Roz' 1-15 reply to Joy R's 1-12 hang in there
Pat DeLeon 1-15 prayer request, last name question
Jon's 1-15 reply to Pat DeLeon's 1-15 last names
Donna's 1-15 reply to Phyllis A's 1-14 losing weight for real
Bill D's 1-15 reply to Gus R's 1-13 clot busters, clot busting drugs
Joy R's 1-15 reply to Bill D's 1-14 clot busters, clot busting drugs
Jana B's 1-15 reply to Joy R's 1-15 clot busters, clot busting drugs
John's 1-16 reply to Milt's 1-11 protein diet, exercise
Jon's 1-16 reply to John's 1-16 protein diet, exercise
Freddie B 1-16 positive transplant experience
Jon's 1-16 reply to Freddie B's 1-16 transplant experiences
John Len's 1-16 reply to Bill D's 1-15 Coumadin & Heparin, clot-busting drugs
Al K 1-16 glad to find you all
Tim P 1-17 glad to find you all
Jon 1-17 back today
Donna 1-17 high-protein diets & exercise
Gus R's 1-17 reply to Jana B's 1-15 Lovenox
Joe S' 1-17 reply to John's 1-16 protein diet
Ben B's 1-17 reply to Freddie B's 1-16 heart transplant criteria
Tom S 1-17 a thank you
Jana B's 1-17 reply to Freddie B's 1-16 choosing heart transplant
Karen K's 1-17 reply to Joe S' 1-17 protein diet & sodium
Taavi K 1-17 heart transplant decisions
LeeAnn D 1-18 heart transplant decisions
Marc Silver 1-18 blood thinners
Ben B's 1-19 reply to LeeAnn D's 1-18 doctors, heart transplant, qualifiers
Jon's 1-19 reply to Ben B's 1-19 qualifying for heart transplant
Ruthie A 1-19 heart transplant decisions
Sandi 1-19 intro, love the site & more
Jon 1-19 promoting this Web site
Jean C's 1-19 reply to Pat D's 1-15 prayer, last names, this site
Gaile 1-20 bisopropol questions
LeeAnn D's 1-20 reply to Ben B's 1-19 heart transplant evaluation
Pat D's 1-20 reply to Jean C's 1-19 praying for people here
Joyce 1-20 can't get to sleep - questions
Joe S' 1-20 reply to Marc Silver's 1-19 thin blood question
Margie F 1-20 heart transplants & attitudes
Jan 1-20 heart transplants & not making the list
Jill S 1-20 heart transplant decision making
Thelma C's 1-20 reply to Gaile's 1-20 Zebeta, beta-blocker therapy
Jon 1-21 twists & turns of Jon's pooter tales
Rieale 1-21 intro - age 22, have class 3 CHF
Jana B 1-21 transplant information
Jon's 1-21 reply to Jana B's 1-21 would love to place this info on site
Karen K 1-21 had a really scary episode
Jon's 1-21 reply to Karen K's 1-21 just keep on keeping on
Karen K 1-21 does anyone take 2 diuretics?
Kay 1-21 maintaining this site
Jon's 1-21 reply to Kay's 1-21 the old site chugs along, regardless
Sherrell G's 1-21 reply to Karen K's 1-21 you've done well, keep it up
Sherlene F 1-21 really feeling badly - prayer request
Ginger 1-22 my sister died
Karen K's 1-22 reply to Sherlene's 1-21 coping with fear
Karen Parker 1-22 intro, what is SSD? & more
Tom S' 1-22 reply to Karen K's 1-21 swimming in a sea of pee
Pat L's 1-22 reply to Karen K's 1-21 combined diuretics
Gus R's 1-22 reply to Karen Parker's 1-22 Social Security Disability
Carolyn B, 1-22 ACE inhibitor cough questions
Anita Cox 1-22 heart transplant choices
Bill D's 1-22 reply to Carolyn B's 1-22 ACE inhibitor info & more
Carolyn B's 1-23 reply to Bill D's 1-22 thx for info & more
Tom S' reply to Carolyn B's 1-23 coughs, meds, doctors & more
Jon's 1-23 reply to Tom S' 1-23 ACE inhibitor cough vs CHF cough
Pat L 1-23 heart transplant show coming up
Tom S' 1-24 reply to Jon's 1-23 ARB cough
Jon's 1-24 reply to Tom S' 1-24 dehydration & cough
Sandi 1-24 coping, some questions
Joyce's 1-24 reply to Jon's 1-23 CHF cough questions, this forum
Jon's 1-24 reply to Joyce's 1-24 CHF cough
Jon's 1-24 reply to Sandi's 1-24 swelling in abdomen
Jana B 1-24 questions about the cough & sleep patterns
Jon's 1-24 reply to Jana B's 1-24 ACE inhibitor cough
Jon 1-24 to Diane T
Shirley G's 1-24 reply to Pat L's 1-23 would anyone tape that show for me?
Diane P's 1-25 reply to Jon's 1-24 retaining fluid in abdomen
Jon's 1-25 reply to Diane P's 1-25 roller coaster weight not good
Bill D's 1-25 reply to Jon's 1-24 what was that, again?
Jon's 1-25 reply to Bill D's 1-25 I'm not real sure!
Tom S' 1-25 reply to Jon's 1-24 coughs, dehydration, surgery tapes
Jon's 1-25 reply to Tom S' 1-25 dehydration and chronic cough
Cindy M's 1-25 reply to Jana B's 1-24 can't sleep, up nights & more
Jon's 1-25 reply to Jana B's 1-24 losing sleep
Jana B's 1-25 reply to Jon's 1-24 ACE inhibitor cough
Paul S 1-25 heart transplant from one recipient's perspective
Tom S' 1-25 reply to Paul S' 1-25 thank you for your post
Rick M 1-25 taking control of our own fluid, diet & weight
Judy 1-25 how many heart beats per minute is good?
Phyllis A 1-25 what if you have edema and don't eat sodium?
Jon's 1-25 reply to Phyllis A's 1-25 diuretic options & inotropes
Jon 1-25 seeking volunteers for new project
Joe S' 1-26 reply to Rick M's 1-25 scratchy throats, dietary restrictions & flu
Rieale's 1-27 reply to Paul S' 1-25 great to have a real person talk about it
Donna Z's 1-27 reply to Judy's 1-25 slow heart rates
Pat L's 1-27 reply to Donna Z's 1-27 slow heart rates can be good
Paul S 1-28 life after transplant
Manuas 1-28 seek CHF doc in Ireland
Henry T 1-28 seek info on new drug
Jon's 1-28 reply to Henry T's 1-28 new drug info
Jose 1-28 amiodarone questions
Jon's 1-28 reply to Jose's 1-28 amiodarone side effects
Dorothy 1-28 seek alternative to amiodarone
Jon 1-28 new FAQ section up
Rick M's 1-28 reply to Jon's 1-28 like the new pages
Bill D 1-28 prescriptions spreadsheet offer
Claudia 1-29 my dog died
Jon's 1-29 reply to Claudia's 1-29 dogs are good friends
Judy S' 1-29 reply to Jose's 1-28 amiodarone side effects, Cordarone
Marion M 1-29 financial aid for buying meds
Shirley V's 1-29 reply to Claudia's 1-29 losing a dog to CHF
Debbie 1-29 improvement is possible
Thelma C 1-29 I'm going to try part-time work
Tom S' 1-30 reply to Marion M's 1-29 getting free drugs for CHF
Don G 1-30 new low sodium recipes available
Joy R 1-31 update, questions about mental fog
Bill D's 1-31 reply to Tom S' 1-30 what we don't know can cost us
Joyce 1-31 I'm very depressed right now
Jana B 1-31 to Joy R & Joyce
Paul S' 1-31 reply to Joyce's 1-31 depression
Jon 1-31 financial help with prescription drugs
Debbie 1-31 update & the depression monster
Doug K's 1-31 reply to Joyce's 1-31 coping with illness & depression
Roz' January 15 reply to Joy R's January 12, 2000 - Hi Joy, Another note just to let you know I often I think of you during the day, hoping things are a bit easier. As I wrote you, please don't try to correspond, just rest and keep a quiet mind. Much love, Roz. RWArriston@aol.com
Pat DeLeon, January 15, 2000 - Hi Jon and everyone, I'm not doing too great right now. My most serious problems (cardiomyopathy, diastolic dsyfunction, Pulmonary Hypertension and of course, CHF) were apparently all caused by my very difficult-to-control hypertension. Well, a couple of years ago, a cardiologist got it under control and my new cardiologist has been telling me I'm stable. Unfortunately, for the past couple of months my BP has been rising again periodically and it's now elevated pretty much all the time, which means my CHF has begun progressing again. The doctor is working diligently to bring it down but so far it isn't working. I hope you guys will remember me in your prayers.
I have another reason for posting. This may sound like a really dumb question but is there a reason why almost no one gives their last name? It seems especially limiting when praying for those in need, since there must be hundreds of thousands of Jacks, Johns, Pats and so on. I'm sure God can figure out which "Jack" we're praying for, but why put that extra burden on Him? I'm not being critical, just curious, so please don't anyone be mad at me for asking. God bless us all. Pat DeLeon. firstname.lastname@example.org
Jon's January 15 reply to Pat DeLeon's January 15, 2000 - Hiya Pat, I'm sorry to hear you're not doing well. Prayers are on their way!
There are some reasons for a lack of last names. One is my tendency to cut things down for page size and editing speed. That means I usually trim last names down to initials as I put up posts. Another reason is that I ask for a last initial at the top of this page so people may think that is the only proper way to send me their name.
Personal security is very much an issue. I very strongly urge those who know my full name and address not to ever give them out to anyone. You see, often we hear about unsavory characters on the Internet tempting children to give out contact info and then meeting those children in person with evil intent. I can tell you that this really does happen, because it almost happened to us. My daughter (when younger) was all set - complete with maps - to meet an Internet "friend" in an out of town location. When you discover something like that, you quit questioning the stories and start limiting who knows your real name. Jon.
Donna's January 15 reply to Phyllis A's January 14, 2000 - Hi Phyllis, I went on a 1400 calorie a day diet. You see, I saw a letter my transplant doctor wrote to my cardiologist saying she was concerned about my being overweight as far a transplant goes. That was all it took. I follow low sodium restriction (2000mg per day) and watch my fluid intake (2 liters per day). I walk a lot and really watch everything I put in my mouth. Yes, I get hungry, but I also know the more weight I lose the better it is for my heart. Just pick up a 5 pound bag of sugar and it will show you how much harder your body has to work carrying that around. The less you weigh, the better for your heart, plus I am a diabetic and it also helsp keep my blood sugar levels under control. I went to a dietician for help in getting a good balanced diet. email@example.com
Bill D's January 15 reply to Gus R's January 13, 2000 - Hi Bill, Thanks to you and Frank, I am learning a little this week. I'm still nuts though. :-) Like you, I thought Coumadin dissolved clots but in looking it up, found I was wrong. I then assumed that heparin was the clot dissolver. When I looked up heparin today before telling you all about it, I found I was wrong again.
