplants? My god-daughters are 5 and 8. My degree is in child development and child psych so I've been doing all the play therapy and have really tried talking to them as much as possible without overwhelming them. As it's getting closer, they have really started to feel uncomfortable when the subject comes up and I have been looking for a book that puts the focus on someone else and away from them or me. Any literature you think may help will be appreciated. Robin W, age 31. firstname.lastname@example.org
Bill D's February 6 reply to Toni's February 5, 1999 - Hi Toni, If a good cardiologist says it's not your heart, it probably isn't. Just as a guess, I'd hazard that something is wrong with your esophagus. Maybe your next doctor should be a gastroenterologist. That BP of 140/90 isn't very high. I can "worry" mine higher than that. <g> Bill. email@example.com
Pete E's February 6 reply to Christy's February 5, 1999 - Hi, I had similar experiences when I was first diagnosed a little over 3 years ago. I was being treated for asthma for 4 months, and then my heart problems were discovered. Many asthma medications elevate blood pressure and heart rate. You may want to be re-evaluated for the asthma. Some of my doctors early on were reluctant to admit I probably did not have asthma and let me stop taking the drugs. Those doctors are no longer with me. Pete. Peiden@skypoint.com.
Need help with your low sodium diet? www.healthyheartmarket.com
Candy's February 6 reply to Christy's February 5, 1999 - Hi Christy, Have you discussed these symptoms with your doctor? If you haven't, it might be a good idea to contact him. These symptoms might be nothing serious or they could be serious and may require treatment. It's better to err on the side of safety by talking to your doctor. CMPotila@aol.com
Hope M's February 6 reply to Jon's February 3, 1999 - Hi Jon, You asked me what the cause of my CHF is. Well, the cardiologist has suggested 2 possibilities. One is that, because of my mitral valve prolapse, the left ventricle was trying to compensate for the regurgitation and developed scar tissue and became slightly dysfunctional. After surgery, when the left ventricle had to pump all of the blood just one direction, into the high pressure aortic chamber instead of into the low pressure left atrium (75% of the blood had been regurgitating), the left ventricle became even more dysfunctional and enlarged. The other possibility is that the surgery itself traumatized the left ventricle, causing it to become more traumatized and dysfunctional, or perhaps a combination of both. Anyway, my EF is 30%, LVIDd 8.3 cm, LAIDd 5.0 cm. Hope in California.
LeeAnn D's February 6 reply to Christy's February 5, 1999 - Hi Christy, I just experienced that "pounding heart" feeling - ironically - while I was in the waiting room to see my electrophysiologist! It only lasted for about 8 beats but afterward, my heart rate was about 20 beats faster per minute for a little while. He explained to me that my heart takes extra beats and that they aren't sufficient. They are too "shallow" to really count so my heart fills up with blood and the next beat feels really hard, thus the pounding effect. He said that 8 beats was not a big deal and not to worry about it because it was upper chamber. He also said that many people experience it for hours. He said that this type of arrhythmia wasn't life threatening, it just felt that way. My ventricular tachycardia is much more life threatening, which is why I have a defibrillator, but patients tend to not feel it or they only feel a kind of flutter. I don't know if this relates to your situation or not but I hope it helps! LeeAnn in Phoenix, DCM, age 38. firstname.lastname@example.org
Luc D, February 6, 1999 - Dear friends, I hope you all are doing better right now. With me, it's still the same. I have lots of chest pain again lately, but still I have to wait until May to see my cardiologist. It's a real shame for such doctors, how they treat us, isn't it?! Has anyone heard anything about Liz? Please let me know soon! All the best to you, my friend and have a nice day. Sincerely, your Belgian friend Luc. Luc.Deseins@ping.be
Jon's February 6 reply to Luc D's February 6, 1999 - Hi Luc, I'm sorry you are still having chest pain. It is a shame you don't get better care, especially since Belguim researchers are usually at the front of CHF research but your actual day to day CHF care seems to be behind the times. I am sorry. I got an update on Liz yesterday or the day before (memory - arrggghhhh!) - she is doing well and may be going home soon. :-) Jon.
Wendy H's February 6 reply to LeeAnn D's February 5, 1999 - Hi, I also got a breadmaker for Christmas, for the sole purpose of making low sodium bread for my husband, the CHFer. In the recipe book which came with it, it said not to decrease the salt because it was necessary for the yeast to rise properly. It did say that a potassium salt substitute would work in place of the salt. In the hospital, we were cautioned not to use potassium salt substitutes at all, and I don't. However, I make this one exception for my hubby's bread. It works! The bread comes out just fine using the recipes in the book. I hope this might help you. Bon appetit! email@example.com
Bill D's February 6 reply to LeeAnn D's February 5, 1999 - Hi Lee Ann, I suggest you e-mail a guy by the name of Don Gazzaniga at firstname.lastname@example.org. He's having a no sodium cookbook published and he will probably be delighted to send you some recipes. I know this might sound like heresy but the next time I make his white bread, I'm going to make it a "very low sodium" loaf! Bill. email@example.com
Brenda H's February 6 reply to Pat L's February 2, 1999 - Hi Pat, Thanks for your reply on heart size. Did it take yours 3 years to go back to that size or was it quicker than that? Thanks again, Brenda, age 31, EF of 25%. Hansonfoxi@aol.com
Brenda H's February 6 reply to LeeAnn D's February 5, 1999 - Hi LeeAnn, It was really great getting together with you! Remember if you're ever in Washington, look me up, ok?! Hang in there, and I totally agree with Jon. Doctors work for us, we have the right to see our own files. You're a sweetheart and a great Mom. Brenda, age 31, EF 25%. Hansonfoxi@aol.com
Jon's February 8, 1999 - Hi everyone, I am having some problems with my non-cardiac meds. My doc tried adjusting them without much success. I see a specialist soon. Putting up posts may be erratic for a while, as a result, and because my energy level is very low right now. Also, my wife is headed for surgery to have her gallbladder out, and is in quite a bit of pain until then. Her cardiac electrical problem makes this risky, but ya gotta do what ya gotta do. On top of all that, her job is currently at risk due to corporate mergers and some truly bizarre corporate ideas about hospital management. Anyway, prayers are requested for Linda because she's sick, has a CHFer for a husband and a sick daughter. How she copes, you would have to ask Jesus. :-)
Brenda H's February 8 reply to Dede G's February 3, 1999 - Hi, This is just to let ya know there's a lot of us younguns out here. I'm 31 and have an EF of 25%. I was diagnosed 5 months ago. I'd like to hear from you if you want to e-mail. God bless, Brenda. Hansonfoxi@aol.com
Don G's February 8 reply to Bill D's February 6, 1999 - Hi Bill, Do you want to flavor that basic white up? Add a few tablespoons fresh rosemary and some garlic. You'll like it. firstname.lastname@example.org
Susan L, February 8, 1999 - Dear Jon and all, I have not posted in a long time but I have been reading your posts. I have been blessed by God and this site, and have found a life free of fear, living with my cardiomyopathy. I was told I had restrictive cardiomyopathy after a heart attack in 1989 - restrictive heart and lung. The restrictive may be in question but the fact that I am exercise intolerent and limited in my actions did change my way of living. Four years ago, I was told I had type 2 diabetes and now I am told that I will be going in for a hysterectomy due to endometrial hyperplaisa that has shown endometrial cancer. A lot of the medication I have taken over the years for the cardiomyopathy gave little warnings about increased blood suger and increased cholestrel and hormone changes. I do not know if this is what has happened to me, but I have read that a lot of you are also diabetic. How are you women doing in the other department? Oh well, I have drawn a lot of joy and fellowship from all of you and I would like to share a poem I wrote on a down day that pulled me right up
Am I dying? Who can say? Aren't we all going to die someday? I remember a time when I was dying for a Merry Go Round cake for my seventh birthday. I remember another time when I squirmed and wiggled while at my uncle's funeral, because I was dying to go to the bathroom. I was ready to die for a date, a new dress, a new car. I even went so far as to equate dying with every major wish, want or need I had. I'll just die if I don't pass the SATs. I'm dying to know if I made the sorority. If he doesn't propose, I'm going to die. I tie-dyed curtains for my pad in Pacific Grove in the early sixties, and I have dyed Easter eggs. It appears that a lot of my living was based on dying, even to the point of dying my hair. I know I share this passion for dying with others. The many who are dying for peace and quiet. I suppose not many will buy this piece of prose, because of "Death of a Salesmen." So I propose, "Death takes a Holiday." Oh well, my love to all of you who are really living and striving to live well. God bless you.
