Ben B 1-16 how do you know what you can really do?
Don G 1-16 seek help with cookbook comments
Sherrell G's 1-16 reply to Kelly's 1-14 it's ok to be scared & more
Mary Jo Slafter 1-16 intro & more
Smitty S 1-16 question about Coreg dose & depression/sleep
Tom S' 1-16 reply to John S' 1-15 help for those with no health insurance
Jack's 1-16 reply to Smitty S' 1-16 raising Coreg dose
Tom D 1-16 Chris H & Smitty S - Coreg dose
John S' 1-16 reply to Tom S' 1-16 medical costs, aid & more
Sharon 1-16 what is normal EF?
Nanc 1-16 update on Liz J
Jay Q's 1-16 reply to Ben B's 1-16 history, numbers, chemo-related illness
Kay R's 1-16 reply to John S' 1-15 questions, research
Bob H 1-16 question about IV chelation
Bill D's 1-16 reply to Renee's 1-15 lots of info here for the reading
Bill D's 1-16 reply to Ricardo A's 1-15 high EF, info resources, valve surgery & more
Bill D's 1-17 reply to Sharon ?'s 1-16 CHF info, EF & more
Bill D's 1-17 reply to Tom D's 1-16 Coreg dose & questions
John S' 1-17 reply to Kay R's 1-16 careers, doctors, research & more
Jennifer's 1-17 reply to Tina's 1-14 we should talk to each other
Ricardo A's 1-17 reply Bill D's 1-16 Sharon, echos, EF questions & more
StanleyWojciak 1-17 lung disease, questions & more
Tina 1-17 have postpartum cardiomyopathy - seek e-mail
Jon 1-18 Paul got a heart! & more
Ben B's 1-18 reply to Tina's 1-17 postpartum cardiomyopathy
Bill D's 1-18 reply to Ricardo A's 1-17 insurance companies, disease & more
Bill D's 1-18 reply to Mary Jo S' 1-16 CHF info & more
Paul S 1-18 I got a heart! & much more
Jon 1-19 posts will be slow
Jon 1-19 update
Jon 1-19 IV drugs Freddie B mentioned
Kay R's 1-19 reply to Ricardo' A's 1-17 insurance commissioner helps here
Tom D's 1-19 reply to Bill D's 1-17 Coreg dose & BP, & more
Dallas 1-19 update, exercise & more
Dawna R 1-19 drug trial, exercise, questions & more
Jon's 1-19 reply to Dawna R's 1-19 Valsartan
Robin W's 1-19 reply to Ben B's 1-16 similar cause, results
Robin W 1-19 keeping everyone straight
Bev T 1-19 Coreg dose/effect question
Pam E 1-19 24 hour BP test all over again
Linda J 1-19 Paul S, overdoing it & more
John S' 1-19 reply to Bob H's 1-16 IV chelation conversation
Tina 1-19 thanks & e-mail explanation
Diane G 1-19 intro, history, lots of questions
Pete ? 1-19 softened water/sodium/filtration question
Freddie B 1-22 transplant rules change (USA)
Candy 1-22 re-evaluated & cannot work
Bill D's 1-22 reply to Diane G's 1-19 welcome - lots of CHF info here
Jon 1-22 gotta move
Paul M's 1-22 reply to Bev T's 1-19 Coreg dose
Bill D's 1-22 reply to Pete ?'s 1-19 water hardness & sodium levels
Bill D's 1-22 reply to Ricardo A's 1-17 I goofed, congenital problems & more
Nanc 1-22 update on Liz - good news
Ruthie A's 1-22 reply to Pete ?'s 1-19 softened water & sodium levels
Diane G 1-22 what's a MUGA?
Jennifer 1-22 EF measurement question, update & more
Felix O 1-23 am much improved - SSD & long-term questions
Anne 1-23 update, breathing machine, new drug & more
Renee M 1-23 questions - allergies, diabetes, chest pain & more
David S 1-23 update, frustration, Coreg question & more
Jon's 1-23 reply to David S' 1-23 getting used to Coreg second time
Janet ? 1-23 update, getting right doc critical, chats & more
Janet S 1-23 muscle cramp question
Jon's 1-23 reply to Janet S' 1-23 electrolyte imbalance possibility
Tina 1-23 now have my own e-mail address & more
Ken M's 1-23 reply to Pete's 1-19 sodium in water supply & fluid intake question
Jack ?'s 1-23 reply to Chris H's 1-14 Coreg experience
Lori Wilson 1-23 heart related articles
Ronald J 1-23 thanks for the info & more
Dan C 1-23 seek MULTIFIT definition
Jon's 1-23 reply to Dan C's 1-23 MULTIFIT definition
Ben B 1-23 EF fluctuation, confusing illness
Luc D 1-23 worried about Liz - any updates?
Pam E 1-23 testing & awaiting results stressing me out
Jon 1-23 Web site info
Jamie's 1-23 reply to Jennifer's 1-22 EF measurements, meds & more
Jamie 1-23 update, Tina, Pam E, & more
Brenda H 1-23 update, sudden death worry
Jon's 1-23 reply to Brenda H's 1-23 sudden death worry
Don G 1-23 no salt recipe book progress & thanks
Jay Q's 1-23 reply to Pete ?'s 1-19 softened water & more
Gail M 1-23 introduction
Paul S 1-23 update, smoking tempting me & more
Jon's 1-23 reply to Paul S' 1-23 don't give in
Tom S' 1-23 reply to Jon's 1-23 we'll find ya!
Pam E 1-24 request e-mail from Coreg users
Patricia G 1-24 booklet suggestion on CoQ10
Al L 1-24 beta-blocker, EF, cardiologist questions
David S' 1-24 reply to Jon's 1-23 thanks, and meds & tiredness question
Jon's 1-24 reply to David S' 1-24 meds, tiredness, reasons
Renee M 1-24 booboo, thyroid & CM, & more
Bill D's 1-24 reply to Felix O's 1-23 EF tests, Disability reviews & more
Bill D's 1-24 reply to Gail M's 1-23 lots of info
Bill D's 1-24 reply to Ken M's 1-23 fluid intake restriction
Jon's 1-24 reply to Bill D's 1-24 fluid intake restriction
Ben B's 1-25 reply to Patricia G's 1-24 CoQ10 dose
Pam E 1-25 update
John Griffith 1-25 hello & thank you
Martin Ludwig's 1-25 reply to Pam E's 1-25 coping with stress
Allen Cravener's 1-25 reply to Jennifer's 1-22 irregular beats & echo
Sue B 1-25 prayer request
Tina's 1-25 reply to Jamie's 1-23 thanks & update
Ben B 1-25 new treatment guidelines
Margaret J 1-25 questions - multiple illneses, progression & more
Lynn D's 1-26 reply to Margaret J's 1-25 Emory's database & more
Fay 1-26 what is a good type & brand scale?
Ben B's 1-26 reply to Allen C's 1-25 fluid buildup, symptom & hospital questions
Lee R's 10-26 reply to John G's 1-25 welcome, bios & more
Kim S' 10-26 reply to Ben B's 1-18 peripartum cardiomyopathy info
Rick M 1-26 CHF article
Patricia G's 1-26 reply to Ben B's 1-25 CoQ10 price & sources
Jon's 1-26 reply to Patricia G's 1-26 questions about dose
Susan A 1-26 seeking DCM information
Doug K's 1-26 reply to Margaret J's 1-25 multiple illnesses
Paul M's 1-27 reply to Fay's 1-26 weight scales
Patricia G's 1-27 reply to Jon's 1-26 CoQ10 booklet
Jon's 1-27 reply to Patricia G's 1-27 CoQ10 dose and a person's size
Patrick ? 1-27 Coreg & sexual dysfunction questions
Jon's 1-27 reply to Patrick's 1-27 Vesnarinone trial
Steve Martin's 1-27 reply to Ben B's 1-26 CoQ10 prices & sources, & a question
Jon's 1-27 reply to Steve Martin's 1-27 CoQ10 blood testing
LeeAnn 1-27 update, Coreg, new drug trial, questions
Jon's 1-27 reply to LeeAnn's 1-27 drug trial info
Sharon J W 1-27 intro
Ellen ? 1-27 soft water question
Kay's 1-27 reply to Fay's 1-26 weight scales
Wanda Foster's 1-27 reply to Renee M's 1-23 please send correct e-mail address
Bill D's 1-28 reply to Susan A's 1-26 illnesses, symptoms & information
Bill D's 1-28 reply to Fay's 1-26 weight scales
Harold Weems 1-28 intro
Robin W 1-28 update, question for Paul S
Paul M's 1-28 reply to Allen Cravener's 1-27 water weight-gain questions
Pete P 1-28 Ken, Ellen, water & sodium
Paul S' 1-28 reply to LeeAnn D's 1-27 thanks, update, prayer requests & more
Peggy A 1-28 supraventricular tachycardia questions
Brenda H 1-28 Tina, Coreg questions & more
Patricia G 1-28 CoQ10 dose advice correction
Kim S 1-28 EF went up! upcoming surgery & more
Ginger 1-28 I'm back! Chat tonight
Sharon J W 1-28 e-mail address correction & more
Allen Cravener's 1-28 reply to Paul M's 1-28 swelling & delaying getting help
Donald G 1-28 a big thank you to everyone
Jennifer 1-28 update, chat times, BP questions
Jon's 1-28 reply to Jennifer's 1-28 time zones, high BP
Henry Ticknor 1-28 SKB advertising Coreg big-time
Jon's 1-28 reply to Henry Ticknor's 1-28 they're getting antsy
Jennifer's 1-28 reply to Kim S' 1-28 echo, palpitations, meds, PPCM & more
Jon 1-28 heart bullets, 3D & sleepwalking
Tina 1-28 Jennifer, please write
Bill D's 1-28 reply to Harold Weems' 1-28 welcome, take a look around
Bill D's 1-28 reply to Peggy A's 1-28 tachycardia & more
Bill D's 1-28 reply to Sharon J W's 1-28 heart block, CHF info & more
Sigmund 1-29 update, Coreg experience & more
Candy 1-29 meds side effect question
Justin M 1-29 intro, anyone else 20 - 30 years old here?
Paul M 1-29 update, doctors, fighting for your health
LeeAnn D's 1-29 reply to Allen Cravener's 1-28 are you in line for defibrillator?
LeeAnn D 1-29 absorbing CoQ10
Tom S 1-29 watch for too much Coumadin
Jennifer R's 1-29 reply to Jon's 1-28 chat times, errand to run
Sharon J W's 1-29 reply to Bill D's 1-28 pacemaker, BP, memory & more
Jill M 1-28 to those with peripartum cardiomyopathy
Gail M 1-29 drug trial info & have questions
Jon's 1-29 reply to Gail M's 1-29 drug trial experience
Jon's 1-29 reply to Peggy A's 1-28 my sister has this condition also
Ben B's 1-29 reply to Felix O's 1-23 Disability & working
Milo 1-29 book excerpt
Roger H 1-29 update - anyone have BP go up with Coreg?
Bill D's 1-29 reply to Gail M's 1-29 drop me a line, if you would
Bill D's 1-29 reply to Candy's 1-29 potassium & diuretics possible cause
Dee Whitfield 1-29 intro, am scared, weight loss questions & more
Candy's 1-29 reply to Jon's 1-29 meds, diet & more
John Len's 1-30 reply to Ben B's 1-29 Disability & working
Ruthie A's 1-30 reply to Dee Whitfield's 1-29 losing weight
Jack Teter's 1-30 update, support & more
Regina R 1-30 on Coumadin, no blood tests, should I worry?
Candy's 1-30 reply to Bill D's 1-29 more on muscle/joint pain
Anne M's 1-30 reply to Gail M's 1-29 moxonidine trial
Pat Latimer's 1-30 reply to Ben B's 1-29 Disability & work
Bill D's 1-30 reply to Dee Whitfield's 1-29 weight loss story, welcome
Bill D's 1-30 reply to Justin's 1-27 welcome, age & illness, info
Paul M's 1-30 reply to Bill D's 1-29 diuretics & potassium
Milo 1-31 book excerpt
Gus R's 1-31 reply to Regina R's 1-30 Coumadin & blood testing
Tom S 1-31 Jack Teter, Regina R & volunteer work
Pat Latimer's 1-31 reply to Ben B's 1-29 SSD & trial work period info
Jennifer R's 1-31 reply to Jamie's 1-30 vasectomy - his turn
Dawna R's 1-31 reply to Ben B's 1-29 SSD & trial work period
Doug K 1-31 Coumadin & blood testing
Felix O's 1-31 reply to Ben B's 1-29 SSD & trial work period
Bill D's 1-31 reply to Regina R's 1-30 Coumadin & blood testing
Tina 1-31 is digoxin too dangerous?
John Len 1-31 cholesterol drug & muscle pain question
Linda ? 1-31 new here & scared to death
Jon's 1-31 reply to Linda ?'s 1-31 naw - this is scary!
Jon's 1-31 reply to John Len's 1-31 muscle pain & cholesterol lowering drugs
Jon 1-31 update on my daughter
Ben B, January 16, 1999 - Hi, I just wanted to vent about what is so frustrating about this disease. As an engineer, I am used to quantifiable results, such as ejection fraction. When I read Dr. Marc Silver's book, he made a big deal about a cut-off of 25% as a marker for prognosis, then basically says it doesn't really mean that much. To tell the truth, I didn't feel great before I found out my EF number, but after I found out I went into "mourning" for about a month, and couldn't leave the house for much. Now, having adjusted, I feel almost normal every day, with some bad spots but it is hard to know what to do. I have been on Disability but really feel like I could work most of the time. There is another guy at work with chemotherapy related DCM/CHF, the same EF, who hasn't missed a beat in 2 years. I am curious about other people's activity levels and how they tell what they can and cannot do. Ben B, EF 20.
Don G, January 16, 1999 - Hi, I need some help with the no salt cookbook. The book is at Simon and Schuster, with good possibilities that it will be published by them. However, I've run into a New York editor problem. They don't know what "no salt" means. They think all the food we eat must taste as though salt is in it. They also are not totally aware of all the people who really need a no salt, low sodium cookbook. They like what they've seen but need to hear from a few of you. If those of you who have tried some of the recipes could e-mail me your comments (hopefully favorable <G>), I would deeply appreciate it. When doing so, if you would give me permission to publish it with the recipe you mention, I would very much appreciate that, too. I got this comment from a reader here, and include it to show what would really help:
The Applesauce Pork Chops were delicious and easy to prepare. My wife, who is not always thrilled about my low sodium cooking, even loved them. The thing I really like about Don's recipes is they are quick and easy to prepare, and use common, easy to find ingredients. Many cookbooks fail in that regard. Pete E.
Please include your name and e-mail address. Thanks, Don G. email@example.com
Sherrell G's January 16 reply to Kelly's January 14, 1999 - Hi Kelly, I e-mailed you and then decided that others may be scared as well, so I decided to post here. It is okay to be scared. Cardiomyopathy and Congestive Heart Failure are scary diseases. No one knows whether we will feel better tomorrow or worse. No one can tell us what the future holds but that is the way it is with everyone else too, regardless of their health. So what do we do? Worrying does not help. Your emotions can affect you physically. You mentioned prayer. For prayer to work, you must believe God answers prayer. So if you have prayed for Him to help you not be so scared and to take care of you, lay that burden down and give Him a chance to work. I hope you have good family and friend support. Whenever I get down or scared, usually one of my family or friends can say just the right thing to help me put life back into perspective again. Pace your day's activities so you do not get as tired out. Find something that does not take much energy to do to make you feel useful. Hope this helps. Sherrell. firstname.lastname@example.org
Mary Jo Slafter, January 16, 1999 - Howdy from a dairy farm in Nebraska! I have finally been diagnosed with CHF, after several hospital trips. I feel very lucky to have such a good doctor and also lucky to have found your site! Thank you for the forum and for a great site. I am going to do a denial thing for awhile. During that time, I plan to get educated, a little tougher on the outside (can't stop crying now) and stronger on the inside (running real scared now). I will visit here every day. Thank you to all who are posting - you are helping already! You all will be in my prayers, too. God bless. email@example.com
Smitty S, January 16, 1999 - Hi everyone, I've been lurking out on the fringes and thought I'd duck in with a question. I started taking Coreg this Fall and had the problem of increased CHF symptoms with the 3 and 6mg dosages but that passed. When I went to the 12mg dose, I quit sleeping and by the fifth day, I felt as though I would shatter. Believe me, there was not enough money in the world to keep me on that dosage. It scared me. I decreased to the 6mg dose and have been fine. I'm thinking maybe it was a sort of depression and wondered if anyone else had a similar reaction. I think of y'all everyday and thank God for you. Smitty. firstname.lastname@example.org
Tom S' January 16 reply to John S' January 15, 1999 - Hi, A payment of $1,700 a month to anybody, short of a vacation home on the beach, seems exhorbitant to me. My doc's recommended a payment of $10 per month was adequate for a man of my means. Must be pure "southern hospitality" exhuding from my Yankee doctors. They probably caught it from our fine Carolina water. My doctors also insist on providing me with plenty of Coreg and other drugs from their little office warehouse of "samples." Locally, there are church groups and others who assist with providing everything from oxygen tanks and supplies, walkers, hospital beds and a lot of other rental type items, to those that can't afford it (translate to "without medical insurance"). I'll never forget being fresh out of the hospital needing both oxygen and a hospital bed and nary the means to pay for it, and all worried about it, when the medical supply rental company owner told me it was all being paid for by a church I didn't even attend. Perhaps you just haven't shaken the right bushes or asked for assistance. Give it a try and save some bucks for your retirement home at the beach.
