Vee 7-16 seek dry eyes remedies
Scott Brown's 7-16 reply to Jonathon's 7-8 throat swelling, breathing & more
Scott Brown's 7-16 reply to Tom S' 7-12 diuretics
Derald 7-16 always talk to your doctor
Wayne 7-16 heart remodeling & enlargement question
Jon's 7-16 reply to Wayne's 7-16 remodeling causes heart enlargement
Jack D's 7-17 reply to Jon's 7-16 remodeling and heart enlargement
Tom S' 7-17 reply to Scott Brown's 7-16 drug doses
Walter K's 7-17 reply to Vee's 7-16 dry eye possibilities
Tracey C 7-17 balsamic vinegar question
Tom S' 7-17 reply to Jon's 7-17 mEq and mg potassium chloride
Jon's 7-17 reply to Tom S' 7-17 mEq and mg potassium chloride
Karen K 7-17 dry eyes experience
Jack D's 7-17 reply to Tracey C's 7-17 balsamic vinegar
Dorothy's 7-18 reply to Vee's 7-16 problems with the eyes and tearing (dry eyes)
Margery G 7-18 ICD shock was brutal - seek others' experiences
Jon's 7-18 reply to Margery G's 7-18 ICD shocks and resources - I hope others reply!
Jon 7-18 mailing list becoming more active
Nikos' 7-18 reply to Margery's 7-18 ICD shocks experience
Jim 7-18 Coumadin and changing PT - any ideas?
Dorothy Powell's 7-18 reply to Vee's 7-16 problems with the eyes and tearing (dry eyes)
Stephen 7-19 nerve damage from cath - anyone else?
Tom S' 7-19 reply to Jim's 7-18 Coumadin has been a curse to me
Christy W's 7-19 reply to Jim's 7-18 Coumadin
Ben B's 7-19 reply to Stephen's 7-19 serious infections
Jean C 7-19 what do I ask before surgery?
Karen F's 7-19 reply to Jim's 7-19 Coumadin
Amelia 7-19 Coumadin experience
Joan 7-19 keep trying options till one works!
Mike 7-19 Coumadin experience
Jon 7-19 a request and page updates
Davida S' 7-20 reply to Tracey 's 7-17 puffing up possibility
Jo Ann F 7-20 need to know more about CHF
Jon's 7-20 reply to Jo Ann F's 7-20 learning more about CHF
Ernie 7-20 seek CHF doc in south New Jersey
Elle R 7-20 writing a PPCM book - need some help
Tracie 7-20 need info about high cyclosporine levels after transplant
Mimmo 7-20 seek info on ICDs and airport metal detectors
Jo Ann F 7-20 seek CHF doctor in Maryland
Debbie A 7-20 does this get any easier? & more
Jon 7-22 ain't life grand?!
Eris D 7-22 kidney problems - have questions, seek info
Jeff's 7-22 reply to Ernie's 7-20 heart doctor suggestion
Anita C's 7-22 reply to Mimmo's 7-20 ICD and airport metal detector experience
Joseph's 7-22 reply to Debbie A's 7-20 rationing our energy
Marvin 7-22 seek ICD & amiodarone experiences
Joseph 7-22 3 seems like a lot of pacemakers
Jon's 7-22 reply to Joseph's 7-22 it can always be worse
Kris S 7-22 seek suggestions for insomnia, sleep deprivation
Jon's 7-22 reply to Kris S' 7-22 would also like suggestions
Judy H's 7-22 reply to Mimmo's 7-20 ICD and airport metal detectors
Derald's 7-22 reply to Debbie A's 7-20 coping with sleep problems
Jon 7-22 ahhhh, I'm so cool!
Tom S' 7-23 reply to Jon's 7-22 temperamental air conditioners
Jan Buckert 7-24 why stay on these drugs now?
Jon's 7-24 reply to Jan Buckert's 7-24 here's a start
Joe S' 7-24 calcium channel blockers are helping me
Jon's 7-24 reply to Joe S' 7-24 calcium channel blockers
Gail 7-24 how do I lose weight?
Jon's 7-24 reply to Gail's 7-24 losing weight, exercise
Joyce 7-24 how do we reduce leg swelling?
Jon's 7-24 reply to Joyce's 7-24 coping with edema
Tracey C 7-24 diabetes, cardiomyopathy, and viruses
Ben B's 7-25 reply to Tracey C's 7-24 diabetes, cardiomyopathy, and viruses
Susie 7-25 radiation in arteries question
Jon's 7-25 reply to Susie's 7-25 radiation in arteries
Joe S' 7-25 reply to Jon's 7-24 thanks for the input & more
Jon 7-25 page updates, mailing list stuff
George S 7-25 leg pain, and exercise & meds questions
Jon's 7-25 reply to George S' 7-25 leg pain and exercise with meds
Vivian P's 7-25 reply to Marvin's 7-22 ICD and amiodarone experience
Herbert L's 7-25 reply to Jon's 7-25 why backing off on beta-blockers?
Tracey C's 7-25 reply to Ben B's 7-25 just thought it interesting
Stephanie 7-25 could hormone therapy have caused my CM?
Eddie V's 7-26 reply to George S' 7-25 shoes can make a big difference
Herbert L's 7-26 reply to George S' 7-25 my experience
Joseph's 7-26 reply to Vivian P's 7-25 ICD & ablation experience
Janet H's 7-27 reply to Herbert L's 7-26 exercise and heart rate
Dina Rice 7-27 seek ablation experiences
Dorothy Powell's 7-27 reply to Herbert L's 7-26 exercise and heart rate
Derald G 7-27 question about CPX test (Vo2max test)
Jon's 7-27 reply to Derald G's 7-27 CPX test (Vo2max test) is very important
Dan H's 7-27 reply to Kris' 7-22 getting to sleep
George S 7-29 heart rate and exercise, leg pain, thanks
Scott Brown's 7-29 reply to Herbert L's 7-26 heart rate and exercise
Scott Brown 7-29 chest pain question
Jon 7-29 seek anyone hurt by cath procedure
Rita's 7-29 reply to Gail's 7-24 exercise and diet recommendations
Karen F's 7-31 reply to Rita's 7-29 different people, different strokes
Shauna 7-31 intro, to Rita, diabetes, book question
Herbert L's July 31 reply to Shauna's 7-31 questions about stage and class
Jon's 7-31 reply to Herbert L's July 31 heart stages and classes
Vee, July 16, 2002 - Hi everyone, Does anyone know of good remedies for relieving dry eyes? I've used used artificial tears for years, but they're not working very well anymore and the over the counter ointments are messy and not very effective either. Is there a good prescription product? I thought I saw a post about this and Sjogrena's syndrome awhile back, but haven't been able to find it again. Thanks! firstname.lastname@example.org
Scott Brown's July 16 reply to Jonathon's July 8, 2002 - Hi Jonathan, I agree that the throat problems sound like a side effect of the ACE inhibitor. How long have you been on an ACE inhibitor? It took me about 6 months to really get use to an ACE inhibitor. I still have a bit of a dry cough from it. The glands in my throat seem to swell from time to time, but not as badly as when adjusting to the dose.
