The paperwork never ends The Archives
Loved Ones - July, 1999 Archive Index CHFpatients.com

Rick M's 7-1 reply to Joyce's 6-30     coping
 
Lori 7-2     Restoril questions
 
Dona 7-2     intro, more later
 
Jean 7-2     questions about heart failure specialists & my mom
 
Cathy Pearson 7-2     treatment questions
 
Pam 7-2     confused about husband's treatment - have questions
 
Jon's 7-2 reply to Cathy Pearson's 7-2     how to tell & what to do & to Jean
 
Jon's 7-2 reply to Pam's 7-2     treatment, transplant & more
 
Sandi M 7-5     my dad died
 
Dina R 7-5     gout & medication questions
 
Jon 7-5     e-mail addresses & page updates
 
Carolyn B 7-6     coping with a low sodium diet & Url
 
Lyle 7-7     seek doctor recommendation & more
 
Pam's 7-7 reply to Sandi M's 7-5     condolences
 
Pam 7-7     thanks, questions about test & sodium
 
Ann Marie K 7-7     keeping mom comfortable, infusion & diuretics questions
 
Rebecca G 7-7     husband has CHF, many questions
 
Pam 7-8     valve questions
 
Margi M 7-8     congestion, side effects questions
 
Ashley J 7-8     CHF life expectancy question
 
Jon's 7-8 reply to Dina R's 7-5     diuretics & gout, searching this site
 
Jon's 7-8 reply to Pam's 7-7     how important is dietary sodium restriction?
 
Jon's 7-8 reply to Ann Marie K's 7-7     diuretics & kidney function, dopamine
 
Jon's 7-8 reply to Rebecca G's 7-7     how to get started coping with CHF
 
Jon's 7-8 reply to Pam's 7-8     doctor's description
 
Jon's 7-8 reply to Ashley J's 7-8     life expectancy
 
Dina R 7-9     a little humor
 
Pam C 7-9     update
 
Ann Marie K 7-10     update
 
David G 7-11     seek info on home protime test machine
 
Lea Anna M's 7-12 reply to Ann Marie K's 7-10     anyone use dobutamine at home?
 
Bette 7-12     is this site listed under AOL Health?
 
Jon's 7-12 reply to Bette's 7-12     I don't know, but...
 
Alice P 7-12     sodium intake questions
 
Karen D's 7-13 reply to Alice P's 7-12     sodium & fluid restrictions
 
Rick M's 7-13 reply to Alice P's 7-12     sodium & fluid restrictions
 
Jon's 7-13 reply to Alice P's 7-12     sodium & fluid restrictions
 
Helen R 7-14     meds vs dizziness questions & more
 
Jon's 7-14 reply to Helen R's 7-14     meds vs dizziness, aspirin therapy
 
Charlie 7-14     question about bowel control & CHF
 
Irish 7-15     doc seems to disagree with our reality - questions
 
Rachel 7-18     got new doc, have list of questions
 
Rob 7-18     update, lightheadedness & meds questions
 
David G 7-18     a-fib/ICD/pacer in one implant questions
 
Linda Grant 7-18     digestion & bloating problem, questions
 
Pete E 7-18     book by heart patients
 
Susanna 7-18     seek doctor in Humble Texas & more
 
Ruthie A 7-19     mom's taken a turn for the worse
 
Dina R 7-20     ICD & cause of death & transplant questions
 
Jon's 7-20 reply to Dina R's 7-20     ICDs, cause of death, transplant timing
 
Joyce 7-20     questions about heart rate & BP
 
Jon's 7-20 reply to Joyce's 7-20     heart rate & BP & more
 
Dona 7-20     update on mom, a-flutter, seek doctor recommendation
 
Jon 7-20     Aldactone (spironolactone) & the RALES study
 
Rebecca G's 7-21 reply to Jon's 7-8     thanks, Elton & work, Disability
 
Josi 7-21     amiodarone, Coumadin & aspirin question
 
Barbara 7-22     questions about my dad & his situation
 
Barb 7-24     questions about my dad's treatment
 
Carolyn 7-25     update on my daughter, low sodium resource
 
Barbara 7-25     Aldactone vs Aldactazide question & more
 
Jon's 7-25 reply to Barbara's 7-25     Aldactone vs Aldactazide answers
 
Amy Jo 7-25     husband has weak kidneys - what now?
 
Linda Hamilton 7-25     seek CHF specialist in Pensacola
 
Ann Marie's 7-25 reply to Amy Jo's 7-25     coping with kidney failure & more
 
Dotty M 7-25     question about heat & humidity
 
Jean Henderson 7-27     update on mom & more
 
Roberto A 7-27     questions about altitude & amount of risk
 
Barbara S 7-28     Aldactone pills
 
Jon's 7-28 reply to Barbara S' 7-28     Aldactone pills
 
Carolyn B 7-28     just found you & more
 
Jon's 7-28 reply to Dotty M's 7-27     heat & humidity
 
Jon's 7-28 reply to Ann Marie's 7-25     afterload explanation
 
Pearl 7-30     update on Joe, Aldactone problems, hospice care
 
Carolyn B 7-30     update, question about Carolyns
 
Dotty M's 7-30 reply to Jon's 7-28     working in this heat
 
Jon 7-30     online survey Url


Rick M's July 1 reply to Joyce's June 30, 1999 - Welcome to Jon's Place. Your comments are very much the ones of most of us here. Firstly, no one really knows what causes CHF. It is not one of those, "If You Had Done What You Were Told To Do, You Wouldn't Have It" kind of afflictions. You have it and you learn to live with it. Secondly, the combination of low feelings and low income are a real strain on a family, and all I can tell you is that if you keep on fighting the system, you can win. Most of us have done it, so you can too. Thirdly, no one ever will know how tough it is except those who face it and defeat it, so don't stop trying. We've all been there and it really can get better. rearadml@iu.net


Lori, July 2, 1999 - Hi, I found out yesterday that the doctor prescribed Restoril to my grandma. I just got her off Zoloft not too long ago. The nursing home thinks she needs something, I guess. Our family does not really want her on any antidepressents. We don't think it's necessary now. She is now having trouble with her kidneys. She can't control when she goes. The nurses say it's because she wants attention. I know better than that. I think it's her meds. She is a little confused also now. I don't know why they insist on her taking some kind of mind altering drug. Her mind was fine. Does anyone know anything about Restoril? Thanks! ericlori@netins.net
 
Jon's Note: Have you tried looking it up at one of these pages?


Dona, July 2, 1999 - Hi, This was one of the first pages I came to when beginning the search for information. On June 21, my mother was put in the hospital for CHF and this is the first chance I have had to get to work understanding and researching. I have read The Manual - thanks Jon! I have a meeting with the doctors on July 4 and am trying to arm myself with the most information I can so I can ask the right questions. So many things are still up in the air. I will have more questions for the forum later. Thanks for being here. cw2reitenbach@hotmail.com


Jean, July 2, 1999 - Hi, My mother, who lives with me, has just been diagonosed with CHF. She has severe arthritis and last December she got a bad cold that just seemed to stay and stay. She is wheelchair bound and really coughing a lot. Her memory is bad and she has no strength. She has been on a diuretic for a long time and the doc just gave her a stronger one (Lasix). My sisters, who help me care for her, are split on how agressive we should be in her care to keep her alive. She is 77 years old, has 3 compression fractures in her back, has had hip replacement surgery 4 times, and has spinal stenosis. What can I expect if we go hunt a heart doctor who really knows about CHF? Is it likely she will get enough strength back to stand and walk a little with her walker? I would appreciate any info and thoughts. n2bimmers@aol.com