Susan L in San Martin. email@example.com
Liz J, February 8, 1999 - Hi Jon and everyone, I'm back and I am home. :-) Alive, thanks to all those prayers. I am still very weak, but am able to take a few steps with a walker. My son moved my computer for me, so when I am a little stronger, I can do more. Also, I'm still somewhat flaky, but slowly getting better. I just want everyone to know the prayers are working. Liz. EJa83911@aol.com
Colleen, February 8, 1999 - Hi Everyone, This site has gotten me through some really tough times! When I first found it, my EF was 10%, my AICD was a thorn in my side and my medication was way too much for me to believe. I am now so happy to report that after 14 months of battling PPCM and CHF, I am now up to a 50% EF, my heart size has returned to normal and my heart is functioning on the low side of normal! I have 4 daughters - age 6 and under - who are my inspiration. To any other moms out there, I am on my treadmill every morning for 40 minutes, watch my salt intake and have changed my eating habits forever! I truly believe in the power of a positive attitude. I remember an intern coming into my room and telling me I was a perfect candidate for a transplant. My redheaded temper flaired and I informed her I will work on the one I have! I make a joke out of my AICD now when there is a power outage. I will continue to work hard to be there for my girls! Take care and stay positive. Colleen. Wyldwood1@aol.com
Jennifer R, February 8, 1999 - Hello, I got my holter monitor results back the other day and the nurse said it was normal but with a slow heart rate and abnormal T wave. Does anybody know what this means? I have no clue. I don't see the doc for awhile and the nurse said she didn't know what it meant. Great, huh? I will get the results of my next echo on Tuesday or so. I can't wait to see how much I have improved. I feel pretty good right now. My BP is doing better now also. I would love to hear from anybody who knows what those results mean. Take care, ya'll. Jennifer, EF 45%, age 27. JRobi87102@aol.com
Gail M, February 8, 1999 - Hi, Please tell me how high EF can go, how much can it improve? Also, can an enlarged heart go back to normal size? Do arrhythmias ever go away? My big question is really, "Can a person ever get back to normal?" I guess I still cannot figure what's waiting for me down the road. I am feeling fine and doing ok. I just went to Shand's teaching hospital for a checkup and a workup to participate in the monoxidine trial. They said I was not a candidate because my EF had improved. Gail M. EF now at 40.
Bev T, February 8, 1999 - Gosh, here I go again. My defibrillator fired last night for the 4th time since last March. I'm so depressed and afraid of what my doc might suggest next. I guess I shouldn't feel too bad since I am still here to talk about it! I'm sure someone out there has had their's fire a "few times." What have your doctors said and what are the concerns of multiple firings over time? I go to the transplant team tomorrow as luck would have it, but the EP doctor is in another town. Any comments? Thanks, and may your angel be close to you. I know mine is! Bev T. Mtnmama008@aol.com
Heather S, February 8, 1999 - Hi, everyone,and Jon, thank you so much for taking the trouble to find right heart information for me. It's going to be invaluable when talking to cardiologists, because I'm rather timid with authority figures. Bill, I'm not brave. To be brave presupposes fear, and fear requires imagination. Phlegmatic types like me are too busy wondering if there's enough bread left to make the school lunches, to worry about whether I'll shuffle off during a lung transplant. It'll remain just words until they're actually pre-oping me. I'm more scared at the thought of a cardiac catheter test due next week. Brave is when you suffer through months of toothache rather than go to the dentist, then when the inevitable abcess forces you to surgery, you proffer your jaw to the dentist with tears streaming down your face. That's brave. Brave is so many of the people who have posted their bios that I've just been reading. I cried unashamedly for their pain and their loss and their courage and their whistling in the wind. I thought of Edna St. Vincent Millay's beautiful poem "Dirge Without Music." Do read it. It may make you weep also, but good tears. Perhaps I was also weeping for myself, but I'd rather laugh. I love to make you laugh. It's my form of attention seeking. I love you Bill and Jon and Ruthie and Betsy and Anne and Sherrel and Pam and Jill S and Betsy and all of you. I'll post again after the next big smoke visit to the Lung Centre, or if I have something interesting to contribute, or if I just can't help myself! firstname.lastname@example.org
Jon's February 8 reply to Heather S' February 8, 1999 - Hi Heather, I tend to think of bravery as denying oneself for the benefit of others, not necessarily in a big "all at once" way, but in the day to day grind. It sounds to me like you qualify just fine. Any other facing of personal dilemmas is really veiled self-interest, of the kind we must all follow, just to get by life's pitfalls and snares. That dentist's chair is a necessity and most of us put it off longer than we should until we are forced by pain to give in and go. Bravery? Naw. Cardiac cath is an intimidating procedure. Please check out the cath page. Knowing what's coming really does take the edge off. Jon.
Gary M, February 8, 1999 - Hi, This is my first time writing. I found out I had a-fib in 1980,and that I had an enlarged heart late in 1997. On December 11, I found out I have CHF. I was told not to lift or over-exercise and to stop working. I have been taking Digoxin on and off since 1980. December 11, I was put on Altace, Demadex, and warfarin (Coumadin). When I found out about my CHF, I was kind of shocked and didn't ask many questions. What are some of the questions I should be asking? Also, some days I am just so tired. It seems this started with the medication, or at least that is when I became more aware of it. Is this normal? Anything you can share with me will be greatly appreciated. Last but not least, thank you Jon, for having such a wonderful site. Gary M. Toriclown@aol.com
Linda ?, February 8, 1999 - Hi, Ok, don't tell me not to be embarrassed. I am, and that is all there is to that. It's easier to ask you if any of you have experienced a lack of bladder control, than it would be to take this to my doctor and have him suggest that I try "Depends." Is it a normal side effect of drugs? Am I the only one who has this embarrassing development? Is it "just one of those things?" email@example.com
Jon's February 8 reply to Linda's February 8, 1999 - Hi Linda, I have a lesser degree of that problem. I tend to "leak" since getting CHF. It is embarassing and impossible to prevent. This can be a symptom of some serious problems (in men, anyway) so I was checked out for them and didn't have any of the usual causes. It turns out - after long observation - that it comes from a specific non-cardiac med. I just live with the consequences. I'd hope anyone having problems similar to me or you will write you. It's a royal pain, and I sympathize.
Sharon J W, February 8, 1999 - Hi, I've read lots of posts about CoQ10. I'm a believer and so is my cardiologist. One thing to consider, however, is whether you should use it with Coumadin. My latest issue of the Cleveland Heart Clinic newsletter states that it "can prevent anticoagulants such as warfarin (Coumadin) from working properly." I'm not on Coumadin but I know I avoid some supplements because they make me bruise. I'm so lucky that my doctor is receptive to supplements, but he does want to know what and how much. He takes many of them himself. He has also encouraged cardiac rehab. I go one hour 3 times a week. Our insurance will pay for some of it, but I have benefitted tremendously, but some days, well, you know! God bless! S J W. firstname.lastname@example.org
Luc D, February 8, 1999 - Dear friend Jon, I have sent you so many e-mails and they all come back and I don't know the reason! I use the address that's on the site but still they keep coming back. I hope you can help me out on this one. Maybe if you like, send me a very small e-mail just that I can reply to it. Thanks very much, my friend, and thanks for all the work you are still doing for us! Take care and I pray we all may get better. Sincerely, your Belgian friend Luc. Luc.Deseins@ping.be
Jon's Note: On its way!
Gaile, February 8, 1999 - Greetings from Texas! I discovered Jon's Place during the Christmas holidays and have been reading regularly, but have never posted before. I'm 43 years old and have been diagnosed with DCM, CHF, and a complete left bundle branch block, EF 25%. After reading what you guys have written, I think my cardiologist has me on the right track: Lanoxin, Monapril, Demadex, Coreg and a pottasium supplement. I am, however, having trouble with Coreg. I've been treated for depression and anxiety for about 5 years, and I take Paxil and Elavil. Each time we try to increase Coreg from 3 to 6mg, I suffer severe depression. My cardiologist wants to switch me to Prozac because he believe its up effect will balance Coreg's down effect. Any comments from anyone who suffers from depression and is trying to take Coreg?
One other thing, my cardiologist sent me to a pulmonologist after I bombed the last stress test, the one with the clip on your nose and the tube in the mouth - you know the one? Jon's note: This is a Vo2max test My lungs didn't seem up to snuff. I now sleep with oxygen. Am I the only one out there experiencing lung problems as a result of CHF? I really do feel better (less tired) since using the oxygen at night.
Lastly, I am taking CoQ10, but only 30mg per day. I read Jon's info on CoQ10, but couldn't find a recommended dosage. Is 30mg a day enough? Thanks for reading and I hope to hear from someone. Jon, I told my cardiologist about your Web site and he asked me to get the Web address. He has posted it on the bulletin board in his waiting room so that all his patients can have access to your informative and supportive network. Thanks for what you do! email@example.com
Jon's February 8 reply to Gaile's February 8, 1999 - Hi Gaile, As far as I know, there is no "official" recommended CoQ10 dose for those with heart failure (or anyone else). I suggest writing Dr. Langsjoen. His e-mail address is at the top of the Nutrient Stew page. Jon.
Lauren's February 8 reply to Colleen's February 8, 1999 - Hi, I just happened upon this site tonight and I'm so glad. For one thing, I don't feel so alone. Colleen, I couldn't agree with you more. A positive attitude takes you a long way. I was diagnosed with CHF in January of 1995, having grown up with a congenital heart defect. I am 32 and religiously watch what I eat, take my meds and exercise. I have a wonderful husband who doesn't mind hiking, biking and skiing at a lesiurely pace. This summer we adopted a son (after much discussion with my cardiologist) and I fully intend to see him grow up. Am I scared? Very, but I am not giving up without a good fight.