You may also be short of breath due to fluid in your lungs. Next time you take a good course of Lasix, try to notice if your breathing problems are better. If so, you should think about reducing fluid and sodium sodium intake or increasing Lasix (according to doctor's orders). Good luck, Scott Brown. email@example.com
Scott Brown's July 16 reply to Tom S' July 12, 2002 - Hi Tom, 160mg twice daily sounds like an awful lot of diuretic. My cardiologist allows me to shift the dose according to my weight. It is not perfect because you could gain or lose fat. There are several reasons diuretics can play havoc, watch out for these:
Dehydration - the strategy in CHF patients is to constantly keep you a little dehydrated. Too much dehydration and you will needlessly feel ill.
Loss of electrolytes - If you are low on electrolytes like potassium you are going to feel lousy, have muscle pains and muscle spasms, etc. Eat potassium or take Slow K as a suppliment.
Low blood pressure - Lasix drops your blood pressure. If your blood pressure drops too much, you will feel lousy, dizzy, etc.
Abdominal pain - Make sure you get regular blood tests according to doctor's orders. Blood tests will show low electrolytes, evidence of kidney disease, etc. Taking duiretics for a long period comes with its own problems.
If you balance things right, you can maximize the health you have left. Thanks, Scott Brown. firstname.lastname@example.org
Derald, July 16, 2002 - Hi all, Just a warning, I thought I'd already sent it but my memory isn't that good. I'm having an operation for my left arm for ulnar tunnel syndrome. It turns out that I was ignoring the pain and numbness because I thought it was a CHF symptom. We really must discuss these things with our doctors. And by the way, knowledge is power. I figured out what it was before the neurologist did (researching on the Internet) and it took him two visits. However, I went to him concerned and with an idea of what I was talking about, that isn't a substitute for a medical degree. email@example.com
Wayne, July 16, 2002 - Hi, I have DCM and an enlarged heart. I've read about remodeling of the heart, but I don't quite understand. Are an enlarged heart and a remodeled heart the same thing, or is there some subtle difference? firstname.lastname@example.org
Jon's July 16 reply to Wayne's July 16, 2002 - Hi Wayne, remodeling is the process that causes an enlarged heart in DCM. :-) Jon.
Jack D's July 17 reply to Jon's July 16, 2002 - So what you are saying is that we should leave the house the way it is or we will get enlarged hearts? email@example.com
Tom S' July 17 reply to Scott Brown's July 16, 2002 - Hi, You thought 160mg twice a day (320mg total) was a lot of diuretic, so how bout six 10mEq Klor-Con potassium chloride tablets a day to go with it? From what I have read, 10mEq is equivalent to 750mg of potassium chloride so the numbers are up in the stratosphere as far as my potassium intake. I am also downing 50mg of Coreg daily plus a small pharmacopia of other drugs. Keep in mind I have been at this dosage for over 6 years so it must be doing something right for me. I just had that one bout of low BP so I feel pretty lucky. firstname.lastname@example.org
Jon's note: one mEq of potassium equals 39mg potassium
Walter K's July 17 reply to Vee's July 16, 2002 - Hi Vee, I have a problem with dry eyes also. Both an opthamologist and an optometrist said my problem is made worse by debris clogging my tear ducts. The debris can collect because of dry eyes, the debris makes the eyes drier, which makes debris collection easier and round and round. Anyway, they both said to wash the eyelids thoroughly with baby shampoo for a minute or two daily to clean out the debris. It does help me; maybe it would help you. email@example.com
Tracey C, July 17, 2002 - Hi, Is there hidden sodium in balsamic vinegar? I seem to puff up every time I eat it lately. Thanks. firstname.lastname@example.org
Tom S' July 17 reply to Jon's July 17, 2002 - Hi, A web site that seems reputable says 10mEq = about 750mg potassium chloride. email@example.com
Jon's July 17 reply to Tom S' July 17, 2002 - Hi Tom, I shot off that number for potassium without thinking about it actually being potassium chloride. 39 is right for potassium. I have to take my wife for an MRI in 6 minutes so have to figure KCL later but I am sure they (and you!) are right. I'm glad you caught my mistake! Thanks. :-) Jon.
Karen K, July 17, 2002 - Hello, I'm adding my 2 cents (for what it's worth) regarding the dry eye problem. I've had dry eyes much longer than I've had cardiomyopathy. My eyes dry to the extent that I frequently end up with an emergency visit to either my eye doctor or the ER as the dryness causes corneal abrasions which I can detect as soon as they start (not a comfortable, fuzzy feeling). Once I have an abrasion the current treatment is a contact lens (for treating the abrasion only as this allows it to heal since every time I blink it removes more layers of cells from the cornea). Additionally, I've been given antibiotics and ointment to put into my eyes at night. I am also supposed to use "Refresh Plus" on a daily basis.
There are certain things that can exacerbate the formation of a corneal erosion - air travel (really dry air), heat and air conditioning in the car. I also have to be very careful in dry climates. One treatment I've had in one eye is to have the tear duct cauterized. I was told the next treatment would be to insert a needle directly into the cornea (ouch!). Thankfully, I think someone forgot about that one.
A combination of my meds also adds to the dry eye problem: Lasix, spironolactone, and Prozac all can cause dry eyes and a dry mouth. I hope this adds some insight into the discussion, Karen K. firstname.lastname@example.org
Jack D's July 17 reply to Tracey C's July 17, 2002 - Hi Tracey, Balsalmic vinegar is just grapes. So the culprit must be whatever you are putting it on. Of course if you are chugging a half-gallon or so with your meal, it might cause problems. <lol> email@example.com
Dorothy's July 18 reply to Vee's July 16, 2002 - Hi Vee, Like Walter, my doctor says to use a warm wash cloth and baby shampoo to wash the edge of the eye just above the eyelashes for 2 to 3 minutes. It really does make a difference. By the way, the condition is called blepharitis. The doctor says ignoring this problem can cause real vision problems in later life. The tears become thickened and vision will likely be affected. DPowell806@aol.com
Margery G, July 18, 2002 - Hi, We would like to hear from anyone else who has a biventricular pacemaker with a defibrillator, and has received a shock from the device. My husband has had his for about 2 months and it has markedly improved his CHF. However, this morning he got his first shock. It was terrifying! He said it felt like a lightening bolt going through his system and no one had prepared us for this.
I don't know what would have happened if he had been driving. Now he is too frightened to drive in case it happens again. Of course we've called the doctor and will go in to be sure the device is working properly. Has anyone else had this experience? Margery G. firstname.lastname@example.org email@example.com
Jon's July 18 reply to Margery G's July 18, 2002 - Hi Margery, I am very sorry this has been such a frightening experience. It will never be pleasant, but will be life-saving. Your doctor should have prepared both of you for this. It is normal procedure not to let a new ICD recipient drive for 6 months, then if he does not have any shocks in that time, go back to driving. If he does have shocks - like your husband - the ICD part of the device may need to be reprogrammed (or not) to prevent such powerful shocks or reduce their frequency.
Just remember that the ICD is meant to stop his heart in the worst-case scenario - like the one he just experienced - so that his heart's natural pacemaker can regain control over his heart beat. That's never going to be a gentle thing. Before it does this, the device should be trying to "cardiovert" his heart with a lower amount of energy, then if it fails at that, it goes to the big kick. You can read more about it at the ICD page, which also has links to ICD-related resources online.