Cathy Pearson, July 2, 1999 - Hello out there, I am the daughter of a CHF patient of 8 years. The latest round of treatment has included demadex instead of Lasix and a Coumadin alternative for an arrhythmic heart beat. Even so, the shortness of breath and complete lack of energy persist. My question is this: since the doctors aren't talking much, when do I know if this progressive disease has reached the stage where there is nothing more that can be done? The last trip to the hospital ER left my mother open to unnecessary tests that were terribly taxing to her already weakened system. I certainly want to help her fight the fight as long as it makes sense. I am looking for information about how to recognize and work with her when more intervention does no good. CEPARTIST@aol.com


Pam, July 2, 1999 - Hi, This is the first day I've discovered this forum and I hope I can learn from your experiences. My husband, age 45, was diagnosed 6 months ago with CHF. He had an acute episode with suddenly putting on 50+ pounds of water weight and passing out on the living room floor. He had been to the doctor with symptoms of pneumonia and had been put on antibiotics. We thought he was having an allergic reaction to the antibiotics but it turned out he didn't have pneumonia after all but congested lungs from heart failure. He's been to the cardiologist several times and a couple of months ago his EF was 30%. He's on all the right drugs including an ACE inhibitor, diuretic, potassium and Lanoxin. He goes back for more testing on July 23rd.
     Our problem right now is that getting information from his doctor is next to impossible. He says he can't tell us anything about his condition until he runs more tests. He's answered my questions with a wave of his hand and misinformation (contradicting what I've researched on the Net and in medical journals. I've got a BS in biology and 16 years of medical research experience so I understand the literature and statements. Then he makes statements like, "If he gets any worse I'll refer him to a transplant center." My husband doesn't seem as if he's anywhere near needing a transplant because he can still do things like mow the lawn and exercise (stopping if he gets winded) so the comment seemed premature. The doctor didn't mention anything about changing diet even when I specifically asked what we could be doing to help him live as long as possible. He just said to maybe take some vitamin B-1.
     My husband wants to wait until after the next round of tests before looking for a new doctor since they are already scheduled. I'm concerned because I've read all the horrible stats about 50% of patients diagnosed are dead within 5 years. Does his young age of 45 make a difference or are the stats the same for all ages? How bad is 30% EF? How bad does it have to be to need a transplant? I feel adrift in a sea of partial knowledge. Those of you with experience please help me know what's going on. Thanks, Pam. woo_conley@hotmail.com


Jon's July 2 reply to Cathy Pearson's July 2, 1999 - Hi Cathy, Welcome to Jon's Place. What I am going to say is my opinion and should be treated exactly as such - an opinion. Some people read a post like yours and cry "doctor cruelty." In fact, no doctor can "order" a person to take any test. Talk to your mom and see if she wants to discontinue further testing. Then bring her doctor into the discussion (in person) and get things out in the open. This does not mean that her treatment is stopped, only testing. By the way, I am curious to know exactly which tests taxed her so much physically (EPS, maybe?). My wife and I had a long discussion recently about end-stage CHF, treatment options, heart transplants and more, and what I personally wanted and expected in all these areas for myself and why. The following stems from that very honest conversation - a matter of complete self-interest - and therefore totally unconcerned with anyone's agenda, real or perceived.
     There is no way to know for certain when someone is going to die of CHF. There is no way to predict how long a person "has left" when they develop CHF. I'll get more specific in a minute, honest. The disease and its progression are highly unpredictable. Treatment is now largely based on symptom severity, not just on "keeping the patient alive." No CHF patient should spend a long time uncomfortable, no matter how near "the end" they are. That's my sincere belief. With the treatments available, a CHFer should be able to be comfortable until very near their death. The key to this is aggressive treatment. What confuses many people is that the same aggressive treatment used "to keep the patient alive" is also the treatment most likely to make them most comfortable.
     Extremely severe CHF, as seen in Class 4 CHFers is rarely relieved by oral medication, however there are exceptions. Demadex is more powerful than Lasix and Bumex is far more powerful still, and available as an oral diuretic from the local pharmacy. Once diuretics fail to relieve congestion and edema, there are inotropes like dobutamine (Dobutrex) or dopamine (Dopastat, Intropin) available to make the heart beat stronger, thus relieving most CHF symptoms (info on these is available on or through my other pages). Also available are Primacor and Inocor, which have a different action but the same result, a stronger heartbeat. These may be given out-patient if the patient or family is up to it. If a patient has an arrhythmia that makes some inotropes likely to cause sudden cardiac death, perhaps entry into a trial of an IV drug like Nesiritide (Natrecor) is called for. This drug is not pro-arrhythmic and will almost certainly be approved for general in-hospital use soon. Until then, an on-the-ball heart failure specialist will pull out all the stops to get a patient on such a drug in a trial, if not through a rules exception. TNF antagonists (injections) are being tested, which provide another possibility for treatment of severe CHF. IV immune globulin is another possibility, as are endothelin blockers. Combinations of the above may be effective at relieving symptoms when any single treatment fails.
     My point is, that a CHFer - even in "end-stage" heart failure - need not suffer, certainly not over a lengthy period of time. Now, I'll try and get more to your specific question: Up to a point, the aggressive treatment that extends life also relieves symptoms. The only real way to know when the point has been reached to use therapies to relieve symptoms even though such therapies may actually reduce life span, is when all other options fail. That is really the only way to know that a patient is near death - when nothing works anymore. The same treatments can still relieve symptoms, except that doses may be needed which could increase chance of sudden cardiac death or long-term, even medium term, organ failure. At this point, symptom relief should take precedence over safety, as long as this is agreed to by a competent patient and a knowledgable doctor. Now is a good time to point out once again how important it is to get a good heart failure specialist! That isn't aimed specifically at you, Cathy, it's a point I try to make often. The "right" CHF doc is not just good at his job (keeping you well) but is a person you feel comfortable with, can talk to freely, and honestly think you can trust with your life and death decisions.
     If the doctor your mom now has is not concerned with relieving her symptoms, or you do not perceive him to be, the first thing to do is talk to him, preferably in the presence of your mom, after having talked honestly with her about your feelings. As awkward as it is, if you can't talk to her honestly about these things, you really have no right to talk with her doctor about them. It's her life. Again, I am bringing up what I believe to be valid points, not aiming anything specifically at you, Cathy. I have no idea what your relationship is with your family and I just don't want to miss any bases. After such a talk with the doc, if you or your mother are still not satisfied, get another doctor's opinion (a doc not affiliated with the same clinic as doc number one) and do it now! This is critical. Remember that this is her life, not some theory. A doctor's feelings or standing in the medical community don't mean a thing if you are not content that treatment is the best possible.
     Well, I've rambled more than enough. Although I am obviously not capable of using just a few choice words to express myself, my point is this: the end is near when no "standard" therapy works anymore - but be sure that what the doc is calling standard therapy really is the best possible treatment before accepting that it isn't working. At that time, look for therapies intended for "acute, decompensated CHF" rather than chronic, long-term disease management. A good CHF doc will help you find them. Look into higher doses and drug combinations. If all else fails, talk to hospice in your area. They are available through the phone book or the hospital social worker. They are accustomed to "end-stage" disease patients and their families and will try to relieve symptoms, if your mom's doctor isn't.
     Jean, I hope this helped you a bit also. I have no way to know how much aggressive treatment would help your mom but it will not just keep her alive, it will also relieve her symptoms and keep her quality of life closer to where every person's should be. Go with God. Jon.