Jack's January 16 reply to Smitty S' January 16, 1999 - Hi, I do not think my reaction was as tough as yours, however, I recall that working up in dose was the worst part of Coreg treatment. There was a time when working up that I thought about not moving up to next dose, and I remember I was not at all convinced there was a benefit. There was a very slow progression to feeling better, but persevering was definitely worth it. I have now been on Coreg (among others) for 18 months, at 50mg twice a day. My EF went from 20 to 44, and I am stable now. Life is ohhhh-kayyyy.
Tom D, January 16, 1999 - Hi, This is my first post, so bear with me. I have CHF, v-tach, a-fib, an EF of 14, and an ICD. I have low BP, a pulse in the low 50s, and weigh 150lbs. I was started on 3mg Coreg twice a day on 9/18/98. Every 2 or 3 weeks, it has been increased by only 3mg a day. I was told that I was not in a race to reach a level of Coreg, but get to the level my body could handle. Today I start on 12mg twice a day and I am dreading it, because every increase seems to knock me back for at least 3 or 4 days or more. I syuffer loss of appetite, sleep, depression, and am tired all the time with zero activity, but then things go back to normal(?), at least for me. I have been told by my doctor and nurse that this is not an unusual reaction to Coreg. We are all different and will react differently. email@example.com
John S' January 16 reply to Tom S' January 16, 1999 - Hi Tom, No, that isn't a single payment, but all the ER, hospital, doctors, and others, added togethre. Some payments are $10 a month. I don't mind. They were there when I needed them. Around $25,000 was actually written off and forgiven, leaving a good bit more to be paid, but I consider that to be reasonable Southern hospitality. We didn't even ask, they offered the write-off to us several times before we accepted. I was told, "If you make it big, remember the hospital." Be assured I will. The main doctor (Richard Smalling) has 2 Nobel prizes and has yet to charge me for anything but reduced amounts for the costs of the tests. He has about a half dozen doctors following him around all the time, so each visit to his office lasts 3 - 4 hours, so each one can ask questions and mash me all over, no charge. It's amazing. All these people! Everybody working hard to help me. So now, everybody else has done what they do, and they did it all very, very well, my mission is to get better. I'm expecting an EF in the 50s in Febuary, my sixth month. Then I'm thinking about making it big. :-)
Sharon, January 16, 1999 - Hi, What is a normal EF? firstname.lastname@example.org
Nanc, January 16, 1999 - Rejoice! Liz' update is hopeful. She is responding to folks and can squeeze a hand. It sure feels good to be able to send this message. I hope that tomorrow I have even better to report. God bless, Nanc. email@example.com
Jay Q's January 16 reply to Ben B's January 16, 1999 - Hi Ben, I understand your puzzlement. I came down with presumed chemotherapy-related DCM last July. After the initial several days of severe lung congestion and tiredness, I felt fine and have been feeling so ever since. I found I have right bundle branch block (ECG) and a very low ejection fraction of 10-15% on my last echocardiogram. My internist says "Well, echocardiogram findings may not be very meaningful," which I believe some others will confirm. I am currently exercising almost daily but am not "pushing the envelope" and am keeping my fingers crossed. I am on mild dosages of furosemide, a loop diuretic, and Diovan, an Ace-2 inhibitor. I finally got my regular doctor to refer me to a cardiologist, whom I will see on the 28th. If I learn anything new, I will give it to the forum. Cheers. Jay Q. firstname.lastname@example.org
Kay R's January 16 reply to John S' January 15, 1999 - Hello John S, From the sound of your medical expenses, you must have been quite ill. I would be interested to know if you are involved in a research program. I drew that conclusion since research doctors don't generally treat patients as the primary physician. Are you employed in the medical field? Your post sounds like medical orientation. If you are involved in a research project, I would like to hear more about it and be able to follow your progress. Thanks, Kay.
Bob H, January 16, 1999 - Hi, I have been recently reading some doctors' comments about a form of treatment that is non-invasive for the CAD part. Can anyone furnish me with information or experience they have had with IV chelation? I have found a site and read some about it but I would like someone who has first hand information about. Jon, thanks again. I will thank you every time I post. Bob H. email@example.com
Jon's Note: No need - I'm just the maintenance man <G>
Bill D's January 16 reply to Renee's January 15, 1999 - Hi Renee, I'm glad you found us. Welcome to Jon's Place. Don't forget that his "Site Index" will tell you everything you didn't know about your CHF. It will remind you that every time you "stretch it" you may pay dearly for it in the next couple of days! Lots of us go to "The Archives" when Jon isn't well enough to post messages for a while. It gives us old messages to read 'til Jon gets back. Don't forget to look in "Who's Who" too. You can read about some of us and compare our medications to the ones you take. Bill. firstname.lastname@example.org
Bill D's January 16 reply to Ricardo A's January 15, 1999 - Hi Ric, I've been wondering about your LVEF being so high. If Jon can't answer it, maybe you should look under Jon's "Site Index." There is a link to the Cleveland Clinic at Links and you can post a question for their cardiologists to answer. It takes a couple of days but answer you, they will. I'll be looking, too. I'm guessing the ventricle pumps out the extra blood because the valve isn't closed. The problem might be that a lot of it flows right back in through the same leaky valve. Let's see what they say, ok? About what time is right to get the valve(s) replaced, I'd say as soon as you can. You don't want to wait until you are weaker or get an infection! You should feel a lot better once those valves start working. Bill. email@example.com
Bill D's January 17 reply to Sharon ?'s January 16, 1999 - Hi Sharon, Welcome to Jon's Place! In addition to the forums, Jon has 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 how we try to cope with CHF. A "normal" EF runs 55 - 60%. It's not a very good measurement of how sick we are. Not only does it change all the time but some of us seem to live a normal life with an 8 - 10 EF. Others are "basket cases" with an EF of 35%. What's important is how you feel! Bill. firstname.lastname@example.org
Bill D's January 17 reply to Tom D's January 16, 1999 - Hi Tom, With your low heart beat and your low BP, I can see why you're dreading the Coreg increase! It was first invented to control high blood pressure and the benefits for us CHFers were discovered by accident. Each increased dose lowers both, and it takes time for your body to adjust. In that they started you back in September, have they been jacking you up 3mg at a time (3-6-9-12) or are they going to double the dose this time? A few of us us couldn't hack it and quit. Others had problems with every increase but were able to stick it out. Yet others never noticed it at all. I hope you make it but you have a lot of company if you can't! Bill. email@example.com
John S' January 17 reply to Kay R's January 16, 1999 - Hi Kay, No, I'm not a medical person. I'm an Instrument Engineer by education, seminar trainer teaching "organizational effectiveness" and lately piano player/comedian in a restaurant to keep stress down. I managed to run up a pretty good bill, mostly because my symptoms threw everybody off in the ER, and for about a week in the hospital. I was really sick but still working and looking great on blood and other test workups - low cholesterol, BP of 120/70, but sometimes had a fast heartbeat. I was carrying 54 pounds of fluid, which came off during a week in the Critical Unit, but made it difficult get normal heart sounds and EKG. They used radioactive gases in the lungs for one test, looking for blood clots, latent asthma and the like, lots of MRI and cat scanny type things all over my body, and checked everything from renal to adrenal. In a sleep study, they found me shutting almost completely down several times a night, an adult version of sudden infant syndrome, causing a type of shock. Despite all the trouble it caused, it turned out to be simply a lazy thyroid, easily managed with synthroid tablets.
They suspected something cardiovascular but couldn't prove it and all this was very expensive. Then came the doppler or echo tests. After that, I was told I had 2 years to live. I thought they had the wrong room. That's when I contacted 2 different sets of research doctors. I looked up only doctors who had some fame. At first, their nurses told me there was a 3 year waiting period to see a particular doctor. I explained I was looking for a second opinion and asked if I could send my records to them. Once they saw my records, appointments came open. One bunch was ready to put in a new heart. They explained that most patients have ruined their hearts, so if they get a new one, they may ruin that one also. I had a cold that knocked out the heart valves but that being done with, had nothing in my makeup that would hurt a new heart. They were ready to go but I hesitated. The second set of researchers were interested because of genetics. Nobody in my family ever had heart problems. There are lots of studies and programs to enter here in Houston but I improved so quickly, there was no need. I only saw the beginnings of these activities. If you write Dr. Smalling or Dr. Fuentes (care of St. Luke's or Texas Medical Center) with a specific problem, you may get a response. There may be a place on the Net where studies are announced but I just went looking.
Jennifer's January 17 reply to Tina's January 14, 1999 - Hi Tina, I wrote you an e-mail a couple of days ago. I guess if you just want to post on here that is ok. What did you want to know? I am overwhelmed also, as you said you were. Write me back and we can chat. I will check on here everyday, or you can e-mail me. Love to talk to you soon. Keep your spirits up. Sincerely, Jennifer. JRobi87102@aol.com
Ricardo A's January 17 reply to Bill D's January 16, 1999 - Hi Bill, Thanks for your immediate reply. I will try Cleveland Clinic for some answers on this high EF issue. I am just curious because most of the CHFers in this forum have low EF and I think I'm the only one with a high EF. To Sharon - a normal EF is 55% to 75%, based on my echo report. Regarding my valve operation, my HMO will not cover the expenses because they claim that my sickness is congenital. Can I dispute their claim and prove otherwise that it was an aquired disease? Have you encountered this kind of issue in the USA? Thanks again. Ric. firstname.lastname@example.org
Stanley Wojciak, January 17, 1999 - Hi, Just some general information and possibly looking for more info for myself. I just visited my older brother (75) in the hospital with CHF and he just started on oxygen about a month ago. He had been an active golfer before that and walked each day for exercise. Within the past week, he has been put on oxygen 24 hours a day. He is on prednisone at the present time and possibly a beta-blocker. My older sister died from pulmonary fibrosis 2 years ago and he has also developed it. I went to a pulmonary doctor a week ago and there is a possibility that I also have it - shortness of breath and some suspicious lesions on my lungs. I have also brought up small bits of very "sticky" phlegm. I am currently on a 3 week regimen of prednisone and using 2 different inhalers to see if they will make a difference. All 3 of us have had some kind of heart surgery - 2 had triple bypass and I had angioplasty. Do you think there might be something here triggering this pulmonary fibrosis? Any thoughts on any of this?
Tina, January 17, 1999 - Hi everyone, I just had a baby boy on 10/16/98. One day after delivery I was diagnosed with postpartum cardiomyopathy. My EF was at 23%. I amy very scared and have questions. If someone can write, I would be very grateful. I didn't think that someone my age can get such a scary disease. Tina, age 21. Thanks and God bless.
Jon's Note: Tina, people have written you and not received any reply back. You can write me for technical help, if you need it. email@example.com.
Jon, January 18, 1999 - Hi everyone, Here's some good news. Paul S - of LVAD fame - got his heart on January 11, 1999! His e-mail address is firstname.lastname@example.org. Also, would someone on AOL, with WWW experience, please e-mail Tina at Vamp975@aol.com? New to the Web, we just want to be sure her e-mail is functioning properly and I don't know anything about AOL. Thanks, Jon.
Ben B's January 18 reply to Tina's January 17, 1999 - Hi Tina, I am no expert on this but from what I have read on this Web site, in a couple books, plus what my sister (who is a nurse) tells me, postpartum cardiomyopathy is not uncommon and it has a pretty good prognosis. Of all the types of CHF, it is probably the one you are most likely to recover from. It seems like most of the posts on this Web site of full recoveries are from young women with this condition, and there are many of them, if you read past posts.
Bill D's January 18 reply to Ricardo A's January 17, 1999 - Hi Ricardo, It's hard to believe your insurance won't cover a congenital disease. If they won't, they probably won't cover any disease. We all have strands of DNA that may render us more or less at risk to get any disease; cancer, multiplesclerosis, CAD, emphysema, CHF, anything! Here in the States, there is a genome project to identify all of genes. They expect to be finished by 2003. This will allow drugs to be designed for every illness. Everybody likes that part but nobody will allow an insurance company to sample an applicant's DNA. It would defeat the whole idea of insuring a whole group of people who's premiums are to pay for the few who get sick. If the insurance company knew you had a better than average chance of getting cancer, they could refuse to insure you or triple your premium. Does your policy say they exclude you for bad heart valves? Did you have heart problems when you bought the policy and they excluded you because of a pre-existing condition? That, I can understand but how can they determine between congenital and a virus, I don't understand. You could have never had a problem. If I was you, I'd see a lawyer. Bill. email@example.com
Bill D's January 18 reply to Mary Jo S' January 16, 1999 - Hi Mary Jo, Welcome to Jon's Place. Be sure to go up to the top of this page and click on "Site Index." Start by reading "The Manual." There is lots of other stuff you want to learn, up to and including what questions you should ask your doctor. You can put away your hanky, you're going to be around a very long time. This disease is hard on our hearts but even harder on our patience! <g> Bill. firstname.lastname@example.org
Paul S, January 18, 1999 - Dear Jon and everyone here, I have to thank you all for everything that was done for me through this forum. Jon, I will never forget this site or the hope that it can supply. My fight with my heart disease has been beaten back for a time. On 1/11/99 at 10PM, I received a donor heart from a 19 year old male here at Vanderbilt. I know that I have stopped posting. That was due to me using the hospital system too much, and my own sickness, I guess. Ginger, Bev, Ruthie, Eddie, Erica, Stacy and everyone else, I had not forgotten about you or the strength I drew from you all. I waited from August with a low EF in-house, then in September, I had the LVAD implanted. Then I recovered and would slip back but I hung in there and this site gave me such strength. I have found an even stronger belief in God now and His love for us all. I wish none of us were sick. I have faced some of my fears now and I can tell you all the fight is worth it. My numbers are good and everything is going so great, I will hopefully be returning home to my kids this month- ages 8, 4 and 1 - whom I have missed so badly during this struggle.
When we are struggling, let us remember that this is when our love can be the strongest thing we have, and sharing that love will be returned ten fold down the line, as He has said to us all. If I can face the pain I had to face, the stark fear that would rob me of my sleep at night and the agony of the wait I endured, I hope to think my beliefs would have been enough but just maybe they weren't and some night when I was suffering and I read of someone else's pain or fear, and how they were hanging in there, gave me some strength and faith. Without this site and all of you who make it what is, not a clearinghouse of knowledge but to me, it was a haven where I did not feel so alone. None of us are alone and hopefully, we will all be here next year but maybe I won't or maybe someone else won't, but here I feel your emotions and your hope. I cannot express my thanks to you all for what I found. I love you all deeply and I will continue to pray so strongly for you all. May His mercy shine on you all and give you peace this new year. May God bless us all.
PS. Ruthie, it is very much worth it every time I see my children now. Love always, Paul. email@example.com
Jon, January 18, 1999 - Hi, I had a bad day yesterday and have another one on cooking today, along with a doctor's appointment, so posts will go up as I am able. Jon.
Jon, January 18, 1999 - Hi, Just an update. I'm back from the doc's and the infection is back, with a vengeance. I'll keep up best I can but don't worry, I'll be a good boy and not over do it (too much <G>). Jon.
Jon, January 18, 1999 - Hi everyone, Freddie B sent me this info about the IV drugs he mentioned in a previous post: "The class of medicines are inotropes. I talked about Milrinone, the other med is Dobutamine." The primary med he mentioned turned out to be amiodarone, brand named Cordarone, given by IV. This is an anti-arrhythmic drug with serious side effects. The other drugs he mentions are designed to increase the strength with which the heart contracts, making it squeeze harder and pump more blood per beat. There is more info at the New CHF Meds and Heartbytes pages about these drugs (inotropes). They produce short-lived action, so must be given over and over. They are generally reserved for severe CHF, because they tend to wear out the heart faster - but - they can greatly improve quality of life. Thanks to Freddie for sending the additional info! Jon.
Kay R's January 19 reply to Ricardo A's January 17, 1999 - Hi Ricardo, In our state it would be well to call the state insurance commissoner if the insurance refuses to pay. It's free and certainly worth the effort. Insurances companies don't like to have the IC knock on their door; kind of like 60 Minutes. Good luck.
Tom D's January 19 reply to Bill D's January 17, 1999 - Hi Bill, I have been increased only 3mg a day when they bump it. I found out that Coreg does lower BP! 81/53, 82/44 but this AM, I'm back up to 94/50. I'm sure that if they doubled my Coreg dose, my BP would disappear. Side note: I want to thank Jon for this site and I am praying for everyone. Tom. firstname.lastname@example.org
Dallas, January 19, 1999 - Hello everyone, Here I am finally posting after so long! My last MUGA scan (wall motion study) indicated that my EF had increased to 50%, from 31% in May of 1998, and that there is only slight dilation of the LV. I was so thankful to hear the good news, especially after having similar good news the first time around with my diagnosis in September of 1996 and then wrongly stopping all my cardiac meds in September of 1997, I then had a relapse in April of 1998 when my EF decreased from 50-54% down to about 25%! I will now wait with baited breath till my next MUGA in May of 1999 while enjoying all the good days I seem to be having.