Bill D's February 10 reply to Gail M's February 8, 1999 - Hi Gail, I apologize if I suggested this before. My short term memory is awful! <G> You can find better answers to your questions if you click on "Site Index" at the top of this page. Start by reading "The Manual." EF can go to about 70%. It generally improves from a low when you were first diagnosed, to a high about 6 months to a year later. An enlarged heart goes back to normal size only in a small percentage of us. I don't know if arrhythmias ever go away. Only a few percent of us actually get back to normal - mostly women whose DCM was brought on by a pregnancy and it cures itself in 6 months. Remember Gail, CHF patients are usually "chronic." They will have to learn to live with the ever worsening symptoms the rest of their lives. A patient, just like you - Bill. firstname.lastname@example.org
Bill D's February 10 reply to Heather S' February 8, 1999 - Hi Heather, I never minded caths, angiograms, angioplasties or stents. They are as easy as falling off a log. Anything that doesn't hurt is great. I've been in the cath lab so often I remembered everybody's name. They don't intimidate me, I intimidate them! The first one I had was boring. I wasn't positioned to see what was happening on the monitor. Nobody talked to me. I seemed to be under a refrigerator and it was taking forever. The second time I insisted I wanted to see the camera. I couldn't make heads or tails out of it. I told the doctor I wanted him to talk to me and tell me how he was doing. I even called for my "bartender" to squirt more lala juice in my IV. They got tired of hearing me and by golly, they gave me some extra shots! <g> Heather, I wouldn't steer you wrong. I have the lowest pain threshold on the planet. I wouldn't sit in the dentist's chair unless he'd show me 3 vials of Xylocaine! I'd rather have a cath than get my teeth cleaned! <g> Bill. email@example.com
Bill D's February 10 reply to Gary M's February 8, 1999 - Boy Gary, you've come to the right place. Welcome! This site is much larger than you think. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on "Site Index" at the top of this page. Start by reading "The Manual." The more you know, the faster you'll be able to start dealing effectively with CHF. You will learn what questions to ask your doctor. He'll know he's dealing with somebody who's reasonably well informed! The bunch of symptoms that are CHF cause your heart to dilate. It's trying to get bigger and pump more blood and oxygen to your cells. The problem is your heart keeps right on getting bigger. The muscular walls get too thin to pump. You meds try to slow down your heart's attempt to remodel itself. We all feel tired, Gary. It's part of CHF. Bill. firstname.lastname@example.org
Heather S' February 10 reply to Dede G's February 5, 1999 - Hi all, Hi Dede. You've probably had 100 e-mails, but I came across this yesterday while browsing: "Persons with diabetes have a 3 to 8 fold greater risk of heart failure. Women have a greater risk than men. Part of the risk coming from diabetes is associated with other heart failure risk factors such as high blood pressure, obesity and high cholestorol levels.However the disease process in diabetes also damages the heart muscle." Good luck, Dede. They welcomed me aboard only a few days ago and I already feel like part of the family! Hey Jon, apart from being a "know-all", you're rude, crude and abrupt! Us Aussies tell it like it is also, and I will too find a way to send an anonymous e-mail! End of cryptic reference. Ha. email@example.com
Jon's Note: ;-)
LeeAnn D, February 10, 1999 - Hi everyone, You know I feel like I'm an optimistic person who stays positive most of the time. I have to tell you guys, I'm tired of everyone's EF going up but mine, which has actually gone down :( I'm not all that bummed, though - this bumblebee's still flying :) I know, how about a bunch of you guys writing me and telling me how EF's not all that important! LeeAnn in Phoenix, DCM, EF 12, I guess. firstname.lastname@example.org
Ruthie A, February 10, 1999 - Hi all, This has been a challenging week, to say the least. I have started having trouble with angina again. It has been negligible at the very worst, and mostly nonexistent for the last 7 or 8 months. Now, I cannot walk more than 10 feet without chest pain. I have to sit and rest for almost 30 minutes before I feel fine again. The bad part is that I do not respond to the nitro tablets, possibly because I take a pretty high dose of Isordil. Anyway, the doctor finally gave me the paperwork to get a handicapped sticker for the car. I am to no longer attempt walking any more than is absolutely necessary. For exercise, I now have to take water aerobics because it is gentler on my heart. Joy. I would rather walk. Can you tell I am not fond of the water? <g>
Sunday was a real toughy. While getting ready for church, my heart rate went through the roof and I was gasping for breath. It also felt like a hand was pressing on the center of my chest. Hubby called the doctor, who said to check it out in the ER. So off I went, only to be told 3 hours later that I was just fine and that nothing was wrong. In fact, the ER doctor even questioned whether I had CHF! I guess he doesn't accept the fact that people can have right-sided CHF. Oh well. What no one seems to know is what happened to me. Even my regular doctor today didn't have a clue. I am beginning to wonder if I just experienced my first panic attack. If so, I don't know why. I am not afraid or panicked about anything. Does anyone else go through this? Am I on the right track, do you think? Should I pursue this further or do panic attacks just pass like a ship in the night? Since the doctors don't know, all I have to rely on is you all who have been through it. Ruthie. email@example.com
Jon's February 10 reply to Ruthie A's February 10, 1999 - Hi Ruthie, I sure was glad to hear your mom finally got a doc with his head screwed on straight! I get milder versions of the episode you describe. Luckily, Nitrostat does the trick for me. In my non-doctor opinion, they are not panic attacks. They could be angina, although you should be checked for other things, like stroke, especially if it happens again.
I have two other opinions which I'll take time to express. <g> First, while ER doctors can be real life-savers, most don't have a clue about CHF. One once told me to use Afrin nasal spray for congestion. For those who may be unaware, Afrin can kill you if your heart is weak and possibly arrhythmia prone! Second, I think doctors use the "panic attack" theory whenever they don't have a clue. When I was in high school, I had a bad episode of not being able to breathe and of being white as a sheet. The ER doc told my mom it was a panic attack. She took me to a chiropractor the next morning and he correctly diagnosed me as having a rib poking my lung. One x-ray and 20 minutes later, I was fine. So, don't decide you are having panic attacks on the basis of one ER doc's opinions. Look for and rule out all other causes first, then consider panic attacks as a possible cause. I am very interested to hear from others about this, though. Jon.
George Murray, February 10, 1999 - Hi everyone, I'll be 65 on the 24th of February, 1999. I never spent a night in a hospital till January 26, 1999. I was never on any kind of med till now. Now, I'm on 6 different pills - isosor, cardizem, furosemide, K-dur, Zestril & Lanoxin. I found this site yesterday and found a lot of info I could use. My doc appointment is February 22, at which time he will evaluate me for therapy. Is there anything I can do till then? Thank you. firstname.lastname@example.org
Lee R's February 10 reply to Gary M's February 8, 1999 - Hi Gary, and welcome to our club. <g> My doctor also does not want me lifting heavy stuff but I just got out of cardiac rehab and they had me doing 20 reps of 3 exercises with 4 pound weights and the treadmill and bike. If you can get in a program like that, it really helps because you are monitored and in a safe setting. There's a whole bunch of stuff here at Jon's Place that you can read up on. Try the Site Index and The Manual first. Are you on a beta-blocker or an Ace Inhibitor? They are standard meds for CHFers. I find I have good days where I can do quite a bit and days where I just relax and read. This is the greatest place for info and support. Keep in touch and let us know how you are doing. Take care, Lee. LeeRoush@aol.com
Lee R's February 10 reply to Jennifer R's February 8, 1999 - Hi Jennifer, I hate to be the devil's advocate, but why can't you call the doctor and get an answer? My physician's line is always open if you have a question and you do not have to wait for an appointment, but I'm sure happy you are feeling a bit better. Good luck with the echo. Take care. Bestest, Lee. LeeRoush@aol.com
Doug K's February 10 reply to Jon's February 8, 1999 - Hi Jon, I'm sorry to hear that you and your family are having such a rough time of things. Does the government have any health or support programs to help in such a situation where you are all sick? Best to you and your family. email@example.com
Jon's February 10 reply to Doug K's February 10, 1999 - Hi Doug, I really try to avoid the government whenever possible <g> If we get in a serious pinch, I'll turn first to our local church. Right now, we are doing the same thing that has gotten us through some very tough years recently - trusting in Christ Jesus. That, plus the prayers you all send have kept us going. :-) Jon.
Sharyn, February 10, 1999 - Hi Everyone, I just wanted to drop in again for a brief note and apologize for being so absent. With a recent new computer (finally!) and other things going on, I've shamefully not been posting or reading the posts like I used to. For those who remember, our grandson Noah is doing wonderful! He's even crawling now and no longer having seizures nor heart problems. Our daughter Alycia however, has been very ill and was in the ICU for several days. She developed something called septic shock and we almost lost her. The doctors still cannot tell us what caused it other than some sort of bacterial infection which spread rapidly throughout her body. Her BP bottomed out at 70/33 and she was unconcious for some time. She also had a temperature of 106 and internal bleeding. She has fainted twice since going home and her HMO doc say's it's because of her mitral valve prolapse, so she needs to rest more. With 2 other small children plus baby Noah, it's not easy for her to just rest. We've known about the mitral valve problem plus a leaky tricuspid valve for over a year. That's why they took Noah early by Cesarean. If anyone can offer me any insight on Alycia's condition, please e-mail me. She is our only daughter and I'm worried sick about this. Thanks. Sharyn. Desertcat5@aol.com
Jon's February 10 reply to Jennifer R's February 8, 1999 - Hi Jennifer, A cardiologist friend says that in the absence of other information, the T-wave abnormality may or may not mean anything at all. He just doesn't have enough info to say. Sorry. Jon.