Jon's July 2 reply to Pam's July 2, 1999 - Hi Pam, Welcome to The Beat Goes On. My advice is to get another doctor pronto! Get a CHF specialist, as opposed to a "regular" cardiologist. Here's a letter I wrote to someone else about getting a heart doc:

  1. post to the heart forum and ask anyone happy with their doctor who lives in your general area to contact you by e-mail
  2. use the doctor finders at the Links page or go through your insurance provider's "covered" list, and then phone the ones you pick, asking (you may need to ask for the nurses' station or for a call-back from a doctor):

     I hope this helps. For what it's worth, one way to get a better doc is to go ahead and ask for that referral to a transplant team. Their first priority is to get patients well enough not to need a transplant and they are generally pretty good at it. :-) Jon.


Sandi M, July 5, 1999 - Hi, I hesitated whether to post this as I have found this is a very supportive and helpful place for those of us with a CHF loved one. My Dad lost his battle with CHF last Friday. We knew since April we were probably in a losing battle, but his doctor sure gave him the best shot he could. We miss him terribly but know he is in a better place. As my mom has said, he is okay now, we're not. His death was so very peaceful and quiet. I was with him at the time and will be forever greatful that I was privileged enough to see that special man leave this earth. I just want to say how grateful I am to have found this forum. It certainly helped me with the wealth of information you all offered. Thanks for the prayers. Sandi. tm91325@navix.net


Dina R, July 5, 1999 - Hi, I haven't seen people post about getting gout as a result of their medications. Is this a common problem? John has a gout attack almost every 10 days, it seems. He is in a lot of pain and it happens in both feet. His PCP has been giving him shots, but he can't have any more because they have bad side effects when you have too many of them. I am sorry I can't recall what the shot is. Yesterday they called him in another round of Prednisone. His PCP is referring him to a rheumatologist since this keeps happening over and over. jmrice@ipa.net


Jon, July 5, 1999 - Hi everyone, The updates to all my pages are becoming very difficult for me to do. For those who don't already know, geocities merged with Yahoo recently and they have changed the "behind the scenes" operations considerably. Unfortunately, they have completely destroyed what had become a reliable FTP service, which is how I upload all my files and updates to my pages. It doesn't work at all right now. This means I have to use a very slow and insecure method, so I am updating sporadically until they manage to get things running again. I apologize for the delays but I'm just too tired to use constant work-arounds for now.
     My mailing lists are becoming nearly unmanageable recently due to the number of messages bouncing from AOL and WebTV. You may not be receiving a large number of messages that are being sent to you due to AOL never getting them all the way to your mailbox. I have been receiving reports of the same problem from others, so I now know it's not just me. :-) Jon.


Carolyn B, July 6, 1999 - Hi, This is just a plug for the Salt free section site link. Thanks! I am trying very hard to cut the salt in my 13 year old's diet, and all of our diets. She has DCM and is on low dose Lasix and other meds. The recipe I tried was Baked brown rice, using a rice and lentil combo. Now, my 13 year old rarely if ever eats lentils but she liked this recipe! I explored our local store for no sodium, low sodium products. It looks grim. I am going to have to go exploring elsewhere. I was told trader joes and the like are good but I have never even been to one so I guess I will have to venture further. littleone@integrityonline.com


Lyle, July 7, 1999 - Hello, My father has suffered heart problems for several years including a heart attack, bypass surgery, and finally culminating in near-death heart failure a couple of weeks ago. He swelled up like a balloon and could barely breathe. He is much better now but very confused about what options he has in dealing with his disease. He has an ejection fraction of 25% and is taking blood pressure meds, Coumadin and diuretics, but none of the CHF drugs like Coreg or digoxen. I was hoping that someone out there could point him in the direction of a CHF specialist either in Salt Lake City or the Tuscon area. A recommendation would be very, very helpful. He needs a doc who can communicate and treats him like a human, not a chart. Thanks in advance. If you do have a doc recommendation, please send it to lyleboyer@aol.com


Pam's July 7 reply to Sandi M's July 5, 1999 - Hi Sandi, I just wanted to say I'm sorry to hear that your father has passed on. You are right, it's so much harder on the ones left behind. You are in our prayers. Pam. woo_conley@hotmail.com


Pam, July 7, 1999 - Hi, I wanted to thank everyone for their encouraging words and information in response to my post last Friday. It's helped a lot to calm our worst fears while leaving us with a realistic view. My husband, Rick, still wants to wait until after his next tests on the 23rd before changing doctors since the tests are already scheduled. It's some kind of treadmill/drug to stimulate his heart then dye to track the blood flow. It is supposed to let us know if your EF is any better. A couple of months ago, it was 30%. I don't know what else this test will tell. I'd like to know how damaged his heart muscle tissue is and whether or not it's reversible. I have to read more about these tests. Also, is there some way I can convince him that he needs to really cut back on sodium? This doesn't seem to be something he thinks is important or worth doing, especially since the doctor(?) didn't even mention that it was something he should do. Thanks. Pam. woo_conley@hotmail.com


Ann Marie K, July 7, 1999 - Hi, My mother is 85. She is in the hospital for the second time in 48 hours. Her CHF seems to be getting worse and on top of that she has beginning renal failure. The doctor has been hesitant to give her Lasix in large amounts because of her kidneys. She is on 20mg Lasix 3 times a week. I believe it is better to keep her on higher Lasix and if she needs dialysis, then that's what has to be. Has anyone got any ideas about this? I cook all her food and her sodium consumption is under 300mg a day. About 5 weeks ago, she was in the hospital and had a dopamine renal infusion, is this something that can be done on a regular basis? Her doctor says that she is skateboarding on a cliff. I realize that she is 85 but whatever time she has left, I want her to be comfortable and out of the hospital. Metaphlady@aol.com


Rebecca G, July 7, 1999 - Hi, This is my first time to visit this message board. I was so thankful to find the CHF board. My husband was hospitalized in April. His echo test revealed serious CHF, with an EF of 10-20%. Why do some CHFers know a specific number and we don't? Is it just that we didn't pinpoint the doctor for one? Elton was sent home with instructions to take a month off work, take the prescribed medicines - lotensin, Lasix and some others - begin a strict low-sodium diet, etc. A month later and 25 pounds lighter, he returned for another echo test. It showed no change in his EF. We were so disappointed because he looks so much better and feels better than he has in years. We just think, "How can he not be better inside?!"
     My husband and I returned to his primary care (GP) physician a couple of weeks ago. Wow! It's like every time we see a doctor, a new burden is unloaded onto us. We were given all the statistics. Is it 50% or 10% of CHFers who live longer than 5 years? We were told 10%. We are highly pleased with our GP and also very impressed by the cardiologist. However, reading through the CHF messages together were so enlightening! My husband coaches; he's 54. A week after the GP visit, my husband's superintendent called. Evidently, their checking around for a new health insurance had caused red flags to be thrown up regarding Elton's employment. Elton was just trying to adjust to a cardiologist's recommendation that he not coach in 1999-2000; now, it looked and sounded like the school might not have a job of any kind for him. We were so down and so scared. The good news is that they will find some job assignment for Elton.
     Some of our million questions are: "Do we still pursue Disability? Do we hope again for EF improvement at the August checkup or do we just accept the prognosis? Why has our cardiologist only said, 'That's the range in which we sometimes recommend a heart transplant' and not actually recommended beginning the screening to allow being put on the waiting list? How do we keep the doctors if or when his job ends? Where does one turn? How does one know what next step to take?"
     Well, enough said. We have so many questions. We feel so much in a quandary. Again, it is so good to be able to communicate with others who understand and are experiencing the same things. Rebecca. RebeccaG99@aol.com


Pam, July 8, 1999 - Hi, My mother has been diagnosed with CHF. She lives 3 hours from me and my sister takes her to the doc. He said that her heart valves are "rumbling badly." What does that mean? He has never mentioned valve replacement surgery and is supposed to be very good. My mom and sister are of the generation that does not ask questions like, "What about surgery?" She is 85 and before this was in very good health. Peboze@aol.com