I'm now allowed to start a walking regime but unfortunately the temperatures here in Nova Scotia, Canada, have been too cold and I don't have a car during the week to get to the malls so I can walk in temp-controlled warmth. Mind you, I suppose all the walking up and down the stairs doing never ending loads of laundry and other chores, as well as walking the lenghth and breadth of our large grocery stores weekly as well as the malls, all helps. I remind myself to be thankful for stairs, chores, laundry, shopping, vacuuming as just a few months, ago I could not do any of them, to the point of having to be pushed in a wheelchair for a few weeks till my EF improved; An experience that taught me a lot! I trust all are enjoying the moments we can share with loved ones and the "good" days or hours, as the case may be! Dallas. email@example.com
Dawna R, January 19, 1999 - Hi Everyone, I have not been posting for a while, trying to keep busy by a lot of volunteer work and even some part-time "real" work. I just was accepted into a research program associated with the Jacksonville Center for Clinical Research. It is a program for CHF people and they use a lot of different drugs. Some of them, like Coreg and Lipitor, I have heard of. The one I am going into is researching a drug called Valsartan. It is supposed to help the CHF sufferer maintain a better quality of life by allowing them to exercise more. A lot of the testing is done on a treadmill. I did some research on this center (even asked my cardiologist) and got nothing but good reports. My question is: Has anyone heard of Valsartan? If so, do you know how the person taking it reacted? I have CAD along with CHF, but my EF is now up to 27. I have been trying to do some exercise but it is hard for me because I also have severe angina. I guess I am just looking for someone who has heard of this drug before I sign the final papers turning myself over to them for a "test participant." Keep up the good posts, I read them almost every day. In peace and love, Dawna R. firstname.lastname@example.org
Jon's January 19 reply to Dawna R's January 19, 1999 - Hi Dawna, Valsartan is an Ace2 inhibitor, also called Diovan. Ace2 inhinbitors do roughly the same thing as Ace inhibitors but they do it at a different location in the body. Don't forget to use the Links page for searching out info. :-) Jon.
Robin W's January 19 reply to Ben B's January 16, 1999 - Hi Ben, Like the guy where you work, I have chemo induced CHF/DCM. I had an initial EF of 18-20% back in June of 1992. I worked for 4 years after that as a pre-K/Kindergarten teacher with very few limitations. The only real problem was a 50lb 4 year old who fell asleep at lunch everyday and my classroom was 2 flights up from the lunchroom. I was breathing quite hard when I got to the top. I'm 5'1" and 105lbs. I was on very little medicine - 0.125mg of Digoxin and 10mg of Zestril, with no diuretics. I hiked and rock-climbed with my husband and held my own. It was when my EF dropped to 8-10% in October of 1996 that I really couldn't continue to work. I have been able to manage my CHF with medicine since then but know a transplant is inevitable. I really started feeling the effects this summer and fall, and am getting ready to enter the hospital for transplant. Ironically, my Lasix was upped to 80mg 2 weeks ago, and I am feeling great now but the time has come. Robin W, New York, 31 years old. email@example.com
Robin W, January 19, 1999 - Hi all, It seems as if we have really grown in numbers lately. It was suggested by someone that if you feel comfortable, you could put where you live, your age, and your EF at the end of a post. This helps me keep everybody straight. I know my memory gets a little worse everyday. Where is that door again, Bill? Robin W - age 31, EF-8%. firstname.lastname@example.org
Bev T, January 19, 1999 - Hi, Here's one more question about Coreg. I have done well titrating up until this time (25mg bid). Usually the sluggish, tired feeling has gone away after about a week but this time I'm dragging through my third week of being so tired I can hardly think - and still trying to work. Can anyone give me an idea of how long I should wait before I back off the dosage? Thanks, Bev T. Mtnmama008@aol.com
Pam E, January 19, 1999 - Hi all, It is now Tuesday and the BP monitor is back in place. Talk about checking everything - I was there 1½ hours getting it on. They have to get your manual BP on the opposite arm within 20 mmols/mg of the monitor. Well, mine changed every time we took it. They not only want me to fill out the sheet but also to take my BP every time the machine does, when I can. We should have enough readings to sink a battleship. We have taped everything sercurely in place with very strong tape. I am not looking forward to removal tomorrow. I hope this one works. I will let you know the results. Pam E from Australia. email@example.com
Linda J, January 19, 1999 - Hi, I was so thankful to hear the info that Paul received his new heart. Prayer and patience do pay off. After a weekend from North Texas to Des Moines, Iowa, to our 6 month old twin grandbabies' baptizm, I am now in "Club Med" recovering from CHF, pneumonia, and bronchial Asthma. Good thoughts and prayers to all. Jonesgen@aol.com
John S' January 19 reply to Bob H's January 16, 1999 - Hi Bob, I had a great talk with a cardio guy in the club where I play piano. He had a few drinks in him and said that although he doesn't perform it, he'd seen fantastic improvement from chelation (not oral, that was only about 5% successful). Normally, doctors only learn about chelating to remove poisons and such, they don't get training for cardiocascular issues, and the amino acids that are needed. This guy said he saw patients holding the wall as they walked into a chelation clinic but after a few treatments, become normal, go shopping, living life, and asking the doctor if they were finished. Keep in mind this is only for plaque and toxin removal, not weak heart walls or valves. JohnStewart@worldnet.att.net
Tina ?, January 19, 1999 - Hi everyone, Thank you for sending me the e-mails. I received all of them. What happened was that my brother erased them because I don't have my own address yet but I will be getting it soon. I will keep everyone posted. Thank you. Tina.
Diane G, January 19, 1999 - Greetings, I am new here and this is my first time posting. I feel so grateful to have stumbled across it. My name is Diane and I am 26 years old, from Tampa, Florida. I was diagnosed with DCM and CHF when I was 24, in April of 1997. My first EF was 15%. My last echo, done almost 6 months ago, was almost 40%. My cardiologist will perform another next month. I am anxious and nervous at the same time!
I feel so relieved and joyful to have found this site. I have been searching from my diagnosis date to find a support group from friends, who can understand, educate and motivate each other through this type of forum. It was extremely difficult for me in the beginning to accept this disease. No offense to anyone but when I tried to reach out to the local support groups, I still felt alone, being the only person under age 60. After the first couple of months, I snapped out of my self pity stage. I was so worried about trying to live that I forgot about dying. In September of this past year, my mother was diagnosed with colon cancer. Since then, I am so paranoid about everything related to health. Now that I am improving as far as EF goes, my mental worries make me think about death all the time. Now that I am more stable, I think about dying every day, several times a day.
When I was first diagnosed, I wanted to keep living for my mother. I am her only child and she is an immigrant to this country, with no other family besides myself. I didn't want to leave her behind without me, all alone. Now that she is faced with illness, the thought of either of us living without each other is too much for my soul to bare. Don't worry - the positive side of my brain tells me things have gone so well thus far. Why would they get worse? After all, I feel pretty well most of the time. If I were getting worse, I guess I would encounter some symptoms. I am on Disability but I still have a pretty decent life. Most days I feel good enough to visit family and friends and do light cleaning and cooking. On bad days, I do nothing or maybe I just clean one room per day and ask my husband to prepare dinner. It has all been a big adjustment for me, as I am sure it has been for you as well. The hardest part is that from the love my husband and I share, we will not be able to create new lives from us. However, if I continue to improve we plan to look into the possibilites of adoption. Do you think that I would be taking too much on?
I would be curious to hear what other people's daily activites are. For those on Disability, how is most of the day spent? Also, if recovery is not made within the 6 months window but the EF gets higher, does that mean chances for a full recovery are slim? Also, when the EF gets higher, lets say 40% and above, is it common for conditions to worsen? Does anyone know how long one can survive with this condition? If I never recover, and my EF stays at 40%, do I still have a good chance at living as long as the next person? Thank you for the opportunity to post on this forum. Sorry for it's length, but I am just soooo excited to be hearing from others like me. Best wishes for each of us, Diane. Style928@aol.com
Pete ?, January 19, 1999 - Hi, I'm a fellow CHFer, 43 years old with an EF of 25 and chronic a-fib. This is my first post but I've been a frequent reader since my diagnosis 6 months ago. I need information on the amount of sodium in softened water, and if a reverse osmosis unit would remove most of the sodium. I read over the weekend that softened water can contain up to 250mg of sodium per quart. My doctor restricts me to 1500mg daily and the water I drink every day could be throwing me way off, let alone the water we use in food preparation. Thanks, Pete. firstname.lastname@example.org
Freddie B, January 22, 1999 - Hi to everyone, Especially the newbies. Earlier, I posted some information about a change that UNOS is going to make January 20. If you would like to read the actual policy change, you can read it at http://www.unos.org/. Once you are at the site, select "newsroom" and you can read about all of the changes that are being made. In my original post, I only included the information that I got from my doctor. The UNOS Web site includes all the change information. It also has the forms that transplant centers have to submit for the 1A and 1B status patients. If you are a transplant candidate, I suggest you read the new policy.
For those who don't know me, I live in North Carolina about 18 miles east of Raleigh. March 27th will make my 8th year as a CHF patient. I also have CM and CAD. My EF has not been above 35% since I developed CHF from a virus. The one thing that has helped me the most has been my relationship with God. He has helped me through some rough times and has helped me to realize that worrying about my health will not change my condition. If I were to die tonight, I know that I will be in a better place where there is no pain or suffering. May God bless all of you and help you, all you have to do is ask. Jon, take care of yourself. Freddie Batten. email@example.com
Candy, January 22, 1999 - Hi, I had a really good evaluation the 19th at my local hospital. I was referred by my rehabilitation specialist to be assessed to see if I could resume work. Apparently, after all the assessments were done, which was initially scheduled for my bulging disk, turned into an assessment for my cardiomyopathy. The neuropsychologist, the physical therapist, the occupational therapist, and the hospital social worker all agreed that I could not return to work. They wouldn't do the treadmill test. CMPotila@aol.com
Bill D's January 22 reply to Diane G's January 19, 1999 - Hi Diane, Welcome to Jon's Place! His 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." That will answer a couple of questions in your post. The last time they counted, the average person lived only 5 years from the day they diagnosed CHF. Since then, new medicines have been introduced and they found our old standby, Ace inhibitors, worked much better in big doses. Maybe the next time they count, we'll all have lived 10 years or longer. Knowing that, I don't think it's a good idea to adopt a child. Diane? Please study up on CHF. Jon has everything you need to know in his "Site Index." Bill. firstname.lastname@example.org
Bill D's January 22 reply to Robin W's January 19, 1999 - Hi Robin, The entrance to the "Death's Door Club" is in Wyoming. It sounds like you have a good ways to go. Eighty mg of Lasix isn't that much. You can work your way up to 300mg and then they have other stuff that's 3 times as powerful! Are they really going to stick you in the hospital, waiting for a new heart? You'll be the most cheerful person in the joint. Bill, age 68, Florida. email@example.com
Jon, January 22, 1999 - Hi all, I have to move this page within a day. Earthlink doesn't want the traffic without a profit. I'll try to do it tonight. Because it's still listed in search engines and because I'm too tired to try and find a new home right now, I'll go back to the old address. This address will be a re-direct to it. Sorry, but that's how it goes, running on cheap. Posts may be further delayed. Jon.
Paul M's January 22 reply to Bev T's January 22, 1999 - Hi Bev, If you are still having difficulty in adjusting to the higher dosage of Coreg, it is not unusual for a person to drop back to the previous dosage for a while longer. When you try the increase again, you may tolerate it better. It is possible that you might not tolerate it at the high level regardless how long you try. If you don't have any problem at the lower level, then stay at the lower level. I experienced dramatic improvement within 48 hours even at the 3.125mg level. Everyone is different when it comes to drugs, including Coreg. Good luck. Paul M, age 51. firstname.lastname@example.org
Bill D's January 22 reply to Pete ?'s January 19, 1999 - Hi Pete, I went to the Culligan site to find out how much sodium is in softened water. Put this address in an URL box and see for yourself: http://www.culligan.com/mk915.htm. It depends on the hardness of the water. They have a table and a formula that will help you. A hardness of just one grain puts very little sodium in the water. A hardness of 40 grains, (you could just about walk on it!) will have 300 mg of sodium per quart. Reverse osmosis units will do it but they are expensive. I'd buy bottled water instead. Bill. email@example.com
Bill D's January 22 reply to Ricardo A's January 17, 1999 - Hi Ricardo, I think I made a mistake. I found where you are considered having a congenital problem if they find something when you are born. In the USA, insurers won't take you by yourself but if you are part of a large group, they sometimes will. Many of us work for big companies for that reason. When we turn 65, Medicare insures us and insurance companies must take us. Is that what happened to you? Bill. firstname.lastname@example.org
Nanc, January 22, 1999 - Hi, Yea! As of 1/20, Liz is off the ventilator and doing well. I hope to hear she is in her own room soon. I'm so very grateful to be able to send this. Nanc. email@example.com
Ruthie A's January 22 reply to Pete ?'s January 19, 1999 - Hi Pete, My doctor told me to stay away from softened water unless I wanted to swell up like a balloon. There is way too much sodium in softened water to enable us to stick to our limitations. I called my local water company and spoke to a person in the lab about sodium levels in the tap water. It, too, has too much sodium so I buy spring water and have it delivered periodically. It is expensive but it's much cheaper than having to visit "Club Med" to deal with fluids and other CHF symptoms. Just a thought. Ruthie A. firstname.lastname@example.org
Diane G, January 22, 1999 - Hi, At your convenience, could someone please explain to me what a MUGA test is? This is the first time I heard of it. Is this something I should have done in the past? Thanks, Diane. Style928@aol.com
Jon's Note:Please see the Site Index for CHF Tests.
Jennifer, January 22, 1999 - Hello Everyone, I went to my check-up last week and my heart doc says my EF is down some (no number due to so many arrhythmia) so I will now be joining all of you taking Coreg. They didn't give it to me before because my BP swings so erratically that they were worried but my doctor says we have no choice but to try now. It has been one week and I feel like I have the flu. My whole body aches and I have absolutely no energy but I am hanging in here with hope that soon I will be doing better. My spirits are better and I expressed my frustration with them. There are far worse things in this world than having this illness, like if one of my children had it! Anyway, I wanted to give you all an update and ask if anyone else has this problem with getting an accurate EF because of their heartbeats? Thanks! email@example.com
Felix O, January 23, 1999 - Hi everyone, I don't post very often but I am a frequent reader. I was diagnosed with DCM in July of 1996. My EF at diagnosis was 21% by MUGA and I was found with severe CHF and acute renal failure. I also had a CVA. After receiving medical treatment, my EF improved and by the end of 1997 an echo test showed EF of 48-50% and MUGA showed 37%. Yesterday the echo test showed 51%. My doctor told me another MUGA was not necessary. I've been living on SSD since 1996 and my case is supposed to be reviewed every 3 years. I'm happy with the results but at the same time this getting well business is making me kind of nervous. Does this mean I need to start looking for a job immediately? If so I'll be better off applying for a trial work period before my case is reviewed by SSA. Is idiopathic DCM recurrent? Will my EF support the stress if I return to work full time? Which is the accurate number for EF - echo or MUGA? Can DCM be completely cured? What happens with the heart in the long term? My doctor has not been able to provide me with convincing answers to many of these questions. Sometimes I wish I had a crystal ball to see the future. Has anybody out there gone through this? Does anybody out there have any experience with SSD reviews? I wish I could have a smooth transition. Any advice will be appreciated. firstname.lastname@example.org
Anne ?, January 23, 1999 - Hi, Here is an update from my first post on January 14th. I had an appointment with the cardiologist today and what I had understood to be oxygen therapy is actually regular room air delivered with pressure that is set at an appropriate level for each person. That's the reason for the 2 night stay at the hospital; to ensure that it is perfect for me. I will have to wear a mask at night for at least 6 hours and the average results are really encouraging. They are an improvement of 8 to 10% in EF. Since I am dealing with only 10% at the present time, I am hopeful for some improvement. I will keep you posted on what happens.Has anyone else heard of this therapy? I would be very interested in any information.
As well, I started an experimental drug called monoxycon ( I think that's how it is spelled) last Monday. Although I have been really sick with an upper respiratory infection almost from the day I started it, there were several indicators that my heart has shown a small improvement. That is so encouraging. So is it encouraging to read everyone's posts. I am very grateful to be part of this group. Thank you all. Anne. email@example.com
Jon's Note: See Heartbytes for CPAP info. Is the drug Minoxidil?