I hope some ICD wearers reply with personal experiences because there is no information like first-hand information, which I cannot give. Jon.
Jon, July 18, 2002 - Hi everyone, I'll be sending out more articles on the mailing list this week and next, so if you're not on it, you may want to add your name to it at www.chfpatients.com/lists.htm. Jon.
Nikos' July 18 reply to Margery's July 18, 2002 - Hi Margery, Your husband's new angel-friend just proved that he is protecting him even if he doesn't know it. It is important to "read" the device and see what exactly happened. It could be a proper shock responding to a life-threatening VT or ventricular fibrillation or an improper one responding to another arrhythmia which is not life threatening. I have gotten about 40 improper shocks responding to SVT. My ICD was reprogrammed 3 times and I had an ablation. Then all the improper shocks stopped but I got about 10 proper ones in 3 other incidents that followed. Basically these lasts ones probably saved my life.
Obviously a shock will never be an easy thing to accept but it is better to think of it as the best friend who is always there to help, even if it has to be unpleasant. Nikos, writing from Greece. firstname.lastname@example.org
Jim, July 18, 2002 - Hi, I have a question for anyone about CHF and Coumadin. I have regularly taken 4mg of Coumadin a day. Since my last hospital stay I went very high on my protime count (4.9). My Coumadin was cut to 2mg a day. Now it is again too low, for the second time since May. I know that I am much more inactive - is that the cause? My eating habits haven't changed much. Any ideas? It is driving me nuts. email@example.com
Dorothy Powell's July 18 reply to Vee's July 16, 2002 - Hi All, I realized there is one more bit of information I need to share about dry eyes. The first symptom I had was seeing a "halo" with a red circle around lights at night. It didn't seem to matter the source of light - porch lights, oncoming traffic headlights, stadium lights, etc. I headed straight for the doc when I went to Sonic to order something and the menu looked as if it were under water and was very difficult to read. Washing my eyelid with baby shampoo cleared up all of these problems. Maybe this will help someone. Dorothy. DPowell806@aol.com
Stephen, July 19, 2002 - Hello all, This is my first post and I have found some valuable information on this page. I am a 38 year old athletic male who has been working internationally in telecom (non physical). I came home to a stressful environment and entered into duties of physical exertion. I started having chest pains and went to the ER. I had an EKG, blood work, heart rate, and blood pressure measured, all of which came back normal.
I was given muscle relaxants for that day, and was referred to the ER cardiologist. Two days later I took the nuclear stress test and it came back abnormal and I was told I needed a heart cath. I was confussed with the short notice I had and had the procedure performed a couple of days later. The results came back normal and I was told to see my physician, who stated I had musculo-skeletal symptoms - a pulled muscle.
I got a very bad staph infection. It has been 7 months since the procedure and still have unbearable groin pain, with associated numbness and pain down the inner part of my thigh and foot. Has anyone suffered this kind of damage from a cath? I am seeking advice and am hoping this is not permanent. I used the ER cardiologist (I wish I could do it over) and have been routed to a urologist and ultrasound techs, but am not getting relief. Any help is appreciated. Thanks, Stephen. Stephen@quinlan.cc
Tom S' July 19 reply to Jim's July 18, 2002 - Hi, If there ever was a curse on this earth it would be in the form of Coumadin. I took that rat posion for 4 years and never could get my PT (INR) to stabilize. At one point I was getting blood drawn twice a week and generally twice a month. Then with much begging and pleading with my doctor I was taken off Coumadin for a year and put on a single aspirin tablet a day. That was fine until the doc ordered an echocardiagram, from which my cardiologist said he had spotted what he thought was a fair size clot in my now prolapsed heart.
I was put back on Coumadin and was back to the see-saw battle of trying to keep on an even keel with it. My dosage is somewhat higher than yours at 7.5mg alternating every other day with 10mg. So I guess it is not uncommon for PT results to fluctuate. The only thing I have been trying to convince my doc's to let me get is a home PT tester that only requires a drop of blood from the finger to accomplish - a lot better than the 2 vials they take from me now from a vein. firstname.lastname@example.org
Christy W's July 19 reply to Jim's July 18, 2002 - Hiya Jim and all, I too have DCM and take Coumadin. My experience is that your ProTime is going to reflect any changes, no matter how small, to your diet. It's mostly the green leafy things that really affect your clotting factors. If you were used to having a salad a day and you are not getting that now, then you are changing your intake of vitamin K (the stuff in the greens that affects your clotting time) more than you think. Coumadin patients should never take a vitamin K supplement, since that will really wreak havoc with the PT and could potentially cause dangerous clotting. From what I've read and researched, exercise doesn't affect clotting. All this food info is only any good once you get stabilized on Coumadin, but it really helps to start being consistent with your greens intake at the outset.
I can relate to PT bouncing back and forth. Mine has been 1.7, then 3.9, then 2.9, then 5.9 since May, having gone out of range for no apparent reason other than the quantity of greens I was ingesting. I'm still struggling to get it back to "normal." Good luck, and look into the home testing equipment if you continue to have to test more frequently than once a month. Christy W. email@example.com
Ben B's July 19 reply to Stephen's July 19, 2002 - Hi, Since you are 7 months out you are probably out of the woods, but you may have sustained some permanent damage. My father got a staph infection from a cath and it ended up killing him about 2 months ago. After 30 years of heart disease and 20 years of CHF, it was ultimately part of his treatment that killed him. It infected his bones, kidneys, heart, his whole body. He was not well treated by the hospital, which likes to make out like they had nothing to do with any of this. The main symptom he complained of was pain in his joints.
Super germs develop inside hospitals that are very powerful and resistant to drugs. Anybody with any symptoms, especially pain or fever, after a cath should be very careful. Of course, in many cases caths are essential and this warning in no way is intended to provide an excuse for avoiding necessary treatment or diagnostics. There are risks involved in everything, but people need to be aware. firstname.lastname@example.org
Jean C, July 19, 2002 - Hi, I have CHF and am concerned about repair of hip replacement surgery scheduled for me. I know it is a risk but I do not know what questions to ask the doctor. Is there anyone out there who can help me? Jean. email@example.com
Karen F's July 19 reply to Jim's July 19, 2002 - Hi, I have been taking Coumadin since 1990, when my pig's valve needed to be replaced with a mechanical valve. I have had episodes when I needed blood drawn daily for a week and a half straight and times when I have been stable and only needed blood drawn every 6 weeks; and I have been everywhere between the two extremes in that range!
Lots of things will reflect how your body metabolizes Coumadin. Are you using brand name or generic (the fillers in the pills may differ and change your results)? A change in the amount of dark leafy green veggies, drinking green teas, the amount of stress you are dealing with, do you have a summer cold or have you been experiencing headaches causing you to take some OTC meds? Have you started a new prescription med or had your dosage recently adjusted on a med you've been taking? I have found that even having a string of sleep-deprived nights can affect my test results. Changes in physical activity levels or traveling can affect your test results as well.
The trick to living with Coumain is trying to be as stable as possible in your life style and realize that sometimes your body will just whack out for no perceptible reason. Understand that there will be times when your Coumadin dosage will have to be adjusted on a daily basis and there will be times when you will be stable for months with no dosage adjustments needed. The ideal level of Coumadin causes the blood to clot in about twice the time that normal blood would; that is, the clotting time is substantially prolonged. Thus, patients on Coumadin often have a tendency to bruise easily. Warning signs of over-treatment include nose bleeds, bleeding gums or blood in the urine.