Margi M, July 8, 1999 - Hi, My 94 year old mother-in-law has CHF. She seems to be doing very well, but complains of feeling like her head is in a box all the time. She sounds congested but throughout several visits to the doctor, x-rays and MRIs, nothing has been found. Does anyone know if this is a side effect of CHF. We have been told she has about 15% heart function. She lives in assisted living in a retirement community. She walks up to the dining room for meals, to get her hair done and to play bridge. Her voice sounds really weak. Any clues as to what look for would be greatly appreciated. moul@bright.net


Ashley J, July 8, 1999 - Hi, My grandfather has CHF. He has lost a lot of weight but eats like a horse! He has shortness of breath and had a massive amount of fluid drained last year from around his heart. He is currently medicated with fluid pills. What is the typical life expectancy of someone with CHF? Thanks. ash112099@aol.com


Jon's July 8 reply to Dina R's July 5, 1999 - Hi Dina, A lot of diuretics can cause gout by increasing the uric acid level. I hope some people who have gone through this e-mailed you since I know there are some people 'round here who have this problem. Be sure to use the site search engine found at the Site Index also. Although it is far from perfect (it's a freebie), I got some good returns on a search for "gout." Jon.


Jon's July 8 reply to Pam's July 7, 1999 - Hi Pam, This is another very telling reason to get another doctor, but quick. In Dr. Marc Silver's book, (1998) Success With Heart Failure on page 75-77, he discusses how critical limiting dietary sodium really is. After a full page of explanation, he says quite simply and I quote, "Sodium restriction, then, is critical." Jon.


Jon's July 8 reply to Ann Marie K's July 7, 1999 - Hi Ann Marie, Welcome to Jon's Place. I am not a doctor and I am not familar with kidney failure but there are a lot of diuretics around that can used both orally and intravenously, including Lasix, Demadex, Bumex, Aldactone, Diuril, Dyrenium, Edecrin, Hygroton and Midamor. Lasix is not the only choice and certain diuretics can be mixed to increase effectiveness without increasing side effects. Zaroxolyn is sometimes added to increase the effect of some diuretics. This is a case where you need to go to a drug index and start looking up diuretics, both as a drug class and individual drugs, printing out info, circling relevant portions and discussing them with the doctor face-to-face. You can also post to the Cleveland Clinic forum.
     Dopamine is given on a regular basis to some CHF patients and by increasing the strength with which the heart contracts or squeezes, it also helps get rid of excess fluids, which are in fact caused by weak heart contraction in the first place. Other IV drugs also do this: dobutamine, Inocor, Primacor, Natrecor. Some can be given on an outpatient basis and some cannot, also depending on the individual patient's condition. Please get back to us with any updates or information you find out. It might help someone else in the same boat down the line. Jon.


Jon's July 8 reply to Rebecca G's July 7, 1999 - Hi Rebecca, Some methods of measuring EF are more accurate than others. Echocardiogram is less accurate than a MUGA or catheterization but then again, echo is a lot cheaper and safer as well. So, your doctor may give you a "range" for that reason or because he realizes that EF can vary from day to day and month to month. Please be aware that EF is not the "end-all" of CHF condition. It is a good tool for doctors and patients alike to use in measuring progress or lack of it but it is not nearly as important as how you feel. That comes straight from my own CHF cardiologist.
     I would go ahead and file for Disability if the doctor thinks holding a job may soon be a problem. Many of the underlying causes of CHF can be progressive and get worse over time so it can be a good idea to go ahead and "get the wheels in motion" so to speak.
     Have you read my transplant page? Others transplant pages? It's not always a good idea to get in a hurry for a heart transplant. The doctor may just be making you aware that it could be necessary down the road - "softening you up" so to speak. Discuss this and all your questions face-to-face with your doctor. Don't hold back. These are issues that you need to be very clear on, and open, honest communication with your heart doctor is critical.
     Knowing what to do next will be helped enormously by your level of self-education about this disease, its treatment, available drugs and therapies, and by communicating with others who also have to cope with the same issues. You can do all that right here, or at least, this is an excellent place to get started. Begin by reading The Manual and take it from there. Ask all the questions you want; that's why we're here. Be sure to check out Jesus Christ as a resource as well. He is what keeps me coping and going like the Eveready bunny (see "Spiritual" in the Site Index). :-) Jon.


Jon's July 8 reply to Pam's July 8, 1999 - Hi Pam, I honestly don't know what that means. It's a very subjective way to describe a problem and you should pin down the doctor about exactly what he means. I'm sorry I can't be of more help but only he knows precisely what he means by "rumbling badly." Jon.


Jon's July 8 reply to Ashley J's July 8, 1999 - Hi Ashley, Welcome to The Beat Goes On. Have you read The Manual yet? Give it a read and then please come back here with all your questions and we'll answer them as best we can. Jon.


Dina R, July 9, 1999 - Hi, A little heart humor: John had his pro-times checked today and the doctor's office called to tell him to lay off the Coumadin for a few days, as his were at 6. Being all worried, I said, "You've never been a 6 before!" His reply was, "Baby, I've been a 10 all my life!" jmrice@ipa.net


Pam C, July 9, 1999 - Hi all, I just saw that there's another Pam so now I'm Pam C. Rick's tests (I think it's a MUGA) has been postponed until July 29 because he's going for a job interview in Michigan July 23. We want to get him back close to his folks in Ohio since he may only have a few years left and we can't see them very often from here in Las Vegas. The job is for Director of Marketing Research at a college in Central Michigan. I'd have to find work there, maybe at Michigan State. Eventually, I'll be the only income. He's trying to figure finances so he can retire in 5 years, if he can even work that long. Cost of living is much cheaper in the Midwest too, so we can get by with a lot less. We'd get a much cheaper house and not have to spend a fraction on utilities of what we do here. Last month's water bill was $136 and the electric was $255. You can't do without AC in 110° heat. I hope he gets it even if it means total disruption again. We just moved here in October of 1998. woo_conley@hotmail.com


Ann Marie K, July 10, 1999 - Hi, Thank you Jon for your reply. My 85 year old mother was released from the hospital. The doctor had taken her off of Vasotec a few weeks ago because of her kidneys. He has put her on 12.5mg Hydralazine 4 times a day. I believe that this is an old fashioned drug that is supposed to not do any renal damage. While in the hospital, she had a dopamine infusion again. The doctor told us that this is something that can be done on a regular basis, but can increase the chances of sudden cardiac death. The doctor mentioned dialysis for the first time to my mom and said in maybe 6 months or a year. My mom is also diabetic, so it's quite a juggling act. I have learned so much from the site and am able to talk to the doctor about options. God bless to all. Metaphlady@aol.com


David G, July 11, 1999 - Hello everybody, Has anyone heard of a self-administered protime testing machine? My wife's cardiologist said he has heard there was testing of this device but doesn't know much more. It operates like a glucometer with finger sticks. Any help is appreciated. Dagrez@aol.com
 
Jon's Note: I think Roger has one. His e-mail is rdconnel@bellsouth.net. Jon.