I have now found 3 drugs that do dissolve clots, I think. They are Streptokinase, Urokinase, and tissue plasminogen activator (TPA). Now if Jon tells me they are listed on one of his Web pages, I'm going to go sit in the corner again. I spent a half hour looking up definitions for my last post and as he said, they were on his Medspeak Page, just a click away. Oh well, at least he didn't say Read The Manual! I'd guess he thought it though, wouldn't you? <g> Best wishes to all, Gus R. firstname.lastname@example.org
Jon's Note: Howdy-doo, Actually, you have managed to surpass the scope of my humble Web site, so take the ball and run! <lol>
Joy R's January 15 reply to Bill D's January 14, 2000 - Hi Bill, As I remember from my nursing, Coumadin is taken to keep the blood thin which will help prevent clots. Some arrhythmias can cause clots, which is why so many people are on it, to prevent them. If you have clots, it usually requires a hospitalization with an IV drug to dissolve them. There is another drug which you can take as a shot in the tissue around your stomach, but I can't remember the name. I should remember; in my time, I have given many of those shots but guess out of practice, out of mind. By the way, it's great to see you posting again. Joy. email@example.com
Jana B's January 15 reply to Joy R's January 15, 2000 - Hi, The shot you give yourself is called Lovenox. After I had my stroke I was on Heparin, Coumadin and Lovenox injections. I didn't realize though, that none of these would dissolve the clot. What did they even give them to me for? Jbyers4u@aol.com
John's January 16 reply to Milt's January 11, 2000 - Hi Friends, I have been on a low carbohydrate diet (Mmats, cheesees, etc...) for the last year and have found my diabetes has all but disappeared. If your doc is agreeable, please consider this. My doctor prescribed one hour of exercise 3 times a day. After I called him a quack 2 or 3 times, I tried it. It seems to help my attitude and my strength, as long as it doesn't kill me while I'm on the bike. My doc is one of the cutting-edge doctors at the Texas Heart Institute, Heart Failure Clinic of St. Lukes Hospital in Houston, Texas. He says his information tells him this will help control weight and strengthen the heart. JBott@aol.com
Jon's January 16 reply to John's January 16, 2000 - Hi John, I am sure your doctor suggested these things for you specifically based on a personal exam and knowledge of your health history. I caution everyone reading this not to attempt this exercise plan without having a long talk about it with your CHF specialist first! My EF is 40% and my own daily exercise plan is not even close to this in length. It would kill me! <lol>
I rarely speak up about diets, but if you want to try the protein diet, please get some educated advice about it. I have no problems with that diet, but many people think they are doing it right when in fact they are not, and only cause themselves to get fat. Jon.
Freddie B, January 16, 2000 - Hi to everyone, especially Jon, It has been some time since I posted. I don't know why, I just haven't. I am one of those waiting for a heart transplant. I was placed on the list January of 1998. I was supplied with all the information that anyone who may need a transplant should be given. I was told from the start that a transplant is a last resort treatment when medication no longer works. I was also told that at times a mechanical device is used as bridge to transplant. I guess I was fortunate enough to be sent to the right transplant center. I even had a session with the surgeon that does the transplant. None of the doctors held back any information from me and told me like it is.
Transplant was not even mentioned to me when I was first diagnosed with CHF. As a matter of fact, I worked a full-time job for 5 years after getting sick. At the end of March, it will be 9 years since I developed CHF. That is not bad for someone that wasn't expected to leave the hospital. I give thanks to God for seeing to it that I have had the right doctors at the right time. My point is that not all doctors push for a transplant as soon as you develop CHF. The highest my EF has been since 1991 is 35%. It is now below 20%, but how far below I don't know. I do know that my last right heart cath, done at the end of November showed my output at 3.5L per min. The norm is 4-8L per min. My meds were adjusted to see if it would help. I don't think it did. Anyway, enough about me.
Anyone that has my e-mail address needs to change it to the new one: firstname.lastname@example.org. May God bless each and every one of you and answer all of your prayers. Freddie B. email@example.com
Jon's January 16 reply to Freddie B's January 16, 2000 - Hiya Freddie, It's good to hear from you! It's also nice to hear that some doctors are aware that transplant is not an option that always needs to be placed in the patient's lap before all others. If you get a notion to to do so, keeping a diary of your experience all the way through your transplant would allow you to share the experience afterward if you chose to, or even to give it as you go. Something to think about. Jon.
John Len's January 16 reply to Bill D's January 15, 2000 - Hi Bill, I guess you caught a lot of us by suprise.Yours truly was also under the opinion that Coumadin and especially Heparin were clot-busters. I guess the last time I needed the real MaCoys, the HMO said, "Too expensive, try Heparin." Oh well. John. firstname.lastname@example.org
Al K, January 16, 2000 - Hi, I'm glad to know of so many individuals who are coping with this disease. Since I was first diagnosed, I became very depressed. You see, I have a newborn and a 9 year old girl. I would hate to leave them alone. Thank yo for all the words of encouragement. Al. email@example.com
Tim P, January 17, 2000 - Hi, This a find for me! I'm 42 and have a list of heart problems. Up till now I had no outside contacts that I knew could truly understand what was going on. All my problems were a total suprise! First I was diagnosed with unstable angina, Three caths later I'm in emergency surgery due to a blocked artery rupturing. I'm now in class 3 CHF, with CAD, CM and cardiomegaly. I went through denial and severe depression; I never had any problems before February of 1998, and I was only 40. Now I know I'm not alone and that age isn't really a factor. I just started receiving SSD and as many of you know, that's a big step and a relief. I'd like to hear from someone or many of you. It can only help to strengthen one's will and determination to have support from others with common problems to share. Thanks Jon, and you supporters. Tim P. TDPaschall@ftc-i.net
Jon, January 17, 2000 - Hi everyone, Yesterday was a heart failure day for me, so I just rested. At least, that's what I call my "bad" days. I feel better today but doubt that I will make it to chat. However, there will be a chat session today at 3:30 PM Central Standard Time. Please go and enjoy yourselves! Don't forget that you can set a time whenever you wish to meet others at the chat room. It's free for everyone here to use. Jon.
Donna, January 17, 2000 - Hello Jon and all, I'd like to put my 2¢ in about high protein diets. I think they are bad for you and can cause other problems we don't need, like putting a lot of extra stress on your kidneys. I do watch my carbohydrates but I do that because I am a diabetic and it's not the sugar in foods that raise the blood sugar, but carb'. I have gone to a dietician for help with my diet. As far as exercise, I asked the doctor about exercise and she said for right now, walking is best until I have a new stress test and echo. She does not want me walking even on my treadmill until she sees my latest test results. So although exercise is good for us, please check with your doctor before doing any new exercise. firstname.lastname@example.org
Gus R's January 17 reply to Jana B's January 15, 2000 - Hi Jana, I looked up the monograph for Lovenox at Medscape's site and found: "Uses - This medication is a 'blood thinner' which helps prevent formation of blood clots. It is used after certain surgeries. This drug may also be used to treat blood clots."
It sounds to me like Lovenox is a cross between a thinner and a dissolver. It might not have been the best drug for you but probably wasn't too far off. Or I could be wrong again. Note to Jon: I think I've caught you in an error. I looked up humble (as in "my humble Web site") in a thesaurus and found 45 synonyms for it, none of which apply. Several of the antonyms such as grand, lofty, and superior, seem more appropriate. Best wishes to all, Gus R. email@example.com
Jon's Note: Today, I would have picked one word to describe it - "tired" <g>
Joe S' January 17 reply to John's January 16, 2000 - Hi John, Be careful of this diet. I am convinced this is the one that put me over the edge. Naturally, dumb ol' me wasn't under a doctor's care at the time, but was taking advice from a friend. He told me I could eat all the bacon, sausage, hot dogs and cheeses I wanted because they had no carbohydrates. Since I didn't know I had CHF at the time, I saw no harm in this and it nearly killed me. Joe S. firstname.lastname@example.org
Ben B's January 17 reply to Freddie B's January 16, 2000 - Hi, I thought I might like to get in this transplant discussion. It has been my feeling that doctors push transplants because transplants are more about the doctor than they are about the patient. It is the attitude of, "Look what a miracle worker I am." This is the same attitude that leads some doctors to think they can actually create life in a test tube, when all they can do is put together the things God has given them. It also seems that sometimes family members are more anxious for people to get transplants than the people themselves. I think they sometimes think, "This will put them back to their good old selves." However, I am aware that in many cases transplant is the only resort. I was curious as to what exactly changed in your condition that led the doctors to believe you needed a transplant after 9 years on medicines? I can't seem to understand what criteria doctors use to give them out, since they promise them to everybody, but only do about 2000 a year. email@example.com
Tom S, January 17, 2000 - Hi, It's been a while since I have actually "toured" Jon's Place in its entirety and I came away with a couple of impressions. The first was just how many folks from North and South Carolina, my neighbors so to speak, "are in the same boat." There are quite a few of us. The second impression was that there has been a great deal of time and dedication devoted to making this site the best on the Web. I don't think a major medical corporation could afford, or would put 1/10 the effort into maintaining a Web site of this nature. All I can say is thank you Jon for your dedication to your fellow human beings. I just want you to know it is greatly appreciated. If you don't think so just remember the day or two that Geocities "lost" the site for a few hours. Makes one appreciate just how much we really have here. firstname.lastname@example.org
Jana B's January 17 reply to Freddie B's January 16, 2000 - Hi, I was given all the literature about transplants and had to sign a paper saying that transplant was the "last resort" and there is "no other alternative." It also said I had a 90% chance of not living 6 months without the transplant. I had only been on meds 3 months when I signed this. I didn't feel bad enough for it then and I still don't now. I even questioned the doctor on how he could "waste" a heart on me. He said my tests results or as he called them "numbers" were bad enough to warrant a transplant. My regular doctor here in town said I had more like a 50/50 chance of not living 6 months. That time has come and gone and I am better, not worse. I am all for transplants, if a person needs it. I just don't think I do at this point. Jana. JByers4u@aol.com
Karen K's January 17 reply to Joe S' January 17, 2000 - Hi, I just wanted to point out that the foods you list are all very high in sodium. They are processed foods and are high on the list of things those of us with CHF should be careful of. Karen K. email@example.com
Taavi K, January 17, 2000 - Hi, The way my transplant cardiologist put it to me on the last day of my evaluation was, "I'm going to lay out all of the test results for you and I can make a recommendation, but the decision has to be yours." Incidentally, sometimes the patient is against it and the family is for it, but other times it's the other way around and the family is dead set against it (if I may use that expression). Rarely is everyone involved of the same opinion. This can, and has, torn families apart. firstname.lastname@example.org
LeeAnn D, January 18, 2000 - Hi everyone, I can't keep quiet any longer and have to put in my opinion about the transplant issue! I agree with most people here that waiting is much better but in defense of these doctors, please remember that in asymptomatic people whose numbers are bad, it is a very fine line. They look and feel fine but can deteriorate rapidly. Life magazine had a good article on transplants a few months ago and followed a few people waiting in the hospital. Some were healthy and vibrant at the beginning of their wait to find a match. Many deteriorated to the point that they had waited too long and their organs had not received enough circulation to sustain themselves and their chances of living though a transplant were much, much lower than if they'd gotten them when they were healthy and vibrant. I still think most people should be on meds for at least a year. I had a very low EF for over a year before I improved, and am very glad of my decision to wait after my transplant evaluation. LeeAnn in Phoenix, age 39, DCM, ICD, EF 40. email@example.com
Marc Silver, January 18, 2000 - Hi everyone, Jon has asked me to comment on several posts regarding "blood thinners". There are 4 different types of medications that affect how the blood clots but none, repeat none, actually dissolve the clot; they simply allow the body to do that on its own while helping prevent new clots from forming. Generally the 4 types are: warfarin (Coumadin), heparin, low-molecular weight heparin (Lovenox) and the antiplatelet drugs (aspirin and Plavix). All 4 work differently, some by depleting vitamin K, which is important for blood clotting, others by making the platelets less sticky, and so on. Usually heparin is only given in the hospital since it is an IV drug. The others can be used out-patient.
There are a variety of uses of these drugs in heart failure such as preventing clots (and hence strokes) for patients whose heart rhythm is irregular, such as atrial fibrillation. Commonly with very dilated hearts (low EF), we think it is prudent to use anticoagulants to prevent clots from forming however, we are less sure about this today than ever! Also, there is some concern that aspirin may impair the effectiveness of ACE inhibitors so there is a trial going on now - the WATCH trial - to answer some of these questions. I hope this helps. Marc Silver, MD., author of Success with Heart Failure.