Wenedy, February 11, 1999 - Hi, I am so glad I found this forum. I am a heart patient diagnosed with right ventricular dysplasia in September of 1998. I am 35 years old and a mother of 2. I am scared to death! I experience shortness of breath quite frequently. I also had an AICD put in December of 1998, which is a huge stressor for me! I need support from others with this type of heart disease. Most of the info I find is on coronary heart disease, not myopathies. Can you help me cope? I hope so. Thanks, Wendy. Figgy916@aol.com
Ruthie A, February 11, 1999 - Hi everybody! Just a note to underscore the need to find the right doctor for treating CHF. My mother was diagnosed with CHF last June and was treated by her PCP. He did almost nothing to help her except to keep doing blood tests. Finally, he admitted that her case was more than he could handle and sent her to a cardiologist. Within 10 days of her first visit and with the proper medication, Mom is breathing better than she has since she got sick! She is beginning to feel better and the swelling is completely gone except for her abdomen, but even that has diminished. I believe that if she had continued with her PCP, she would be close to death by now.
So my message to you is this: if you are not getting the care you believe you should be getting, ask serious and pointed questions. If you are still not satisfied, find another doctor. It could be the difference between life and death. Ruthie. firstname.lastname@example.org
Ginger's February 11 reply to Jon's February 10, 1999 - Hiya, Panic attacks with everyone is different of course, but I have them and take Xanax for them. What they are like is part of what you describe. Your heart races, your hands may tingle like they have been asleep, you may feel you have SOB and your face may feel hot and flushed. You also may actually feel and think that you're gonna die right there if someone doesn't help you. I never had them untill I started with the dang chest pains. If you have chest pain, a panic attack will make the pain and racing heart worse. Anyhow, that is my 2 ¢ on them.
I also am writing because I have a request. My computer crashed and I ended up with formatting C. So all of you who have ICQ and feel up to it, I need you to resend me your ICQ number. You can send it via ICQ or e-mail. My ICQ number is the same. I also need you all to resend me your AOL instant messenger name. Aren't computers fun?! <g> Bill, I didn't know it was not very often that people's heart size returned to normal. That was interesting to learn. Thanks. Stay well ya'll and cya's at chat. Hugs, Ginger. email@example.com
Jon's February 11 reply to Ginger's February 11, 1999 - Hi Ginger, That's interesting, no kidding. I sure sympathize with the chest pain being a trigger for your panic attacks. I get arrhythmia sometimes that makes my heart feel like it has stopped for 2 consecutive beats and if I ever do get panic attacks, I just know that will be when I'll get them! My heart returned to normal size over time with proper medication, although it is at the upper limit of normal. Anyway, I just assumed this was normal. Ace inhibitors often reverse the remodeling that makes our hearts so big when we are first diagnosed. Any source for that info about them not usually returning to an average size? You can e-mail it if you want. Jon.
Samantha, February 11, 1999 - Hi, What is considered the normal range for a VO2 Max test. I read The Manual, but it doesn't describe what is considered normal. firstname.lastname@example.org
Candy's February 11 reply to Jon's February 10, 1999 - Hello Jon, I had a similar experience in the ER. About a week after coming out of the hospital, I ended up in the ER because I felt like death warmed over. My daughter brought me to the ER in the city she lives in. Anyway, the doc put an IV in me and then he started to talk to me about depression. I thought this doctor had just examined me. I stopped him in mid-sentence and said "Wait, you don't understand. I was just diagnosed with CHF and I feel depressed but that isn't the problem." He did a complete turn-around and began examining me for a physical problem. I ended up spending the night with dehydration and too much potassium. The point is that ER doctors are more prone to not see the patient. CMPotila@aol.com
Al H's February 11 reply to Ruthie A's February 10, 1999 - Hi, Isn't it amazing how most of us have to come to forums of this type to get an explanation of what is going on with us? We wonder what is going on, what we should do, do we give in and go to the emergency room and put more burdens on our loved ones? Ruthie, I don't know if I have experienced a true panic attack but it has certainly come close several times. Recently, many watched on TV how the coach of the Atlanta Falcons (Dan Reeves) had bypass surgery and bounced back so quickly. In today's sports section of The Times-Picayune newspaper (New Orleans), I read an article about our coach Mike Ditka and keeping in mind what I had read about your situation earlier, I am going to give you a quote from the newspaper and perhaps it applies to you or to someone else:
"On February 2, Ditka, the Saints coach, had a cardioversion after being placed on blood thinners in preparation for the event. He had experienced a fluttering sensation in his chest about two weeks ago and during the week preceeding Super Bowl XXXIII. 'What happens is your heart flutters,' his wife said, 'So it gives a little bit of sensation in there. It's like an anxiety attack. That's what he was feeling and that's why he decided to get checked. But it was not like heart or chest pains or anything like that. It was just a little bit of an anxiety attack. He had an irregular heart beat and they shocked it to get it back to normal. It's a common thing when you have a heart disease, which he has. It's not major and it only took a couple of hours to do it.' "
Ruthie, yours sounds different because of the excessive pain in your chest and your inability to walk the distance you have in previous outings. When my heart went out of rhythm sync, my major problem was the dizzy spells accompanied with nausea. I noticed a difference in my heart rate pattern also. Take care, Ruthie. Al H. email@example.com
Renee's February 11 reply to Sharyn's February 10, 1999 - Hi Sharyn, Welcome back! I'm glad to hear that Noah is better. I hope your daughter gets better too. How are your cats? Renee P, EF 42, age 42. firstname.lastname@example.org
Renee's February 11 reply to Gail M's February 8, 1999 - Hi Gail, When I was admitted to the hospital in December of 1996, my heart was twice the size of a normal heart and my EF was 12. My father died at age 36 of the exact same thing I have now. When I went to the hospital for my last echo, they said my heart was down to a high normal size. My EF is 42, so I asked the doctor why do I still feel like heck? If my EF is as high as it is, does that mean that I am "cured?" Not! He said that basically the meds are keeping me alive and if I quit taking them, I wouldn't be around next week. The high EF is mostly due to the Lopressor or Coreg, whichever you are on. It makes the heart function as well as it can along with all the other meds that also help. So I guess that what he was telling me was, this is the so called top of the hill, the only way off it is down, and it's just a question as to how fast I fall. Renee P, age 42, EF 42. email@example.com
Renee's February 11 reply to Linda's February 8, 1999 - Hi Linda, This is for women only, men can skip this message. Leaks are the pits. My family doctor said the diuretics are to blame for leakage. He suggested to go to the bathroom on a regular basis or the minute you feel the urge. He also suggested that you wipe, stand up for 5-10 seconds, and sit back down, wipe again. It works for me. Also, panty liners work during the allergy season, and when I have a coughy cold. See if these tricks work. For you men who are still reading this, you might try it yourself. Renee P, EF 42, age 42. firstname.lastname@example.org
Jon's Note: I found the panty liners uncomfortable
Renee's February 11 reply to Ruthie A's February 10, 1999 - Hi Ruthie, I too had a so called panic attack. The doctor switched my med because my insurance didn't cover normal meds, only generic. A week later, I was in my doctor's office waiting for my regular visit. I didn't feel very good, with nausea, dizziness, heart pounding, but thought it might have been the flu. They weighed me and put me in a exam room and closed the door. By the time the doctor came in, I could not feel my lips, my fingers and toes. They were all tingling. I couldn't seem to breathe, like someone was sitting on me. Needless to say, they called the ambulance, my first $500 ride for one block, and by the time I was wheeled in, my heart rate was over 200, BP was off the chart, and my tongue was swelled up, my arms were contracted and curled into my chest. My toes were curled up and my back was arched up. They thought I had a seizure at the doctor's office, but the ER doc said they thought it was just a panic attack and to always carry a paper bag with me. They gave me nitro under the tongue at the doctor's office, which gave me a nasty headache later. I think it was a reaction from the generic meds because they switched me back to the original meds and I felt fine after that. Whatever it was, I sure hope that doesn't happen again. Renee P, EF 42, age 42. email@example.com
Jon's February 11 reply to Renee P's February 11, 1999 - Hi Renee, I had a similar ambulance trip a couple of years ago for the same symptoms. It turned out to be hyperventilation but wasn't related to panic. I now carry a small paper bag wherever I go, folded up. Dehydration can also cause this reaction. The spasm and inward curling/tightening of the arms and hands and the loss of feeling in the face and chest is really scary. I thought I was having a major stroke at the time. Jon.
Marilyn, February 11, 1999 - Hi, I have congestive heart failure and haven't talked to anyone before, so this may sound new. I have a blot clot in my aorta and a non-functioning left kidney. I also have a thyroid condition. Does the size of my heart, which is twice the normal size, mean anything? Maybe this will start a dialog to find out what is wrong with me. I have been this way for 10 years and can hardly walk any distance. Cagy2@aol.com
Roger G, February 11, 1999 - Hey all, I'm sorry for not posting in a long time. Jon was editing more than necessary. He probably takes as many drugs as I do. I don't have any advice so Jon will probably not change my post. Love you all. firstname.lastname@example.org
Jon's February 11 reply to Samantha's February 11, 1999 - Hi Samantha, 30+ is normal and 14 and under means the doc is going to start talking transplant. Man, I love that site search engine. I forget sometimes how much info is buried in my own pages until I start searching for something. Never could find a thing till this search engine became available for free! You can find it on the Site Index, Archives and Medspeak pages. Jon.