Lea Anna M's July 12 reply to Ann Marie K's July 10, 1999 - Hi, This is my first post here but I thought I would write because my mother is in the corornary care unit at St. Lukes in Houston, Texas. Her kidneys have been beginning to fail for a while and now they fear that they are faltering altogether. Her cardiologist told my dad that he doesn't think her heart can withstand dialysis, so they are treating her with various combinations of drugs to get her cardiac output up without causing her to go into kidney failure. They are talking about putting in a shunt to administer dobutamine at home. I guess that this is not done very frequently but they are trying to get her heart to work better. It is frustrating for me because I live in Minnesota. She is only 66 and has diabetes. I am asking for prayers and whatever support I can get. I was told that the Texas Heart Institute was one of the best. She has been in the hospital 3 times in the last 3 months, the last time being a week ago. I hope they can make her more comfortable. Has anyone heard of having dobutamine administered at home? Thanks. LeaandPete@aol.com


Bette, July 12, 1999 - Hi Jon, Is your page still accessed via the AOL health pages? I tried the other night and couldn't find it. Thank goodness I put it in my favorite Websites. wsh3rd@aol.com


Jon's July 12 reply to Bette's July 12, 1999 - Hi Bette, I have no idea. <g> I assume someone would have to suggest the site to AOL and since the site is now a Yahoo-geocities site instead of a geocities site, the information needed may have changed. It might need to be re-submitted, which I cannot do myself because I have always rigorously avoided AOL so I know little about them. Feel free to ask them to list the site,if you'd like. :-) Jon.


Alice P, July 12, 1999 - Hi, My husband was diagnosed with CHF in April of 1999 but I'm sure he had it for awhile before then, while he kept refusing to go to the doctor. His legs were very swollen and I think his abdomen and sometimes his face were swollen as well. The diuretic has helped such that he is back to shoes only one size larger than normal but there is still a lot of swelling. He eats a lot of processed foods and contends sodium must not be a problem because his blood pressure is good. His shortness of breath is getting worse. Has your experience shown that sodium intake makes a big difference? Is blood pressure normal in your relatives with CHF, and do you note any relationship between this and sodium and CHF? primack@mail.uflib.ufl.edu


Karen D's July 13 reply to Alice P's July 12, 1999 - Hi Alice, Processed foods are full of sodium and sodium is one of the causes of fluid retention in CHF. My husband has dilated cardiomyopathy and was diagnosed last fall with CHF. He is limited to no more than 2,000mg of sodium per day. We usually keep it to well below 1,000 and some days it's no more than 500mg. Almost anything canned is out, unless it says "no salt added" and then you still need to check the label. Meats like bacon and ham are gone from our diet! He is also limited to a total of only 2 liters of fluid per day. This includes soups too, so it adds up really quickly. You should do everything you can to help your husband cut down on sodium and fluids. The shortness of breath is a direct cause of extra fluid building up around his heart. You also asked about blood pressure. Bill's doctors try to keep his under 100 but it generally runs about 110 over 70. Good luck to both of you. E-mail me if you want to talk some more. Karen D. deitemey@kua.net


Rick M's July 13 reply to Alice P's July 12, 1999 - Hi Alice, Getting sodium under contol is the most important thing a CHFer can do for himself. Read The Manual and start today. Sodium comtrol is not about blood pressure, it's about fluid retention and the load on your heart that this fluid represents. Stop the processed food at once and start reading labels. A can of Campbell's Chicken Soup contains almost a full day's allotment of sodium for a CHFer. Add a cheese sandwitch and that's it for the day! You only get a few chances to get it right, so don't delay. rearadml@iu.net


Jon's July 13 reply to Alice P's July 12, 1999 - Hi Alice, See Jon's July 8 reply to Pam's July 7, 1999. Jon.


Helen R, July 14, 1999 - Hi, My father, age 93, recently moved several states away to live with a niece and therefore out of my observation of his medical condition. He has never been hospitalized with CHF but has had 2 heart attacks since the age of 80. The new doctor took him off 50% of his Coumadin and replaced it with aspirin and also took him off his heart medication. He now is hospitalized with CHF as his legs began to swell a great deal. The heart medication was making him dizzy and the doctor said he would prefer to deal with the CHF than have him break his hip in a fall. He has had several falls and refuses to use a walker. Has anyone heard of this aspirin replacement therapy or the concept of taking a patient off medication for the heart to control dizziness? I am, unfortunately, not able to contact the doctor and must get all my information secondhand from the niece. reynpaul@bellsouth.net


Jon's July 14 reply to Helen R's July 14, 1999 - Hi Helen, Welcome to The Beat Goes On. Aspirin therapy in place of Coumadin is actually the preferred method of preventing stroke for heart patients who are not directly at high risk for stroke. You are at high risk if you have had previous stroke or strong family history of it, or have chronic atrial fibrillation. A small dose (85-200mg) is generally considered better than large dose (325mg) but that's because of a small possibility of high aspirin dose conflicting with heart meds, which your dad is no longer taking. I don't understand that and haven't heard of it before. Maybe someone with personal experience could comment (I hope).
     You didn't say which meds he was on but I am surprised a lot of meds and dose juggling didn't occur before just stopping all his heart meds (or maybe it did?). It might depend on the underlying cause of his CHF and whether diuretics alone could control it. Cautious use of diuretics along with careful blood monitoring to control potassium level should help without causing dizziness. Thiazide diuretics might be enough to control his edema instead of going to loop diretics like Lasix. Dizziness from diuretics usually only happens when a person becomes dehydrated or electrolytes get out of whack, which can be prevented with that careful blood monitoring and possibly with Rx potassium. Without being able to ask the doctor directly, about your only hope of getting truly useful info is to send a written list of questions to the niece and ask the doctor to send her written replies which she could forward to you. As most of us know, getting questions answered through a middleman often muddies the waters. Jon.


Charlie, July 14, 1999 - Hi, My wife has CHF. She is being treated with many medications, has a blood test every 1-2 weeks, is doing fairly well and maintaining a good diet. She can't seem to drop any weight but she is not gaining. She checks her weight daily and her blood pressure every morning. Her short term memory is gone, but she is still able to work, although lately I have noticed that she has been losing control of her bowels. Has anyone out there had that same problem, or is this unique for her? She is going to the doctor in 2 weeks and just wanted to be heads up on this before we go. ccasonsr@aol.com


Irish, July 15, 1999 - Hi, This site has been a real gift. It seems as health issues crop up, you tend to isolate. We are active in our church and active in the management of my husband's heart disease. We have 7 year old twins (boy/girl) going into second grade. My husband's father died suddenly at age 43 after a heart attack. My husband's first known heart attack was at the age of 43 and it was massive. He was in the ICU for 2 weeks on a dobutamine drip. He made good progress and lost weight from 305 to 250. He returned to work with some limitations. We lived the next year or so as though it might be his last. After 2 years, we decided to have a child. We were doubly blessed.
     When the children were 2, he began experiencing gout and rheumatoid arthritis. High dose steroids over a period of time demineralized his bones and he has multiple spinal compression fratures. The next few years were complicated with a hip fracture, which took 5 days before they could operate due to high pro-time levels, then pneumonia. The next year he experienced fulmanent pulmonary edema, an acute crisis from which we almost lost him. His remaining 60% heart function was reduced to a 95% loss and he was not a candidate for bypass. There were no options. He came home, thank the good Lord and was making slow progress. He then fell and broke his right tibula and fibula, requiring strict bedrest and no weight bearing for 8 weeks. Although he has been in and out of CHF, not until last November did he swell so much that he leaked fluid from his skin. This was thought to be from protein deficency. His weight is now down to 160 even with the fluid. He requested to be hospitalized for hyperalimentation to improve his protein absorption. During the evaluation to determine if it GI or cardiac, he had a stroke, related to a-fib and stopping Coumadin for all the tests. He spent what the children refer to as 4 holidays in the hospital: his birthday, Christmas, Martin Luther's day and presidents' day. He went to a rehab facility but because of his CHF, weakness and shortness of breath, he was unable to participate.
     His recent evaluation showed severe mitral regurgitation. One of the leaflets was not moving at all. He was deemed to not be a candidate for valve surgery. We explored in Gainsville a transplant but since he is managed at home and not confined to the hospital, he is not recommended for the program. We go to an outpatient CHF clinic every 2-2½ weeks for a Primacor infusion. They say it will take some time but eventually his heart muscle should reshape some, helping with the mitral valve problem and also with cardiac function. He saw his cardiologist this week and was told he was not in CHF and was "significantly better." Funny, he dosen't feel better. really.
     Is heart failure class 4 different than CHF? His ejection fraction was last measured around 17%. He now weighs 122lbs. He is 6'3" if he could stand up straight. He eats but doesn't gain weight unless he is swelling. We really don't know what to make of the doctor's last comments regarding not in CHF and being better. The doctor also asked a bunch of questions about what might be going well or be positive in our lives. It seems that he wants us to concentrate on the positive. My husband is nothing short of a miracle over and over. God is using this experience to grow us and help us to be what he wants us to be. We accept that no one knows the time we have remaining. Our children have such empathy for anyone in need. They are learning lessons rarely taught to people so young. Yes, it is frustrating. You feel like sometimes they aren't being straight but it must be hard for them to run out of options and not have further therapy to offer. We go for Primacor tomorrow. We have lots of financial decisions, social decisions and family concerns to consider. Again, I'm confused. Can you be in heart failure if your doctor says you are not in CHF? Thank you all for sharing your story. I will pray for your situations. I am sorry to post such a long message but as you can see, this has been an 11 year journey, each day a gift. Thank you so much for your support. dferrell@mediaone.net