Most authorities recommend that patients taking (warfarin) Coumadin have prothrombin tests (INR) every 4 to 6 weeks. The key thing is to know and be aware of warning signs that mean you need to get to the ER immediately, like blood in the urine or spontaneous nose bleeds that just won't stop.
I have been on a consistant dose of 7.5mg every day except Wednesday (on Wednesday I take 10mg) for the past 4 months, which is a very good stretch of consistency for me. firstname.lastname@example.org
Amelia, July 19, 2002 - Hi everyone, As far as Coumadin, well, that's a sore subject with me also. I have been on Coumadin since May of 2001. It's been 14 months and I still have to go in every 6 days. My INR jumps up and down. Everyone, including myself, gets panicky when it drops below 2.5 since I have had mini-strokes as well as CHF. My arms are usless for drawing blood and my hands are almost unusable so now they are using the little machine like a glucose testing machine - a prick on your finger and a drop of blood reads your level in 45 seconds.
I never miss a dose of my Coumadin, which I take at night. My meals are on time with very little changes. My neurologist and cardio-doc sent me to a hematologist since my other lab work is up and down. The method of a drop of blood has been used for 5 years. My Coumadin nurse says they send patients once in awhile (to double check this little machine) to have their INR checked by drawing the blood and find it to be very close. My hematologist isn't too happy having it done that way. My next appointment is the 26th, and I am anxious to hear what he will come up with. Stay well and best to all. email@example.com
Joan, July 19, 2002 - Hi all, I haven't posted in awhile but read all the messages faithfully. I can learn so much from them and you all, and I thank God for Jon and this site. I know how we all should be on ACE inhibitors but I tried four of them for over 2 years and was one of the few that was allergic. I really wanted to be on them but I was coughing myself to death and never slept at night from the gagging. I was experiencing an inability to take deep breaths also, which made me feel even worse.
Well, my doctor put me on Diovan about 5 weeks ago, along with a calcium channel blocker and a beta-blocker, and I feel like a new person. I have a new lease on life. I just wanted to give this info to anyone who may be suffering like I was. My cough was not caused by fluid, my lungs were not congested, I had an EF of 50%, and the cough was a gagging, choking sensation and it was horrible. God bless, Joan. firstname.lastname@example.org
Mike, July 19, 2002 - Hi all, I've been on Coumadin for just over 2 years and I have a Pro Time every 6 weeks. They have never drawn blood, just a little stick in the end of my finger and 45 seconds later they have the results. email@example.com
Jon, July 19, 2002 - Hi everyone, I have been fixing broken links for 4 days now on all 3 of my web sites. Bummer. I still obviously have some broken links somewhere besides The Archives but I can't find the suckers! Please, please, please if you find a broken link anywhere on the site, let me know. You can e-mail me at firstname.lastname@example.org.
I still have a lot of stuff to send out on the mailing list so if you haven't signed up, you might want to do so at www.chfpatients.com/lists.htm.
The following pages have been updated (the Random Thoughts page is not heart-related):
Davida S' July 20 reply to Tracey's July 17, 2002 - Hi Tracey, This may be an allergic reaction. Ask the doc or check out the Internet for clues regarding allergic reactions. email@example.com
Jo Ann F, July 20, 2002 - Hi, I am new and this is the first time I have read this page. It is very interesting. I have been in the hospital 15 times in a year in a half and I do not really know about my illness. I have COPD and CHF. I thought I did until I read about what I have heard you all say. I just got out of hospital 2 weeks ago. I am still having a hard time - I feel like I cannot get air and I am on oxygen all the time.
They told me last year they didn't think I was going to make it. They could not get me stabilized. Well, then I did better than they thought, but not anywhere close to being myself. Now I am getting to where I keep fluid all the time. I have went as high as 180mg Laxis and my doctor says that's a high dose.
I get the funniest feeling, like tonight I felt like I was just going to go right in the middle of the floor. It's hard to explain, and I get my feelings easily hurt and want to cry. I am pretty much home bound except going to the doctor, who says that I can never drive again. I still have an aide come in 3 times a week to help me with my personal needs. I just feel like I would do better if I knew more about CHF. I would appreciate your help. Thanks, Jo Ann F. firstname.lastname@example.org
Jon's July 20 reply to Jo Ann F's July 20, 2002 - Hi Jo Anne, Welcome. :-) I'd suggest starting right here and just keep on reading and asking questions here. Jon.
Ernie, July 20, 2002 - Hi, I am looking for a CHF specialist in the south New Jersey area or a cardiologist who is well experienced in this specialty. Thanks for any helpful information that you may have. email@example.com
Elle R, July 20, 2002 - Hello everyone, I am writing a book about women living with peripartum cardiomyopathy (PPCM Survivors). This book will bring awareness to PPCM. I need your help! If I could please ask your participation in this, I would greatly appreciate it. As this is a book about bringing PPCM "awareness" I would like to feature your expertise as well - your experiences and stories and opinions.
The book will be truthful and honest about our experiences, good and bad. Most of all, it will let everyone know that we are survivors no matter what challenges we encounter in life, especially living with PPCM. If you are a female living with DCM or CHF (not necessarily PPCM) and raising children, please feel free to participate. All input would be extremely helpful.
Please e-mail me at CHFaith02@aol.com to participate by filling out a questionnaire. I look forward to working with you on this project! God bless. CHFaith02@aol.com
Tracie, July 20, 2002 - Hi, My name is Tracie and I have an 8 year old daughter that had a heart transplant at 7 weeks of age. Does anyone have any ideas about cyclosporine levels continuing to go high. My daughter's levels are going high even though the doctors keep lowering her dose. They don't seem to know what is causing it. She has had no changes in any of her other meds. She is tube fed so it is not a food item messing it up.
If anyone has had this happen before, or has heard of it or would know where I could go to read about it or find out something, please let me know. Thanks, Tracie and Haley. firstname.lastname@example.org
Mimmo, July 20, 2002 - Hi, I am 27 years old, writing from Italy. This is the first time I have written here. I have DCM and before me, my mother and her brother got it but they are fine; they were transplanted over 5 years ago. I am not that fine but I do not want to complain. It could be worse.
My EF is about 35% but my Vo2max is around 21, not that bad. I got an ICD 4 months ago since I was kind of allergic to amiodarone.
My question is: Does the metal detector in airports cause any malfunctions to my ICD? Should I avoid passing through it? I am not sure. Some doctors told me that at worst the metal detector beeps, but there is no danger to my ICD and to me. Is it true? Jon, your site is great, and your mailing list is even better. Keep on like this! Thanks. email@example.com
Jo Ann F, July 20, 2002 - Hi, I need to find a good CHF doc. I have right-sided CHF, COPD, emphysema, and my liver is enlarged. I have GERD, hypertension, osteoporosis, and arthritis. I went to a heart doctor and she told me I needed a lung doctor. I live in Churchton, Maryland, close to Annapolis. I would appreciate help in finding a doctor for my heart failure. Thank you. firstname.lastname@example.org
Debbie A, July 20, 2002 - Hi, I'm new to the site but am thrilled to be able to read about other people who are experiencing the same things I am. I am a 45 year old woman who was born with a biscuspid aortic valve. I didn't know this until I was 35 when I had an unexpected heart attack due to a renagade blood clot. That's when the discoved the valve. I recovered well from the heart attack, lost 85 pounds and was exercising at the YMCA 4 times a week. I felt great.