Susan ?, February 11, 1999 - Hello, I'm a 19 year old female. When I was 10, doctors said I had ventricular arrhythmia. A month ago, I had a seizure (or black-out spell, depending on which doc I'm talking to) and they said I have CHF. One doctor said I'd go on meds and be relatively ok but I should be put on the heart transplant list for the future. A new doctor says I need a defibrillator and not to even think about transplant. What I want to know is if there are any young people out there that have these problems. I'm very skinny and they gave me options of where in my chest to put it. Then a nurse told me I should have it put in my abdomen because it will stick out so much. I don't want to seem shallow but I really do not want this thing in me. I stopped visiting doctors for 2 years because I feel like such a lab rat. I'm getting that feeling again. They said there's a 10-20% chance of me arresting because of it. Isn't that the same chance I take of dying when I get into a car every day? (or at least used to - I can't drive now!) My doctor just says it's depression and I should see a psychologist but he doesn't know me at all. Another question - Has anyone not had surgery, just meds, and are doing relatively ok? I've seen too many doctors take a stab in the dark at diagnosing me. The seizure was my first symptom ever. I just don't want to do something so dramatic if they're not telling me all my options. email@example.com
Katie ?, February 12, 1999 - Hi, Can anyone answer this question for me? What has been the longest a heart transplant patient has survived after a heart transplant operation?
a. 3 years
b. 7 years
c. 12 years
d. 19 years
If you could answer that, that would be great! Thanks!
Candy, February 12, 1999 - Hi, I had my first time checkup with my cardiologist today. He stated my EF went from 20% to 40%. I explained that the 20% was by cath in August and the one done in November was 40% by echo. I said I thought there was a larger variance in reading from cath and echo, and asked what the difference was. He stated there wasn't that much of a difference and it did go from 20% to 40%. He said that was quite an improvment. Also, he asked about my thyroiditis and wanted to know if it has self corrected yet. He wants to give me cholesterol lowering medication but can't until my thyroid self-corrects. I'm due for a blood test for this anyway. He was happy to see improvement and hopes for continued improvement. He stated my thyroiditis may have caused my CHF. However, he did say I have a general weakening of the heart muscle. He says attitude is important, and stated he does not expect me to work at this time but maybe in the future. He said work is good for the spirit. He recognized the fatigue, shortness of breath, and tiredness. He said he wanted me to stay on the same meds at least until July unless there is a problem. He also emphasized exercise. This sounds better than what he told my daughter in August. She got the impression that I would rapidly progress and die, and there was nothing anybody could do about it. I'm also to have another echo in July. I wish I felt as good as my improvement said I should. CMPotila@aol.com
Tom S, February 12, 1999 - Hi, Does anybody else ever suffer from occasional attacks of a painful burning sensation that covers the entire chest area, at times very debilitating? These can last anywhere from 10 minutes to 2 hours. If so, has your doctor told you what it is caused by? Mine never offered an opinion of what it might be. I suspect it has something to do with fluid buildup in the lungs, hopfully that is all it is.
Madelyn J, February 12, 1999 - Hi, I just got back from a horrible experience with ablation to reduce PVCs. I was on the table for over 10 hours with no sedative. Not only did I experience pain that caused me to sieze up and scream, but I am left with worse PVCs than before the procedure. I know that ablation is most successful for patients with tachycardia, and I was given only a 75% chance that this would cure me, but none of the doctors warned me about the pain and the worsening of my problem. After 24 hours recovery, I still have a raw spot in my heart and occasional tingling that shoots down both arms. I was given a new beta-blocker to try for a few weeks. If that doesn't work, I'll be on Amiodarone again.
I don't think the 4 doctors and 3 nurses that worked on me for 10 hours expected to fail and they were surprised by the pain level. Their explanation is that the abnormal cells causing PVCs are diffuse and deep in the heart muscle - too hard to pinpoint and zap them out. I will ride this out, one way or another, but I hope my experience can serve as a warning to anyone seeking this treatment for PVCs. If they won't medicate you during the procedure, find someone who will. firstname.lastname@example.org
Jon's February 12 reply to Madelyn J's February 12, 1999 - Hi Madelyn, You are absolutely right! Patients should be asked if they want sedation before any procedure like RFA or cath. Also, doctors should have sedatives ready to give should they become necessary or should they need more than they thought. Ask these questions up front before making an appointment for any procedure! Also, remember that hospitals who do lots of a procedure every year do them safer. It is one area where practice may not make perfect but it makes a lot better! Ask, ask, ask before agreeing to any procedure. Thanks for the reminder, Madelyn - it is an important one. I sure hope your PVCs have a solution you can find quickly. I have had them and they can drive you nuts! I sympathize. Jon.
Linda ?, February 12, 1999 - Hi, Electric shock to the heart for irregular heartbeat - any info? Ginger9708@aol.com
Jack W (formerly Jack ?)'s February 12 reply to Susan ?'s February 11, 1999 - Hi, My problem is different than yours (dilated cardiomyopathy, CHF), but treatment for me has just been medication, and things are okay. I have 2 thoughts:
You've got to be assertive with healthcare professionals. I learned this lesson only after I had been back to primary care physician 3 times. The visit which got his attention was when I went in and told him I felt like I was dying. Spontaneously, I started crying. Yo doc, I'm in trouble here! Several weeks later, I learned my EF was 20, and had the diagnosis. It begs the question, what does it take to get their attention, but you gotta get their attention.
Second thought: I grant one has to get the attention of a good physician, but once you have their attention, these folks are not kidding about taking your meds. In my case, meds have made a huge difference. Nineteen months on Coreg, and feeling more confidence each day. This ain't fun, but feel more confident. EF is now 44.
Liz J, February 12, 1999 - Hi Jon and all, I'm able to get on the computer for short periods of time. My doc said it will take 6 months to a year to get over this surgery. I will be going to cardiac rehab when I am strong enough to go. I am starting to have a couple of hours a day of feeling better. Continue to send prayers your way, Jon, for you and your family. Liz J. EJa83911@aol.com
Bill D's February 12 reply to Susan ?'s February 11, 1999 - Hi Susan, Welcome to Jon's Place. We do have people your age and younger who post here. You'll just have to keep an eye out for their messages or go back and read some of the old ones to find their e-mail addresses. Despite the differences in age, dealing with ventricular arrhythmias is similar whether you are an unborn baby or ninety years old. Jon has collected hundreds of pages and links to just the information you're looking for. See here, here, here, and here. The black out and seizure were the same thing. Something's screwed up in your electrical system and the muscles in your heart weren't pumping. I assumed they called 911 and used a portable defibrillator to start you going again. I also assume it was the doctor who wanted to implant the defibrillator who told you had a 10-20% chance of "arresting" (as in cardiac arrest). What did the doctor say who wanted to treat you with medication and said you might have a transplant in your future? What was his appraisal of your chances of arresting? (%?) Your chances of dying in a car accident are only about 1/100 of one%! Susan, if I were you, and the medication doctor 's percentages are acceptable, I'd go the medication route. Remember, I'm an old geezer of 68! Your view point might be different!
Sticking defibrillators in people is big business. A year down the road, a company might come out with a defibrillator the size of a quarter and there you'd be with that big clunker! Who knows? They even might find a genetic cure for the disease. There is a lot of discussion going on between the proponents of non-invasive medical treatments versus invasive surgery. Every few years, a study indicates that patients are better off without all the bypasses, angioplasties and such, but the medical profession pays little attention. This is a $5,000,000,000 a year business and the cardiologists and cardiac surgeons aren't about to give that up. Here's a suggestion: Ask your doctor if he'd let you have a portable defibrillator. They aren't that expensive and they aren't that hard to use. Every place you go, keep it with you. All the airlines are putting them on their planes. It can't hurt to ask. Bill. email@example.com
Bill D's February 12 reply to Jon's February 11, 1999 - Hi Jon and Ginger, As a rule, General Bullmoose thinks that what's wrong with him, must be wrong with everybody. <g> After having CHF for 3 years, I asked my cardiologist, "On a scale of 1-10, with one being normal and 10 being ready to explode, how big is my heart?" His answer was, "5 to 6." Therefore, I got the impression that even if our hearts shrunk back to almost normal after 6 months of medication, the remodeling process was slowed but not stopped. I also gathered my opinion from reading the messages posted here. I'll be happy if you tell me I'm wrong! <g> Bill. firstname.lastname@example.org
Jon's February 12 reply to Bill D's February 12, 1999 - Hi Bill, I'd like to make you happy, but I honestly don't know the answer. I picked up the impression that remodeling goes back and forth, depending on disease progression, meds changes and length of time on them. Part of that impression came from this article. As you point out, unless I've researched something specific, I just tend to think my case is typical. My wife says I'm not typical anything except maybe pure Irish stubborn! Jon.
Jon, February 12, 1999 - Hi all, My wife is scheduled to have her gallbadder removed 2/23/99. Linz is getting a bit worse rather than a bit better. Prayers requested in both areas. I'm due to see a specialist to try and keep the infection from coming back a fourth time in 4 months but don't have an appointment yet. Despite all this, we're all pretty happy except maybe Linz, and we are all trusting in the only rock we know - Christ Jesus. Keep them prayers a-rolling in! Liz, I'm glad to hear you're on the way up that hill. When you get to the top, I hear the view is great! Jon.