Ben B's January 19 reply to LeeAnn D's January 18, 2000 - Hi LeeAnn, Perhaps I should temper my remarks about doctors, as I am well aware I would certainly not be around if it were not for mine. Actually, my doctor has never mentioned transplant to me. Most of my emotion over this issue comes from my friend's experience. She went in for arm pain, was told she would probably need a transplant at some time by a doctor who had just listened to her heart and done a chest x-ray. It just goes to show that there are good and bad in all professions.
My main question is, what numbers do they use? EF doesn't seem to be reliable, as we are counseled to think about "how we feel." Then I find out that people who feel vibrant and healthy are going in for transplants. Plus, I think about half the people posting had very low EF's (10% or less) when diagnosed. Vo2max may be more reliable but at the YMCA they give this test, and people with lower readings than 20 are called "in fair physical condition." I wonder if right heart cath is the most important test. I am just curious as to how they evaluate a person for transplant, as I haven't been for an evaluation myself. firstname.lastname@example.org
Jon's January 19 reply to Ben B's January 18, 2000 - Hi Ben, I first want to say that I am a bit slower than usual and will be so for awhile. It's me getting this new pooter geared up to do things the Jon way - not the normal way in most cases! <g> Also, this keyboard has keys in different places and my poor old fingers seem stuck in their old ways! ;-)
I have not been evaluated for transplant, although I have had most of the same tests at some time or other. I have no way to know but tend to question whether the YMCA is giving proper Vo2max tests, since the equipment is enormously expensive and giving the test requires specially trained techs (pulmonology and cardiovascular training) and the presence of a real nurse. The results need to be interpreted by a doctor to get accurate results. Then, there's the liability issue; they'd be up a creek if they gave a Vo2max test to someone with a bad heart who died during the procedure, with no doctor on hand. I have no problem with a YMCA doing Vo2max tests - it's good idea if they can afford it - I just wonder if it's precisely the same test we have at the hospital.
I have heard varying "standards" from different people about what constitutes a normal Vo2max result for any given gender/age group. All these people were health care professionals dealing with the test on a regular basis (at least 5 times a month). Therefore, I hesitate to say what a normal reading is. I do know that once you dip below 14%, you "qualify" for a transplant. However, it is only one factor among many. I have a Vo2max of 13.5% and am not considering a transplant at this time and have no reason to do so.
As I understand it, many factors go into giving a green light for heart transplant. Echo or MUGA, cath, Vo2max, right heart cath, stress test results, overall health measures, lung function testing, arterial blood gases and blood tests all play a part. Attitude, health history, compliance, family health history, tendency to addiction, or extreme depression or suicidal tendencies, support structure in place (family, friends, church) and much more factor into the decision. It is not just your need for a heart to stay alive. This is because of the shortage of donor organs. If you're not likely to make the lifestyle changes and comply with meds schedules and dietary restrictions to increase chances of not rejecting or harming the organ, you're out.
My guess is this: An echo less than 30%, Vo2max less than 14%, poor 6-minute walk test performance, decompensated CHF despite maximum drug therapy (having symptoms all the time despite drugs) and functional heart class of 3-4 all contribute to a green light. Overall health may be next in importance, alongside disqaulifiers such as too severe additional illnesses, unacceptable pulmonary pressures, etc,... That's my guess. If anyone wants to chime in, feel free. I'm just guessing. <g> Jon.
Ruthie A, January 19, 2000 - Hi to all, This discussion about transplants has been very interesting to me since my mom is in end-stage CHF and in no shape to receive a new heart even if there was one available. When I was first accepted into my heart failure clinic, I met with a social worker. Among the many questions she asked me was, what my feelings were concerning a heart transplant. I thought that was interesting since I hadn't even seen the doctor yet and had no idea what shape I was in, but here was this question right out in front of me needing to be addressed in my own mind.
I have chosen to not go through a transplant. As I have said in past discussions, my sensitivity to medications actually stops me from wanting to take all the meds required following transplantation. So my reticence to transplant is not because of a doctor's pressure or my family's desire to see me live longer. It is purely a selfish one of not wanting to exchange one set of problems for another. I have made it very clear to my family that this is strictly my decision alone to make and they are not to interfere. I have promised to rethink my decision should the situation arise that I would need a transplant or die, but I truly believe my answer will be the same as now.
My point is that there are many reasons why people choose or do not choose transplantation, but it is a decision that needs to be carefully and prayerfully made. It should never be made in haste because someone thinks it's a good idea, or because a loved one is having a hard time facing your eventual death. Take your time; you most likely won't die tomorrow. Ruthie A. email@example.com
Sandi, January 19, 2000 - Hi, I am so glad that I was told about this site! Finally, people who know what I am going through. I don't know if I can be a help to others but I can pray for all of us. I had my first MI at 38, the second at 39 that required a triple bypass and 4 years of strict diet and exercise. I was never overweight but still trimmed down and felt great. Then in May of 1999 omn Mothers' Day I had another one and had a stent put in. I went home 6 days later but only for 7 hours. I was then rushed back to be told I was in CHF. I was flown to Gainsville for a heart transplant evaluation. I was told I would not go home without a new heart. I passed (or failed) all required tests. Then a doctor talked to me about trying to maintain my heart with meds. Needless to say, at the time I was terrified so I jumped at the chance. I have tried Coreg but had awful side affects from it. The other meds seem to be helping. I have even gone back to limited work one day a week. I have good days and bad days, but on the bad ones, I try to remember the good ones.
Transplant is a very scary thought to me but then so is dying. I have 5 grandchildren, 3 children, and a wonderful but scared husband. I want to be here with them as long as possible. My question for anyone out there is, "Why don't more doctors recomend this Web site to their patients? It is the best medicine I have had yet! You are all in my prayers and thoughts and here is wishing everyone a good day. TDPaschall@ftc-i.net
Jon, January 19, 2000 - To answer Sandi's question about this site's "availability," I honestly do not have time to promote this site anymore. If anyone wants to try to convince professional sites or search engines to list this site as a link, please feel free to do so. The proper Url to use is first and foremost:
http://www.chfpatients.com/index.html, and then any pages you like best. <g> Just be sure to use the full and correct Url for whatever pages you suggest. Feel free to mention that the site was the most suggested site for heart failure patients in Dr. Marc Silvers' best selling book, "Success With Heart Failure." That often gets the professional Webmasters' attention. It makes up for the geocities address, which turns off many reputable places like the American Heart Association, who think that only sites with their own domain name ($$$) are worthy to be listed. Jon.
Jean C's January 19 reply to Pat D's January 15, 2000 - Hi Jon, I am so sorry to hear you had a "heart failure" day. You are definitely on my prayer list. I can understand Pat's concern about last names but I think that God also reads The Beat Goes On (He keeps you and The Beat so encouraging) and knows who we are. The ones who have needs that I specifically want to pray for I write on a list which I keep handy to my workplaces at home (the kitchen, by my sewing machine, etc) I mention The Beat Goes On at the start of my prayers and know that God knows exactly what I'm talking about. firstname.lastname@example.org
Gaile, January 20, 2000 - Hi, I went to the doc today and he wants to switch me from Coreg (50mg) to Zebeta (bisoprolol fumarate 5mg). I have been on Coreg for almost a year and my ejection fraction has significantly improved, but I continue to suffer fatigue and depression. My doctor said that bisoprolol is a "fourth generation" beta-blocker; I'm not sure what that means! He believes I will receive the same benefits as Coreg without the negative side effects. I searched the med site here and found only brief mention of bisoprolol. When I did a search on the Net, I found very little. Is anyone here at Jon's Place using bisoprolol instead of Coreg? Can anyone give me some info about it? Thanks! email@example.com
LeeAnn D's January 20 reply to Ben B's January 19, 2000 - Hi Ben, In addition to (and including) the tests Jon covered, there are a ton of tests that are meant to disqualify you. A CT scan to check for any possibility of cancer - which immediately disqualifies you, a lengthy written test and meeting with a shrink who even gave me a memory test, dental x-rays, not to mention they took all my blood, then put in an IV so they could take some more! I had to fast for 36 hours and pee into a huge bag for 3 days! The tests at the University of Arizona in Tucson lasted 3-4 days of solid testing. Your echo, MUGS, x-rays, Vo2 max, left and right heart cath, blood gases, etc, are the tests you need done ahead of time to qualify for the evaluation. They may do some tests over. My EKG was so bad they did it 3 times because they thought they were making a mistake! They also did a lot of lung capacity type stuff. This was over a year ago, so I'm probably forgetting something. Anyway, from what I could tell, if you doubted it much or didn't want it, they absolutely did not want to give you one. I think a lot of regular cardiologists and hospital/ER docs throw around the transplant word a lot. When you get to the actual transplant center, they don't want to make a mistake. LeeAnn in Phoenix. firstname.lastname@example.org
Pat D's January 20 reply to Jean C's January 19, 2000 - Hi, Jean. Thanks for responding. What a lovely idea, mentioning "The Beat Goes On" at the beginning of your prayer. You're right, of course, God knows who we all are. I think I'll try your way. Pat. email@example.com
Joyce, January 20, 2000 - Hi everyone, Well, here it is 4:20 AM and again I can't sleep. I haven't really had a bad night since before Christmas. Boy, did I pray that night. I thought for sure I was going to die. CHF is new to me and my doctor hasn't been as much help as this site has been, so I thank God for all of you. Not only does this place give me a chance to know all the updated info but it also gives me a place to talk.
My biggest question is, why is it only at night that I can't sleep, but as soon as dawn breaks, I could sleep all day? I don't allow myself to sleep then since I am trying to keep a normal schedule. I don't understand it. Oh well, I guess I'll try to get back to sleep now, but thank you all for being here. Joyce. firstname.lastname@example.org
Sharon J W's January 20 reply to Ruthie A's January 19, 2000 - Dear Ruthie, I can't justify a transplant for myself either, but you expressed "our" reasons so very well that I won't attempt to do so. I can't tell you how much I admire people who choose it though; they have my blessing and my prayers. I came to grips with death in 1994 and am prepared. My loving thoughts go to you and your mother. It's so much harder watching a loved one suffer than to go through it yourself. I learned that in 1994 also. Warm thoughts to everyone. email@example.com
Joe S' January 20 reply to Marc Silver's January 19, 2000 - Hi, All of my life I have been told by numerous doctors that I would never have a stroke because my blood was so thin. My maternal grandfather was homopheliac and my mother bled to death internally, both long stories. My hands are quite blotchy and I bleed easily. Last week I went to a new cardiologist where I have now moved and he put me on aspirin once a day. I showed him my hands and he didn't seem to care. Any comments would be appreciated. Joe S. Jes@stevensonlighting.com
Jon's note: I can't be sure that Dr. Silver will reply to any posts here. I asked him to jump in on a specific thread. With his schedule, I would be surprised if he has the time to read our forum very often
Margie F, January 20, 2000 - Hi, I would like to get in on this discussion of heart transplants. I'm sorry I can't give the numbers but the information Jon gave was right on the button as far as the tests they subjected me to. I have my checkup at John Hopkins' tomorrow so I will ask what the numbers are. I do know that the right side heart cath pressure numbers have to be low for you to be considered. A lot of the body scans, blood test and urine tests have to be good because they don't want to give a heart to someone who isn't healthy enough to withstand the new problems that they will have after the transplant.
For instance, if someone already had cancer, the antirejection drugs would make it worse because your resistance is gone. I also had esophogeal echo and the Vo2max test. They had a different name for it. I've had problems all my life but the last 7 years, they've gotten worse. So we were at the end of the line with drug options. To look at me, you'd think I was in perfect health. I'm not huffing and puffing but because I've kept myself on a very strict diet and am using 160mg of Lasix, I feel alright.