Then about one and a half years ago I started getting short of breath, fatigued, and all that jazz. The doctor discovered severe aortic stenosis and said I needed a valve job. Because of my age they opted for a titanium valve. They had to try 3 different valves and couldn't get one small enough. They had to do cardiac massage and 3 bypasses to get me going again. My husband and daughter were told to say their goodbyes because I wasn't going to make it.
Well, God and a dozen people in the hospital chapel praying and prayer chains all over the country proved the doctors wrong. The hospital staff all called me "Miracle Girl." The surgery was a year ago in June. I work full-time 40 to 50 hours a week and am active with church and friends. I have CHF and I'm still trying to fiqure out what is "normal" for me. Some days I feel great and other days it's all I can do to drag myself out of bed. Any little twinge in my chest or dizzy spell has me wondering if this is a precursor to a heart attack. I don't want to be a hypochondriac but I don't want to take risks either.
Does this get easier? Any advice? Thank you Jon, for giving people a place to ask questions and communicate. Family and friends are sympathetic but just don't understand. Debbie. email@example.com
Jon, July 22, 2002 - Hi everyone, Well, my air conditioner broke and I'm sitting here in my boxer shorts with two fans on, surrounded by two hot dogs (sorry about that awful pun). It ain't a pretty picture. <g> Anyhow, the show will go on, but it may go more slowly than usual, depending on whether the sweat flooding the keyboard shorts anything out. ;-) Jon.
Eris D, July 22, 2002 - Hi, I may have asked some of this before, but I still need some answers if anyone out there has any. I have had CHF for several years and am on just about all the types of meds usually prescribed and then some, including Losartan, Coreg, digoxin (Lanoxin), etc.
For years my doctor has said my kidneys were fine, then suddenly she dropped into the conversation that they were not doing well but she gave no explanation, nor gave me any advice on what caused this or what to do to improve the situation. I was too taken aback to ask many questions at the time. I found out on my own that my creatinine level was 2, which means I have only 50% of my kidney function. I know that diabetes can result from heart failure but I have always been told mine was borderline. I have never had to use insulin. Could this be the cause, however?
I have also been anemic and so the doctor prescribed that I inject myself with epoetin alfa 3 times a week to build red blood cells. From what I read, this is usually done with dialysis patients with end stage kidney failure. I have a lot of questions about the state of my kidneys. Can they be restored to full function, can they be stopped from further damage?
I have read - on my own, certainly the VA doctor is no help - about certain nutritional aspects: what to avoid, etc.
Last question, does anyone know of a board for people with kidney failure that is similar to this one? Thanks. firstname.lastname@example.org
Jeff's July 22 reply to Ernie's July 20 July 22, 2002 - Hi, I don't know where you are in South Jersey, but Susan Brozena at Penn in Philadelphia is excellent. email@example.com
Anita C's July 22 reply to Mimmo's July 20, 2002 - Hi Mimmo, I would avoid walking through the metal detector with your ICD. I had an ICD for 9 years prior to my transplant and I always just presented my Medic Alert information at the airport check points, and the security folks would just pull me over to the side and do a hand search. They never gave me any problems about it. I hope it's the same with you. firstname.lastname@example.org
Joseph's July 22 reply to Debbie A's July 20, 2002 - Hi Deb, I myself have a lot of problems and I have to ration out my energy. I plan my day in a way that I won't get too tired. I also plan a nap at a certain of the day, like 2:00 in the afternoon. This helps me a lot. Good luck, Joe. email@example.com
Marvin, July 22, 2002 - Hi, Two months ago I had biventricular pacemaker with a defibrillator. Last Thursday while weighing myself, it went off and I had a terrible shock, which felt like lightning had hit me. I saw yellow lights. When we contacted Guidant about what had happened we discovered that there had been 62 incidences of tachycardia before this shock.
That same day it was suggested that I go on a very potent medicine called amiodarone (Cordarone), which I have started. I am interested to hear from anyone else who has been shocked by their ICD, and to hear their experience. I am also interested to hear from anyone else on amiodarone. Marvin N. firstname.lastname@example.org
Jon's note: Also check the link to the ICD page for online resources
Joseph, July 22, 2002 - Hi, I'm going to have a third pacer/ICD put in next month. Is this a record or what?! This is my third one in less than 2 years. I feel like I need a zipper put in this time. I'm not complaining but just would like to know. Joe. email@example.com
Jon's July y22 reply to Joseph's July 22, 2002 - Hi Joe, Arne Larson had 26 pacemakers implanted in his lifetime. <g> See this. Jon.
Kris S, July 22, 2002 - Hi, I've been lurking for several weeks on behalf of my mom Pat, who has adriamycin-induced DCM. My concern is that my 57 year old mom has great difficulty sleeping. She tried Ambien several months ago but it had the opposite effect - she became "wired" and sleepless. She just stopped taking Restoril, which worked for awhile but then she suffered the opposite effects of restless sleep and incredible itchiness.
She lies awake till 5:00 AM, then falls asleep for a couple of hours. She can't nap during the day. I don't know how she keeps going. Her cardiologist says her heart is fine as far as DCM with an EF of 20% can be fine. Any ideas for some good restful sleep would be appreciated. By the way, she's on Coumadin, so she can't have anything that would interact with her INR.
This site is terrific. I copied some of the low-salt recipes for my mom. Hugs to all, Kris. firstname.lastname@example.org
Jon's July 22 reply to Kris S' July 22, 2002 - Hi Kris, Thanks for the kind words. As far as insomnia and sleep deprivation go, if you and your mom ever figure anything out, please let me know. I am in the same boat and it is murderous. Jon.
Judy H's July 22 reply to Mimmo's July 20, 2002 - Hi, We have discussed this in the ICD support group my husband and I attend. Show your card, let security do a hand search, but do not let them use a hand-held wand on you! It can prevent your ICD from delivering a shock if you should need it right then. This is the routine my husband has followed. email@example.com
Derald's July 22 reply to Debbie A's July 20, 2002 - Hi, The most beneficial thing I can do is take a nap in the afternoon but I try to keep it to about an hour. It recharges me for the evening but lets me sleep through most nights. I've got backup sleeping pills just in case. firstname.lastname@example.org
Jon, July 22, 2002 - Hi everyone, Well, it pays to have a brother in law who is president of a local heating and cooling company. <g> I am once again, oh so cool. ;-) Jon.
Tom S' July 23 reply to Jon's July 22, 2002 - Hi, It seems like there is an organized rebellion of sorts among air conditioning units. My main downstairs unit went out this week along with the gas dryer. Two weeks until the Eagle squats and no relief in sight on the heat wave. Fortunately I do have a friend in the HVAC business who is replacing my air conditioner on Thursday but the dryer is entirely another matter. email@example.com
Jan Buckert, July 24, 2002 - Hi, First, I'd like to thank everyone who contributes to this site. It helped me get through some of the worst fears and has answered a lot of my questions. I was diagnosed with CHF and cardiomyopathy in October of 2001 right after a case of pneumonia. At that time my EF was 33%. In November of 2001 it was 27%. After changing drugs, things started improving and at the end of January of this year my EF was 41% and my hera size was back to normal. Yesterday (July 23), my EF was back to about 60%.