Bill D's February 12 reply to Wendy's February 11, 1999 - Hi Wendy, Welcome to Jon's Place. In the past few weeks we've seen at least 3 messages from women who have right ventricular problems. You could read back and find them. They are probably e-mailing each other. Jon's site is for patients and their loved ones who have congestive heart failure. CHF is not a disease in itself. It's a bunch of symptoms brought on by a variety of heart diseases. CAD is just one of them. We all are plagued by swelling and shortness of breath. Most of us have dilated cardiomyopathy and problems with our left ventricle. See this page. Bill. email@example.com
Bill D's February 12 reply to LeeAnn D's February 10, 1999 - Hi LeeAnn, Your EF is far less important than how you feel. My cardiologist told me he had patients that were living a normal life with an EF of 10. I've often thought about that. I wondered if his patient's idea of a normal life was sitting in front of a computer? <g> Bill. firstname.lastname@example.org
Bill D's February 12 reply to George Murray's February 10, 1999 - Hi George, I know how it is. Before I was 65 and got on Medicare, I had private insurance with premiums of $6,000 and I had to pay 20% of the bill until I'd spent another $6,000! I managed to spend the maximum every year since I was 62! I'm now 68 and I haven't been in the hospital since I went on Medicare! Welcome to Jon's Place. In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. On the top of this page, click on "Site Index." You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and important questions you should ask your doctors. By and large, you're on the same medications as the rest of us. Bill. email@example.com
LeeAnn D's February 12 reply to Susan ?'s February 11, 1999 - Hi Susan, From what I understand, yes, there are several drugs they can put you on for arrhythmia. These are pretty strong drugs and some, while effective, can even have the side effect of sudden death. A defibrillator is there to get you out of any dangerous arrhythmia electrically, and it only monitors you when you need it. I would much rather have the defibrillator than take more medications that stress out my kidneys and liver and have various side effects. I have one and am fairly small (size 6/8) and most of the clothes I wear you can't tell at all. Even in my swimsuit, it isn't that noticable. I don't know where he gets his stats, but my electrophysiologist says that with congestive heart failure, over 50% of the mortality rate is due to arrhythmia and having a defibrillator lowers that statistic to less than 10%. LeeAnn, DCM, in Phoenix. firstname.lastname@example.org
Jon, February 12, 1999 - Hi everyone, If you like to post additional info at the end of your message about age and EF, please make sure I know which is which. The two can be easily confused by this poor Webworker. Thanks. Susan, there is good info on ICDs at this page. LeeAnn, there are SCD statistics here and more CHF stats here. Jon.
Heather S' February 12 reply to Renee's February 11, 1999 - Hi, There are reams of books and pamphlets written about incontinence. It's not just a problem caused by CHF meds. Just having a few kids is often enough, especially if you don't keep up those pelvic floor exercises the good doctor nags about. It's a case of better late than never, and I'm positive you will find that the pelvic floor exercises will still be a great help to you now, even if you sneeze! You guys will have to find your own solutions I'm afraid. Whatever the more extreme feminists say, there is still a distinct biological difference.
Jennifer B, February 12, 1999 - Hey Guys, I have an extremely wonderful story to tell. Sunday I went into bradycardia that stayed in the 40s range, and for a heart that is used to beating over 100 beats per minute, it was awful. I experienced nausea and blacking out. However, the next night, right as they were ready to let me out, they discovered Supraventricular Tachycardia. One episode that almost, well, it was the worst moment of my physical life. So they transported me an hour away to my big time cardiologist and did an EPS with ablation the next day. It took less than 3 hours. I was sound asleep during it and for the first time in years, I don't even have PVCs! This coming from a person that had 45 a minute! It was a total success and the next day I had a normal ECG for the first time in years, too. I am so pleased and the only thing I knew of it all was the little holes where the cath went in my neck and groin and the shot marks in my belly from the blood thinner. Nothing hurts, no bad memories.
Madelyn, I am sorry you had such a horrible experience with ablation. That sounds like a serious nightmare! I am so glad I didn't read that before mine or I probably would have elected not to have done it at all. My mother asked the doc if it would help my cardiomyopathy any and he said, "No, there are two parts to this heart problem - the electrical part which is the arrhythmia and the cardiomyopathy." The guy in the room next to mine was awaiting a heart transplant and had just had a biopsy. He was in good spirits, up and walking the halls and chit-chatting with the world. I must say that after this experience I am so grateful for the care I have, and for the opportunity to "remember" what a normal heartbeat is like. All this said, can anyone tell me if the ablation "sticks" or if arrhythmia return? Thanks for everything! PoisonousPen@hotmail.com
Jon's February 12 reply to Jennifer B's February 12, 1999 - Hi Jennifer, I know that some people who have RFA do have a return of their arrhythmia but I have no idea what the percentage is. If anyone knows, or has an info source, please post. Your RFA experience is what I would call normal. Still, everyone please take note of Madelyn's experience and be aware that not all docs are on the ball. That's why we need to be alert and informed, and maybe a bit suspicious. Jon.
Jamie S' February 12 reply to Madelyn J's February 12, 1999 - Hi Madelyn, I am sorry about what you went through with the RFA. I feel bad for having told you how well it worked for me. It must have been beyond nightmare. I am sending good thoughts your way. Jamie. JamieDan@prodigy.net
Jon's Note: Don't feel guilty - Getting a wide range of real life experiences is what makes this forum valuable
Linda ?, February 12, 1999 - Hi, Prayers and hopes to you all. Thanks for all the input on bladder problems. I guess we just have to deal with that one. Good news - my EF is up to 27 and I'm going to take the garbage out today. That may not seem like much to some of you but it's Everest to me. email@example.com
Felix O, February 12, 1999 - Hi everyone, Yesterday I received my last echo results. My EF is now 51%. My cardiologist told me my heart size is back to normal (high normal). Does this mean I'm cured? Is this EF improvement due to meds like Toprol and Norvasc, or is it real? Despite the fact that I feel fine most of the time, my doctor advised me not to exceed myself in my activities, and live quietly. Why is this guy always so cautious and conservative? Are DCM and CHF recurrent? firstname.lastname@example.org
Sharon J W's February 12 reply to Katie ?'s February 12, 1999 - Hi, Locally I know of one man who lived 13 years, starting a mall walking club after his surgery. He passed on a few years ago. There is a man in Mended Hearts who had passed his 14th year when I attended in 1995. I don't know his status now. This is the extent of my knowledge on the subject. email@example.com
Lee R's February 12 reply to LeeAnn D's February 10, 1999 - Hi LeeAnn, You wanted a bunch of mail on EFs and I'm sure you will get it. My cardiologist always tell me that numbers are not important - it is how you feel! If you doing pretty good, that is what really matters. EFs can vary from one hour to the next (at least that is what he tells me). Take care and keep flying! Lee. LeeRoush@aol.com
Virginia R, February 12, 1999 - Hi, For those of you who peek in on the other side, you know my Dad has been having serious problems with insulin regulation. He has been able to manage his blood sugar levels quite well for over 20 years, but has seen them bounce all over the place recently. No one had a clue. He figured it out. His Coreg had to be readjusted again back down to 12.5mg twice a day. He was cutting his 25mg tabs in half. This was not an accurate dose each time. He called the nurse and procured a new prescription for 12.5mg tabs. The end result was that his blood sugars are back under control. I certainly hope this helps someone else. Cheers, and I think of you all daily. firstname.lastname@example.org
Kay, February 12, 1999 - Hi Jon, First, my prayers are with you and your family. My question is regarding SSD, and the request for me to go for a psychological evaluation appointment. Does everyone go through this or do they just think I'm crazy? Surely they must have my medical records which completely support the condition. Any help on what to expect? Kay.
Jon's February 12 reply to Kay's February 12, 1999 - Hi Kay, All prayers gratefully accepted. That thanks goes to everyone here. :-)
SS has their own way about them and that way can be summed up in one word: inconsistency. It's what makes them so hard to deal with. Their practices change from state to state and from office to office. We never know what to expect. I know that a lot of people with no record of any psychological treatment or conditions are required by SS to get an evaluation for Disability. Go figure. If anyone reading this has been through such an evaluation, please post or write Kay about it. Thanks. Jon.
Jon's February 13 reply to Jennifer B's February 12, 1999 - Hi Jennifer, I'll hear about this. <g> I found the answer on my own page! The rate of recurring arrhythmia after RFA is about 6%. See this page Jon.
LeeAnn D, February 13, 1999 - Hey everyone, My brother and mom think I look kind of yellow. Is jaundice a side effect of anything? I do eat a lot of orange/red/yellow veggies. I'm wondering if I should call the doc. LeeAnn, DCM. email@example.com
Jon's February 13 reply to LeeAnn D's February 13, 1999 - Hi LeeAnn, Linz turned yellow once when she was a toddler. The doc discovered it really was from eating a lot of yellow vegetables! She loved squash. However, some meds can cause, or make you prone to, jaundice. Have you used the links at the Links page to check side effects of your meds? Jon.
Tom S, February 13, 1999 - Hi, I ran into an old friend the other day whom I hadn't seen since I was diagnosed as being terminally ill with CHF and given 3 to 5 years, blah, blah, blah. His first verbal reaction to our meeting besides, "How come you aren't dead yet?" Hmmm, nice question, thought I. My response, "I just couldn't seem to work it in my schedule for you." Thought I would share a chuckle with you all.