Another criteria is that they want someone who will follow their medical intructions. If I was to walk faster than a slow stroll, I would start being out of breath. I am very hopeful that I will be able to stay out of the hospital for my wait for a new heart. I have a very supportive family, which is also one criteria they look for. Most of all, I want to live; longer than a year or two. This is my chance, my hope for the future. I want to see more grandchildren born and the ones I have grow up. I know that God in his wisdom decides all this but I also have faith. Well, I've rambled on enough. Everyone take care. Margie. MFisher238@aol.com
Jan, January 20, 2000 - Hi, In response to the discussion on heart transplant, it was March of 1999 that my electrophysiologist, after giving me an MVo2 stress test, recommended I be evaluated by a transplant team for heart and lung transplant. I consented to talk with the doctor, knowing I could always say no later if I changed my mind. I was not prepared for his answer. I was rejected for the list. It was not because I wasn't a potential for a future situation where I would need a new heart and lungs for survival. It was because of the condition of my "innards." You see, I have dilated cardiomyopathy and pulmonary restrictive/obstructive disease brought about by the aggresive radiation and chemotherapy treatments I had for my inoperable cancer back in the late 1970s. It seems I have so much scarring inside my chest that I would be too high a surgical risk and that I would have nothing of quality for them to connect the new heart and lungs to, and they might not be able to remove them because I'm like, stuck together spaghetti or cement inside my chest. I am doing pretty well emotionally and physically at this time. Praise be to Jesus Christ! I am 55 and receiving SSD. I would like to hear from anyone on this site who has a similar history. My prayers for you, Jon, and hope and pray you are feeling better. Thank you for all the time and energy you put into this site and us. firstname.lastname@example.org
Jill S, January 20, 2000 - Hi, Jumping in late on the transplant discussion, my internist and cardiologist originally wanted me to see the transplant people, after my CHF had stabilized. They both said that while they didn't think I needed one right away, they wanted me to get to know the team in case my condition went downhill rapidly. Of course my HMO said, instead of going to the local program I would have to go to a San Francisco hospital (where Will had his done), which is about 100 miles away from where I live. The San Francisco hospital wanted me to undergo 2-3 days of testing, repeat the cath which had just been done, etc. Months of trying to get my HMO to let me go locally were fruitless, including a request from me to my new state senator, whom I was told was really only interested in education issues. So, I decided not to go through with it. I had no compelling medical emergency and didn't want to undergo more testing.
In the meantime I have switched HMOs and could now have an evaluation done here, but that was 2½ years ago and nobody has mentioned transplant for awhile. I am trying very hard to just maintain; I've given up on getting better. I see it as a last effort to stay alive and I seriously doubt that given the extreme shortage of organs and the new transplant policies, that people who aren't at death's door will receive new hearts. I think you are looking at a 6-18 month hospitalization. I'm hoping for gene therapy and improved HeartMates myself. Just my thoughts, Jill, DCM, EF 25. email@example.com
Thelma C's January 20 reply to Gaile's January 20, 2000 - Dear Gaile, I was diagnosed in July of 1999 and was started on Zebeta after much discussion back and forth amongst the docs. They seemed to think that the Coreg would make me feel a lot worse and my situation (EF 30%, Vo2max 12) wasn't so critical as to start Coreg at the time. Also, I felt the cardiologist just wanted to start using the "new" drug. I use only ½ pill (2.5mg) a day, and it seems to have helped greatly in my runs of PVCs.
I do feel better and have improved my Vo2 max up to 21. My EF is unchanged but my new cardiologist (I moved) is very happy with my progress. He also tells me that we don't need to keep increasing the dose like with Coreg. As far as it being a fourth generation beta-blocker, I guess that just means it is new and "improved." It is much more selective in its action on the heart and does not have as strong an affect on the lungs as other beta-blockers; at least that's what I was told. As far as side effects, I have started on so many new meds since being diagnosed that I'm not sure what to attribute to the Zebeta. Best of luck to you on your med change. Thelma. Tcull@prodigy.net
Jon, January 21, 2000 - Hi everyone, As usual, taking a new pooter under my wing is the kiss of death! <lol> My "new" hard drive is getting ready to die a permanent death according to my diagnostics software. If I go offline at some point, please be patient. When this sucker croaks, it will take me a few days to get the files and programs I need back on the old system, and fight my daughter for access! <g> One way or another, I'll keep this old Web site going, though. Eventually, I'll have enough pennies saved to get it fixed and move back to the new system again. One thing I am is persistent! Jon.
Rieale, January 21, 2000 - Hello, I just wanted to thank Jon for providing a site such as this. I'm 22 years old and during my stay last week in the cardiac unit, I was diagnosed with class 3 CHF. Obviously I'm grappling with all the information, meds and decisions. I go to the Cleveland Clinic for further evaluation on February 10. Anyway, it is nice to see how supportive you all are all and I hope to get to know many of you better in the future. Rieale@aol.com
Jana B, January 21, 2000 - Hi, I was required to bring a support person with me to UCLA for my transplant elavuation. My HMO also sent me out of town, on a 2½ hour drive. This person had to watch a video; it was one of the criteria. You have to be under a certain weight, 180 for men, I think. I had to meet with social workers, psychologists, and the surgeons. If anyone is truly interested, I have the manual they gave me that tells you step-by-step what happens from pre-op to post-op. It even explains that you will wear a mask when walking through the hospital to get to your appointments, I mean lots of details here. Jana. Jbyers4u@aol.com
Jon's January 21 reply to Jana B's January 21, 2000 - Hi Jana, I am definitely interested, especially since none of our heart transplant recipients have had time to send me any part of their story yet. That leaves me with no new info to start a new transplant section with. Let me know how I can receive this information, and I'll see to it that a good chunk of it makes it to the Web site one way or another. Jon.
Karen K, January 21, 2000 - Hi All, Well, 9 years after being diagnosed with cardiomyopathy and having at that time been in CHF, I have had my first episode of hospitalization. On Monday night, I had my husband call 911. I couldn't breathe. It was quite terrifying. In the ER they diagnosed me with CHF and put me in ICU. I was in the ICU until Wednesday and was then released onto the floor. I came home yesterday with new meds and no restrictions to what I had been doing.
I am quite confused. On Monday night I weighed myself prior to trying to go to sleep, telling myself I was stressed and that my shortness of breath was in my head. On Monday night I weighed 123.5, which is on the low end of what I've weighed for the past 9 years. This morning I weighed 114.5, which as far as I'm concerned is underweight for my 5' 5" frame. The doctors are still unsure of what actually happened since I "turned around" so quickly. I had both an echo and MUGA done while I was in the hospital. Actually they did part of a second echo, since one of the doctors thought he saw vegetation on my heart valve. This translates as 4-6 weeks of IV antibiotics. When I was admitted to the hospital, both my white blood count and temperature were above normal but by Wednesday these had normalized. The MUGA showed an EF of 33%. My last MUGA was in September and measured EF at 34% so my doctor says no damage as a result of this incident.
I was taken off Lasix about 18 months ago and now have been put on 50mg of spironolactone in the morning. I am still to take my 25mg Capoten 3 times a day. In addition I am now taking Lanoxin. The doctor reduced my Coreg dosage to 12.5mg twice a day but said he will probably increase the dose again. I see him next Monday. All they can say is that my weight probably slowly increased and I was retaining fluids but didn't realize it. Now I'm truly confused and emotionally a bit of a mess. I thought I had dealt with all of the issues so many years ago when I was first diagnosed. Granted I had made lifestyle changes but learned to live with them and felt I finally had a life I could live with (no pun intended).
Right now I'm in fear of doing anything that might tip the bucket again. I need encouragement from you folks right now. Karen K. firstname.lastname@example.org
Jon's January 21 reply to Karen K's January 21, 2000 - Hi Karen, Not being able to breathe is scary, as so many of us know. We do know how you feel. I say go ahead and live as you have lived, without waiting for another "episode" to fall on you. It either will or it won't. Just use common sense and the info you have learned about CHF to be a smart CHFer. That's all you can do.
You have to figure that you made it 9 years with this stuff and only had one really scary episode. While there are no guarantees you'll go another 9 years before the next episode, you just might - no guarantees that you won't either. ;-) Strangely enough, an old Led Zeppelin song lyric echoes through my head as I write this, "I just keep on running yeah, with a faith in the Lord above." Jon.
Karen K, January 21, 2000 - Hi, I have a question for you folks. My doctor put me on spironolactone, two 25mg tablets in the morning. Last night when I went to bed, I weighed 116.5lbs. This morning when I got up, I weighed 114.5. I presently weight 118lbs. I spoke with my doctor's nurse earlier today and she said the spironolactone doesn't respond the same way as Lasix and that I should just keep track of my morning weight over the next few days. She has now talked with the doctor and he has added Lasix in addition to the spironolactone. Have any of you experienced taking diuretics at the same time? Karen. email@example.com
Kay, January 21, 2000 - Hi Jon, We all seem to agree what a wonderful site you have and also agree on how much help it has been to us and continues to be. I have no idea how the system works or what the cost burden is. Apparently it comes out of your pocket. Would it be possible to have a donation to the cause address posted along with the site? People could give if they choose to and if not able, that would be ok too. Hopefully that would help to keep this wonderful site afloat. Love and prayers, Kay. firstname.lastname@example.org
Jon's January 21 reply to Kay's January 21, 2000 - Hi Kay, This whole site only costs me $5 a month in server space as long as I keep it below a certain size, which I have always managed to do. The software I use to create and maintain the site is all freeware. This does place some restrictions on me since I don't have all the bells and whistles. Then again, it has taught me a lot about the Web, HTML, FTP, and other facets of Web authoring I might never have otherwise learned. I would pay for an ISP even if I had no Website of my own.
I did need a lot of software for this new system to keep everything legal on our (now 2) home systems. Donations from readers covered that and I was overwhelmed at the generosity of readers here - not to mention that of the reader who gave me this pooter in the first place! The old-timers also remember donating money to upgrade the hard drive on our old system, which literally kept the site going. So I do accept donations but I don't want to make a habit of it. The site is not meant to generate money for me, plus I have to pay taxes on gifts after a certain point.
If anyone wants to contribute to the "Jon is running another pooter into the dust" fund, it's ok with me <g> but I want to be sure you understand that donations or not, this time the site is not at stake. It will keep running somehow - I do not "expect" donations. Since money is tight around here lately, I will send people my address if they e-mail me and ask for it. I won't put my address on the site, though. If I give you my address, I really do expect it to go no further, not even to other readers, please. Jon.
Sherrell G's January 21 reply to Karen K's January 21, 2000 - Hi Karen, Over these last couple of years knowing you through this forum, you have always impressed me as being one of the bunch that stays on top of her illness quite well. Your episode just shows us that none of us know what tomorrow holds, so we must do the best we can each day and hope that it what will keep our illnesses under control. You definitely have been doing something right to experience as little symptoms as you have for so long. Hang in there! You're in my thoughts. email@example.com
Sherlene F, January 21, 2000 - Hi everyone, I haven't posted in a long time, although I try to keep up. I had a very scary episode myself last week. For several weeks prior to this I had been having trouble breathing. My middle would swell up so badly that I had almost given up on eating. I thought it was my stomach, not fluid retention. Anyway, my husband had to call 911 for me and they got 3½ liters of fluid right away. The doctors put me on Lanoxin and Aldactone, one asprin a day, 10mg of Vasotec and 40mg of Lasix. I'm also diabetic, which makes everything worse.
Anyway, I'm better now but I still feel lousy. I sleep most of the day away. Every time I get comfortable, I go to sleep. I don't have the energy to do anything. I'm still trying to get approved for SSD and am awaiting a hearing. All this seems so unfair. If I could work, I certainly would be. I hate sitting here all day, feeling like I've got a bad case of the flu. Everyone please keep me in your prayers. Best wishes, Sherlene. SFORD02@aol.com
Ginger, January 22, 2000 - Hiya's, I just wanted to thank you all for all your support and prayers for my sister Karen. She passed away yesterday morning and is now at peace and with God. Although my heart is broken, I do know she is in a better place. Thank you everyone for everything. Hugs, Ginger. firstname.lastname@example.org
Karen K's January 22 reply to Sherlene's January 21, 2000 - Hi Sherlene, It sounds as though you and I were pretty much in the same boat at the same time. Although our situations may be different, I have to say that yesterday it was quite difficult for me to do anything. I was sent home from the hospital with no restrictions as to what I can or cannot do but the motivation doesn't seem to be there. I am planning on going to work on Monday. I work approximately 4 hours a day as secretary for my church.