Rachel, July 18, 1999 - Hi, I have not posted in several months but I now have a bunch of new situations popping up. My husband is 28 and has idiopathic DCM. He was diagnosed in March of 1998. He is doing well and just had an echo, EKG, and chest x-ray performed. The general result is that his heart has improved. My smile is huge right now! I am very much pro-prayer, Coreg, and CoQ10 now. I don't know the specifics on the amount of improvement yet but I figure you take what you can get. Here are my questions.

  1. He saw a different doc in the cardiology group than he usually sees; Bad move. This guy came in and more or less chastised us because Shawn has not yet had a cath. There are a couple of reasons why that has not happened. His regular cardiologist has not said it is time to do it. It has been discussed but Shawn doesn't want it unless it is clearly necessary. So far, the doc hasn't felt that it is. Shawn is not scared of dying; he is a Christian. He is afraid of the stroke risk and living as an invalid. How do you determine when the good to be gained far outweigh the risks?
  2. Believe me, I am one of those staunch believers that you are a customer and the doc is there to serve, but I could get nothing of value from this man other than the fact that he scheduled an echo, EKG and x-ray. I figure this will help out the regular doc. The new doc did ask if there was a family history of DCM. He hinted that something could be done to "cure" Shawn if there was, and that this could be determined by the cath. What is this about? This was news to me.
  3. I asked about a family connection last year when Shawn was diagnosed because I knew both his mother and grandmother had heart troubles. I was assured by the the family that their troubles were different. I should have been more insistent. Yesterday I decided to investigate the family connection a little further. I found that Shawn's grandmother has had an enlarged heart with a leaky valve for 30+ years. It was officially diagnosed as hypertrophic cardiomyopathy in 1990. She is 70 years old now and has a pacemaker. Shawn's mother has an enlarged heart and leaky valve as well. She calls it a rheumatic heart. I have asked her to please get the official medical diagnosis. Chances are good that she either has HCM or DCM. Either way, what are the implications of this familial link? If the mother and grandmother both have HCM, does that hold any type of correlate for Shawn? If Shawn and his mother both have DCM, what does that mean?
  4. Shawn is under a lot of stress at work right now and possibly even depressed. He has occasional panic attacks due to the CHF/DCM. Are mild tranquilizers or anti-depressants ever prescribed to CHF/DCM patients?
  5. We are considering having our first child now that we know he is stable and even improved. Does anyone have experience mixing this with the heart condition?

     Maybe if I wrote more frequently, my posts would be shorter! Shawn and I will go back to his regular cardiologist on the 26th, and I would like to have all the info I can have by then. Thanks so much! sfields@iquest.net


Rob, July 18, 1999 - Hi, I've posted a few times regarding my wife (age 40) who has CHF. Here's an update and a question. Nancy has the benefit of having a good, knowledgable doctor associated with Stanford. She's taking all the normal CHF medications and is at the top Coreg dose. She also takes 50mg of CoQ10 daily. She feels better than she has in a long time and except for an energy lag in mid afternoon, she is not very symtopatic. One problem she's having is that she's often lightheaded to the point of having sort of washed-out vision problems. The doctor claims this is due to low blood pressure but as yet, he does not want to alter her medications. Has anyone else had experience with severe lightheadedness? Thanks in advance! reesor@peoplescape.com


David G, July 18, 1999 - Greetings all, My wife just received an ICD this past Monday. Besides the surgery, she is having a hard time coping with the weight and size of the implant. Can anyone offer some insight as to how long it took them to adapt? Her's is slightly different from most since it is primarily to deal with atrial fibrillation with a back-up for ventricular fib and a pacer that kicks in if needed. It weighs about 80 grams and is the size of a bar of soap. The device is still considered experimental but has shown good results for patients with chronic a-fib who are not amenable to most medications because of long term side effects and her age (30). Thanks to anyone who can help. Dagrez@aol.com


Linda Grant, July 18, 1999 - Hi, Are digestive problems common in CHF? My husband has a terrible time after he eats with bloating and pressure in his intestines. I assume the digestive tract does not work that well with this condition. Any good suggestions to help him with his meals and digestibility troubles appreciated. a3a65689@bc.sympatico.ca


Pete E, July 18, 1999 - Greetings, I am stopping by from the patient side to let you know about a new book you may be interested in. The patients at the transplant center where I am being treated have gotten together and written a book. It is a collection of individual experiences of people waiting, or having gone through a heart transplant. It is a must read for anyone who has heart problems or a loved one with heart problems of any type. All of the proceeds are being used to set up a fund for transplant patients and their families in Minnesota. You can order a copy from my web site at www.healthyheartmarket.com, in the books section of the store or call me toll free at 1-888-685-5988. I have to reproduce what Dr. Marc Pritzker, Medical Director of Heart Failure and Transplantation at the Minneapolis Heart Clinic wrote for the back cover.

     "Death, suffering, rebirth and humor are the stuff of great literature. In these stories, told by real people in their own words, we learn about the sorrows, joys, ironies, fears and trials of people at the edge of their existence. These people show us what it means to be human, reminding us that life is precious and unpredictable."