Brenda H, February 13, 1999 - Hi, Does anyone know what is a good heart rate while exercising for us with cardiomyopathy? I want to get in shape, but don't want to worsen my heart. Also, I was told that hot tubs are not good for us because it speeds up the heart rate. Is this true? Thanks, Brenda, age 31, EF 25%. Happy Valentine's day to you all. :o) Hansonfoxi@aol.com
Jon's February 13 reply to Brenda H's February 13, 1999 - Hi Brenda, Believe it or not, I actually read a study on that once, but it was a couple of years ago. You could probably find it in Medline. It said that warm/hot water immersion was okay for CHFers. It was considered bad for us for a long time, but no one ever bothered to test the theory! I still wouldn't go for a soak in a really hot "hot tub" but a hot bath should be ok. Jon.
Pam E, February 13, 1999 - Hi all, I had to add to the discussion about the peeing problem. A few things I have learned during my working: First, men, do you realise you get a better bladder emptying if you pee sitting down? While standing you don't fully empty your bladder. Another trick is that you should pee 3 times. Empty your bladder, then finish emptying your bladder and then empty the urine out that has just come from your kidneys. Another problem that you have is a residual urine. Try peeing and then see if you pee more by touching your toes, this is a trick that is very useful with some geriatrics. I don't mean you guys are geriatrics, though. :-) I hope this may help someone. Pam E. firstname.lastname@example.org
Paul S, February 15, 1999 - First, Hello to everyone. I have not posted in quite some time here on the forum and I suppose I have been lazy. Actually, I have had a lot problems with my joints, in my ankles and knees especially. I was having to ice them down nightly about 3AM and I was really hurting. I have finally had a good result from my biopsy and my rejection problem is finally coming under control. To Katie, I have read of several people who have made it for more than 20 years and I plan on my transplant lasting me 20 years. No one knows how long a transplant will last except for Jesus himself. I have had a rough 2 weeks, I had a lot of problems with fluids, salt, and now, cholesterol, then add on knee pain. Anyway, happy Valentine's Day everyone. You are all in my prayers and I know we will all survive this also, as is His will. email@example.com
Pat L's February 15 reply to Brenda H's February 13, 1999 - Hi Brenda, I read an article a few years ago about a study done in Japan with CHF patients (apparently CHF is a huge problem in Japan). According to the article, patients in the study were immersed in hot tubs every day and this resulted in a reduction in heart size. After I read that, I resumed use of hot tubs when accessible. I don't go in if the water is over 102°. I haven't had any ill effects but that's just me. Check with your doctor. It may not be ok for you. Pat L. firstname.lastname@example.org
Linda ?'s February 15 reply to Brenda H's February 13, 1999 - Hi, Hot baths were (are) not recommended in the presence of any swelling. Since most of us CHFers experience swelling of legs etc, it was once a blanket statement, "No Hot Baths!" However, if no swelling is present, I take hot baths with no ill effect. They tend to relax me, if that is my current need. email@example.com
Margie F, February 15, 1999 - Hi, The last time I was in the hospital, I had a cath done and an EP study. For the cath, I was given Valium before I was even taken up to the cath lab and then while I was there, they gave me lala juice. My EP study was a different thing. I thought I was ok and was feeling brave about it and didn't ask for the Valium. Well, as soon as they ushered me in, I started to have a panic attack, which brought on chest pain. While I'm trying to get myself under control, they said the nurses on the floor put the IV in the wrong hand. The doctor had to put in the IV because my veins are so bad. Then the IV lines started getting tangled up. I didn't think they'd ever get that juice started! The moral of my story is - if you know yourself and your tolerance for anxiety, take the easy way out. Insist on things that make the procedures more bearable. Margie F, age 52, EF 20, HCM with an AICD. MFisher238@aol.com
Karen K, February 15, 1999 - Hi Everyone, It has been quite awhile since I've posted but to those who may have wondered, yes, I'm still alive and kicking. :o) There are several things I'd like to respond to.
SSDI and psychiatric exams - been there, done that. I will say though, that I've been treated for anxiety and depression for a very long time, much before I developed cardiomyopathy. Mine was a piece of cake, though. I talked with the psychiatrist for about an hour. He told me I was undermedicated; like I need to add more meds to my daily mix. I have heard of some folks who actually get questioned as to what day it is and asked who is the president of the US. I was told these questions are for people with depression but I wasn't asked any of these.
As for hot tubs, we have one and the temp is at 103-105°. I always thought the danger in a hot tub was that it could possibly lower blood pressure. My mother lives in a mobile home park with a pool and hot tub, and folks there are limited to 5 minutes and they had an elderly gentleman who passed out when he stayed in longer. My doctor is aware of the hot tub and never said not to use it.
I have a question about emptying the bladder. Are you supposed to touch your toes while still sitting on the toilet or jump up, touch toes, then sit down again and try to void additional urine? <G> I have to say I am doing fairly well. I am still doing my treadmill daily and I find it actually makes me feel better. Those days when I don't do the treadmill I seem more groggy. I feel very fortunate to have reached the level I am at. My twin sister just had a mastectomy and now must endure 6 months of chemo and a stem cell transplant. On those days when I feel especially "well" I thank God for allowing me to lead the life I do. We've had signs of spring being pretty much around the corner which really pumps me up. I am definitely not a winter person. Warmer temps and sunshine are my cup of tea. I'll be heading to California within the month to be with my mother, who is having a hip replacement and cataract surgery on both eyes. Unless I find a laptop to rent, I'll be computerless and am already experiencing withdrawal. My best to everyone, especially to you and your family, Jon. Karen K, cardiomyopathy/CHF, EF 38. firstname.lastname@example.org
Jennifer B's February 15 reply to Tom S' February 13, 1999 - Hi Tom, I have had people do me the same way. I feel like asking if they are going to get some kind of thrill out of my death. People ask, "Well, are you dying?" I just say, "Nope, I'm living." It's like, isn't there enough death and drama in the movies? Take care, all. Thanks for the stats, Jon! email@example.com
Jay Q's February 15 reply to Pam E's February 13, 1999 - Hi Pam, I tried peeing while touching my toes but found it difficult to stand on the seat, reach down to my toes with both hands, and still pee competently. Besides, if my wife saw me doing this, she'd think I was nuts. Seriously, I think all men should sit when urinating except when urinals are available. They might think they are sharpshooters but most are noisy messy broadsiders and expect someone else to clean up after their mayhem. Cheers, Jay Q. firstname.lastname@example.org
Ben B's February 15 reply to Katie's February 12, 1999 - Hi, I do not know exact records on transplant longevity but in Marc Silver's book, he states as a guide (though somewhat optimistic), a "half-life" of 8 years. If I remember my algebra, this would put survival rates at 3 years=80%, 7 years=60%, 12 years=26%, 19 years=20%. As I said, he says this is optimistic but remember that transplants are less than 40 years old total. Plus, I don't think transplant is an elective surgery. Basically, the choice is between no chance of living and some chance. For me, I figure I'll try to stay alive as long as I can with meds, maybe 5 plus years if I am lucky, and then maybe there will be something new to add on a few more, or maybe a transplant if I am qualified and lucky enough to get one of the few organs. Or I could get hit by a truck tomorrow. email@example.com
Jon, February 15, 1999 - Hi, Saturday and Sunday were back to back bad days here, so there were no posts put up. About hot baths, I went to Medline and looked it up. Unfortunately the abstract was so long that Medline chopped it off before the conclusion was stated but here's the results up to that point: CHFers and hot baths/saunas: systolic BP was not much affected, diastolic BP significantly decreased, deep temperatures (coronary arteries) were elevated about a degree, oxygen consumption was increased slightly, and the kicker - heart rate went up significantly and was still increased 30 minutes later. I doubt any of this is critical, but the lowered diastolic BP and heart rate deserve notice. High rate heart at rest is not usually considered good and if your BP is already low, going lower isn't wise. If anyone wants the abstract, e-mail me and I'll send it to you. Jon.
Ben B, February 15, 1999 - Hi, I have long felt that the extreme stress I have aggravates my CHF. I can feel my arteries constricting, muscles tightening, and I get more tired and short of breath because of it. My dentist gave me some Ativan to take before dental appointments, and I swear I feel better getting my teeth drilled than almost any other time! My cardiologist says it is okay for me to take this occasionally, but won't prescribe because it is mind altering and habit forming. Anybody else have experience with benzodiazapines? firstname.lastname@example.org
Tom S' February 15 reply to LeeAnn D's February 13, 1999 - Hi, If the whites of your eyes are also yellow, perhaps it is time to go to a doctor or better yet, go to your local emergency room.
Liz J, February 15, 1999 - Hi Jon and all, Prayers go your way for you and your family. I was going to try to post individually to everyone,and thank you for prayers and support but find I am still too weak to stay on the computer much, so I would like to thank you all for your words of support and encouragement. It looks like it is going to be a long recovery, but I can now open a medicine bottle by myself. <LOL> I will go to rehab when I am strong enough to get out. Special thanks to Nancy for posting to the forum. It is good to be back online even for short periods. Liz J. EJa83911@aol.com
Ruthie A, February 15, 1999 - Hi all, I had to follow my own advice about getting a new doctor, especially after she misprescribed a non-heart-related medication and then blamed it on the pharmacy. With a bit of checking, we found that the pharmacy had followed her instructions to the letter. Unfortunately, this error has made me very dizzy and nauseous so I am in bed, and tomorrow (Sunday the 14th) is my birthday. We were planning to go away for a night in a hotel with fancy dinner and all that. Bummer. Oh well, there is next weekend.