I know for me the fear of something happening is great. I try to push it aside but once again there is a tape playing inside my head. As others have responded to my post and as Jon posted on the site, you can't give up and you can't let fear of something happening again get in the way of living your life.
Maybe you and I could support one another. I know my body got used to doing nothing quite fast. Even if all you do is walk around the house for a bit of exercise, it certainly won't hurt your body, and exercise also helps the brain produce endorphins which makes one feel better too. I sound as though I'm rambling. I haven't been up for too long and since I missed a much-need haircut on Tuesday, the girl who cuts my hair has had a cancellation so I'm headed to the beauty shop. Karen. email@example.com
Karen Parker, January 22, 2000 - Hello to all who have posted here, God bless you all. I am 48 years old and was diagnosed with CHF 2 months ago. I found this site at the American Heart Association site. It is so comforting to know that others understand how I feel and that I am not alone. I have a question for any of you who could enlighten me. I read several references to SSD. What is it? I have not heard of this. My heart was swelling with compassion and concern for each of you as you shared your thoughts and feelings and life situations. You are all now in my prayers. firstname.lastname@example.org
Tom S' January 22 reply to Karen K's January 21, 2000 - Hi Karen, If I understand your question right, I guess I qualify as being one of the lucky ducks that would be swimming in a sea of pee if the doc's didn't ply them with a double whammy of diuretics. I have been taking 320mg of Lasix - 160mg in the morning and 160mg in the evening - for nearly 5 years. Recently my MDs added a single daily 50mg Aldactone tablet to the mix, but I haven't noticed any appreciable increase in output. I do measure output from time to time and sometimes I am truly amazed when I find that my bladder can hold upwards of 750 cc's of fluid. To put that in perspective, one US quart is approximately 1000 cc's. Perhaps the Aldactone has given the Lasix a little boost. I don't really see a difference at this point. email@example.com
Pat L's January 22 reply to Karen K's January 21, 2000 - Hi Karen, In response to your post, my new doc added spironolactone and Zaroxlyn to the Lasix I was already taking, then increased the spironolactone to 50mg twice daily, then upped my Lasix to 80mg, at which point my Creatinine and BUN numbers went off the chart, so back to 40mg on Lasix, while staying on the others. Pat L. firstname.lastname@example.org
Jon's note: High or increasing Creatine and BUN numbers indicate worsening kidney function
Gus R's January 22 reply to Karen Parker's January 22, 2000 - Hi Karen, SSD is Social Security Disability, which is what some of us try to live on since we are no longer able to work. Jon has a lot of info and links to more info, here. Look that over and then ask any specific questions you might have, as many of us have applied, re-applied, etc,... Best wishes to all, Gus R. email@example.com
Carolyn B, January 22, 2000 - Greetings, I tend to view both forums because I have 2 daughters ages 13 and 15, with cardiomyopathy. My question is: My younger daughter is on lisinopril and has been on it for over 5 years. She has had a tickle-like gagging cough for several years, which sounds like she is going to throw up. We have seen the ear, nose, and throat guy, we have discussed lisinopril as the cause with her cardiologist many times, she has been on designer nose sprays for sinusalso, which did not change the cough. Finally, I asked to get her off lisinopril and on another med. The response was,"Well, what do you want to do?" Since there is not a whole lot of stats for teens and kids on the drugs, he decided to bump her dose downward instead of switching. Any input out there? As you know, the cough can be really disruptive; Not real fun when you are 13 or any age! firstname.lastname@example.org
Anita Cox, January 22, 2000 - Hi, I have been reading with interest the posts regarding heart transplant. I have had CHF and dilated cardiomyopathy since 1991. I also suffered SCD (sudden cardiac death) due to ventricular fibrillation that same year and was implanted with an ICD. My EF at the time was 25 and it has never gone above that. Three months following diagnosis, I returned to work and stayed on the job until 1997, when I retired on full medical disability. My cardiologist began to talk to me about transplant that year.
My meds are Lanoxin, Vasotec, Coreg, Cordarone, Bumex and K-Dur. An echocardiogram this past summer revealed my EF had fallen to 15 and I was referred to a nearby medical center for transplant evaluation. I do not look sick and I felt sure the transplant team would tell me that I was too healthy for consideration. I was in for a surprise. They told me on my first visit that I was a prime candidate. I then underwent the full evaluation: EKG, multiple blood tests, blood gases, exercise stress test, Vo2 (which was 11), right heart cath and on and on. The final recommendation was that the benefits of a heart transplant would outweigh the risks for me. I am 54 and have a wonderful supportive husband and family. My daughter is expecting our first grandchild.
My first reaction was, "No, I don't want this" but when they told me I could not expect to live more than 2-3 years without a transplant, I could not face that either. I was not pressured by the transplant team, nor my family. I had to make this decision on my own. Yes, I am scared but I am also scared that I won't live to see this grandbaby or spend more time with my wonderful husband of 33 years. My cardiologist told me I have "over achieved" for 9 years with CHF but my time is running out. I feel for anyone who is faced with this decision because I still struggle. I have only been on the waiting list for 3 months but I pray not only for myself but for all the others who are waiting that a new chance at life will come soon. Thanks for listening. Anita, from North Carolina. email@example.com
Bill D's January 22 reply to Carolyn's January 22, 2000 - Hi Carolyn, Welcome to Jon's Place! If you are only reading the messages posted on the forums, you are missing the most valuable part of Jon's site! At the top of each forum page, click on the words Site Index Here. You'll find Jon has a gold mine of answers to your questions. Look under CHF Meds and then ACE Inhibitors. Farther down are the ACE 2 Blockers. They are for patients who have coughs on ACE Inhibitors. Ask your doctor if your daughter could use them instead of Prinivil or Zestril. I don't like your doctor much. Can you fire him and get another? Any doctor who asks a mother, "Well, what do you want to do?" has no compassion for his patients. Bill D. firstname.lastname@example.org
Carolyn B's January 23 reply to Bill D's January 22, 2000 - Greetings, Thanks for the response. I am not new to Jon's Place. I always lurk and check in frequently to read the posts and updates. In response to the 4 blood thinner agents, you might add another one not often heard of: Miradone. It is used in folks who are allergic to warfarin. email@example.com
Tom S' January 23 reply to Carolyn B's January 23, 2000 - Hi, After telling my doctor about my persistent cough, which I felt was a side effect of taking Lotensin for nearly 4 years and inaction on his part, I stopped taking the medicine cold without telling him, to see if the cough would stop. It did stop and during my next semiannual visit I told him what I had done and what the result was. He was quite annoyed at me and insisted that I take some sort of replacement drug for Lotensin so he stuck me on Cozaar. Now when I lie down that nagging, hacking cough is back. I am not going to wait this time for my next visit. I'm calling him right away and if need be I will stop taking the Cozaar. It is very difficult to get any rest when that annoying fluid build-up in the lungs causes the cough which seems to wake me up just as I start drifting off to sleep. I have full sympathy with you and your daughter. Like Bill D, I suggest you might have to take a more aggressive approach with him to get your child some relief. firstname.lastname@example.org
Jon's January 23 reply to Tom S' January 23, 2000 - Hi Tom, If it's fluid builup causing your cough when you lie down, that's not what is usually referred to as an ACE inhibitor cough, which is caused by the drug itself and is almost always very dry. The cough you describe - that occurs mainly when you lie down - is known as a CHF cough, an inherent part of the symptom complex called heart failure. Did I misunderstand you? Jon.
Pat L, January 23, 2000 - Hi Jon and all, On Tuesday night 1/25, on the Learning Channel at 7:00 PM Eastern Standard Time there will be a show about heart transplants, appropriately called "Transplant." According to our local tv magazine, it will be about what happens before, during, and after the heart transplant procedure. Pat L. email@example.com
Tom S' January 24 reply to Jon's January 23, 2000 - Hi Jon, I thought the same thing as you; that it was related to the HF, but the irony was that it stopped when I took myself off Lotensin. The difference was like night and day. The cough has only come back in recent weeks since I started taking Cozaar. During the 6 months I stopped taking the Lotensin I had no cough, dry or productive, so I guess it was either a "dry" period for me or the cough was indeed directly related to Lotensin. firstname.lastname@example.org
Jon's January 24 reply to Tom S' January 24, 2000 - Hi Tom, Do you restrict fluids? ACE inhibitors and ARBs can exacerbate symptoms of dehydration, including dry cough, when the cough is not associated with suppression of the RAS. Does the cough appear when you sleep on 3-4 pillows, or use a foam wedge to incline your upper body? I'm just trying to cover all the bases. By the way, I think picking up a phone and leaving a message for your doctor telling him you are about to stop taking one of your meds before actually doing so is a good idea. Don't forget to make the change on your wallet card, too. Jon.
Sandi, January 24, 2000 - Hi all, What a week! As if CHF isn't bad enough, I got the dreaded flu, even with a flu shot. I can't believe how bad it knocked me down. I have noticed since then, that when I retain fluid, it is not my ankles that swell up, it is my abdomen. Is this normal? Also, I need to say that since reading from all of you for a week, I have relized that I have been in denial for the last 8 months since told I have CHF. I see that all of you know your Vo2 and EF. I had all those done when evaluated for transplant but I would have to ask my doctor to find out what they are. I realize now that I must be more knowledgeable about my condition. Has anyone out there had a bad reaction to Coreg? Thanks and God bless. PS. My deepest sympathy to Ginger. email@example.com
Joyce's January 24 reply to Jon's January 23, 2000 - Hi Jon, I thought my cough was from the drug Zestril, which I am taking but I only cough when I lie down and am almost asleep. Do you think it is due to CHF? I know I should ask my doctor but we seem to be learning together. I tell him what I learn on this board, he does the research, and then we agree on a treatment. So I really need to know if you think it is due to the CHF. This message board has been a God's blessing for me. Thank all of you so much. I rarely post, but I am here every day. firstname.lastname@example.org
Jon's January 24 reply to Joyce's January 24, 2000 - H Joyce, Well, I'm no doctor but I think of a CHF cough as making itself known in one of two ways: either a dry, chronic cough that makes you nuts at all times and for no reason, or a cough from fluid buildup which appears mostly when you lie down since gravity cannot keep draining your lungs for you when you lie down. Unfortunately, drugs can also cause a chronic cough just like smoking does, so it's a matter of trying one thing for awhile and seeing if it works or not.
My first suggestion is to make sure to lie down using either 3-4 pillows or a foam wedge to incline your whole upper body. If that helps, you know for sure that it's the old CHF cough. Don't smoke or you'll never know what causes your cough. Be sure not to get dehydrated through too-severe fluid intake restrictions or from overuse of diuretics like Lasix. If you are lightheaded, suspect dehydration, which can cause an annoying dry cough. If the pillows don't help, ask to switch from an ACE inhibitor to an ARB (ACE 2 Blocker), which may help a drug-induced cough. Anyhow, these are places to start. You and your doctor are going to have to work together to knock this one down. Jon.
Jon's January 24 reply to Sandi's January 24, 2000 - Hi Sandi, I swell in my stomach rather than my lower legs and ankles. It is not "normal" but it's not by any means unheard of. Watch out because when we swell in our stomach, our pills don't get absorbed as well into our systems, including our diuretic (Lasix). That means when we need it most, our diuretic may not be as effective, so sometimes we need IV diuretics to get rid of the swelling. This makes it even more important for us to weigh ourselves every morning and take extra diuretic (and potassium) as soon as we see a significant weight gain (usually 2 lbs in 24 hours). Jon.