Renee M, January 23, 1999 - Hello to all, I am new to this site and have found it amazing. I am also new to the computer world and had no idea how much info is out there! I have a medical background and the information you provide is great. I was diagnosed with cardiomyopathy 5 years ago. I wish I had access to this kind of information and support back then. I have enjoyed reading the posts and have learned a lot. I am doing ok now but recently had a new problem to contend with - diabetes. I take a thousand pills a day (ok, I'm exaggerating a little) but it's a lot. If anyone has any experience with diabetes and cardiomyopathy, please let me know. I have been experiencing chest pain whenever my sugar goes up. Is this typical? I would also like to know if anyone has severe allergies. I have a friend with cardiomyopathy who also has severe allergies, as do I. We are both in our forties and wonder if there's a connection. Thanks. Renee M. Untonay@aol.com
David S, January 23, 1999 - Hi, I have not posted for a while because I have been in the hospital. I had oral surgery, then was not able to eat. I lost 20lbs in 3 weeks. My heart meds went wacko and Lanoxin went toxic (be careful of this one). Now I am off Coreg, Lanoxin, Lasix and Isordil. I am still on Vasotec and Coumadin. I will be watching my ankles due to Lasix withdrawal. Jon, I'm wondering about Coreg. If I start up again, is it like starting anew with lower doses and caution on BP? I think my BP got so low it affected my vision and walking ability. It has really been a strange and frustrating time. I think I'm back on the mend. My best to all. David S. firstname.lastname@example.org
Jon's January 23 reply to David S' January 23, 1999 - Hi David, I can only guess. My guess is yes, you will have to ease up but that it will probably go a bit faster this time since your body usually remembers what happens to it and it may acclimatize to the drug faster the second time around. Maybe someone can post who has had to drop Coreg and then try again later - having been on it successfully the first time. Jon.
Janet ?, January 23, 1999 - Hello All, I had my EP study done on Tuesday and all went well. I don't have to have a defibrillator implanted and I'm one happy camper about that. The change in cardioligists and medications has done wonders for me. I know some of you are tired of hearing this, but if you are uncomfortable with your doc, get a new one! I don't think it can be said enough. I finally got a hearing date set for my SSD. Wow! It only took 1½ years and a trip to my Congressman's office. Now we'll see what happens. Also, the company my husband works for is switching health insurance carriers. We're a little aprehensive as the insurance carrier we've had has been great. Ah, the new joys and wonderment we must endure! I hope everyone considers getting into a chat now and then. Thursdays are tough for me, but I try to make it on Mondays, wtih the help of TomW reminding me. Anyone out there who has chemo induced cardiomyopathy and knows of any sites related to that, I'd appreciate it if you could pass those on to me. Janet, age 46, EF 30%. email@example.com
Janet S, January 23, 1999 - Hi, Do any of you get muscle cramps with CHF? It seems like on my worst days I also have severe cramping of my calves, thighs, and arms. I've had CHF for years as a result of a hereditary disease that affects the smooth muscles, but the cramping is a fairly recent occurrence. I don't take any medication (I'm allergic to all the drugs we've tried, so I just use natural treatments and lots of prayer), so it isn't related to potassium levels being reduced from diuretics. Any ideas? firstname.lastname@example.org
Jon's January 23 reply to Janet S' January 23, 1999 - Hi Janet, For what it's worth, electrolyte imbalance can happen to people not on diuretics, too. Jon.
Tina ?, January 23, 1999 - Hello everyone, I just recieved my new email address. It is email@example.com. Tommorrow, I am going to the doctor's to get my EF checked. Last time I was checked, it was about 23%. God willing, it will look better. I will keep you posted. Thanks for the support. firstname.lastname@example.org
Ken M's January 23 reply to Pete's January 19, 1999 - Hi Pete, I also have been diagnosed with CHF. I'm writing to tell you that a reverse osmosis unit would remove the salt from the water along with all other minerals. All that's left is hydrogen and oxygen. By the way, why is your liquid intake so restricted? I get 3000mg of liquids per day, and I'm Class 3. email@example.com
Jack ?'s January 23 reply to Chris H's January 14, 1999 - Hi, I've been on Coreg for about 18 months. I would say 4 months is consistent with my experience. Improvement was very gradual, but it really made a positive difference for me. My EF went from 20 to 44. Working up in dose was not fun, but was absolutely worth sticking with it for me.
Lori Wilson, January 23, 1999 - Hi everyone, I came across a couple of heart-related articles that were pretty interesting, and thought I'd pass along the info as to where to find them: Time Magazine January 18, 1999, page 94: "Relax That Heart" and U.S. News And World Report September 7, 1998, pages 58-66: "Unlocking the Heart's Secrets." Have a great weekend! :-) firstname.lastname@example.org
Ronald J, January 23, 1999 - Hi, Just a short note to say thanks to all those who replied to my questions about Coreg. Many thanks to all those who keep this site operational. Since I have been visiting, I am becoming quite an expert on CHF. Well, a lot more than I knew before - plus the added bonus of some new friends. Thanks again. Ron. email@example.com
Dan C, January 23, 1999 - Hi, I would like to know what "MULTIFIT" is an acronym. I noticed that there are others with this same question. Note the request made by a physician from G.W. University in the Journal of Cardiovascular Nursing 1997 Jan; 11 (2);ix. "What is the meaning of the acronym MULTIFIT?" Can anyone help decipher the mystery? Sincerely.
Jon's January 23 reply to Dan C's January 23, 1999 - Hi Dan, See
Journal: Am J Cardiol 1997 Jan 1;79(1):58-63
Title: "A comprehensive management system for heart failure improves clinical outcomes and reduces medical resource utilization."
Authors: West JA, Miller NH, Parker KM, Senneca D, Ghandour G, Clark M, Greenwald G, Heller RS, Fowler MB, DeBusk RF Department of Medicine, Veterans Affairs Palo Alto Health Care System, California, USA.
Medline reference: PMID: 9024737, UI: 97177185
Abstract: The effectiveness of heart failure management in clinical practice is limited by physicians' suboptimal utilization of effective medications, patients' poor adherence to dietary sodium limitation and optimal drug therapy, and the lack of systematic monitoring of patients after hospitalization. The present study evaluated the feasibility and safety of MULTIFIT, a physician-supervised, nurse-mediated, home-based system for heart failure management that implements consensus guidelines for pharmacologic and dietary therapy using a nurse manager to enhance dietary and pharmacologic adherence and to monitor clinical status by frequent telephone contact,.....
Ben B, January 23, 1999 - Hi, Here's another confusing thing about this disease. I was just watching a show on heart transplantation on the learning channel. In it, they had a guy in the hospital waiting for transplant (which he got). While there, he ran fast for several minutes on a treadmill, before he got the heart. This guy seemed in better shape than I think I ever was in my life! Plus, I just got hospital records from a 3 day stay for a cardiac cath and EP study. They measured my EF 3 times - once it measured 10-15, once 20, and once 25, all in the course of 2½ days. Go figure.
Luc D, January 23, 1999 - Hi, I am very worried about Liz. Please let me know how she is doing! Luc.Deseins@ping.be
Pam E, January 23, 1999 - Hi all, I don't even know whether writing this will help. Basically I am awaiting results and am stressed out of my brain. I'm even reluctant to go to bed due to nightmares about the results and other medical imaginations. I am overly tired and all I want is for my mother to cuddle me tight but this is impossible as she has been dead for 28 years. Take care, all. Pam E from Australia, CM, EF=40% firstname.lastname@example.org
Jon, January 23, 1999 - Hi all, For those who asked about the Web site "situation," here's the scoop. Most small commercial sites have a commercial account that allows 500MB traffic each month without extra charge. Earthlink generously allows 1000MB per month on ISP account personal sites - a high limit. I figured that would easily cover my traffic, although I have never measured or calculated actual size of information transferred. It turns out I have well over 1000MB traffic a month, so I had to move. That also means that a commercial account would cost me more than even I thought, probably $55 - $100 per month. So for now, geocities is it. A drag, but so it goes. I hope this answers your questions. Let me know if it doesn't. Jon.
Jamie's January 23 reply to Jennifer's January 22, 1999 - Hello Jennifer, I am not sure whether you had an echo or a MUGA. Before I had my ablation, I was in v-tach every other minute, so they had to repeat one part of the MUGA scan. Think of it as trying to take a picture of a moving target. It comes out a little blurry but you can still make out who it is. An echo seems to be a bit more unreliable as there are factors such as the technician doing the test that could make your EF a little off. How do you feel, though? That's what's important. The Coreg is a good step. It will help your heart work more efficiently and decrease the friction so it will help your heart recover. Jamie. JamieDan@prodigy.net
Jamie, January 23, 1999 - Hi, I am doing well at the reduced 6.25mg of Coreg 2 times a day. I was tired for 3 or 4 days but I don't know if that had anything to do with the medication or my sleep habits. Since I was so focused on my heart, I started feeling things that weren't there. So after a few days, once my anxiety started to decrease, so did my pyschosomatic feelings. I am doing well. Pam E, how did the BP reading go? Tina, how are you making out with your PPCM? Take care, everyone. Jamie. JamieDan@prodigy.net
Brenda H, January 23, 1999 - Hi, I'm sorry I've been away so long! I had another echo showing my EF improved from 18% to 25% so far. This is good news but I'm still scared. It's been 5 months since I was diagnosed and I was hoping for more improvement. Researching the Web can be scary. I read that you can die from any stage of cardiomyopathy or CHF. Is this true? Could I have cardiac arrest with an EF of 25? Thank you. Brenda, age 31. Hansonfoxi@aol.com
Jon's January 23 reply to Brenda H's January 23, 1999 - Hi Brenda, Congratulations on the EF! I wouldn't pay much attention to this cardiac arrest talk unless you have a severe arrhythmia. Even a healthy person can die suddenly from cardiac arrest, but it's not likely. Yes, CHFers can die from SCD at any time and we are far more likely (9x) to do so than healthy people - but - it's usually caused by arrhythmia, which is caught more often and treated more successfully these days than ever before. Jon.
Don G, January 23, 1999 - Hi, For all of you who sent notes concerning the publication of the no salt cookbook, I want to thank you from the bottom of my ailing heart. Your notes have in fact had a great impact upon the publisher. It appears we may be headed for book form after one more review at the publisher, which should take place in 2 to 3 weeks. They have asked that I put every recipe (more than 400 now) through nutrition software to add to the book all the other nutritional info (other than sodium). That will take me about 2 months. Meanwhile, my agent is pursuing all this in writing.
My agent also said to say thanks. She was overwhelmed by the response and I believe we convinced her too about the importance of this book. Thanks to all who have tried the recipes and responded with such favorable kudos. We have tried very very hard to make every recipe as easy to prepare as possible and as tasty as possible. Again, thank you, thank you. Don Gazzaniga. email@example.com
Jon's Note: Hey, where's my free recipes?! <G>
Jay Q's January 23 reply to Pete ?'s January 19, 1999 - Hi, The conventional water softener substitutes 2 sodium ions for one of calcium, thus the sodium input depends on the water's hardness. Possibly a softener can add a bit more for magnesium. Remember that if you soften tap water, you are adding the softener's sodium input to that already present in the tap water. I wouldn't feel completely safe with so-called spring water unless I could see an analysis. After all, spring water is often just water from a different tap. Cheers, Jay Q. Affinis@aol.com
Gail M, January 23, 1999 - Hi everyone, I am Gail M, with an EF of 20 as of March, 1998. I have idiopathic CM and a defibrillator for arrhythmia. I am 48 years old. I had never been sick before in my life. Within days, my life changed forever. I am blessed with a husband and 2 sons, ages 21 and 10. Thank goodness for this forum. I found it a week ago seeking information on my type of heart disease. Just reading all of the responses and replies has educated me and also enlightend me. I know now that I can get better. I have loads of questions but I will start inquiring soon. For now, I am just thankful to know that there are people out there struggling with CHF just like me. My goal is to live to see my youngest child finish college. In February, I will have my first echo since the onset of my illness. I will let you all know. I will pray for us all every day.
Paul S, January 23, 1999 - Hello one and all! I pray this finds us all in the saftey of His arms tonight and I have a problem I am fighting with again, it seems, although I should have no problem with smoking now, that beast is calling me again. I have been free of the hospital for about 5 days and just seeing people smoking again has resurrected that craving again. I quit while in the hospital for over 6 months and now I crave again. Does it ever stop? I have prayed and asked for help from Him every night and I have still found myself sneaking around my wife's pack for one every now and then. I have had no more than 7 or 8 but can't seem to stop. I know I will and my wife is trying now but it is difficult for her and I hate to see the struggle she is going through but I feel we must both stop or I will die from cancer and my heart will be a waste. I guess I am just looking for support from someone. I really get a good dose of strength from another's support.
I am currently on 60mg of Prednisone, 200 of Immuran and 250mg of Cyclosporin (Neoral) and that much immunosuppressant drugs can lead to lung cancer in 1 to 2 years, so I must stop anyway. Enough of that. I woke up last night with severe knee pain and had to go in to the ER because it was a fluid build-up and I got a scrip for Percocet so I shouldn't feel any pain. I just can't stay awake right now. I just got my new heart and now I am allready on crutches so I want everyone to be careful and not overdo anything. I will pay for my excitement now, I guess. After 6 months, I had my first trip to Walmart and nothing there has changed any but it was good to get outside anyway. Well , I will be going to bed now. I can't seem to stay awake any longer. I will be back when I get up. firstname.lastname@example.org
Jon's January 23 reply to Paul S's January 23, 1999 - Hi Paul, I'm glad to hear you are doing well over-all with your heart! About smoking, you said enough of that, and changed the subject. I suggest keeping that information about meds and cancer foremost in your mind all the time for a while. Maybe that will help with incentive to stay away from the cigarettes. There are plenty of ex-smokers, and smokers for that matter, around here, so hopefully e-mails will soon be headed your way. Jon.
Tom S' January 23 reply to Jon's January 23, 1999 - Hi, When I say we would follow you anywhere I think I have the concurrence of the majority of folks who visit, learn and can better handle their physical, mental and emotional conditions, and outlook on life, thanks to you. Don't apologize for moving the site, we found you the first time and we will do it again. Thanks again for your dedication to this site and ultimately to all of us who use it.
Pam E, January 24, 1999 - Hi all, I am asking a favour of you all. Can I have some e-mails from those of you who only have DCM, who are on Coreg? Can they also say if you have had any improvement or not? I go back to the cardiologist soon and I would like to take some printed material from people's first hand experiences. Thank you. Pam, age 36, EF = 40%, DCM. email@example.com
Patricia G, January 24, 1999 - Hi, I have a booklet for suggested reading: "Coenzyme Q10 and the Heart," authored by Stephen T. Sinatra. It is a Keats Good Health Guide and costs around $4. In the booklet, it says that a person with DCM should take CoQ10 in the amount of 360mg per day. Patrigil@aol.com
Al L, January 24, 1999 - Dear Friends, I noticed that most of you are on Coreg. I questioned my doc about the drug and he refuses to change me from my current beta-blocker Metoprolol, to Coreg, claiming that tests have proven that a beta-blocker is a beta-blocker and that it will do the same without the problems of Coreg. I have also moved my care from Gunderson Clinic in LaCrosse Wiconsin, to the Veteran's Hospital in Minneapolis. I have now been in the system for 2 months and still have no appointment with a cardiologist. I did have an echo and my EF was 10 last June by cath, and now she claimed unable to give me an exact number but it would be less than 20. Any comments? firstname.lastname@example.org
David S' January 24 reply to Jon's January 23, 1999 - Hi, Thanks for the thoughts about starting Coreg again - it makes sense to me. Another concern is that since the hospital stay, the only heart med I'm on is Vasotec, whereas before, I was on a boat load. I don't feel as pooped and am wondering if all the meds took me down too far (lasix, lanoxin, isordil and Coreg at 6.25mg twice a day. Any opinions? I do watch for ankle swelling, but so far, so good. I guess it's easy to become doubtful when doctors put you on these meds and then without them, you seem OK. It's weird because before my hospital stint, I kept asking if I was on too many heart meds and none of the 3 docs were willing to reduce. Thanks again for any input you may have. Take care. David S. email@example.com
Jon's January 24 reply to David S' January 24, 1999 - Hi David, Yes, the meds can make you tired. However, there are a number of things to consider. One is that beta-blockers and Ace inhibitors reduce heart rate and blood pressure. That means they will probably make you tired. Because of the way they do this, they also drastically reduce the amount of work your heart does, making it last longer, which makes you live longer. Also, if your heart is sick and you aren't on them, your heart would be wearing itself out trying to compensate for its reduced pumping ability by pumping like mad. That would mean you'd feel stronger but it would also mean a completely worn out heart, and death, a lot sooner. If your heart gets better and your meds are reduced, remember that without the meds, odds are that your heart would never have gotten better, leaving you tired for the rest of a very shortened life. In a sense, it's a catch-22, but then again, these meds really do keep us out of severe chronic heart failure, which means constant fatigue and impending death. That's why, even though it's a tempting conclusion to draw, we can't assume that we should go off or reduce meds because we feel better without them in the short term. It's a complex judgment call, requiring understanding of all the factors involved. Jon.