     Thanks. Pete E. Peiden@skypoint.com


Susanna, July 18, 1999 - Hi, I just found the Internet and Jon's Place. This is great, thank you! My mom is 82 and has had CHF for years and still doesn't really understand it. I think she has recently changed from functional class 2 to class 3. I am sending her 12 pages of info that I got today. I can tell from my reading today that she has a bad doctor. No questions or answers, and he is always in a hurry. She needs to find a good doctor in Humble, Texas. I live in another state. What is an efficient way for her locate a good doctor? I just suggested that she contact the local heart association about a local support group. I'd really appreciate hearing from anyone, especially from around Humble, Texas. Thanks! sueb607@atlantic.net


Ruthie A, July 19, 1999 - Hi everyone, I almost lost my mother yesterday. She woke up not able to breathe and just felt bad all over. The nurse at her assisted living home had a really hard time finding her pulse and her blood pressure was barely measurable. She was taken to the hospital by ambulance where the doctors found "skipping beats." My guess is she was having some type of arrhythmia. She was in real trouble and was scared, but is feeling a bit better today. She will be on oxygen from now on, and her CHF is approaching class 4. Even though she is only an hour away from me, I cannot go to see her yet as I am struggling with CHF myself; Makes me kind of discouraged. I almost feel as though she and I are in a competition to see who can feel the worst. Ruthie A. rlaba@preferred.com


Dina R, July 20, 1999 - Hi Jon, If you have an ICD in, how do you die? I mean, it paces you when your heartbeat gets too slow and it shocks you when it gets too fast, so when can you die? If you have too many shocks close together? Or do you just get weaker and the meds cause you to have other medical problems that make you die? It seems like the ICD takes care of everything, so how do they decide if you need a transplant? jmrice@ipa.net


Jon's July 20 reply to Dina R's July 20, 1999 - Hi Dina, An ICD can stop most cases of sudden cardiac death but it is not 100% effective against SCD. A heart that simply cannot function will refuse to be re-started. A weak heart can also lead to a weakened immune system that can leave you open to other illnesses. A weakened heart can simply not be up to supplying your body with enough oxygen, causing death from "pump failure." Other organs like your kidneys or liver may go into failure due to lack of oxygen. Your body's ability to make use of the oxygen supplied by your heart (Vo2max test) is one major prognostic tool to help decide when it is time to transplant. EF is another measurement that helps decide this. These measurements, along with others, and the judgment of an experienced CHF doctor can lead to wise timing on heart transplant. I hope this helps. Jon.


Joyce, July 20, 1999 - Hi, Today my husband's BP is 203/112 with a 58 pulse. I know the BP is bad but can someone tell me what is considered to be a low heart rate? Is 58 getting low? He is feeling weak and tired, and has gone back to bed for awhile. I can't seem to get him to go to the doctors anymore because he knows they will keep him. He goes so much anyway. He does have an appointment next week with his cardiologist but was concerned for now. jas48@webtv.net


Jon's July 20 reply to Joyce's July 20, 1999 - Hi Joyce, It depends in part on his meds. Some meds slow heart rate intentionally. A low heart rate combined with high BP doesn't sound real good to me. Try to get him to be as active as possible in his own care, learning about his meds and what they do, his illness and its treatment in all aspects. That way, he won't dread seeing the docs so much because he will know exactly what is going on and why. He will also feel more a part of the process. For now, I would recommned a call to his doc to be on the safe side. Jon.


Dona, July 20, 1999 - Hi, This is just an update. My 66 year old mother was released from her first hospitalization and diagnosis with CHF on July 4th. By that time I had found this site (thankfully) and others as well. She has a condition called A-flutter as well as low blood pressure. The low blood pressure was the kicker - every med they tried to slow her heart rate dropped her pressure through the floor. She was finally stabilized enough to go home. Her next appointment with the cardiologist is July 28th. She has had one since leaving the hospital. At that time, he wants her decision on treatment method to be pursued: Pacemaker or shock. He said if she waits much longer, she won't have the option and will have to go with the pacemaker. Her heart is currently working at 40% capacity. During her hospital stay, a clot was found behind her heart. The doctor says they can still do the shock since they know it's there and can monitor it, if it breaks away during the procedure. She has been on Coumadin since June 28. Her med regimen consists of C1oumadin, Lasix, digoxin, Cordorone, lopressor and accupril. Mom says she feels comfortable with this cardiologist but I have been trying to get her to see another for a second opinion. She lives in the Newburgh, New York area. Does anyone have any recommendations? Also, I just read an article about new findings about the existing drug, which looks good. Thanks again for being here. cw2reitenbach@hotmail.com


Jon, July 20, 1999 - Hi everyone, For Aldactone (spironolactone) information concerning the RALES study, please see this post on the CHFers' forum. Jon.


Rebecca G's July 21 reply to Jon's July 8, 1999 - Hi Jon, I'm sorry it took me so long to find your message. You amaze me in that you read and sincerely consider every person's message and situation - on both message boards. Thank you. Elton goes for his first disability appointment tomorrow. How I wish he'd be one of those who just "breeze through." Elton has been working at a snow cone stand which my son owns. The doctors said okay to that but what do they know? This is real work, not play. Lately he's been down, droopy. All he'll say is he's just tired. I think he really is and that concerns me. I think he needs to cut back on that work. I had Elton read your SS Disability page today. Everything you do helps! Thank you. RebeccaG99@aol.com


Josi, July 21, 1999 - Hi, My dad (age 80) has CHF and after a dobutamine "tune up" is now taking amiodarone (Cordarone). He is still on Coumadin as well as aspirin. That surprises me since there is some interaction there. Any advice from an amiodarone taker? dfisher222@aol.com


Barbara, July 22, 1999 - Hi, I have been ckecking this site lately, since my father has CHF along with other problems like decreased kidney function. I have been taking him to his cardiologist and also to his regular doctor lately. My mother died 2 years ago and he is living alone. He has been averaging a week-long hospital stay every 6 weeks since December, 1998. Lately he has been very short of breath but his cardiologist and the doctor that performs his angiograms and catheterizations say his heart is fine and are treating him lately with a nitro patch. My sister wants him to live with her and we have given notice on his apartment. He will be out by September. I think he is depressed since all he wants to do lately is sleep. He comes to my house and falls asleep a lot. I'm really worried about him since he can't seem to move much lately. Any ideas and thoughts are appreciated. Great Website, Jon. bskiver41@hotmail.com


Barb, July 24, 1999 - Hi, I posted for the first time the other day about my father. I want to say that I have copied so much information from this Website because it seems to have what I'm looking for. I really like the input from everyone. The other day at my father's cardiology appointment, his doctor mentioned putting him on Aldactone. That's why I came back to this site. I was looking for information on it. I was surprised to find that there was a study on it. His doctor never mentions his CHF, he only wanted to try him on this, he said, because it doesn't deplete the potassium as much as the Lasix and Demedex he is currently taking. I couldn't believe he wanted to add this med on top of the other two. When I called his doctor's office the other day to ask why he never gave us a prescription for this, his nurse said he crossed it out and prescribed a nitro patch instead. I don't know what this will accomplish. My father wants to sleep all the time now and I don't know if this is a side effect or depression, because he thinks there is nothing more that can be done. I am surprised my father's doctor never mentioned that there is a staging of CHF. From what I've seen listed here, I can see by my own notice of his symptoms, that he is a class 3. Any comments are appreciated. bskiver41@hotmail.com


Carolyn, July 25, 1999 - Greetings, This is an update on our younger daughter with DCM. We are into our fifth week of antibiotics for her sinus infection. She was on a too-low dose for 3 weeks! We are concerned about the stess, physically, and fluid congestion. Thanks for having a low-salt link. I got a catalog in the mail and sent my first order. The company is Healthy Heart Market through the Links page. For my teens, I ordered a lot of the sauces, which are unavailable locally where I live. The cost was really reasonable! It saves me about a 30 mile trip to the stores. littleone@integrityonline.com


Barbara, July 25, 1999 - Hi, I picked up the Aldactone prescribed for my father (which the doctor said to now try) today and the pharmacist, who is a longtime friend, made a strange comment. First of all, the prescription is for 25mg. He said "Now you know this is the one without the diuretic in it." I looked at him puzzled because I thought aldactone was a diuretic! He said he questioned the doc's nurse twice. It seems aldactone is for blood pressure and Aldactazide is the the one that contains the dieuretic. Jon, which one was the study done with? Now I'm confused. I'm not so sure that he needs another blood pressure med. We see the doc in 5 days, so I guess I will get some answers then. I'm also going to give his doc some of the downloaded info and see what he has to say about the study. See ya soon. bskiver41@hotmail.com


Jon's July 25 reply to Barbara's July 25, 1999 - Hi Barbara, I'm sure glad you asked this. Now I know why so many people are confused! Aldactone is an aldosterone-blocker. It is a diuretic. One of its primary effects is increased passage of water and sodium out of the body. "Aldactazide" also contains another different added diuretic in addition to the Aldactone in it. That diuretic is called Hydrochlorothiazide. It is "more" diuretic than Aldactone alone, but Aldactone is very much a diuretic without it. Your pharmacist should be ashamed of himself!
     Low-dose Aldactone (25mg a day) - as used in the RALES study - is not used for its diuretic effect or for its blood pressure lowering effect, which at 25mg a day may not even be noticed. For some reason they are not sure of, a low dose of Aldactone does significantly reduce risk of hospitalization and death for CHFers with class 3 or class 4 CHF. That's why doctors are prescribing it at 25mg a day, not for its diuretic effect. The summary is worth reading. Really. Jon.