Jana B, January 24, 2000 - Hi, I am on Cozaar and Zestril. I have the cough. It feels like my throat itches or something. It doesn't feel like fluid buildup. Why do these ACE inhibitors cause a cough anyway? What is it doing that causes it? I have a bottle of Robitussin next to the bed and when the cough gets bad I take a swig. It goes away at some point though because eventually I do get to sleep. I always go to bed at a decent hour and then end up waking up and staying up till all hours. Does anyone else do this? Jana. JByers4u@aol.com
Jon's January 24 reply to Jana B's January 24, 2000 - Hi Jana, The cough is due to the ACE inhibitor increasing bradykinin. Lowering the dose may help but also makes the ACE inhibitor less effective. In most people, the cough stops a few days after stopping an ACE inhibitor, but can take up to 3 weeks to go away.
Renin in the blood converts circulating A (angiotensinogen) to A1 (angiotensin 1). Circulating ACE (angiotensin converting enzyme) converts A1 to A2, which is a hormone in the bloodstream. A2 does bad things to a person with CHF, like constricting our blood vessels and more. By preventing A1 from converting to A2 (by blocking the converter - ACE), ACE inhibitors prevent A2 from constricting your blood vessels and doing other nasty things A2 is known to do in its spare time <g>.
ACE is also the enzyme that deactivates a peptide called bradykinin. Since ACE inhibitors inhibit ACE, they inhibit the substance which itself inhibits bradykinin. That means when you take ACE inhibitors, you get an increase in bradykinin. Since bradykinin causes cough, bingo, you've got a cough. This is the most common side effect of ACE inhibitors. ARBs (ACE Receptor Blockers or ACE 2 Blockers) block ACE at a different location in your body than ACE inhibitors do, so they do not increase bradykinin.
If you think you have a cough caused by ACE inhibitor use, ask your CHF doc to try you on an ARB, such as losartan (Cozaar), irbesartan (Avapro), candesartan (Atacand) or valsartan (Diovan). Jon.
Jon, January 24, 2000 - Hi, Diane T, If you read this, please e-mail me. I have some info for you. Jon.
Shirley G's January 24 reply to Pat L's January 24, 2000 - Hi Pat, My cable service does not provide The Learning Channel. Can anyone tape the program for me? I will be happy to send them my name and address and monies to cover the cost of the tape and the cost of mailing. Please e-mail me directly if anyone is willing to do this. I am one of those to whom the doctors are throwing out the transplant issue, even though I am still feeling quite well. Shirley G. email@example.com
Diane P's January 25 reply to Jon's January 24, 2000 - Hi, I am an upper abdominal sweller also. I would appreciate any suggestions. My waist swells as well as my chest, making female articles of clothing cut into the scar from bypass and produces a red line all around and me unhappy. No one discusses what to do like they do extremity swelling. My weight is a roller coaster. I am on 80mg Lasix, Aldactone, and 5mg Zestoril. I was miserable and non-functional until the Z drug was added but am afraid the blood work may one day soar. What's a girl to do? firstname.lastname@example.org
Jon's January 25 reply to Diane P's January 25, 2000 - Hi Diane, Are you on a low-sodium diet? Do you check every single bit of food that goes into your mouth for sodium content? Do you keep a written list of how much sodium you have eaten each day or do you keep it "in your head?" There is a big difference even for CHFers experienced at following a low sodium diet. If your weight is a roller coaster, you need to get that low sodium diet strict and then get your diuretic therapy adjusted until it stops the roller coaster. Your weight should remain fairly steady, although minor fluctuations (+/- 3-4 pounds) are always going to occur. When you retain a lot of fluid, you are stressing your heart even more and weakening it further. As a repeated cycle, it's not just an inconvenience but a danger. Jon.
Bill D's January 25 reply to Jon's January 24, 2000 - hey Jon, I can just see Jana B printing out all that info and carrying it in to show to her doctor. I don't know about him, but I lost you in the second paragraph. <g> Where did you learn all that stuff anyway? Bill D. email@example.com
Jon's January 25 reply to Bill D's January 25, 2000 - Howdy-doo Bill, Don't tell anybody, but after I wrote that I went to proof read it for mistakes and I couldn't understand it, either! <lol> Sure looked good, though! ;-) Jon.
Tom S' January 25 reply to Jon's January 24, 2000 - Hi, I think this cough thingy is really important since it seems to be common among our CHF associates. I do not use a wedge or a stack of pillows. I use 2 rather full pillows for sleeping. I don't think dehydration is a problem since I have learned to combat dry mouth by keeping a glass of crushed ice handy and I take a few chips of that to take care of that annoying problem. I have also found that Halls (regular menthol) cough drops are very inexepensive and another way to combat desert mouth. I watch fluid intake because I am on such a high daily dose of Lasix and now a second diuretic.
I noticed others have stated problems with the cough keeping them awake and I had that problem too, before my doctor switched the meds. This new cough is not nearly as bad as what I experienced when I was on Lotensin so perhaps it is the lesser of the 2 evils.
By the way, I have seen the transplant program and there are a few parts of it that may be disturbing to the squeamish. As a former operating room scrub nurse, who ironically worked on some of the very first open heart mitral valve implant surgeries performed in the USA back in the 60s, I always found films of operations much more disturbing than when I was actually standing there taking part in the procedure. Film or tape has a way of enhancing and focusing on the surgical wound to such a degree that it hardly resembles what you see firsthand standing 6 inches from the surgical field. I remember the time one of our veteran surgical nurses literally passed out during the showing of a in-service training film on gallbladder removals - colicystectomies - at the first sign of the incision on the film. She recovered fully but never attended another in-service film session. firstname.lastname@example.org
Jon's January 25 reply to Tom S' January 25, 2000 - Hi Tom, I expressed myself poorly, as usual. Dehydration can cause changes in the body's chemical balances, causing a cough that is not from a dry throat but stimulated by body chemicals. So a cough can be caused by dehydration even though your throat feels completely fine. That's why I said to watch out for it. I think many CHFers experience episodes of dehydration from diuretic overuse and pass them off as "just CHF" because the symptoms are similar: lightheadedness, fatigue, nausea, etc,. Jon.
Cindy M's January 25 reply to Jana B's January 24, 2000 - Dear Jana, In response to your question about whether anyone else goes to bed at a regular hour only to find themselves wide awake and up for hours, the answer from me is, yes I do. This is an almost nightly occurence for which I tried many medications to no avail. Even Ambien, a fairly well regarded sleeping medication, works only for a day or two, and then nothing. What I do while I'm up instead of sleeping is something non-stimulating like reading. I was told by a cardiac psychologist that one shouldn't watch television or use the computer, as this is too stimulating. I find that after about 2 hours, I can get back to sleep, although having one's sleep constantly interupted does contribute to my overall fatigue. A few other things I try to do are exercise earlier in the day, avoid afternoon naps if possible, and restrict or avoid caffeine altogether. Best of luck. Cindy M. email@example.com
Jon's January 25 reply to Jana B's January 24, 2000 - Hi Jana, Cindy and everybody, I am giving my own doctor an article at my appointment with him this Friday about the results of losing sleep. The study came from the Lancet (1999; 354: 1435-1439) and was done by Eve Van Cauter at the University of Chicago Medical School. She found that sleep deprivation - not "serious" deprivation but just a few less hours per night than usual - causes less efficient glucose metabolism which can lead to diabetes, raises stress hormones like Cortisol thought to be related to memory impairment and obesity (caused by insulin resistance). So, don't play down your lack of sleep when you talk to your doctor. It could be causing you a lot more serious problems than you thought, especially when added to your CHF. Jon.
Jana B's January 25 reply to Jon's January 24, 2000 - Hi Jon, Boy, I'm sorry I asked about that cough! <lol> I didn't have a clue what you said! I read and re-read what you wrote, and think I understand now. The doctors have offered me other drugs (I am already on Cozaar, which causes a cough according to the little paper the pharmacy gives me) but I decided not to change. I will leave well enough alone, you know? If having this cough is my only side effect from all these drugs I am taking, I think I am doing pretty good! I did tell them if it got to where it was really affecting my quality of life, I would consider switching to something else. JByers4u@aol.com
Paul S, January 25, 2000 - Hello all, It has been quite some time since I posted but I have to say my opinion on the transplant issue. Fourteen years ago, I was told I had an enlarged heart and cardiomyopathy, about 4 months after my mother's death from CHF. With the upset of her death, I never followed through with any testing and in 1991, I had a second echo done and a doctor looked at both and said he saw nothing wrong with me besides a murmur. Later that year and again in 1994, I passed Army physicals and before I became sick, I was in good enough condition to run 2 miles in under 13 minutes.
Then a virus attacked my heart and in 3 weeks, I was in Nashville being evaluated for transplant. I was in the coronary care unit when we had a family meeting with the transplant coordinators and I was told I was placed on the list. This was done without all of the testing complete since I was in bad shape. In the next month I improved and completed most of the testing; blood tests, screenings, creatinine clearance, urinalysis, x-rays, EKG, right and left cath, echo, lung function, bone density, eye exam, stool for blood, abdominal ultrasound, and other tests I didn't even take and some that were just for females. I had a ballon pump tried and then a HeartMate pump implanted and then had to recover from that and get back on my feet before I could get my new heart.
I never had a question of whether or not I would accept a transplant because I had 2 options - die or transplant. I had a 7 year old, 5 year old and 6 month old at home so there was no question for me but if there was and I knew what I know now, I would put it off for as long as possible and try every drug they gave me. The fact that the sooner you are placed on the list the better your chance is, would not be enough for me. I am very blessed to be alive and don't mean to say transplant is all bad but it does have its negative side. I have had both hips replaced because of the prednisone and I can't walk much now because of my knees, which are going to be replaced this year probably. Because of my legs, I can't do rehab, my strength and endurance are really low, I get sinus infections very easily, the cold weather sets up congestion in my chest and I don't do much of anything as far as work goes. I am told this will get better but it is very discouraging.
I had nearly 20 biopsies in the first year and with all the drives to the doctors (250 mile round trip) it is really difficult at times, plus the medical bills. Luckily, insurance covers most of them but I still have some, and SSD is only 25% of what I was earning before. So eveyone is right in waiting as long as possible. I don't complain and feel really blessed and I know that the Lord was really looking out for me but the problems I deal with now are difficult at times. Still, every time I look at one of my children and my wife, I know it is worth it and would go through it all over again if I had to, even with all the changes we have had to make and problems we have had to face. PDSteeley@webtv.net
Tom S' January 25 reply to Paul S's January 25, 2000 - Hi Paul, Thanks for your honest and frank outlining of post transplant problems. I think it added a needed dimension to the subject on this forum. firstname.lastname@example.org
Rick M, January 25, 2000 - Hi, I have been very interested in all the recent posts on the essence of CHF. "If we don't watch our weight, we gain too much fluid, and if we don't watch our diuretics, we lose too much fluid, and on and on." Having come to grips with this monster we all share, I would like to kind of wrap up what I've learned from the experiences shared here over the years, and from my own ups and downs.
As Jon keeps pointing out, you must weigh yourself every day, naked and starving, and write it down on a special calendar. Since adding diabetes to my role of afflictions, I also note my blood glucose reading in the same place at the same time; early morning. If you also note your med changes or additions, or even blood pressure readings if they seem odd, you'd be surprised at what a handy aid this calendar can be to take along on your doctor visits. Keeping track of your weight is really keeping track of your fluids and if you see yourself gaining, you have plenty of time to correct your diet before you retain so much fluid you have to go in for draining. As Jon said, it's what you put in your mouth that's affecting you. You are in control, if you can spot the signs early enough. email@example.com
Judy, January 25, 2000 - Hi, I haven't written in a long time but wanted to ask a question. How many heart beats should we have per minute? I just don't remember. Lately it seems mine is beating about 50-55 a minute and isn't that rather slow? I appreciate any answers. Thanks. firstname.lastname@example.org
Phyllis A, January 25, 2000 - Hi to all, Sandi, Like Jon, I also swell in my stomach. I was told by my doc that not all CHFers swell in their ankles and legs. Jon, what to do when you follow a strict low sodium diet and still retain fluid? Do I go to hospital every time to get IV diuretic? That is my problem most of time. My doctor said to just increase my Lasix dose when this happens. I am on 160mg in the morning and 80mg in the evening. What am I to do? email@example.com
Jon's January 25 reply to Phyllis A's January 25, 2000 - Hi Phyllis, There are ususally several options.