Renee M, January 24, 1999 - Hi, Just a note to let you know my e-mail address was wrong. I was hoping for some replies to my questions and thank anyone who tried. I'm not a very good typist so expect a few boo-boos. I wanted to know if anyone out there has cardiomyopathy and thyroid problems. Ten years after thyroid surgery, I developed an LBBB and sinus tachycardia. A year later, I found out I had high blood pressure. I had all the tests available at that time and everything was normal except for the LBBB. The high blood pressure was controlled with medication and I did fine for 5 years. Then I developed the cardiomyopathy. I always felt that the thyroid surgery had a part in this. Renee M. Auntonay@aol.com
Bill D's January 24 reply to Felix O's January 23, 1999 - Hi Felix, The MUGA is more accurate by far than the echo measurements. I have an EF of 37 too and the last thing I could do was to go back to work. Most of the folks who came up on their 3 year evaluation were passed without any problem. I'd tell your doctor about your worries and see what he says. For Pete's sake, don't go out and get a job! Bill. firstname.lastname@example.org
Bill D's January 24 reply to Gail M's January 23, 1999 - Hi Gail, If you'd like to extend your goal and see that youngest son get married and give your grandchildren, start looking at all the information Jon has hidden under the words "Site Index" at the top of this page! (a 38 word sentence! That's a record for me. <g>) You'll find all kinds of stuff like 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 how we try to cope with CHF. Our forums are only part of what Jon offers on his site. Bill. email@example.com
Bill D's January 24 reply to Ken M's January 23, 1999 - Hi Ken, We all thought that if we restricted our liquid intake we'd have less trouble with edema. Seems natural to think that if you put less water in, you won't have so much to take out. Maybe Jon will jump in here and tell us where he found the liquid restriction info? Bill. firstname.lastname@example.org
Jon's January 24 reply to Bill D's January 24, 1999 - Hi, Everywhere. That's where I found the info. You can find it called a "cornerstone of heart failure treatment" on page 78 of Marc Silver's latest edition of Success With Heart Failure. Jon.
Ben B's January 25 reply to Patricia G's January 24, 1999 - Hi, I'm going to pick up this book but until I do, can you tell me if there is any experimental evidence in the book about the effectiveness of this quantity of CoQ10? I am taking this, but am going broke on 80mg/day. If I took 360mg, I'd probably be dead from lack of money before the heart disease got me. Just kidding, but this stuff is very expensive. Thanks for the info. Ben B.
Pam E, January 24, 1999 - Hi all, I have managed to get a copy of the BP monitor, (the Professor told me it was ready) before the doctors. It basically says mild labile systolic hypertension. I talked to the GP and have to see the cardiologist when he gets back from holidays this week. I'll let you know what happens. Pam E, EF 40%, DCM. email@example.com
John Griffith, January 25, 1999 - Hi, I have just found this service and have had CHF for some time, and I have found all of the information from all of you people very interesting and helpful to me. So, thank you very much, and keep up the good work. JGriff1217@aol.com
Martin Ludwig's January 25 reply to Pam E's January 24, 1999 - Hi Pam, I'm sorry you are so stressed. Active searching for information and answers is one of the best psychological ways of countering stress that I know. To go on such a quest through Jon's pages will in fact calm you down and help reduce the nightmares to manageable proportions. A possible way of contacting your mother - inside your own mind - is to use a good medical hypnotist to regress you into such a contact. This may sound stupid but it has been known to work. firstname.lastname@example.org
Allen Cravener's January 25 reply to Jennifer's January 22, 1999 - Hi Jennifer, My name is Allen, and I am 54 years old. I suffered a terrible bout with CHF last April and nearly died. I checked into the hospital for two weeks where they removed 180lbs of fluid from my body. Lasix sure does work well. <G> But to answer your question about not being able to get a good EF when you have a wonkie heartbeat, the answer is yes. I am still in a-fib and the tech told me that she couldn't get a good EF due to my irregular heartbeat. So it must be true. Allen Cravener. email@example.com
Sue B, January 25, 1999 - Hi everyone, Just a quick request for some prayers. This week is going to be pretty stressful for our family. My son-in-law's mother died on Saturday. She had Alzheimer's for 13 years. She was only 66. The funeral is Wednesday. On Thursday, my husband Brad goes in for a cardiac cath to determine if he needs an angioplasty or bypass. I think I am doing ok with everything, and have decided to storm heaven with a multitude of prayers for us. Thanks to all. I am praying for all of you too. Love Sue B. firstname.lastname@example.org
Tina's January 25 reply to Jamie's January 23, 1999 - Hi Jamie, I am doing okay, I guess. I could be a lot worse. I am just have a lot of personal problems right now at home and stuff. I am trying not to get to stressed out but I think I'm doing pretty good. I just went to apply for SS today and now I have to go fill out all of those forms. I went to the doctor's last week to check my EF. I have to call the doctor this week for the results because they could not get an accurate number for some reason, why I don't know, no one told me. I guess I have to speak to my doctor. I will keep you posted as much as possible. Tina.
Ben B, January 25, 1999 - Hi, I read there is a new treatment guideline in the American Journal of Cardiology on last Thursday. It says that Ace inhibitors and beta-blockers are now regular treatment, and the only treatment known to help halt progression of the disease. It says only 40% of people are on Ace inhibitors, and only 5% on beta-blockers.
Jon's Note: 4 drugs were recommended - those 2 plus digoxin and a diuretic
Margaret J, January 25, 1999 - Hi, I have a 7 month old son. When he was three months old, my heart failed. I also have a blood disorder called ITP, which is an autoimmune disorder - antibodies are destroying my platelets, but my bone marrow is still making new ones. My ejection fraction is 15% to 20% and I have been referred to Emory Heart Failure Center for assessment. I am 42 years old and have no other health problems. My heart has shown no improvement yet. My question is: When my doctor speaks of life expectancy being shortened to 10 to 15 years, is she referring to the time that patients studied have lived, or is she referring to the time left for my damaged heart? If my heart does not repair itself in 6 months, will it weaken more or will more antibodies have to attack it to weaken it? How is my platelet disorder related to CHF? What do ya'll think?
Lynn D's January 26 reply to Margaret J's January 25, 1999 - Hi Margaret, I also use the Emory Univesity Center for Heart Failure Therapy. Contact me via my e-mail address if you want some info. You should ask your questions to these folks and if you still don't understand, ask the nurses and PA to show you where to look up the info. Emory has a huge medical library. All you need is a pass. Use the Internet, local library, and any medical contacts you have. I may know some that could help. email@example.com
Fay, January 26, 1999 - Hi, I have a question that I am hoping someone can answer, it's about accurate scales. I weigh my dad twice a day for accurate weight. He's been known to fill up in the afternoon so we weigh him twice to keep an accurate record of his daily weight. The problem is that our scale broke again. This is going to be the fourth one in about 5 months, since yesterday it is 5lbs under. We do have a backup at home and it confirmed that the new scale is broken. Where can I find an accurate scale, the last one was by Sunbeam, which the local pharmacy recommended as accurate. What do you guys use? Any suggestions will be of help. Thanks, Fay. firstname.lastname@example.org
Ben B's January 26 reply to Allen C's January 25, 1999 - Hi, How long did it take to build up so much fluid? Or is that over the course of 2 weeks? What symptoms were you experiencing that sent you to the hospital? I have never been in the hospital with CHF, so I am curious what to look out for so I don't inadvertantly kick the bucket. Thanks a lot.
Lee R's January 26 reply to John G's January 25, 1999 - Hi John and welcome! I'm so glad you found Jon's Place, which is heartily (pun intended) recommended by Dr. Mark Silver, author of Success with Heart Failure. I hope you'll send us a biography for the Who's Who section so we can get to know you better. Bestest, Lee. LeeRoush@aol.com
Kim S' January 26 reply to Ben B's January 18, 1999 - Hi Ben, Just to give you some info on peripartum cardiomyopathy, I am a registered nurse and also have this condition. It occurs to 1 in 10,000 women. The prognosis is not all that great in my opinion. There is a 1/3 chance of total or near recovery, 1/3 chance of staying the same, and a 1/3 chance of deterioration. I am 21 years old and this occured with my second baby. The cause is unknown and the treatment is most commonly heart medications, diuretics, anticoagulant or aspirin therapy, rest, and restricted sodium diet. The degree of heart failure varies with each individual woman but from what I have researched, each woman's ejection fraction tends to be relatively the same at diagnosis (10-20%). I hope this has shed some light on the disease. LaLaKimmie@aol.com
Rick M, January 26, 1999 - Hi, Here is a story that has not been told. This is the first complete indictment of the media and how it has ignored CHF and the people who suffer from it. Rick M. email@example.com
Jon's Note: The last mailing sent out contained this information, although from a different article.
January 26, 1999 New York Times - An Aggressive Push to Save Failing Hearts
By Holcomb Noble
Only about 5% of the 5 million Americans suffering from heart failure are receiving the most effective therapy, a panel of 150 cardiologists says. This is resulting in what they estimate are 100,000 more deaths annually than would otherwise occur. The panel, a not for profit organization called the Advisory Council to Improve Outcomes Nationwide in Heart Failure, published new treatment recommendations in the current issue of the American Journal of Cardiology to try to bring more physicians up to date on the latest research and to encourage them to become more aggressive in applying the new findings.
The report stated that the guidelines resulted from 3 years of clinical studies establishing that, as a general rule, 4 medications - digitalis, diuretics, Ace inhibitors and beta-blockers - should be used together in treating heart failure. Beta-blockers and Ace inhibitors block the effect on the heart of hormones that cause the body stress; digitalis stimulates the heart and diuretics remove excess fluid from the body. The number of deaths this condition causes or contributes to in the United States has doubled since 1979, reaching 250,000 deaths a year, along with 3.5 million hospitalizations. 400,000 to 700,000 new cases are being diagnosed annually. This is occurring as advances in other areas of cardiology have enabled more patients to survive heart attacks but leave them with damaged hearts caused by the attack.
"Patients with heart failure have greater disability and are hospitalized more frequently than patients with all forms of cancer combined," said Dr. Jay N. Cohn, who heads a heart failure center at the University of Minnesota, but he said it has become clear that "we can potentially slow the progression of this disease." Dr. Milton Packer, who heads a heart-failure center at Columbia Presbyterian Medical Center in New York, said surveys showed that 80% of American heart-failure patients received digitalis and diuretics, but only 40% received Ace inhibitors and fewer than 5% receive beta-blockers. If all 4 drugs were used together, he said, the studies showed that the number of deaths could be cut by 100,000 a year and the number of hospital admissions by one million.
Packer cautioned that the regimen should be avoided in some cases, including those in which the heart does not enlarge as expected after a heart attack to compensate for damaged muscle. The regimen should also be abandoned when a patient cannot tolerate the drugs. The traditional drugs - digitalis and diuretics - sometimes seem effective by themselves and make the patient feel better, leading some doctors to limit the regimen, but this result is only temporary. Preparation of the guidelines was financed by grants from 12 pharmaceutical companies but the companies played no role in developing or defining them, the panel said.
Patricia G's January 26 reply to Ben B's January 25, 1999 - Hi Ben, I know CoQ10 is very expensive. I found a place where I can order it for about $2 per day for 360mg. Please e-mail me and I will give you the name of the company, and a 1-800 number for you to get the catalog. I got the dosage amount from the booklet I told about. Patrigil@aol.com
Jon's January 26 reply to Patricia G's January 26, 1999 - Hi Patricia, Does the booklet say that should be the dose regardless of a person's weight or the severity of their heart disease? Also, does it mention changing the dose when taking statins like Zocor to lower cholesterol, which lower the body's CoQ10 level? I'd like to find a book that discusses CoQ10 accurately in plain English, but have had no luck so far. Jon.
Susan A, January 26, 1999 - Hi, I am 37 and have recently been diagnosed with DCM. Perhaps this is not a site that I should be using, as currently I have not been diagnosed as CHF. There has been a lot of misinformation given to me. I hope that someone will be able to give me honest straightforward information. I am taking Coreg, Lanoxin, Zestril,and Furosemil. My heart is said to be functioning at 25% with my echocardiogram. I have also been put on a low sodium diet. Where can I go to get current research on this disease? I am scared and unsure of my future. Please connect me with something positive if it is out there. Until now, except for what my cardiologist tells me, everything is pretty much depressing. firstname.lastname@example.org
Doug K's January 26 reply to Margaret J's January 25, 1999 - Hi all, It has been quite a while since I have posted, but I am another one of the old-timers here at Jon's. I found Jon's Place around April of 1997. I am 43 years old, and have dilated cardiomyopathy with an EF of around 50%. I need to update my bio one of these days as well.
Margaret, you asked some questions in your post. First, no one knows for sure how long we will live. There are statistics that give a general picture but it isn't etched in stone. Many things come into play, and many people live for a long time. It depends on our general health, and how well we stay away from sodium, excess fluid intake, exercise, etc,..., not to mention that God has a little say in the equation. Now you mention also about your ITP, which is Idiopathic Thrombocytopenia Purpura, right? The ITP causes you to be short on blood platelets, and high on getting infections, your blood doesn't clot very well and is related to Lupus. I have the opposite problem, but it is also related as an autoimmune disorder. I have Antiphospholipid Antibody Syndrome (another cousin of Lupus), which causes my blood to clot while still in the body (brain, heart, lungs) and so I am on a anti-coagulant for it.
To try to answer your question, where these disorders could have an impact on our hearts is that our own immune systems put out antibodies that actually attack our cells. In your case, it destroys your blood platelets, and in mine, it attacks the phospholipids in my blood plasma, causing it to clot. I have read some research that says our immune system disorder may actually attack our myocardium cells. The same cells that if destroyed, cause heart failure. Not only that, but if our immune system gets weak, a virus may just decide to attack the heart as well. Try to keep a positive attitude. It will take time for your body to heal to whatever degree that it does. Try to relax as much as possible, worrying doesn't help your heart either. I know that is a real tough thing to do. I hope that I have helped you some, feel free to e-mail me if you wish. Best to you all, keep your faith in life. email@example.com
Paul M's January 27 reply to Fay's January 26, 1999 - Hi Fay, I also had trouble with mechanical scales. After some age, they would not weigh the same 2 times in a row due to friction within the mechanical balance mechanism. Plus, my vision problems made reading the scales a problem too. In April of 1998, I bought a Metro brand Electronic Bathroom Scale for $39.99 from Target. It is powered by a 9-volt battery and has LARGE red LED numeric display that is easily visible. I hate LCD display because you can't read them except in very well lighted places. This one is no problem. I had no problems with inconsistent readings which are in ½ pound increments. It also carries a 5 year manufacturer's warranty. I'm happy with mine. Paul M, DCM, EF 55%. firstname.lastname@example.org
Patricia G's January 27 reply to Jon's January 26, 1999 - Hi, The booklet is put out by Keats Good Health Guides. There is an 800 number where you can order it, if you can't find it in a health food store. I found the number at www.Keats.com. If I can semi-understand it, I am sure you can! It didn't say anything about a person's weight, if I remember correctly, just just that a person with CHF/DCM should take 360mg. I think it said to take from 240-360mg, so I take the maximum amount. I hope you find the booklet easily. Patrigil@aol.com
Jon's January 27 reply to Patricia G's January 27, 1999 - Hi Patricia, Thanks but I'm a little leery of information about nutrients that doesn't take size into account. I just have a hard time believing a 105 pound woman should take the same amount as a 250 pound man. There's got to be a book out there that is more complete - I just haven't found it yet. Jon.
Allen Cravener's January 27 reply to Ben B's January 26, 1999 - Hi Ben, It took at least 6-9 months to build up that much fluid. I thought I was simply gaining weight. I had been overweight for many years and decided that it was time to start a diet. I began a strict diet and lost fat, however as I later found out, it was replaced faster than I lost it by fluid. By the time I went to the hospital, I had gone from a size 50 waist (I know, that's way too big) to a size 58. I couldn't find clothes to fit me anymore. After spending 2 weeks in the hospital on Lasix, I came home to a size 40 waist. I am very pleased to see that my diet had worked, I just didn't know it because of the fluid buildup. I'm currently doing quite well. I'm working 50 hours a week and I am maintaining my weight. I feel very good, although I do get tired sometimes. That may be caused by my meds. I am watching my sodium and fluids and I take all my meds. My only problem seems to be that I can't seem to get out of a-fib. Best of luck, and watch for swelling legs, feet and stomach. Allen Cravener. email@example.com
Patrick ?, January 27, 1999 - Hi, I am new to the forum. I am 43, with EF of 25, which has been as low as 11. I was diagnosed 6years ago. I have just been told to go on Coreg and just have some concerns. I was on an investigative drug called vesnarinone, which I have just been taken off as studies were showing negative mortality rates. I'm also curious to know if any men are experiencing severe sexual disfunction and if so what are you you doing to address this problem? I'd appreciate any input on any of these issues. Thanks. firstname.lastname@example.org
Jon's January 27 reply to Patrick ?'s January 27, 1999 - Hi Patrick, I am surprised to hear from people who have recently been taken off Vesnarinone. I was taken off that drug when the original trial was stopped well over a year ago (might be 2 years by now) due to high mortality! I knew the trial was being continued for a limited number of people with heart failure, but I understood it be only for those who had benefitted in the first Phase 3 trial. Luckily, I suffered no ill effects, although it turned out I was on the highest dose, not placebo. Coreg is well documented and although the adjustment may not be easy, there are no mortality problems. See the Coreg page for more info. Jon.