I also talked to my mother today, who also has CHF. It seems she has been choking a lot lately and her doctor sent her for swallowing tests. The results were quite revealing. When she swallows anything, the muscles in one area do not function right away. They "hesitate" for awhile before "kicking in." The quotes were the radiologist's words. No one there knew she had CHF. When the radiologist asked her if she had any lung or heart problems and found out about the CHF, he said that he knew what the problem was. It seems that mother is so tired that even her swallowing muscles are super-fatigued. They are just too tired to work properly and efficiently. When she gets adequate rest, and if she stops talking while eating <g>, the problem should minimize. I was surprised at all this because I have been having problems with my swallowing, too. I thought it was my hiatal hernia, although the food or liquid was getting stuck too high to really be that. Since I have been super-fatigued lately myself, I am wondering if that is not my problem. Makes sense, I guess. Does anyone else experience this? Ruthie. email@example.com
Tina ?, February 15, 1999 - Hi everyone, I want to know if anyone gets times when you can actually feel your heart pumping but it does not feel like palpitations. When I check my pulse, it is only about 60bpm. My doctor told me that some people can feel their heart more than others but he doesn't know why. Does anyone share this experience? I also get short of breath but I haven't been told that I am congestive. Can my PPCM do this? I was also curious to know how much you can do in one day before you feel horrible. I know that everyone is different but I am just curious to know because I can't do very much but my doctor is telling me that it looks as if I am improving. Thanks. God bless.
Mercer Sherman, February 15, 1999 - Hello folks! I am a 38 year old male who was diagnosed with CHF 3 years ago, with EF of 19). I have had an inflammatory bowel disease called Crohn's Disease for over 20 years and I was wondering if anyone else had this entertaining combination of thorns in the flesh? Steroids and diuretics, now there's a morning tonic for you. :o) I'd love to compare wild ambulance ride stories, with others. G-r-e-a-t website Jon! I love how the Lord is using you to minister to all of us owners of tempermental tickers. One suggestion, you need a section for "All Time Stupid Comments, Questions, Situations" that have happened to us along the way. The 2/13 story by Tom S deserves a special place of honor there. It's priceless! I'm praying for you and your family. Mercer. firstname.lastname@example.org
Chuck Lewis, February 15, 1999 - Hi, I'm a naturopathic doctor and used to help others take the right supplements to help them get through these kind of problems; Like making sure everyone takes about 200mg of CoQ10. I distanced myself as a healthy, very sports-active man, but now I am one of you all, and am having trouble believing it. I worked hard all my life to not have this happen, but I am beginning to see that life does go on, it's just different. I have more appreciation for it and am scared about the future.
I was in the hospital when my wife to be came into town to visit me. I couldn't help but feel how I'd failed her. I had planned to be so much more for her than I am now. I've read some of the bios but have had a hard time going any further. I just can't believe it's me that it is happening to and now my fiance is even caught in this thing. It really doesn't seem fair, does it? Well, thanks for letting me interupt you good folks' day. I feel a little better now. Chuck Lewis. email@example.com
Arlene B, February 15, 1999 - Hi, This is my first post. I was diagnosed with CHF in April. I have been reading this site since June. I have been working on low sodium recipes and now have over 60 - all tested and husband approved. I would like to share these with those who can use them. If you are interested, send me an address and I will mail copies to you. Goldysbest@aol.com
Gus R's February 15 reply to Kay's February 12, 1999 - Hi Kay, SSD seems to think I'm crazy, and if that's what it takes to get the benefits I qualify for due to CHF, I'm not going to argue with them. After many denials and appeals, I went to an attorney, whose first act was to apply for a hearing before an Administrative Law Judge. Instead of scheduling a hearing for us, the judge remanded the case back to the State agency for further review. In his order of remand, he strongly questioned why the State Agency had not evaluated me mentally and suggested they should do so, and then advise me of the "revised reconsideration determination on the case, and of the right to request a hearing with respect to that determination."
Reading between the lines, I translated this as meaning that he thought I was nuts, and anyone who read the facts in the case would agree if they weren't nuts also. An appointment was made with a local psychologist (SSD picked him and paid him). He evaluated me, including the completion "of a standard document (the Psychiatric Review Technique Form)." About 6 weeks after that, I received my Notice of Award, which said that I was entitled to benefits, and explaining those benefits. That was in December of 1993 and I've not been questioned or re-evaluated (that I know of) since.
The psychologist was a pleasant man with the evaluation lasting about an hour. I was completely honest with him and explained that I did not think my mental health would qualify me for benefits, but that my physical health easily did, and I wondered who the real nut was in this case. I suppose I am now a certified crazy, and am not very happy with it, but have never considered trying to get them to change the reason for my Disability. Best wishes, Gus R. firstname.lastname@example.org
Jon's February 15 reply to Gus R's February 15, 1999 - Hi Gus, I rather suspect the Law Judge was reminding SS that in your case, they had not dotted all their Is and crossed all their Ts before denying benefits and that they had better be a little more careful before sending sloppy denials into his little fiefdom, and thus wasting his time. That was a polite way for him to tell them to get their act together, as far as his office is concerned. I suspect your evaluation had little to do with your acceptance but rather they didn't want to further aggravate that judge. This may seem a bit nuts on the face of it but that's how I see it. I have some experience with federal judges and mediators, which I can't go into. Of course, you may be nuts. If so, you'll fit right in here at Jon's site. <g> Jon.
Ben B, February 15, 1999 - Hi, Sometimes when I walk, I get tremendous pain which starts on the top of my foot and runs up the front of my shin. It is not muscular, and I suspect it is circulatory. Also sometimes when I look at my shin after this, it looks like there are bumps in my blood vessels, which I hope are not blood clots. I told my cardiologist (of course there were no bumps then) and he said it was proably due to the fact that I just started exercise, despite the fact I have been walking 1 to 3 miles a day for almost 3 years. Does anybody else have this problem? Is this peripheral artery disease? Also, what is cardiac index? email@example.com
Renee P's February 15 reply to Brenda H's February 13, 1999 - Hi Brenda, Two months before I found out I had heart problems, we had a hot tub installed in our home. After I came home from the hospital, I was so depressed thinking that I could not use it. As I had 3 back surgeries, I was looking forward to a long soak. I have now found out that if I turn the temp down to 99 or 100, I can still use it. You have to use your own guide, if you get queasy while in there, get out right away. Also, do not drink anything cold while in the tub or for a half hour afterward, as the shock can be hard on your system and your heart. I usually drink room temp liquids. Good luck. Renee, EF and age 42. firstname.lastname@example.org
Mark E's February 15 reply to Brenda H's February 13, 1999 - Hi, I have an outdoor hot tub at my home at Bear Lake. I have enjoyed it for several years. I find that if I stay in for a long time, I am so relaxed that it is harder than normal to get up the steps to my bedroom but other than that, I have found no bad effect. My blood pressure is kept so low by CHF medication that I doubt it could go up to any dangerous level. I should check it sometime while in the tub. I feel like my blood pressure must have gone down as I relaxed. I now have a friend and a son who have hot tubs too, so I go more often than ever. I have often spent more than an hour in the hot tub watching TV and visiting, but only when the temperature of the water is a bit cooler than usual, or the heat would force me and most others out of the tub sooner. I have not discussed the matter with my doctors but for what it's worth, I haven't noticed any problems at water temperatures which others my age and younger enjoy. My EF is now 21 and the doctor tells me I'm dying so I'm not unusually healthy. Mark, still age 53, in Utah. Mark3797@aol.com
Jennifer B, February 15, 1999 - Okay, question time. I am sure I am going to say this wrong but has anyone heard of Venous Congestion? My doc says that it should be 10, but mine was 2 or 3 in the hospital, and he was wondering if I was using too much Lasix, which I feel I am not, so is there another explanation for a low whatever and what is it exactly? Thanks. email@example.com
Ben B, February 15, 1999 - Hi, Has anyone started Coreg at their home, or does everyone start in the doctor's office? My doctor took an EKG, looked at it, took my pulse and BP, then gave me some 3.125mg samples and said to start when I had little to do and someone to watch. I have a BP and heart rate monitor at home. Does anyone have any advice, or am I making too big a deal out of this? Thanks. Ben B. EF 35, age 41. firstname.lastname@example.org
Jon's February 15 reply to Ben B's February 15, 1999 - Hi Ben, The odds are that it is safe to start at home, but if it were me personally, I would want to start with nurses watching me at my clinic, which is how I did start it. The manufacturer states that Coreg should be started under a doctor's direct supervision. Jon.
Pat E, February 15, 1999 - Hi, This is my first time to post. I have been reading the posts since August of 1998. I am a 56 year old female who has been diabetic type II for 20 years. You can add also add obesity and hypertension to the list. I simply didn't take care of myself and have born the fruit of that lack of care. In June of 1998, I had a major heart attack and was diagnosed with CHF shortly after that. Needless to say, a major lifestyle change was in order. I have managed to lose 50lbs, stabilize my blood sugar (104), lower my cholesterol to 156 - HDL 50 and LDL 97. The only thing that isn't a lot better is the amount of exercise I do. It seems as if all I can manage is about 10 minutes per day. This is very discouraging. My drugs are Rezulin, Glocophage, Glipizide, Cardizem, Zestril, Plavix, Triamterene, Pravachol and Megesterol. I have been married to the same wonderful man for 38 years and couldn't have made it this far without him. I want you to know how much this page means to me, and obviously to others. The good Lord certainly put you in the right place at the right time. My prayers are with you and your family, and everyone on this forum. I have about 90lbs left to lose. If there is anyone out there with similar problems, please let me hear from you.
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.