All these options have pluses and minuses, so you really need to lay them out in front of your doctor and talk over each one to see what may work best for you. If you are retaining fluid on a regular basis, I do recommend taking some action, since as I said earlier this is very stressful on your already weakened heart. Jon.
Jon, January 25, 2000 - Hi everyone, I have been taking a new supplement designed just for heart failure patients for over a month now. I took it for a month and then stopped it for 2 weeks, then started taking it again. From my personal experience so far, I won't say it actually makes me feel better but I will say that, "It gives me a tendency toward having good days as opposed to bad days."
I want to say up front that I am receiving this supplement free for awhile (not indefinitely) from the manufacturer. Apparently, one of Nutricia's employees ran across this site and in his reading saw that supplements designed exclusively for CHFers were a potential market. He convinced the company to put money into research and development, and now it is available, as well as being in 2 clinical trials, in the USA and in Europe. Since he believes this product would never have happened without this site and your participation in it, he said a free supply for awhile was in order, and I didn't argue. We all know how expensive supplements are!
He asked me to write a 4 page pamphlet describing the extra nutritional needs of those with CHF but I just don't have the energy or time, and I don't know when this drive will go kaput on me, so I turned down the offer. However, I have agreed to proof read the pamphlet his company is writing instead and suggest changes to make it more useful to those with heart failure. This will include information on other aspects of coping with CHF as well, like low sodium diet, etc,...
If anyone is interested in helping me with this proof reading job, I need 5-8 people who are interested in nutrution and supplements in general, and don't mind putting in some time reading and suggesting changes to such a pamphlet. I will need your snail-mail address so he can send you a free supply to try for yourself, as well. I meant to ask for volunteers by e-mail instead of posting but my time is stretched in too many directions at once right now and in order to save time, I am asking anyone interested to please e-mail me at firstname.lastname@example.org. Please e-mail me instead of posting. That saves me time, too. <g> You do not have to be an expert on anything to participate, since the pamphlet is aimed at CHFers in general, we need all types of people in on this.
You can tell that I am not putting in a plug for this supplement right now since I am not giving you its name. <g> I will tell you that it is in liquid form, and contains just about everything we have discussed on this forum. The pamphlet should be ready to start proof reading in about 2 weeks. Jon.
Joe S' January 26 reply to Rick M's January 25, 2000 - Hi, It seems like today is the day to give some advice, so let me add a little. Regarding Hall's cough drops, they do work but may give a bad taste. Convenience stores sell a little vial called Ice Drops and believe me, it seems to relieve all coughing instantly. Of course, it has a touch of booze in it, so don't take over ten vials. ;-)
Now on to bloating and stuff; I have been experiencing this stuff for over 56 years and watched my mother die with it. Twenty-five years ago, when coughing, bloating and racing heart got out of control and I didn't have any idea it was related to my heart problems, I went to a gastrointestinal doctor. He put me on a fast for 3 days and told me to start adding foods back in. I found 5 things which caused all of these problems and stopped eating them. Ehen I go out, who knows what we are eating?! When a bout of racing heart, bloating and fatigue happens, I call the restaurant and find out what they are injecting their food with. Two simple things for me are lettuce and onions. Two nights ago, my heart was beating at 150 beats per minute. It was onions. Hope Lang's husband has a lot of this and he has no heart problems. Try this, it works. My mother's death was caused a lot by eating the wrong foods.
One more thing regarding flus; Look up collodial silver on the Internet. Joe Stevenon. email@example.com
Rieale's January 27 reply to Paul S' January 25, 2000 - Hi Paul, I truly appreciate your post. I'm 22, with CHF and cardiomyopathy. I am going to the Cleveland Clinic on February 10, where it is very likely that transplant will be on everyone's lips. I read so much clinical information on our condition and treatments, but rarely get to hear it from the people who have experienced it. Rieale@aol.com
Donna Z's January 27 reply to Judy's January 25, 2000 - Hi Judy, Funny you should ask this. I just had a check-up with the head of the transplant team and asked the same question. I had a visitng nurse come out to my house a few weeks ago and she was concerned that my pulse was only 52 beats per minute and scared the heck out of me. She called my regular cardiologist, who said, "No problem." When I saw the transplant doctor, I asked her and she said as long as I was not having dizzy spells or anything, not to worry. She said she would prefer my heart beat 52 than 100 times a minute. When I was first diagnosed, my heart was beating 120 beats per minute and you could watch it through my blouse. It was 60bpm at the time of my doctor's visit. Still, I recommend that you check with your doctor about a slow heart beat, since every person is different. Better to be safe than sorry. firstname.lastname@example.org
Pat L's January 27 reply to Donna Z's January 27, 2000 - Hi Donna, After I was on the highest dose of Coreg for about a year, I was at the pulmonologist's office for some tests and they had the pulse meter on me. It showed that my pulse was running about 34 to 36 beats per minute. They stopped the lung tests and called my cardio-doc about this! I thought this was too low also, which led to the dose being lowered but the lower heart rate contributed to some improvement in my heart function. Pat L. email@example.com
Paul S, January 28, 2000 - Hi Everyone, I want to apologize for my last post as I wasn't very clear in it and give the results of my annual studies. In my last post I should have said that it is extremely rare for anyone to have such an adverse reaction to prednisone and need joint replacement so quickly. I was told by my coordinator that she had never seen a person affected as quickly in her 20 years. It is not uncommon for people to need joint replacement after 3 or more years. The longer you take prednisone, the greater your chances. When I said I didn't have a choice, I should have said that once I was sick, I wasn't able to leave the hospitial. The meds I was given would only last a few weeks and then I would be on something else or higher doses.
I have talked to several people who went through an assist pump surgery and we all said it is the most painful surgery ever. I would have waited longer before transplant but I was in end stage disease. When I said I had low energy and endurance, I should have added that this may be temporary and should improve as I am able to exercise more.
My annual studies show my EF to be 55%, my bone scan showed at least a 30% loss of bone mass, my cath and biopsies were good, my blood levels and creatine clearances were good, and my body fat levels were good also. So while I do have many things that are discouraging, my quality of life is good and it hass been lengthened by this for a year now. I have faith in Jesus Christ that I will have many more. The last thing I would say about this for now is that it is the last effort but it is worth it, and your life can return to some normalacy. I have a friend who has been transplanted for 5 years and is 27. She just gave birth to a healthy baby girl and they are both doing well. She had one knee joint replaced 2 years ago, but isn't life wonderful after transplant?! PDSteeley@webtv.net
Manuas, January 28, 2000 - Hi, I'm looking for a good CHF/DCM specialist in Ireland. The doctors in the rural area I'm in are pretty old-fashioned; they think beta-blockers are contraindicated in CHF! They think I'm mad when I mention new treatments. I've had increasing frequency of edema but otherwise I'm okay but I need a good specialist who knows this area. Thanks, Manuas. firstname.lastname@example.org
Henry T, January 28, 2000 - Hi, I have been reading about a fairly new CHF drug called omapatrilat "like conventional ACE inhibitors, it blocks the action of angiotensin but omapatrilat also neutralizes a substance called neutral endopeptidase, resulting in blood vessels relaxing. It may end up replacing ACE inhibitors because it's an ACE inhibitor plus." Does anyone have additional information? Thanks. email@example.com
Jon's January 28 reply to Henry T's January 28, 2000 - Hi Henry, There is an article about it at New CHF Meds and some more about it in the text articles I send to people on my mailing list. You can download those articles or add yourself to the mailing lists here. There is a collection of healthcare Urls available for download here that includes outstanding Web resources for tracking down drug info, in addition to those at the Links page. Jon.
Jose, January 28, 2000 - Hello, I am wondering if anyone is taking Amiodarone, also known as Cordarone. I have been on this, along with Vasotec, digoxin and furosemide. I have dilated cardiomyopathy and CHF. My concern is amiodarone's long-term problems to my other organs. Is there anyone else on this drug or know of any problems with it? Thank you, all your questions have been very helpful. firstname.lastname@example.org
Jon's January 28 reply to Jose's January 28, 2000 - Hi Jose, I hope someone who takes the drug will post. Until then, there is some information about amiodarone's side effects and how to manage them here. Jon.
Dorothy, January 28, 2000 - Hi, I have been diagnosed with CHF. I underwent surgery in October for a mitral valve (St. Jude). I take 400mg amiodarone and suspect I am developing a toxic reaction. I have received 2 applications of prednisone since December 2, 1999, which seems to restore my energy for short periods. Is there any new substitute for amiodarone? MrEtoh@aol.com
Jon, January 28, 2000 - Hi everyone, I have added an FAQ to the site, which you are all invited to read, and suggest changes or additions to. You can find it here. I am working on this instead of the "Doctor's Corner" section I originally planned because of how few questions were sent to me for the "Doctor's Corner." Maybe this will be more helpful. Jon.
Rick M's January 28 reply to Jon's January 28, 2000 - Hey Jon, That new page is a great idea. I hope the newbies, who hesitate to jump in and ask "old" questions will avail themselves of it. It's a great introduction to living with CHF. email@example.com
Bill D, January 28, 2000 - Hi, If you have to pay for your prescriptions and you have a version of Excel, I have something that may interest you. It's a spreadsheet where I enter my meds, how many are in a bottle, how many I take a day and what a bottle costs. It automatically figures what each pill costs, how much you pay a month for each prescription and the total you'll pay in a month's time. It's pretty neat! You must give me the version of Excel you have. In Excel, on the menu, click "Help", then "About". All you have to do is change the entries for my drugs to yours. I'll send your version as a file. I have MS Excel 97 SR-2. Bill D. firstname.lastname@example.org
Claudia, January 29, 2000 - Hi, I don't post often, but read daily. I wWish I was more qualified to answer some of the posts. I love the new FAQ page; it's a great idea! I wanted to share that my 4lb Yorkie, Maggie, died in my arms tonight. She was just short of 15 years old. She died from CHF, that we did not even know she had until today's tests. I am down a bit, and will miss her hugs. I hope everyone is having some good days. God bless! CMSchm@aol.com
Jon's January 29 reply to Claudia's January 29, 2000 - Hi Claudia, I am terribly sorry to hear about your Yorkie. I had one when I was a boy, named Beardog. He thought he was a Rottweiler and once even attacked a Doberman Pinchser! <lol> There's a picture of him here. Especially when a constant companion, a dog is a true friend and a great loss. Jon.