My question is, "Is there a point where I can start getting off the beta-blocker and other drugs that I have been taking?" I didn't have a history of hypertension, I have no blockages (we checked in November of last year), and before I started taking Coreg I had no problems with my cholesterol. I thought that since the infection which caused my heart problems was gone and now that my heart is functioning normally again, I should be able to get off these drugs, especially Coreg, Prinivil, Lasix, and niaspan. My doctor implied that at one point in my treatment but yesterday he said that I'd never be able to go off the beta-blocker, which means that I am stuck with all of them. Why?
I did not really understand his explanation and am hoping someone else can put it into English. I have really bad allergies and was checking on getting tested to go back on allergay shots again because the first set helped me for 20 years. I was told I can't be tested while i am on beta-blockers. I really can't move and my allergies tend to lead to upper respiratory infections, which was what started this whole mess in the first place. firstname.lastname@example.org
Jon's July 24 reply to Jan Buckert's July 24, 2002 - Hi Jan, I'm glad to hear you have improved so much - that's great news! You should stay on a beta-blocker and ACE inhibitor for life, but at reduced doseage, which may help. You should not need the Lasix as far as I can see. It is so important it is in the official heart failure treatment guidelines.
Certain studies like this one suggest that it may be dangerous for a person with heart failure to stop taking beta-blockers. On top of that, once you have heart failure, your heart may be permanently weakened, even if only slightly, so easing its work load with ACE inhibitors from now on can prevent you from relapsing into heart failure.
You see, it's your heart "function" that is currently back to normal, not necessarily your heart "muscle." That may still be weaker than normal but you are "compensated" by the drugs. If you stop taking all the dugs, in time you may very well relapse back into CHF. That's one reason "stages" were added to the heart class system. See The Manual for more on that.
I hope this helps. Fire any more questions right back and we'll try to answer them as best we can. Jon.
Joe, July 24, 2002 - Hi, People don't know what heat is until a fire burns down all the poles for 5 miles. To top it all off, our wells wouldn't function and it was hot, hot, hot.
Three weeks ago, I had a violent reaction to Toprol-XL. It took 3 nurses - not doctors - to finally figure out I couldn't take beta-blockers. I have been telling the docs for 4 months that I couldn't breathe at night, but they never listened. Finally a nurse practioner gave me Norvasc (a calcium channel blocker). My blood pressure has gone down to normal for the first time in 15 years. After 63 years of battling a bad heart, I finally am getting well, praise God. Joe S. email@example.com
Jon's July 24 reply to Joe's July 24, 2002 - Hi Joe, I think it's great you're finally getting some relief and I hope you can find some relief from the heat as well. I hear from a lot of CHFers with high blood pressure whose doctors can't seem to get it under control and so they turn to calcium channel blockers. I think I need to say a few things and I hope you understand that I am not arguing, just trying to give out some useful information for people with high blood pressure to keep in mind.
First, if you have diastolic dysfunction or pulmonary hypertension, CCBs (Calcium Channel Blockers) may be very helpful and pretty safe. However, they are not generally safe for use in CHFers - and there are alternatives that may be just as effective.
To point out the possible increased risk of death in CHFers who take CCBs, see www.chfpatients.com/CHF.htm#dangerous_drugs, www.chfpatients.com/text/calcium_channel_blockers.txt, and http://www.chfpatients.com/text/CHF_treatment_in_a_nutshell.txt (let the first one load and it goes to the right place on the page). If you do really need a CCB, it should definitely be amlodipine - see this page.
Older drugs that used to be mainstay heart failure drugs (until ACE inhibitors came along) include hydralazine and isosorbide dinitrate. These drugs are very effective in lowering blood pressure. In fact, their main drawback as primary heart failure treatment is that many CHFers can't deal with the extremely lowered blood pressure they cause. ;-) I take hydralazine myself to lower my blood pressure because I can no longer tolerate target doses of beta-blockers.
I am not saying that drugs like hydralazine and isosorbide dinitrate will work for every CHFer with high blood pressure that does not respond to beta-blockers and ACE inhibitors. However, I am saying that these drugs should be tried before trying CCBs. I am not a doctor but that's my 2¢ worth. I just hate to see people taking a risk on shortening their lives because their doctors may not be on the ball in this area. Jon.
Gail, July 24, 2002 - Hi, I had a hear attack in September of 2001 and now I have CHF. My doctor tells me to lose weight. When I tell him that I walk 2 hours a day he states that because of my heart damage I can't do aerobic exercise - walk fast enough long enough to lose weight. Does anyone have any suggestions on what I can do besides starvation? Gail. firstname.lastname@example.org
Jon's July 24 reply to Gail's July 24, 2002 - Hi Gail, Well, it seems like I am in the mood to answer everybody today. <g> First, if you can exercise, do so! My very last mailing reported a study that shows aerobic exercise is good for us CHFers. If you can exercise enough to lose weight that way, I say go for it - just don't overdo it so much you get heart failure symptoms again.
The other way to control weight is just to eat less. You don't have to starve yourself. ;-) Often, just writing down everything you eat is enough to point out what you need to cut back on and when. In fact, if you starve yourself by eating an extremely low calorie diet, you will lose weight very, very slowly and you will lose mostly muscle rather than fat. Reducing your calorie intake but not drastically (maybe to about 2,000 calories daily for most people) usually shows the best results. Jon.
Joyce, July 24, 2002 - Hi, Has anyone had experience with legs swelling when you are on your feet too much? My husband's legs swell tight when he is on his feet, even though his doctor states this should only occur when he is sitting and to sit with his legs propped up. email@example.com
Jon's July 24 reply to Joyce's July 24, 2002 - Hi Joyce, This could mean several things. Is he on a true low-sodium diet? This is the number one best way to fight that swelling. It could also mean his drug therapy is not aggressive enough. That does not necessarily mean more diuretics (Lasix, Demadex, Bumex, etc.). It may mean instead that the load on his heart needs to be further reduced with higher doses (or change of specific drugs to something else) of ACE inhibitor or beta-blocker. Also, is he treated by a real heart failure specialist rather than by a general cardiologist, internist, or PCP? This can make a world of difference.
Hopefully, others will have some more ideas too! Jon.
Tracey C, July 24, 2002 - Hi everyone, I was talking with my CHF doctor yesterday about my MUGA results and he said he wanted to order blood tests for diabetes. I asked him why, since I'm not on Coreg at the moment and he said that the Coxsackie virus can cause diabetes as well as DCM, and I have antibodies to that virus family. I've never heard that, but remembered that the diabetes subject came up a couple weeks ago and found this interesting. My EF by MUGA was 48%, which was high enough for him to let me stay off Coreg. Take care, Tracey. firstname.lastname@example.org
Ben B's July 25 reply to Tracey C's July 24, 2002 - Hi, Everything I've read about Coxsackie virus and diabetes says that the virus induces Type I diabetes - basically childhood onset. You would think if you had this type of diabetes someone would have found out by now, but I guess anything is possible. Maybe they've found some link to adult onset diabetes but I don't see anything anywhere on the Internet. email@example.com
Susie, July 25, 2002 - Hi, I was wondering if anyone has had their arteries opened and then had radiation put in right away. I saw it on the news when it was just approved, but I was wondering if it helps keep the arteries opened, or if it is just to help the heart, where it has lost the oxygen it was deprived of when they were clogged. firstname.lastname@example.org
Jon's July 25 reply to Susie's July 25, 2002 - Hi Susie, It is to keep the artery from re-clogging so fast. :-) Jon.