Steve Martin's January 27 reply to Ben B's January 26, 1999 - Hi Ben, I buy my CoQ10 at Costco for $15. One bottle has 120 each, 30mg tablets. I take 120mg/day. One bottle lasts me for one month. Does anyone know if there is a test to determine if one even needs to take CoQ10? Steve, age 48, EF 29. email@example.com
Jon's January 27 reply to Steve Martin's January 27, 1999 - Hi Steve, There's a blood test for CoQ10 levels, but it has to be done within a certain amount of time after your blood is drawn to be truly accurate and not many places do it. You would have to let your fingers do the walking on this one. The Nutrient Stew page has info on the testing time. Jon.
LeeAnn, January 27, 1999 - Hi everyone, Did you miss me? I've moved and been offline for a few weeks. I really missed reading the posts and keeping track of everyone. I'm so excited for Paul S! Congratulations! I've just had my Coreg doubled again. I'm now at 50mg a day and I can't believe I'm tolerating it, but so far I am. I'm just fatigued and my muscles are sore, but nothing unusual. My children are all sick again, so hopefully I won't get it this time.
I have a question for anyone who might know. The Heart Institute here is trying to get me into a research study for a drug that doesn't have a name yet that has been tested as an IV drug on low EF heart failure patients. They're trying it in pill form in this study and are trying to get me in it. I'm supposed to meet with them next week but am worried it might be something that wears my heart out faster. My quality of life is pretty good - I'm not retaining fluids, on only 40mg of Lasix, and generally am doing ok. What are some good questions to ask them? I also have really good insurance, so I don't need free medicine. What would be an advantage or disadvantage to doing this? Thanks for any input. LeeAnn from Phoenix, age 38, DCM, EF 18. firstname.lastname@example.org
Jon's January 27 reply to LeeAnn's January 27, 1999 - Hi LeeAnn, Let me know the study drug designation, usually a combination of numbers and letters, and I'll ask the research manager at my Clinic what she knows about it. She runs a research program that gets spots in all CHF drug trials, so she is up to the minute on trial drugs. Do you know if it is a phase 2 or phase 3 trial? Phase 3 trials are safer than phase 2, from our point of view. You already asked the A number one question: will it wear out my heart faster? Jon.
Sharon J W, January 27, 1999 - Hello out there, I'm new to this world of heart failure. I'm glad I found the site but I must admit that in the beginning, I was disturbed by all the information on it. I'm still somewhat in denial (not unusual), but I am taking charge of my life and I find great comfort in the forum. I'll try to summarize my bio and get it in. I am also very new to computers. I am 100% paced (complete heart block - idiopathic) since 1994. Last Spring, the fatigue and shortness of breath set in. We all thought it was my asthma (sound familiar?). Lots of mistakes later, I'm stabilized at 27% EF. I'm really glad to be aboard. Yes, I changed cardiologists! Happy everything! email@example.com
Ellen ?, January 27, 1999 - Hi, I have had CHF since 1990. I am currently taking Lanoxin, Bumex and Diovan for it. I am also diabetic, on glyburide, hypothyroid on Synthroid, and hyperlipidemic on Lopid. My question is, should I avoid drinking soft water because of the salt content? firstname.lastname@example.org
Kay's January 27 reply to Fay's January 26, 1999 - Hi Faye, The actual scale does not seem to make the difference, as long as you use the same scale consistently. Weigh yourself to establish a baseline - several times on this one same scale - and if it is consistent, use it. If your weight records the same for this trial whether it is 110 or 280, it will serve the purpose. I hope this helps.
Wanda Foster's January 27 reply to Renee M's January 23, 1999 - Hi Renee, I tried to respond to your post about cardiomyopathy and allergies to your e-mail address - UNTONAY@aol.com but it is rejected as an unknown address. Is it possible you could send me a correct e-mail address? Wanda Foster. JPFFSAR@aol.com
Bill D's January 28 reply to Susan A's January 26, 1999 - Hi Susan, Despite your doctors "neglecting" to tell you, I'm afraid you are one of us! <g> Don't feel lonely. There are 4.8 million of us diagnosed and probably a couple million more that aren't. CHF isn't a disease. It's a collection of symptoms caused by various heart problems, problems that prevent your heart from pumping an adequate quantity of blood that distributes oxygen to, and flushes out the water from, our cells. You are on the same medications we take. Your heart is functioning like our hearts and you're on the same low sodium diet we are. If it waddles like a duck and quacks like a duck, it is a duck! <g> Welcome to Jon's Place. This is the best place to answer all the questions that your doctors don't have time to answer. Go to the top of this page and 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! Then come back and talk to us. Ok? Bill. email@example.com
Bill D's January 28 reply to Fay's January 26, 1999 - Hi Fay, those little "spring type" scales are the pits. None of them are accurate. You need to buy a balance beam scale. One where you slide the weights until the pointer centers exactly in the middle. When you set it up with no weight on it and the sliding weight is at zero, you can adjust the pointer to zero too. The only insult to spending the money is the injury inflicted when you find out you weigh 5 pounds more than the old scale said! <g> Bill. firstname.lastname@example.org
Harold Weems, January 28, 1999 - Hi, Today is the first time I have read these messages, and I find them good and helpful. I have just within the past 3 months been diagnosed with CHF. I take lanoxin daily and 10mg lotensin twice daily - this in addition to my insulin routine and B12 for pernicious anemia. I am 76 and feel fine, except I do get tired sometimes. Any advice would be most welcome. email@example.com
Robin W, January 28, 1999 - Hi all, I haven't posted for 10 days or so, and I just got myself up to date today. I still haven't entered the hospital for transplant because I'm still trying to figure out which center would benefit me more. Paul S, it sounds like you're doing great. I've been spending time with my family members doing that one last thing with each of them before going in the hospital. A trip to Atlantic City with my sister-in-law proved very profitable! I hope everyone is doing well. Paul S, please e-mail me, if you wouldn't mind a few questions. Robin W, EF 8%, age 31. firstname.lastname@example.org
Paul M's January 28 reply to Allen Cravener's January 27, 1999 - Hi Allen, I'm curious where most of your water weight appeared on you. Did you have swelling of the ankles, stomach, fingers, legs, or arms? Or was most of the swelling confined to one or two primary areas? I'm feeling miserably fat in the belly. My ankles are no longer swollen. I gained ten pounds over 10-12 days. I went from a comfortable size 36 pants to a tight size 38. I had to buy larger jeans and now the buttons on my shirt are under stress. I can't walk for more than 8-10 minutes without stopping to relieve my back pain. I do have an appointment with my cardiologist and I'm going to insist he try to figure things out. My PCP ran a few tests, including x-rays of the stomach, and said I was constipated. After taking an enema to clean me out, I lost a total of one pound but quickly gained it back. My PCP thinks I'm just getting fat! I don't think so. email@example.com
Pete P, January 28, 1999 - Hi all, Ken, my fluids are not restricted, it's my sodium my doc wants below 1500mg daily. I've found that a reverse osmosis system will remove 99% of sodium (and just about everything else) from water. Ellen, a water softener can add as much as 400mg of sodium per liter, depending on your softener setting. A distiller or reverse osmosis unit is needed to remove sodium. If you drink bottled water, make sure it has been treated by one of these methods. Most of the bottled water you see on the shelves is tap water from some city's supply. Our grocery store down here (Publix) sells purified water for 59¢ a gallon. Thanks to this forum, I've learned a lot in the past week! Pete, age 43, EF 25, Florida. firstname.lastname@example.org
Paul S' January 28 reply to LeeAnn D's January 27, 1999 - Hey thanks LeeAnn for your notice, I am doing great. At least, I feel great anyway But this is just day number 16 for me and my new heart and I have had a total of 2 biopsies, the first was a grade 3 rejection which was expected, and then the 1/26 biopsy came back as a grade 2 rejection, which has me now waiting for the pharmacy to send up some heavy hitting steroids and other IV meds because this grade of rejection is causing some damage. At least I won't have to spend the whole night here. I come back in the morning for another round of IV meds and a good checkup with my transplant team so we can work this out. The grade 3 only requires a raise in my Immuran and cyclosporin, while the grade 2 requires the use of IV steroids and a raise in cyclosporin and possible raise in Immuran. My white count is up to over 18, which is serious but I haven't had a temperature yet. Everything is still scary and depressing. I had hoped to see my boys this weekend, ages 4 and 1, but since I have to deal with this problem, that won't happen. But there is still tomorrow to look forward to and He has not left me yet.
I would also ask that everyone pray for a friend of mine who is waiting here for a heart also. Her name is Bev Thomas at Vanderbilt Medical Center, 7th North, Nashville, Tennessee, 37232. She is a wonderful person who has had to have the Novacor LVAD system implanted and who is having a very, very rough time of this emotionally, as well as physically. She suffers bad bouts of depression, especially when her children have to leave and go home. I know as well as many of you that He is the strongest thing you can cling to in this type of storm, that batters a person's life and all of our prayers would be so welcome to help her carry herself through this most difficult hour. I also would like to mention Jack Woods, a transplant patient out for nearly 2 years, who has had some rejection problems but is bouncing back nicely. There is also a young man here, I don't have his name yet, but he is in very bad shape. He was evaluated in St. Louis and came here for a second opinon because St. Louis said he wasn't a good enough candidate. He is 14 and due to a birth defect, he needs a heart and lung transplant, and I know that our prayers for him and his family will be helpful. So thank you all for that. I pray all of us have a safe wonderful day tomorrow and rejoice in his love for us all. May God bless you. Paul S. email@example.com
Peggy A, January 28, 1999 - Hi, I have been diagnosed with supraventricular tachycardia (SVT). How does this relate to CHF and what are my options? Airpeg@aol.com
Brenda H, January 28, 1999 - Hi all, Jon, Thanks so much for your input. It helps me to relax a little! Tina, how are you doing? I have PPCM too. It seems the number of us women finding this site with PPCM is growing. At least we are becoming informed. Thank goodness for the support we get here! How important is Coreg if I am gradually improving? Should I still get on it? God bless everyone. Brenda. Hansonfoxi@aol.com
Patricia G, January 28, 1999 - Hi, I posted some dosages incorrectly for CoQ10 yesterday. I thought my booklet said 240-360mg is the correct dose for CHF/DCM. It actually says 180-360mg. Sorry! I do take the 360mg and am feeling great! Patrigil@aol.com
Jon's Note: That is enough leeway to account for weight differences, too
Kim S, January 28, 1999 - Hi everyone, Just an update concerning my condition: I was diagnosed with PPCM five months ago with an EF of 15%. I had another echo done yesterday and my EF is now up to 40% and possibly even higher (haven't gotten the final report yet)! I'm still on Vasotec and Coreg. I've been off the diuretics for a few weeks now without any problems. Soon I will be going off the Digoxin as well. I'm going into surgery next week for an unrelated reason but prayers are still needed. I have fears about how my heart will hold up during and after surgery. I certainly would like to hear from any woman who have this condition also.
Jon's Note: Congrats on the EF!
Ginger, January 28, 1999 - Hiya's and Hugs, I am back and I have missed you all lots. I will be at chat tonight. I hope you are all doing ok! :-) I need to catch up on posts and e-mail so I will post later. Hugs, Ginger. firstname.lastname@example.org
Sharon J W, January 28, 1999 - Hi, My first post - and I messed up! Wrong e-mail address. I also read the message online and took issue with my own word - "stabilized." One day at a time! I'm going to sit back now and read and re-read your kind, thoughtful and honest posts to each other. Happy everything! Sjw49@yahoo.com
Allen Cravener's January 28 reply to Paul M's January 28, 1999 - Hi Paul, My swelling began at my ankles. At least that's where I noticed it first, however, it may have been doing the same on my stomach and I just didn't notice it there at first. At last, I started swelling everywhere. My hands and fingers became so large they were gross. I began to weep fluid out of the pores in my legs and arms. My face swelled up also. It was horrible. When I think back on the whole process, it makes me feel very stupid for not seeking help before it got so bad. Darned male ego! I just kept thinking that it would pass if given enough time. Allen Cravener. email@example.com
Donald G, January 28, 1999 - Hi, I have great news, and monster thank yous for your help. A small bidding war is now taking place among a few publishers in New York, who after reading a few score and more letters from Jon's Place visitors about the need for no salt cookbooks, want to publish the Megaheart No Salt cookbook. It is sold, in other words, because we have received more than one offer. It should make it to bookstores sometime in 1999. Thanks to each and everyone who helped. We couldn't have done it without you. Don. firstname.lastname@example.org
Jennifer, January 28, 1999 - Hello everybody, I haven't posted much lately; Just been reading. I have a holter monitor on right now. Has anyone else done this? If so, what do they tell from it? I am going to get another echo done next week. I can't wait to see if I have improved even more this time. The baby is 3 months now and he is doing great. How are you, Brenda and Tina? All the other women with PPCM? I havent heard much from you lately. I keep missing the chats. What time is it for me if I am in central standard time? I live in Indiana. Is it before or after the eastern time? I switched my meds now. I am now taking 50mg of Tenormin a day now instead of one. I don't feel real tired either, I can't believe it. I will see the cardiologist on the 10th this next month. My BP is better now also, finally got it under control. I don't understand why everybody here has low BP and mine is really high. Does anybody know this? Jon, do you know? I will talk to you all in the chat room if I can find out the right time. <lol> Talk to you soon, bye. Jennifer, EF 45%. JRobi87102@aol.com
Jon's January 28 reply to Jennifer's January 28, 1999 - Hi Jennifer, I have worn a holter monitor. It is used to detect arrhythmia, skipped heart beats and such. I just put a set of tables - one for each Chat - on the chat page to help everyone know precisely when to show up. If you spot a mistake or think a different format would be easier to understand, please let me know! Thanks. I can tell you why my BP is low - my meds are designed to keep it that way. :-) Between the beta-blocker (Coreg) and the Ace inhibitor (Monopril), I'm lucky to have a blood pressure! If you have chronic high BP despite meds to lower it, get a doc who will aggressively pursue the cause and treat it. Chronic high BP ain't good. Jon.
Henry Ticknor, January 28, 1999 - Hi, Just when you begin to think CHF is the great silent disease of the century, the Washington Post runs a full page ad from Smith Kline singing the praises of Coreg. The interesting thing about the ad was that it was directed toward health care professionals and not patients! It reviewed last week's item in the Journal of Cardiology in which 156 doctors claimed that the big four - Ace inhibitors, diuretics, digoxin, and beta-blockers were now the gold standard for CHF treatment. They could have had a scoop if they read Jon's Place! Take care, Henry T.
Jon's January 28 reply to Henry Ticknor's January 28, 1999 - Hi Henry, Yeah, SKB is probably very unhappy since CIBIS II was stopped and showed that another beta-blocker might be just as good as Coreg for CHF - and a lot cheaper! <LOL> We'll see what the next trial shows. You can find that one summarized in plain English on the Coreg page. Jon.
Jennifer's January 28 reply to Kim S' January 28, 1999 - Hello Kim, I also have PPCM. I have had it for 3 months now. My EF is also at 45% or so. I feel pretty good lately, some palpitations at night a lot. I'm glad to hear you are feeling better. I am also on Vasotec and then Tenormin. Write me anytime. I am getting another echo next week and can't wait to see what my EF is. I had the holter monitor done yesterday and today. I will get the results on Monday. I haven't been on the Lasix for about 2 months now and I haven't needed it either. When I was diagnosed, my EF was 40% and I had CHF and pulmonary edema. I lost 35lbs in 3 days. I am glad about your news. They say it isn't a very good recovery rate for this disease. Think positive. Talk to you soon. Jennifer, EF 45%. JRobi87102@aol.com
Jon, January 28, 1999 - Hi guys, I haven't slept in quite a while so it will probably catch up with me tomorrow, making posts late. If I start to babble aimlessly, it's lack of sleep. Not to worry, this is a very rare ocurrence these days, but every once in while,... Anyway, I've been playing with making 3D graphics whenever I have the time. The bigger stuff will start to trickle onto the wallpaper page soon, but if you CHF Web Ringers want a nice, small 3D heart bullet for your pages, you're welcome to use the one I made for my Links page. You can see the image I made and then shrunk (Url no longer valid) here. Another monstrosity in progress can be seen (Url no longer valid). Jon.
Tina, January 28, 1999 - Hi Jennifer, I haven't heard from you in a while. Write to me if possible. I would like to hear from you to see how you are doing. I've been getting a lot of chest pain. My doctor told me to take Motrin but my EF has improved, thank goodness. Please e-mail me. Your friend, Tina.