Judy S' January 29 reply to Joes's January 28, 2000 - Hi, I also have CHF, DCM and V-tach. I take Cordarone (amiodarone). The most pesky problem I have had to date has been with my thyroid. One of the side effects is that it lowers your thyroid and I am taking Levoxyl for that. Also, I am much more photosensitive and use a really good sun block. Those are the only 2 problems I have had, although as you are aware, everyone is different. email@example.com
Marion M, January 29, 2000 - Hi, I thought you might like to pass this Web site along: www.seniordruggist.com. It is a service that helps you locate programs that provide free or very low cost drugs for low-income people. firstname.lastname@example.org
Shirley V's January 29 reply to Claudia's January 29, 2000 - Hi Claudia, I read the posts daily, but never felt knowledgeable enough to answer any of them; but I know how you feel about losing your dog. My dog, which was a minature poodle, died just last July of CHF. I had her for 14 years and she was company to me since I live by myself. I had her to the vet several times but there was nothing they could do for her at the end. It was so hard to watch her suffer. It is strange how our pets had CHF like we do. I still think about her and still miss her. I hope you are feeling better, and I know it takes time to deal with it. God bless. email@example.com
Debbie, January 29, 2000 - Hi, I lost this site several months ago and just found it again tonight. In 1997 I was diagnosed with CHF and cardiomyopathy. My ejection fraction was 10 and my pulse was 120. They thought a virus caused the damage. I take one mg Bumex, 2.5mg Vasotec, 0.25mg Lanoxin, 8mEq KlorKon and 25mg Coreg twice a day. Now that I am used to Coreg, it does not bother me too much. When first taking it, every time the dose was increased it would seem to exhaust me, which seems to be common. Also, occassionally I have foot pain at night. I found out this is a side effect. I was retested in September and my ejection fraction was 55, my pulse was 79 and my BP was 117/62. The echo showed that my heart was only minimally enlarged. After being given only 5 or less months to live, I have improved greatly, so I want everyone to keep their faith. Debbie. Polybrid@hotmail.com
Thelma C, January 29, 2000 - Hi, To all the great folks who have given me courage and support with my DCM, I just wanted to update everyone regarding my work dilemma. After being off for over 6 months "recovering" the best I can, I will begin a trial of part-time work this Monday. I realize this is a lot more than some of you could ever manage, but it is a big step for me and I'm hoping I'll have the stamina to succeed. I'm remaining positive and if I'm not able to continue with my career due to my disease, I think it will be easier to say goodbye knowing I tried. Thanks again for this wonderful forum, Jon. God bless. Thelma. Tcull@prodigy.net
Tom S' January 30 reply to Marion M's January 29, 2000 - Hi, Thanks for the info on the drug assistance site, but I did notice they require a "processing fee" of $10 per prescription to locate a participating drug company. Considering the fact that I now take 12 different medications that $120 would represent a substantial outlay of cash for something I have been able to find with just a phone call or two. I haven't got a clue who "seniordruggist.com" is or is affiliated with. I would feel much more comfortable sending dollars to an organization such as AARP or some other well established and respectable organization than one which puts up a splashy website, promising everything, and possibly delivering nothing. As always, "buyer beware."
However, in all fairness to seniordruggist.com it does state on their Website that the processing fee will be refunded if the particular drug company does not participate in the low income drug program. It does not state that the fee will be refunded if the person does not meet the criteria of low income which does vary from company to company. Thus far I have successfully received over a years supply of Coreg, Lotensin (when I took it), Aldactone, Cozaar, and at one time I even received the relatively low cost Lanoxin for free. Some came directly from drug companies and some were obtained with a coupon issued by my doctor for either a 90-day supply or a 30-day supply of that drug. It seems that the more inexpensive the drug, the looser the economic requirements. My most expensive prescription is K-Dur (potassium) which runs me about $57 a month at my drug store, and the one drug company that absolutely refuses to give out freebies in almost any form including for the low income. My cardiologist's staff assisted me with the paperwork and seemed to have every form I needed upon request and it didn't cost me a single dime except for the gas to go to their office and sign the forms then to go pick up the prescriptions.
I know this is lengthy but having been in the low income bracket for a number of years and having to pinch pennies due to a rather large family, I also learned that the large drug chains are not necessarily the most inexepensive source of prescriptions. That includes Wal-Mart. To my amazement, the most inexpensive drug store in my town was a family owned mom and pop operation that priced their scrips well below the major chains. Not only were they cheaper, but they have a free delivery service and they set up a revolving charge account with no interest charges without me even asking for it. That makes it very easy for me to pay a big chunk of my prescription medicine bill when I have the funds to do so. Perhaps you need to check around your town and see if there is anything like this near you. Dollars to donuts there is. firstname.lastname@example.org
Jon's note: The free RX info is always available through the Links page. Jon.
Don G, January 30, 2000 - Hi Jon, Would you let everyone know that I just sent out our first newsletter? Many of our stored addresses have apparently changed. Our newsletter includes 3 new recipes we have worked on for a long time, including a low fat, low sodium lasagna. Sodium is only 75 mg and total fat is below 12 grams. Fat can be cut in half by making the vegetarian recipe we also include. Visitors can find the newsletter by visiting our site or by going to www.megaheart.com/january_newsletter.html. Thanks, Jon. I hope all is going well with you. Don. email@example.com
Joy R, January 31, 2000 - Hi, I haven't posted for awhile since I've been out of the hospital. It is getting harder for me to come back and sit at the computer for long. I have a question. How many of you suffer with the foggy feeling that gets in your head and won't go away? It feels like you are not getting enough oxygen to your brain and you just have to lie there and be miserable with the feeling.
Last night, I used my oxygen and was somewhat better today. I was able to sit up for awhile and read some of the posts, but not for long. I know my heart is very weak and I can stand the shortness of breath and the fatigue, but this fogginess keeps me from reading or watching tv. Does anyone have any ideas about how to make it better?
Also, my husband and I are going to Gainsville Florida to Shands' Hospital on the 20th of February. I will be in the GI section to be evaluated for my upcoming surgery. It seems they need to find out how much, if any, GI function is left. It will be a hard trip for me but it is necessary since the doctor plans to perform an ileostomy with the possibility of a stomach tube and a jujunostomy to help vent the built-up pressure. I have to see the cardiologist to see if he thinks I can withstand the surgery. As it is, I have lost all GI function and if I am to live at all, this needs to be done. I will be full of holes if it is done since I already have the Hickman catheter coming out of my chest.
It's a good thing marriage is for sickness and in health, since my husband has stood by me through all of this and I think it will be much worse before it gets any better. If I didn't truly love my family so much, I would just give up, and I have given this much thought. Jesus doesn't seem ready for me yet and I'm Catholic, so I must keep tying to hang in there and see what He has planned for me; But I'm so tired. Joy. firstname.lastname@example.org
Bill D's January 31 reply to Tom S' January 30, 2000 - Hi Tom, I was interested to see that the SeniorDruggist.com folks are located just down the road from where I live! E. W. Ryan & Associates in Winter Park, Florida. I'm sure you're right and for each ten bucks you send him, he'll fill out the drug company's form, something you could do yourself. We could find out each drug's maker and write or call them ourself to get their form. He's just making money on a patient's ignorance! Bill D. email@example.com
Joyce, January 31, 2000 - Well guys, Here I am back again with another problem. I tried the pillows and my coughing stopped completely. Thanks again, Jon. My problem now is depression. My condition sometimes overcomes my ability to handle simple problems. Sometimes I just cry until my heart breaks. I try being positive, but sometimes I can't stop crying. I get so tired of feeling sick and tired. I take Paxil for depression and it helps but there is always some physical problem. The new problem is gout in a finger on my right hand and gout in a finger on my left hand, and my pulse rate is high all the time lately - not under 110 in the past two weeks. What effect does a high pulse rate have on your heart? I know I should ask my dioctor but I always start here first for answers. I'm sorry this sounds like a pity party, but it is. Tomorrow will be better but tonight, I feel bad. Thanks for listening. I hope I did not bring you guys down. I can't tell my family about these feelings. They just get sadder than me. firstname.lastname@example.org
Jana B, January 31, 2000 - Hi Joy, There is nothing I can say to help you understand all the symptoms and feelings you are having, but I do want to say how glad I am that you have such a supportive husband. It makes all the difference in the world! You are lucky, in that sense.
Joyce, My resting heart rate is 120 and I too should know how it affects your heart, but I don't. <lol> From those I have talked to, there seems to be a lot of depression in CHFers. I don't have it but know there are treatments for it. I went through a depression years ago and there is nothing I would not have done to get over it! If you ever want to chat or vent, e-mail me! Jana. JByers4u@aol.com
Paul S' January 31 reply to Joyce's January 31, 2000 - Dear Joyce. First I want you to know that my prayers are with you. I really feel for you as I went through a period that sounds very similar to yours while I was in the hospital waiting for my heart. At times I just couldn't control my crying episodes, which were very hard for me. I still have problems every now and then. My doctors placed me on Depakote along with Paxil, and I have found this to work extremely well in my case. Perhaps you could ask your doctor about this. I felt I regained some control over my emotions with the addition of this drug. Anyway, I want you to know you are not alone in having to deal with this; we are here and Jesus is always with you. God bless, Paul. PDSteeley@webtv.net
Jon, January 31, 2000 - Hi everyone, I have had a good list of prescription drug financial help resources for quite awhile. I meant to put it into HTML and make a page out of it but it looks like I'm never going to get that done. So I am uploading it to my server as a text file. It lists the various pharmaceutical companies and contact info. You can find it here Jon.
Debbie H, January 31, 2000 - Hi all, I haven't posted in ages and I apologize for having been so slack about keeping in touch. I want to give all of you a big thank you and send up prayers of thanksgiving for the wonderful prayer warriors in this group! I just read Jon's e-mail update on baby Hunter and I still have tears streaming from being so thankful for answered prayers!
Anyway, on to my other reasons for posting. I am still hanging in here and I have gotten strong enough to at least manage to live alone again finally. I've missed sooo badly my "alone" time! My girls still come over quite often and straighten the house, wash clothes, etc,..., as needed, then leave me to my own devices. I've only been alone for about 3 weeks but the peace and quiet is sooo nice!
I went to the doctor last week for my 3-month follow-up. He is very pleased with how my meds are working for me. Although my EF is still really low and I tire easily, he is pleased that we haven't had to do anything else right now to my med regimen. I still have residual cough and congestion from the flu bug that laid me really low but not to the extent that I ended up in the hospital. I have been fighting that nasty bug since October! I know that one of the main reasons I've had the lung junk hang on so long is because I absolutely refuse to take any prednisone. It's been a long, strenous ordeal (hack, hack, hack and almost no air) and I've had to be really extra-special careful to keep an eye out for water retention but trust me, as far as my case is concerned, it has been well worth doing without the prednizone.
This brings me to another reason for posting. I have noticed that the nasty-ugly depression sneaky-snake is rearing his ugly head at some of y'all. I keep trying to ignore it and just push it away so I don't have to deal with it. I hate being depressed! <g> I have always had to deal with bouts of major depression due to a bipolar disorder. I found that prednisone along with ibuprofen tend to magnify the depression episodes I go through. In fact, taking a standard 21-day pack to help fight lung inflammation causes me debilitating depression. I realize that since I am predisposed to having depression episodes, the prednizone affects me more than it might another person. I've also found that Lanoxin can trigger mood swings of my bipolar disorder. The up and down states are unbelievable!
I don't know for certain if this info will help anyone here. I have no idea if anyone deals with the manic/depressive states of bipolar along with heart problems. However, there may be someone here who can use this info. I cannot eliminate Lanoxin from my prescription regime without repercussions so I ride a rollercoaster. Before I go, I've just got to brag on myself! I have lost 68 pounds since June. How? I'm clueless! I watch my sodium intake, along with fluid intake but that is it! I weighed 294 in June and now I'm at 226 and still loosing.
My prayers are with those of you who are suffering with that nasty ugly depression monster, as well as with the rest of the group, that the Lord will keep us all in the palms of His hands! Hugz, Debbie H. email@example.com
Doug K's January 31 reply to Joyce's January 31, 2000 - Hi Joyce, At least you aren't coughing anymore due to inclining your upper body! That will help you sleep better and that in itself may help curb your depression. It is hard to feel "up" when we are tired. I think most of us have felt depressed at times, like you have been the last day or so. It isn't easy dealing with all these health problems and as you say, sometimes we don't like to "bring our family down" with our problems. That is why Jon's site is such a good thing; we always have some folks out here that we can tell our current problems to, and know that they understand, and have been there.
Try to allow yourself some time to feel how you feel, but then try to find something good to be happy about. None of us - even when we were healthy - were happy all the time. It's just very easy now when we feel sick and helpless for depression to creep back into our lives. Did you have depression before your heart diagnosis? If you did, you may need your doctor to know of your downturn. You may need an increase, or new meds, for the depression. As I look back on the period of time just before I first found Jon's Place, I realize that I was in depression. I didn't think I was going to live much longer and my lack of medical information about people with CHF was one of the biggest reasons for it! So keep your head up best as you can, keep posting, and feel free to e-mail me anytime! firstname.lastname@example.org
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.