Joe S' July 25 reply to Jon's July 24, 2002 - Hi Jon, Thank you for your imput. I will do some heavy research into what you said about Calcium Channel Blockers. I also will take into consideration that it was a nurse practioner that prescribed these. However, about 2 years ago after following all of your advice, eating right and exercising, my main cardiologist told me I no longer had CHF and could go back to work if I wanted. My only problem was still my aortic valve, which they replaced on March 6. Jon, I am claiming that I am well, not healed, but well. Your input, though, on this will be greatly appreciated. After all, you and your site I feel healed me. Joe S. email@example.com
Jon's note: Hey, hey, there's nothing I like better than to hear that someone is well!
Jon, July 25, 2002 - Hi everyone, Speaking of calcium channel blockers, I'll be mailing out a long one soon on how they relate to heart failure - a series of medical study summaries. So if you aren't on the list, you may want to consider subscribing at www.chfpatients.com/lists.htm.
The following pages on the site have been updated in the past few days:
George S, July 25, 2002 - Hi, I'm a 53 year old male at 5'9" and 149 lbs, getting in better condition by working out (body mass 22) and am taking Coreg, Lisinopril, digoxin, and furosemide (Lasix). In addition to being diagnosed with CHF in May of 2002 stemming from a 1994 heart attack, I have artery blockage in my right leg. While I am not presenting any other CHF symptoms over the past 2 months, my right calf "locks up" when I walk.
The pain in my calf is akin to an extreme charlie horse, caused by a lack of oxygen getting to my lower leg. When I started doing my treadmill 4 weeks ago, I could walk at 2.5 miles per hour for about 2 and 1/2 minutes before the pain stopped me. My heart failure doc at St. Thomas in Nashville explained that "walking through the pain" will cause new capillaries to be formed for increased blood flow.
A month of "walking through the pain" has gotten me up to a maximum of 30 minutes before being forced to stop by pain. While I like the progress, it isn't close enough to get me to even the bottom of my heart rate training zone. My heart rate gets up to 107 and the bottom of my zone is 115.
Two questions: 1) Is there any heart rate adjustment formula for CHFers on meds that "compensates" for the impact meds have on our heart rate? 2) Does anyone have any specific suggestions of how to reduce or eliminate this horrific pain in my calf? Thanks, and keep up the good work. George. firstname.lastname@example.org
Jon's July 25 reply to George S' July 25, 2002 - Hi George, Keep walking. <g> It can take 6 months to really get those new blood vessels fully developed in your leg. I have talked over the heart rate thing with several good heart failure specialists and they say that there is no really good way to figure the effect of our drugs - especially beta-blockers - into exercise "formulas." Their advice is to get a Vo2max test (sometimes called a CPX test) and base your capabilities on a program derived from the results. Jon.
Vivian P's July 25 reply to Marvin's July 22, 2002 - Hi Marvin, I'll attempt to answer based on the ICD and amiodarone experiences of my husband Steve, since he's rarely on the Internet. Please understand that Steve's case is rare and the ICD did save his life.
Steve received his ICD in December, 2001. Ten days later he experienced what his cardiologist called an "electrical storm." His ICD fired 33 times (ouch!) and he described each one as being like a kick in the chest. He passed out, but the ICD did keep his heart pumping long enough for medical help to arrive and administer medications to restore regular heart rhythm.
Steve takes amiodarone (Cordarone) since he's at such high risk of having irregular heart rhythms that the ICD may not be able to convert. However, because of the long half-life of this drug and its side effects, his cardiologist is weaning him off it with the idea of discontinuing it at the end of summer. Thanks to Jon's site, I know we need to ask if another drug will need to be substituted.
Fast forward - Steve went back to work April 1 and is coping fairly well with his CHF. I attribute this to his wonderful attitude in dealing with this disease and of course, the outstanding advances in medical technology. email@example.com
Herbert L's July 25 reply to Jon's July 25, 2002 - Hi Jon, Why can you no longer tolerate target doses of beta-blockers? Recently my CHF doc reduced mine by half because my blood pressure had gotten low (50) and those lousy feelings came back - low energy, SOB, and dizziness. I use furosemide very seldom to control water weight gain so there was nothing there to reduce or eliminate. This was done over the phone via his nurse. I am not schediled to see him until December for our yearly appointment. Thus, my interest in your situation. firstname.lastname@example.org
Jon's note: Insomnia, excess fatigue and high blood sugars :-(
Tracey C's July 25 reply to Ben B's July 25, 2002 - Hi Ben, As far as I know, I don't have diabetes. My blood sugar is always fine. He just ordered the 3 hour liquid test to be sure. I just thought that since so many people with CHF have diabetes, it was interesting when he brought up the virus connection. Take care. email@example.com
Stephanie, July 25, 2002 - Hi, I'm just wondering what people think. I started on hormone replacement therapy (Prephase) about 6 to 9 months before developing cardiomyopathy. Do you think they could be related? Stephanie. firstname.lastname@example.org
Eddie V's July 26 reply to George S' July 25, 2002 - Hi George, Try different shoes. I'm a first time poster, though I've lurked for a couple of months. Jon, I love your site! I was diagnosed with CHF and an EF of 20% in April of 2001 with a history of heart attack, CAD, bypass, asthma, and allergies. Meds have brought my EF back to 35% and I am still working.
Back to the point, I am a letter carrier for the postal service and recently I developed cramps like you describe. I mentioned them to the doc, and tests revealed 3 blockages. The doc gave the same advice and a drug called pletal that is not reccomended for CHFers.
Well, the stuff seemed to start to work since the pain greatly diminished at work, although my palpitations increased. Prior to the diagnosis, I had started wearing athletic style shoes on my route. About 2 weeks after diagnosis, I bought a new pair of my old style walking shoes (raised heel with a taper) and started wearing them. That's about the time I thought the meds started working. I tested to check and the shoes make the difference. The heel must transfer part of the work from the calf to the thigh. You might give it a try. Good luck. email@example.com
Herbert L's July 26 reply to George S' July 25, 2002 - Hi, My CHF doc responded to my question about maximum heart rate during exercise by telling me to not exceed 100 at any time. It would be interesting to learn if anyone else has been told differently by their CHF doctor. firstname.lastname@example.org
Joseph's July 26 reply to Vivian P's July 25, 2002 - Hi, My amiodarone became less effective. My EP doc just did an ablation on me and so far it seems to be working to stop a-fib. My ICD gives a lot of protection and I don't know how people can live without one anymore. It sure puts my mind at ease. Joe. email@example.com
Janet H's July 27 reply to Herbert L's July 26, 2002 - Hi Herbert, I was told not more then 10 to 20 beats over my resting heart rate in cardiac rehab, but at that time I had an EF of 20% and my resting heart rate was up in the 90s. My pulse rate and EF are much better now, but I'm still unsure of my limitations. firstname.lastname@example.org
Dina Rice, July 27, 2002 - Hi, I haven't been on in awhile but have been up reading a lot tonight. Has anyone had their AV node ablated so that their pacemaker does the sole controlling of their heart rate? If so, how is that going? My husband is having it done August 7. I've asked before, but no one responded, so I wonder if anyone around here even has had that done.