Bill D's January 28 reply to Harold Weems' January 28, 1999 - Hi Harold, Welcome to Jon's Place! His 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 your CHF. Your doctor already has you taking an Ace inhibitor and digoxin. If you find yourself swelling up and gaining weight, maybe you should ask him about a diuretic. Many of us also take Coreg, which is a beta-blocker. Those 4 medicines are the usual regimen for CHF patients. Study Jon's stuff and you'll find out all the information your doctor doesn't have the time to tell you! Bill. email@example.com
Bill D's January 28 reply to Peggy A's January 28, 1999 - Hi Peggy, We're not doctors here - just patients who are taking cram courses on CHF. I looked up supraventricular tachycardia and it seems to be an uncontrolled, rapid beating of the upper section of your heart. Your electrical impulses that control your heart muscles are mixed up. They say, depending on where it is, they will try to correct it by either medication, cardioversion by a shock or a radio impulse, implant a pacemaker or a defibrillator. SVT can interfere with with your heart's pumping ability and it can be another cause of the bunch of sympyoms that make up CHF. I had what was termed "atrial flutter." They cured mine in record time with cardioversion. Good luck. Bill. firstname.lastname@example.org
Bill D's January 28 reply to Sharon J W's January 28, 1999 - Hi Sharon, Welcome to Jon's Place! In addition to the forums, Jon has collected 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 how we try to cope with CHF. I'm not sure I know what you mean when you say "complete heart block." I'm assuming one of the 6 arteries that feed your heart muscles is completely blocked. Normally, if they catch it before the muscles are completely dead, they will do a bypass. Didn't you have terrible angina to warn you? You must be like my wife Rosie. Pain is nothing to her. She let her appendix blow up before she called a doctor! That makes me look like a chicken with the lowest pain threshold on the planet! <g> Bill. email@example.com
Sigmund, January 29, 1999 - Hello friends, I haven't posted for a long time - just reading the posts and learning. I am 77, EF less than 20, BP usually in the 90s/60. I've had the "normal" severe CHF symptoms and survived 2 heart attacks and a double bypass some 13 years ago. I'm on Coreg, Cozaar, Lanoxin, and Lasix. A few months ago, I added co-enzyme Q10, 100mg per day. In the past, I could not walk more than about 100 feet without chest discomfort. Yesterday, my wife of 57 years and I took a walk on the boardwalk of Jone's Beach and to my delight, walked to an area about ¼ mile away without discomfort. We sat and rested for a few minutes, then walked back. Now, for the reason of this post: I suspect the improvement was a result of the Coreg and/or the Cozaar, both of which I've been taking about 9 months without any noticeable change. I take 12.5mg Coreg twice a day and 25mg of Cozaar. No troublesome side effects have been detected. My point is: stay with Coreg. From other posts on this forum, I understand it often takes a while before this drug takes effect. I've experienced no noticeable side effects. God bless you all and a special thanks to Jon - I pray we all recover from this debilitating condition. firstname.lastname@example.org
Candy, January 29, 1999 - Hello, I'm looking for some info about meds. I looked through Jon's med pages, but couldn't find the answer. Maybe I was looking too hard. <G> I take Lasix, Coreg, lanoxin, imdur, Accupril, and aspirin for my heart. Which, if any of these, have a side effect of joint pain or muscle aches? I appreciate any info. Thanks. CMPotila@aol.com
Jon's Note: Do you take a cholesterol lowering drug?
Justin M, January 29, 1999 - Hi everybody! I'm a 27-year old man and I was diagnosed with dilated cardiomyopathy and congestive heart failure in October. I'm scared about what will happen to me, what my future holds, and what my quality of life is going to be. I'm still new to understanding my illness, but Jon's Place has been a great source of information. I often read the forum, but this is my first post. I'm hoping to find someone else in the 20-30 year old range that is going through this. Or am I the only one? email@example.com
Paul M, January 29, 1999 - Hi, We made some progress today on my swollen belly condition. We contacted my cardiologist in attempt to move up my appointment from Febraury 11 but they were booked solid due to being closed on snow days here in central Ohio. Then we got a hold of my PCP and got an appointment to see him today. Today was different and we got his attention. <G>
Previously, there was no swelling of the ankles as in times past. Blood tests only indicated slightly higher liver enzymes. When I entered his office this morning, my left ankle was puffy for a change. The previous night I had trouble sleeping because I would be awakened by a drowning sensation requiring me to clear my throat. The fact I still have my cough from September helped. All of these syptoms could not be overlooked any more.
The end results was thet the doc ordered an EKG, ordered a chest x-ray, and ordered an echocardiogram, and wrote a prescription for a thiazide diuretic to complement my Lasix. Well tonight, I can proudly report I'm peeing more! By the way, his initial diagnosis on my form included Hepatitis. He also listened to my lungs. In the past, he reported they sounded clear but today no such report. In fact, he noted nothing about my lungs and I forgot to ask. That makes me wonder if he really did hear something.
My wife and I concluded a couple of months ago that this PCP was not going to be convinced I really had a water problem instead of a weight gaining problem. We concluded I would have to just get worse before the evidence slapped him in the face. Today it did! My wife and I are feeling better at this point in time. We got his attention. I will only let doctors push me so far before we push back. My wife is exttremely good at watching out for my health. Case in point: When I was in the hospital the first time with CHF, my wife got into a real shouting match with my PCP over the phone from the nursing station. She was quite upset and I was right next to her, hearing all of that conversation. Towards the end, my PCP found out that I was right there too, hearing all of this crap that was going on between him and my wife, and he got very concerned that I was also getting angry and upset (I wasn't). When she turned the phone over to me, all I had to say was "just do what she is asking for" and that was it. He was left speechless and complied with our request for a different cardiologist. He thought he had really upset his patient. This PCP moved out of state so he is history. Remember to fight for your health! firstname.lastname@example.org
LeeAnn D's January 29 reply to Allen Cravener's January 29, 1999 - Hey Allen, I was just wondering, if they can't get you out of A-fib, wouldn't you be a good candidate for a defibrillator? email@example.com
LeeAnn D, January 29, 1999 - Hi, With all the posts about CoQ10, I was wondering if everyone knows that it is fat soluble. Unless you take the pills that have been prepared that way, you should eat a glob of fat when you take them, like cheese or peanut butter - low sodium of course! Otherwise, you may not be absorbing much. firstname.lastname@example.org
Tom S, January 29, 1999 - Hi, It might be worthy to note that Coumadin definitely can have a "bite" to it if not monitored closely. For the past 1½ weeks I had been feeling fatigued and experiencing a low grade headache, similar to the exhaustion I felt just before my last trip to the hospital. This past Sunday, I felt particularly lousy and the edge of my right eye hurt like there was something under the lid. Within a couple of hours, some very pronounced bags under my eyes appeared. My eyes later became blackened and looked very similar to eyes that have been traumatized in a fight. I reasoned it probably was an "OD" of Coumadin ("rat poison" blood thinner) and went to the hospital for a blood test. My wife was with me and she commented the blood looked very thin and was almost a pink color. Her observations were well founded. Later in the day, I got a panicked call from my cardiologist's office to immediately stop taking Coumadin for several days, then restart with a small daily dose, and another Pro Thrombin (PT) blood test at the end of next week.
I post this to warn folks taking Coumadin that if they are feeling really lousy for no apparent reason, suffering from a mild headache for a prolonged period of time and start getting black and blue eyes for no reason, plus their extremities feel like rubber, perhaps a call to the doctor is in order. I originally had started on 5mg of Coumadin a day and went up to 7.5mg, then for some reason he upped that to 10mg a day. I have had a lot of trouble wth controlling the levels since then.
Jennifer R's January 29 reply to Jon's January 28, 1999 - Hello again, Jon, thanks for writing about the chat times. I do understand the new table better. I sure hope to get on tomorrow and chat. I still haven't joined any so far. I'll talk to you all soon. I have to go take hubby to get a vasectomy today. <G> Bye bye. Jennifer R, EF 45%. JRobi87102@aol.com
Sharon J W's January 29 reply to Bill D's January 28, 1999 - Hi, Thanks for reminding me to be less medical. My arteries to this day are clean. The problem is that my heart has a problem where the "beat" doesn't reach the ventricles (we don't know why). After seizures and a cardiac arrest, the pacemaker electrodes were put in both the right atrium and the right ventricle to artificially stimulate them. They generally are in sync. I have been an inactive reader of the site for months but have to re-read the pages often. I'm one of those who suffer from very low blood pressure and my memory is often a problem. I have moderate to severe cardiomyopathy, and severe mitral valve regurgitation. Enough of me - How's everybody doing? God bless! email@example.com
Jill M, January 29, 1999 - Hi, I am an old member of this forum, also in years (60 soon), and in having first found this site in July of 1997. This is what I hope is an encouraging message for the growing number of women with peripartum cardiomyopathy who've been writing in, and also a warning. After lengthy questioning by my cardiologist, he thinks I had PCM with my last pregnancy - obviously undiagnosed, but I had all the symptoms - swelling, high BP, breathing problems ascribed to asthma, extreme tiredness, etc. I also kept fainting. My "baby" who was born in 1968 is now 31, and is getting married next week. My cardiologist thinks the CM resolved itself after a few months as a result of my heart compensating, but 29 years later, the undetected damage caused a recurrence which led to CHF. I think that this is possibly very good news for some of you in terms of longevity, but also a warning that even if you are pronounced "cured," it is important that you insist on regular EKGs and possibly echocardiograms as well. In retrospect, I think I'm glad I didn't know about the time bomb that was ticking away. I never could understand why I had so much less stamina than anyone else, and why every cold became a major infection. Anyway, I am now doing well on the meds cocktail, and hope to be around for a while longer. If anyone wants more info, please e-mail me. Jill M from Africa. firstname.lastname@example.org
Gail M, January 29, 1999 - Hi all, I'm a new kid on the block. My EF was 20 when I was diagnosed in March of 1998. I also have a defibrillator implanted at the same time. I have really felt fine and can do everyday normal things, however I do not push it. Yesterday I was quite queasy and did vomit a couple of times. Now I need some help with some information please. My doctors at Shand's teaching hospital in Gainsville would like me to participate in a clinical trial for approximately 3 years. They want to study the effects of a drug called Moxinidine made by Eli Lily. There will be about 3000 other people in this study nation-wide. My cardiologist here in Orlando reviewed the information packet and has no problem with this. Does anyone have info on this drug and has anyone else ever participated in a trial study and ended up getting the placebo or the real thing? Would you participate again if asked? Please answer ASAP. Thanks and God bless.
Jon's January 29 reply to Gail M's January 29, 1999 - Hi Gail, I have been in 3 drug trials. I received the actual drug in all 3 trials, although I did not know it in 2 of the trials until I was out of the trial. Two were Phase 3 trials (explained at The Manual and the New CHF Drugs pages) - carvedilol and Vesnarinine. One was a Phase 2 trial - for a drug that was not yet named - it had a long number instead. The carvedilol (Coreg) trial went very well for me. The Vesnarinone trial was stopped due to people dropping dead sooner than they should. It turned out I was on the highest dose of the actual drug, but it caused me no problems. The Phase 2 trial was different. I went home after the long doctor's office wait following the first dose, and that night I almost died. Needless to say, I was off that trial the next day, per my cardiologist. No one else in that trial, at least in his office, suffered any ill effects at all.
Would I participate in another trial? Maybe. It does require multiple trips to the doctor's office and in my opinion, that's the main drawback. I would only participate in Phase 3 trials, though. The risk is pretty low in Phase 3 trials and the potential benefits are large, although certainly not guaranteed.
Moxonidine is related to clonidine and rilmenidine. You can search for these drug names as well for more info, although clonodine has more side effects than the other two for technical reasons. Moxonidine is selective for imidazoline receptors. It works on the sympathetic nervous system, which produces norepinephrine, which in turn stimulates the heart. In the case of heart failure, this over-stimulates the heart amd Moxonidine works to prevent this. This sympathetic activity contributes to arrhythmia and probably to the progression of heart failure, and has been directly linked to mortality; a high rate of spillover of noradrenaline from the heart is a strong predictor of poor prognosis in severe heart failure. So preventing it is a good thing. That all comes from the Journal of The Autonomic Nervous System - October 15th, 1998 issue.
I think this drug lowers the pressure in your veins instead of your arteries, thus reducing preload. This is how I understand it, but then again, I haven't consulted my doc yet. It does reduce BP. Researchers have decided that Moxonidine is relevant to heart failure because of the success of Coreg. FWIW, Moxonidine has been tested for high blood pessure for 8 years from 1989 to 1997, including 74 clinical trials and an estimated 370,000 patient years of exposure. Dry mouth and drowsiness were the most frequently reported side effects, followed by headache and dizziness. Serious side effects were rare. Of course, these trial patients didn't have heart failure either, but still, it's an impressive safety record. Jon.
Jon's January 29 reply to Peggy A's, January 28, 1999 - Hi Peggy, My sister has supraventricular tachycardia. She takes a calcium channel blocker to reduce her heart rate and prevent frequent occurrences. It got real exciting last time she had a severe episode while on a commercial jet. <G> The captain kept insisting he turn around and land at the nearest airport after he got a look at her, but finally completed the flight. He did have an ambulance meet her when they landed, though. The calcium channel blocker works well for her. Do you have CHF also? If so, do you know the cause? Jon.
Ben B's January 29 reply to Felix O's January 23, 1999 - Hi, I understand what you are going through with regards to Disability. I feel good enough to work almost every day, and feel work would even be therapeutic for me, but am frightened to try because I don't want to risk losing my Disability. The government really makes a mistake. I feel they lose a lot of taxes and spend a lot of money, because they don't make it easier for people to try working for a while without risking all.
Milo, January 29, 1999 - Hi folks, Milo wrote me today because he ran across another good book he wanted to share some information with you. He has not resumed his snail-mail posts to the forum. The amount of posts is just too much for him to deal with at this time. He did ask that I send him any replies to his posts, which I will. Paul M.
Excerpts from "Who Gets Sick" by Blair Justice, PhD. How Beliefs, Moods, and Thoughts Affect your Health:
"Ask most people what they think about stress - the bugaboo of the '80s - and they're certain to tell you something bad - It wrecks the immune system, gives people heart attacks, raises the risk of cancer - the anti-stress scare makes it seem that nothing short of retiring to rural Vermont could keep people healthy. Now there is a more hopeful way of looking at stress, one that's closer to reality. You don't have to accept a victim's fate. There are ways to change from helpless to hardy. It's not just in your mind; it's in your brain. The human brain is designed to run the human body. Stated at its simplest, our health is controlled by our brain. Foods are chemicals, and some people may be medicating themselves with food because it makes them feel better. What you eat for lunch can affect more than physical fitness. Certain nutrients can have a noticeable impact within hours on attention span, memory and mood. The effect is like that of a drug.
Friends can be good medicine. 'A problem shared is a problem halved' is certainly true, at least in terms of its toll on physical and mental health. The quality of our relationships may have more to do with how often we get sick and how soon we get well than our genes, chemistry, diet, or environment."
More to come. Maybe you will want to read the whole book. Milo. via email@example.com
Roger H, January 29, 1999 - Hello All, I was at the doctor's today. I got started on Coreg about 5 weeks ago. He started me at 3.125mg twice a day with no change, so after a week he doubled it to 6.25mg twice a day. After a week there was no change in blood pressure and a very slight in heart rate. It was decided to give it another week to see how it goes. No change after another week, so he increased it to 12.5mg twice a day. There was a good drop in the heart rate but I have the doctor befuddled because my blood pressure went up. I am not having any adverse effect with the Coreg so he was considering upping the Coreg this week but decided maybe he'd better see how it is in another week. So for now I am still at 12.5mg twice a day. Has anyone heard of blood pressure going up on Coreg? I am giving the doctor something to ponder, anyway. I don't have any water retention problems so I am really lucky in that sense. I have not noticed any improvement in my breathing. It seems like I just run out of breath at a lower heart rate now. That will hopefully improve as we go. Well, thanks for listening. I'll keep you posted as it goes. I see the doc next Friday so will see how it is then. Roger H, EF 20%, resting heart rate now approximately 83. firstname.lastname@example.org
Jon's Note: One other person had this happen. Does anyone remember who it was?
Bill D's January 29 reply to Gail M's January 29, 1999 - Hi Gail, Would you give me your e-mail address? I live in Winter Springs and the Deitemeyers live in Kissimmee. I'm a patient of the Florida Heart Group and I'd love to talk to you. E-mail me, won't you? Bill. email@example.com
Bill D's January 29 reply to Candy's January 29, 1999 - Hi Candy, I didn't see Potassium on your list of meds. My Mayo Clinic Pharmacist CD says Lasix can wash your potassium out and one of the symptoms of low potassium, other than dizziness, is aching joints. Most of us take something like K-Dur, which is slow release prescription potassium. Bill. firstname.lastname@example.org
Dee Whitfield, January 29, 1999 - Hi Everyone, This is my very first post. I searched all over the Net for this site. I have a pacemaker, and am a 37 year old female, single mother of one beautiful daughter - and scared. I was diagnosed with cardiomyopothy in 1994 and a pacemaker was inserted. A couple of weeks ago, I had a terrible cold and yep - CHF! I felt like a hog, I can't seem to get my weight down. I've been on a research program for redux. That went off the market. My cardiologist had me on it and now he's doing research for maridia. Since July, I've lost 10 pounds, then 2 weeks ago, the fluid build-up put it back on. I have been in a terrible state. My primary care physician put me in the hospital, my cardiologist can't go to the hospital because of the type of insurance I have, and some other cardiologists saw me and then out me on Coreg, because my heart rate was beating fast.