This will be his fourth procedure since March. We know there are risks with it, but are hoping to decrease some of his harmful meds. He is on 600mg amiodarone per day and has been on it for over 2 years. email@example.com
Dorothy Powell's July 27 reply to Herbert L's July 26, 2002 - Hi Herbert, I asked my doc the same question and he told me 120. I had been exercising regularly for 8 years. I'd think the answer has many variables and should be asked by each patient. DPowell806@aol.com
Derald G, July 27, 2002 - Hi Jon, I have a question about SOB. I still have feelings of SOB. I've been checked a couple of times for O2 reading and they are good. I asked my PCP about a CPX test (Vo2max test) and he recommended a spirometry test first, which came back normal. What do you think about the results of a good O2 and spirometry test versus a CPX? firstname.lastname@example.org
Jon's July 27 reply to Derald G's July 27, 2002 - The literature is clear and abundant - for heart failure patients, there is no substitute for the Vo2max test. Studies confirm that PCPs and internists are far less likely to think it is important, while CHF specialists think it is very important. Jon.
Dan H's July 27 reply to Kris' July 22, 2002 - Hi, When I have trouble sleeping I take a preparation that contains passionflower and chamomile. I am also on Coumadin and it doesn't seem to affect my INR at all. email@example.com
George S, July 29, 2002 - Hi, Concerning my July 25th post asking about heart rate when exercising and extreme pain in right calf, I spent most of Friday trying to track down solid answers at the St. Thomas Heart Failure Clinic (Nashville) and got some definitive responses. The head of Cardiac/Heart Failure Rehab indicated there is no one answer that applies to all patients on heart rate. As a general rule of thumb, in their rehab program they start patients off at no more than 20 above their resting (medicated) heart rate. Please check with your cardiac doc.
On the oxygen blockage to my right calf, she was amazed at the progress over the last 2 months, but indicated the building of new capillaries could take as much as a year, so as Jon suggested, I walk on. Many thanks to Jon, Herbert L, Eddie V, Dorthy P, and Jon for taking the time to share their thoughts and experience. George. firstname.lastname@example.org
Scott Brown's July 29 reply to Herbert L's July 26, 2002 - Hi Herbert, It is important for all heart failure patients to talk about exercise tolerance with their cardiologist. To figure out my target heart rate, they increased the incline and speed of a treadmill continuously under medical supervision. For me, my target heart rate was 150 bpm. I think that is pretty high considering that my LVEF is 25% and RVEF is 24%. This has not improved in the past year. I am only 32, so my risk of heart attack it not very high. I think most cardiologists are going to be pretty conservative with their estimates. After all, they have great responsibility.
It is different for everyone depending on a number of variables. I will say that I always feel better when I exercise. I hope you keep it up. I will say that beta-blockers put an artificial ceiling on heart rate. While I was hooked up to the monitor, my heart would keep increasing in beats until it got to 160, then the line flattened at 160. I hope that's useful. Scott. email@example.com
Scott Brown, July 29, 2002 - Hi, I have a question about chest pain. I get a dull pain on my right side of my chest. I'm not exactly sure what is causing it, but it feels like a "muscle cramp" in my heart. It almost always seems to happen after I take a water pill (diuretic). I thought it was potassium, so I would take some extra Slow-K. However, I'm not convinced this is helping. My cardiologist tells me to ignore the chest pains, because I am not a likely heart attack candidate.
The problem seems to go away as my weight goes back up. I wonder if the chest aching is related to lower blood pressure? I'm hoping this is just another "phase" my CHF is going through. Thanks, Scott B. firstname.lastname@example.org
Jon, July 29, 2002 - Hi everyone, If you have at any time suffered any kind of damage from a heart cath procedure, or if you have chronic trouble of any kind resulting from a cath procedure, please e-mail me here. Thanks, Jon.
Rita's July 29 reply to Gail's July 24, 2002 - Hi Gail, You asked what exercise you can do to lose weight. I strongly recommend water aerobics! I am in the same boat as you - I have CHF and diabetes, and was overweight. I couldn't do much aerobic exercise until I discovered water aerobics. It is wonderful. Go at least 3 times a week for 45 minutes. Try to follow a basic vegetarian diet. You won't go hungry if you eat lots of vegetables. I lost 20 pounds in about 3 months. It was a combination of eating fewer calories and the water aerobics.
I recommend a diet from plants: fruits, vegetables, grains, beans, and soy protein. I used to think we had to have meat for protein but I've recently discovered we don't need it as much as we need vegetables. Fish and chicken occasionally are okay, but you'll see a better weight loss if you cut out beef.
Find a water aerobics class and I know you will love it. It's fun and good exercise, with no stress on any joints. It's even great for arthritis. The YMCA and most colleges offer it. Good luck, Rita. RDeanStokes@aol.com
Karen F's July 31 reply to Rita's July 29, 2002 - Hi Rita, I have to add my two cents here. While water aerobics may be a good way to get exercise for some people, I have to tell you that when I tried it a few years ago, the humidity of the indoor pool was too much for me and made it difficult to breathe even when not exercising. I had a very good instructor who encouraged everyone to work out at their own pace and difficulty level, but I found the environment was just too hard on me and my tolerance of it did not improve after several weeks of trying.
I would suggest to Gail to try it by all means - it may be the perfect form of exercise for her - but not to be discouraged if she discovers that she has a hard time tolerating the humid environment and finds out that it may not be an ideal situation for her. Everyone has to find what works best for them and for some of us there is more error than trial before you hit pay dirt. Best of luck! email@example.com
Shauna, July 31, 2002 - Hi, This is the first time that I have posted here. I just found you all a couple of days ago, and have enjoyed reading The Manual and other very valuable information at this site. My goodness Jon, you have done such a wonderful job here! It appears that the Lord is really using you. Thank you.
I am in the same boat as most of you. Went thru the viral cardiomyopathy thing, and the damage that it did has also caused CHF. I am a stage C and a class 3. I also have diabetes, something that came along after about 4 years of CHF. Has anyone read the book "Diabetes Solution" by Dr. Richard Bernstein?
Rita, how are your blood sugar levels? Are you able to keep them within normal ranges most of the time? I am very interested to hear. I also need to add my name to the list of people having air conditioner problems! <g> Mine broke on Saturday. We are very fortunate because we are still under builder warranty. It needed a new compressor already! It's very hard to live without air conditioning in southern Florida! God bless everyone here. Stay cool! Shauna, age 43 with DCM, CHF, and Type II diabetes. firstname.lastname@example.org
Herbert L's July 31 reply to Shauna's July 31, 2002 - Hi there, What does it mean when you say "I am a stage C and a class 3?" Respectfully, Herb. email@example.com
Jon's July 31 reply to Herbert L's July 31, 2002 - Hi Herbert, It's part of the "new" class system for heart failure. You can check it out here (let it load) :-) Jon.
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