I got sicker than sick, the regular cardiologist took me off it. I went to see him today and he says my rate was 80% faster than normal. He discovered my insurance was not referred today and couldn't give me the Holter monitor for the weekend. Whew, I am praying so hard! I guess the rate can be up until I see him on Monday. I'm on Lasix, Norvasc, Vasotec, K-dur, and a low sodium diet. My cardiologist doesn't talk to me much about weight. Is there any way I can really lose the weight? Weight Watchers, maybe. My ankles are not swollen but my stomach hurts and looks big. I've never had much of a stomach but I've gone from 250 pounds to 232 pounds since getting out of the hospital. I'm 5'5". I am tired of this yo-yo dieting! I really want the weight off! I'm starting a walking program this week. Can anyone tell me some things I need to ask my cardiologist? I have just allowed them to do whatever, because of fear! God bless you all and thank you for whatever replies. Cinamon@Bellsouth.net
Candy's January 29 reply to Jon's January 29, 1999 - Hi Jon, I don't take any cholesterol lowering medication. My PCP had it checked about 2 years ago. It was high and she had me modify my diet to lower it. The only good thing my cardiologist said about my heart was that I had no blockages in my major arteries. Another good thing that happened is my rehabilitation doctor is going to bat for me and sent my cardiologist a letter to make sure he tells me how to modify my diet, what exercises are beneficial, and let me know basically how much I can do. My cardiologist didn't let me know the first time around. CMPotila@aol.com
John Len's January 30 reply to Ben B's January 29, 1999 - Hi Ben, I am on Disability and certainly prefer to work if I could. My answer was to volunteer at a local museum 4 hours once a week and can work longer or more days depending on how I feel. I enjoy it and it keeps my mind active. email@example.com
Ruthie A's January 30 reply to Dee Whitfield's's January 29, 1999 - Hi Dee, Welcome to Jon's Place. It's the best place to get all kinds of help and support. Have you ever heard of "Weigh Down Workshop?" It is a weight loss program that is very, very successful and is easy to adapt to our dietary restrictions. There are workshops all over the place, especially in churches and a book, "The Weigh Down Diet" by Gwen Shamblin. Don't get side-tracked by the title. There really is no dieting involved. You can find Gwen's book in most bookstores, such as Barnes and Noble, Amazon.com and B. Dalton. It's worth a try, at least. Ruthie A. firstname.lastname@example.org
Jamie S' January 30 reply to Jennifer R's January 29, 1999 - Hello Jennifer, I hope the vasectomy works out for both of you. :-) My husband is more then willing to get it done. I thought about a tubal. I just want to make an informed decision. Did you gather any research in your decision? What played a part in your decision? I know both has risks. I think vasectomy is the less risk, right? Take care, everyone. Jamie, age 29, PPCM, New Jersey. JamieDan@prodigy.net
Jon's Note: No contest - vasectomy is quick and easy - had one after Linz was born.
Jackson Teter, January 30, 1999 - Hi Jon, I want to thank everyone for the support you have given Judy and I over my recent illness. After returning from the hospital last weekend, things continued going downhill until Monday night. My blood pressure was down to 60/40 so I returned to the hospital. It seems when they drained my fluids the previous week ( IV Lasix and extreme fluid restriction), they had dehydrated me to a dangerously low level. That combined with the cath and rotoblation was just too much, too soon. After rehydration, they scheduled me for another cath to open my right circumflex coronary artery, which is 70% blocked. Right before they were to take me to the cath lab, they called off the procedure. My blood platelet count had dropped from 142 to 12, with a retest number of 8. I was transfused with 6 units of platelets and released to come home yesterday. Their best guess is that the platelet drop was caused by the new drugs they use with the rotoblation, and a change of meds my cardiologist had made (Lasix to Demadex ). I have a local blood test Monday and a followup with my cardiologist on Thursday. On a positive note, I am free of edema at the moment and I have lost a good bit of weight, which I have needed and continue to need to do. I wouldn't advise this method as a diet of choice. There's got to be an easier way. Continued support of members of this forum and their prayers is something I couldn't do without. Thanks to all for being there, and God bless all. Jackson Teter, 56, CAD, CHF. email@example.com
Regina R, January 30, 1999 - Hi everyone, I am on Coumadin and am concerned that my doctor has not been monitoring my blood. The last blood test was for my cholesterol and I asked why he wasn't doing a PT test, and he said I didn't need it. I would like to know how often your doctors recommend you go for blood work. Thanks. Reginaro@aol.com
Candy's January 30 reply to Bill D's January 29, 1999 - Hello Bill, When I left the hospital, I was on K-Dur. However, a week later I was back in the hospital with dehydration and too much potassium. Apparently, the doctor decreased my fluids so fast with Lasix, I became dehydrated. My potassium level was not depleted though. I had to take this medication to reduce my potassium. They stopped the K-Dur and didn't prescribe it again. I did tell my PCP about the joint pain. CMPotila@aol.com
Anne M's January 30 reply to Gail M's January 29, 1999 - Hi, I am also part of a study of monoxidine in Toronto, Canada. I started the drug in early January and have just had the dosage increased. The only side effect I have noticed is a dry mouth, but otherwise am encouraged as there have been some small improvemants already. I am starting with an EF of 10% so I am keen to do anything that will improve my situation! Jon noted in his reply to you that this drug might cause some difficulties if you have any arrhythmia. Fortunately, I don't. How about you? I would love to hear from you and compare notes. I haven't heard of anyone else on this drug. Anne. Cmeda@istar.ca
Pat Latimer's January 30 reply to Ben B's January 29, 1999 - Hi Ben, I saw your post about not going to work because you might lose your Disability. Social Security sent me a booklet on their program that allows people to try to go back to work for a trial period up to 9 months before they would definitely cut off the Disability. Maybe you could call your local office and request the booklet. I thought maybe I could go back to work for a trial period but this arrhythmia has kicked in and is constant now, so no go. Pat Latimer. firstname.lastname@example.org
Bill D's January 30 reply to Dee Whitfield's January 29, 1999 - Hi Dee, Here's a story you might be interested in. I called on Marty for about ten years. Marty was an engineer and I was selling valves. Marty was big! At about 5' 11", he weighed 450 pounds. All the major airlines had an agreement with Marty's company. They would only charge him 150% even though he took up 2 seats on the plane. They would remove the arm rest between the seats and provide Marty with a safety belt extender! Normally, Marty had a sunny disposition and all us salesman looked forward to visiting him, but every once in while, he'd go on a diet and none of us wanted to be anywhere near him. He'd bite your head off, and we were afraid we'd lose his business. He'd diet and lose a hundred pounds but he couldn't keep it up. He'd eat the weight right back on and the sun would come out. One day we heard Marty was on another diet. After 2 weeks, I found that I just had to see him. I wasn't looking forward to it, but he said he wanted to go to lunch. He ordered 2 crab salads, 6 pieces of dry toast, 6 kinds of mustard and 3 apples. I ordered the same and couldn't eat all of the stuff. I weighed 220 at the time. His disposition was great. About a year later, he weighed 187 pounds and was an "Instructor" for Weight Watchers! He'd tack up his old pants for his "students" to see. Dee, you could crawl through one of those pant legs! He'd weigh each lady and not take any excuses if they hadn't lost some pounds. I sure was impressed with Weight Watchers! Welcome to Jon's Place! Bill. email@example.com
Bill D's January 30 reply to Justin's January 27, 1999 - Hi Justin, Sorry to be so long in welcoming you. I was waiting and hoping one of our younger members would step up to the bat. We do have members your age. We have 1 and 3 year olds, 6 and 7 year olds, college students, and lots in the 30-40 year old category. When you figure almost 5 million people have been diagnosed with CHF and a couple more million who are misdiagnosed, that leaves room for everybody! I hope you have realized Jon has a lot of information you need to know in his "Site Index" at the top of this page. Just go in there and root around. Don't forget to read "The Manual." If you go back in "The Archives" you will find messages posted by people in their twenties. You could e-mail them and see how they are making out. Bill, EF 37. firstname.lastname@example.org
Paul M's January 30 reply to Bill D's January 29, 1999 - Hi Bill, Diuretics do not wash out potassium in everyone. Some persons like myself don't need potassium supplements. In fact, while I was on potassium, my potassium count was too high! The doctor explained to me this happens in some persons and I can't remember whether he tied it to diabetes or other meds. In any case, anyone on diuretics needs to have their electrolytes checked several times each year. email@example.com
Jon's Note: Every 3 months is the usual standard.
Milo, January 31, 1999 - Excerpts from "Who Gets Sick" by Blair Justice, PhD. "How Beliefs, Moods, and Thoughts Affect your Health"
"Only a fraction of those infected with a pathogen become ill, and psychological factors may play a major role in determining who does and does not get sick. I have come to the tentative conclusion that there is an 'immunosuppression-prone' personality. Many people with the AIDS virus do not manifest the symptoms, and it may be that emotions, attitudes, beliefs, and life style are a contributing cause of the disease. What does it mean if you wake up anxious, dreading the day? What about continuing in roles, jobs or relationships you hate? If you are like most people, you are likely to continue as you always have, even if you give yourself high blood pressure. The unhappy person is the target for any and every kind of illness.
Those who know how close the connection is between state of mind of a man and the state of immunity of his body will understand that the sudden loss of hope and courage can have a deadly effect. Most lay people take it for granted that a person's frame of mind has something to do with his propensity to fall ill and even to die, but physicians rarely regard this as a legitimate area for their scientific interest. Physical illness can become the only control one has over life. Brain chemicals can be transformed when a person feels he isn't in control, and this can produce depression.
Rule Number One is don't sweat the small stuff. Rule Number Two is that it's all small stuff. If you can't fight and you can t flee, flow. A pessimist is someone who, when confronted with two unpleasant alternatives, selects both."
More to come. Maybe you will just want to read the whole book. Milo. via firstname.lastname@example.org
Gus R's January 31 reply to Regina R's January 30, 1999 - Hi Regina, I disagree with your doc in regards to blood testing while taking Coumadin, but more importantly, DuPont, the maker of Coumadin disagrees. The following is a direct quote from http://www.coumadin.com/coumadin/cnsmindx.htm at their Internet site:
"Acceptable intervals for PT/INR determinations are normally within the range of one to four weeks after a stable dosage has been determined."
I believe this page is a copy of their package insert, which you should be able to obtain from your pharmacist if you want something tangible to wave at your doc. To actually answer your question, I have a blood test every month when the level is in the range the doc wants. If the level is off and the dosage is changed, I return more often. I think my INR is more stable than the average but I've had 44 tests recorded in the past 3 years. My PCP handles this testing for me but in the past 3 years, I've changed PCPs and cardiologists with all 4 recommending the same testing pattern. Best wishes, Gus R. email@example.com
Tom S, January 31, 1999 - Hi ,Mr. Teeter, Your problems with meds seems to make mine shrink to the level of insignificance. I was truly sorry to read of your recent hospital visits and troubles. Our prayers are with you.
When I started on Coumadin, three years ago this month, I was set up with the local hospital lab to have blood drawn and a PT test done once a month to monitor my "Coumadin level." Sometimes when the level is jumping around, I may have tests as much as three times in a single month, which is the case this month. My Coumadin dosage has increased from 5mg a day to 7.5mg to a mixed bag of 5mg and 7.5mg. In the past 6 months, the dosage was boosted to 10mg and I had my first (suspected) bad reaction to it just last week. I haven't got a clue what dosage your doc has you at but if he feels safe with you taking it and not being tested regularly, it must be rather low. Volunteering has saved me from the chat channels. I have thrown my hat in the volunteer ring using my publishing and computer "expertise" to design and lay out bulletins and newsletters for my wife's church - of which I am not a member. The whole church was thrilled with the "upgrade" and "professional" look in their new in-house publications and it gave me something to do that could be done at home rather than make a fool out of myself on CNN Chat lines.
Pat Latimer's January 31 reply to Ben B's January 29, 1999 - Hi Ben, After my earlier post, I actually found the booklet about "trying to go back to work" while continuing Social Security benefits. The booklet is called "Social Security - Working While Disabled - How We Can Help" and is SSA pub #05-10095. You can call 1-800-772-1213 weekdays to order a copy. I was quite surprised at what I read in the booklet and you have nothing to lose by ordering it, reading it and seeing if you could do a trial work period. Pat Latimer. firstname.lastname@example.org
Jennifer R's January 31 reply to Jamie's January 30, 1999 - Hello, Jamie, I didn't look up any info or anything like that. I just figured that after all I had been through, it was his turn to feel some pain for a change. He has never had anything done to him before. <G> He didn't want to at first but then changed his mind when I said don't touch me until you do. <G> I really didn't think it was worth my life to have sex. It is much quicker for the male to do it though. My sis had a tubal and she said it was worse then having the C-section. She was in much more pain, she said. They make an incision just under your belly button and dig for your tubes. She was very sore. My husband is fine right now. He is just a little swollen. It took about 10 minutes for them to do the procedure. Everybody else he knows has had it done also and they said no big deal. Hope this helps. Let him do it. You have been through enough, I am sure. Take care. Jennifer. JRobi87102@aol.com
Dawna R's January 31 reply to Ben B's January 29, 1999 - Hi Everyone, I haven't posted lately, but do try to read every day. I thought I would tell Ben my experience with the "trial work period." I called SSD and asked about it, spoke to 2 different workers, filled out the form I received and sent it back, and promptly went back to work part-time at my old job. Three weeks into this "trial period," I got a call from SSD telling me I had not been disabled long enough to participate. My worker told me that I have to be disabled for 12 months or longer, which she explained meant not from the date I became disabled but from the date SSD sent me my first check. After that period, I could apply. I did not lose my benefits because of this misinformation but I was lucky, I got everyones' name I spoke with and the dates and times. Good luck on re-entering the work force. I still have a few more weeks to wait to reapply but I have found some wonderful friends and an even better feeling doing some volunteer work. God bless you all! In peace and love, Dawna R. email@example.com
Doug K, January 31, 1999 - Hi all, First a thank you to Tom for sharing the symptoms of too much Coumadin. From what I have read, turning black and blue is a definite sign of a high amount of Coumadin in the system. Regina, I am relatively new to using Coumadin, since October of 1998. I take 8-10mg a day. They started me out checking a PT once a week, then every 2 weeks, and now once a month seems to be the normal schedule. From what I have read, once a month seems to be what most people have for a schedule. Like everything with medicine, seems like it depends on a person's situation. I would definitely ask your doctor why so long between PT checks. How much Coumadin do you take a day? Good luck to you both with your Coumadin dosages. Bye for now. firstname.lastname@example.org
Felix O's January 31 reply to Ben B's January 29, 1999 - Hi Ben, Thanks for your reply. Sometimes I also feel great and wish I could get a job. Other days I feel really lousy and sick. So I'm not so sure about my ability to hold a steady job anymore. A job would be a great therapy for me too, but I'm afraid of straining my heart. So I guess that voluntary work or self employment is the answer for us. Also, Social Security has that trial work period. This sounds great but then you think, am I pushing my luck? email@example.com
Bill D's January 31 reply to Regina R's January 30, 1999 - Hi Regina, My friend Ned, the guy who got a metal heart valve 12 years back, is on Coumadin for the rest of his life. He used to go in for pro times every week but now he just sends away his sample about every month. He's got his Coumadin dose down to a science and they rarely write him back to change it. Still, I've noticed doctors don't like to be caught in mistakes - the godhood mentality, I think! I'd consider asking another doctor if he doesn't come back soon and tell you to come in for a pro time or explain why he doesn't. All those rats aren't dying for nothing! <g> Bill. firstname.lastname@example.org
Tina, January 31, 1999 - Hello, I have questions about digoxin and the side effects. If anyone can fill me in, that would be great. I've heard that the risks outweigh the benefits. Is this true?
John Len, January 31, 1999 - Hi Jon, I took note on your question to Candy on January 29th about cholesterol lowering drugs and muscle and joint pain. I am currently takeing mevacor 30. Will these creaky old bones and muscles straighten out and fly right if I quit taking it? On a serious side, what connection do they have? John. email@example.com
Linda ?, January 31, 1999 - Hello to all, and I'm glad to have found you. This is all new to me and I must admit that I am very frightened. I've decided to try to understand all I can and do whatever it takes to get my once-active life back. If it isn't possible, then well, I guess it isn't. I'll read what you have to say and gain what insight I can from you. I'm Linda in Oregon, and I'm scared to death. firstname.lastname@example.org
Jon's January 31 reply to Linda ?'s January 31, 1999 - Hi Linda, You aren't scared to death. Take a look at the photos of me, Jack and Bill on our bios - then you'll be scared to death. <LOL> Do you have cardiomyopathy? CHF? Coronary artery disease (CAD)? Maybe we can help you find useful info if you give us a bit more to chew on. :-) Jon.
Jon's January 31 reply to John Len's January 31, 1999 - Hi John, Muscle cramps and muscle pain (myalgia) have been reported as side effects for some cholesterol lowering drugs, particularly statins. As for straightening you out, that would take more than dropping a med. <G> Hmmm, I must be feeling a bit better, eh?! Jon.
Jon, January 31, 1999 - Hi everyone, I want to thank you all for your continued prayers for Linz. Please keep them coming. She is slightly better and now holding her own (sigh of relief). Her meds therapy, though, actually costs more than mine! Jon.
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.