Amy Jo, July 25, 1999 - Hi, My husband (age 88) has been in the hospital since June 9 (over 6 weeks) with at least another week to go. I have been reading this site and profiting from the information. I found out that before his hospitalization, his EF was 30%, and he is considered Class 3. However during the hospitalization, he nearly died from kidney failure brought on by a combination of strong diuretics and a blood clot in his bladder. The blood clot resulted from injury inserting the Foley catheter and the vitamin K to reduce his protime, which was over 7. All this with aspiration pneumonia to boot; a real horror story. He is still very weak and I will be a full-time caregiver. I have been busy making no-salt soups and will copy all information from your diet section. His legs are once again beginning to retain fluid since he is now up in a chair. There is no way that I want this man to ever return to a hospital. He is on Medrol for arthritis, Coumadin for atrial fib, 40mg of Lasix twice a day, Cardizem and Imdur. Before he went in the hospital, he was on 80mg Lasix twice a day. His kidneys are now borderline. When I ask about prognosis, I only get non-answers. What can I do other than give him good food, positive encouragement and pray that he dies in his sleep? amyjo1350@aol.com


Linda Hamilton, July 25, 1999 - Hi Jon, Thank you for replying so soon to my e-mail. I agree it is amazing that you can communicate with everyone. I forwarded your e-mail to my siblings, who are as concerned about all this as I am. You suggested that I ask in the heart forum if anyone has a cardiologist here in Pensacola who is proficient in CHF, so I'm asking.
     Anyone in Pensacola who knows a proficient CHf specialist in or around Pensacola, please e-mail me with this information. Again, thanks for all you do, Jon. The Lord truly works in glorious ways. episcola@pcola.gulf.net


Ann Marie's July 25 reply to Amy Jo's July 25, 1999 - Hi, My mother, who is 85, has beginning kidney failure and diabetes, along with her CHF. She also had pneumonia a few months ago after being on life support for 6 days. I am her caregiver. I don't know what the future holds but I know that she has had to be on a very low sodium diet of less than 500mg a day. A few months ago, the doctor put her on a a low potassium diet to save her kidneys. A few weeks ago, her put her on 12.5mg Hydralazine 4 times a day. This medicine doesn't seem to damage the kidneys and it is also very inexpensive. The doctor said it was for "afterload." I don't quite understand it but I know the doctor is desperate to keep her kidneys working. Lasix is used in small doses. I believe that no one can determine how long someone will live. I leave it to God and just take one day a time. Today she's home and seems to be in balance. She starts cardiac rehab tomorrow and I believe that will make her a little stronger and little happier. I know that after being in the hospital for a long period of time, you don't want someone to have to go through that again. I know the future seems bleak but usually with management, your loved one can live a comfortable life. This site is a wonderful resource and the healthy heart market has some very good products. God bless to all. Metaphlady@aol.com


Dotty M, July 25, 1999 - Hi, Can someone tell me what this heat and humidity will do with a class 3-4 heart patient in CHF, and still has to work with no air conditioning in a factory? He has a lot of shortness of breath and some swelling of his feet and ankles when he gets home. Thanks. Dotty M. mckbrown@webtv.net


Jean Henderson, July 27, 1999 - Hi, Thanks so much for your reply, Jon. I hope you know how much good this site is doing so many people. My mother is so much better. She can walk very short distances with her walker now and can stand by herself. I'm not a very big person and it was beginning to be more than I could do, getting her up and down. Probably the best part is that she is more mentally alert. We go back to the doctor soon and I'm going to ask him about some of the other meds. Again, thanks and God bless you for your untiring devotion to a bunch of strangers. n2bimmers@aol.com


Roberto A, July 27, 1999 - Hi, I have 2 questions. Is it better to live in a low altitude city? Because the atmospheric pressure helps the damge heart to work more easily? Logically, a class 4 patient is in more risk than a class 3 patient but, do are all classes a high risk? Or is there a terminal phase on which the patient can't go back to a better phase? ram@gua.gbm.net


Barbara S, July 28, 1999 - Hi Jon, You mentioned that your Aldactone pill had an 85 stamped on it. I looked at my father's new prescription, which is 25mg. His has a 35 stamped on it. Does yours maybe, have a 35 that looks like an 85? That is very strange. Keep up the great work. You are truly a wonder. bskiver41@hotmail.com


Jon's July 28 reply to Barbara S' July 28, 1999 - Hi Barbara, I got out the ol' magnifying glass and it's an 85. Mine is generic spironolactone made by a St. Louis, Missouri company. Jon.


Carolyn B, July 28, 1999 - Hi, This is my first time here and I want to thank Jon and everyone who participates here. My mother is 74, with CHF, diabetes, kidney failure, emphazema and severe arthritis. She also has had a pacemaker since 1989 and has suffered 3 heart attacks. After reading everyone's questions and comments, it makes me realize that I not only need to pray more for my mother but also for those of us who attempt to be caregivers. It can be a frightening task when you don't know what to expect, what is normal, or where to turn. This has been an enlightening experience and I will be praying for everyone and visiting often. Thanks everyone! ToBigSmile@aol.com


Jon's July 28 reply to Dotty M's July 27, 1999 - Hi Dotty, I worked in a lumber mill during the 8+ months I was being constantly misdiagnosed. I was working in heat up to100° with humidity often in the 90-95% range during the summer. There were no windows in our plant, just fans. I took clean tee-shirts to work in my lunch bucket to change into several times a day when I got tired of being soaked to the skin with sweat. Looking back, I see that the heat and humidity made my breathing more difficult but I can't say that it made my overall health any worse.
     I do have a warning though: Be very careful because working in such heat causes salt loss through sweat and it requires more fluid intake to offset that sweating. Balancing all that with CHF, and not starting to swell up, may be tough. Losing salt through sweat, potassium levels may be more difficult to manage and more-often blood testing would be wise. I was swollen a lot back then, even though I didn't know at the time what my real problem was, and drinking all that water probably didn't help. A sit-down job in the air conditioning would definitely be easier on him, but I know how hard it can be to find one with the same pay and medical insurance after getting sick! Sometimes, a "deal" can be struck with the company, allowing a person to change positions inside the company and still be productive without losing much income.
     In the meantime, I would advise a talk with the CHF doc about how to maintain your husband's fluid levels without causing edema, and also about sodium in the diet and sodium lost through sweat, potassium levels, and how to strike a balance that works. See what the doc has to say and get back to us if you can. Jon.


Jon's July 28 reply to Ann Marie's July 25, 1999 - Hi Ann Marie, About afterload: Think of the heart as a pump with pipes going to it and pipes leading away from it. The pipes going to it come from the lungs and they are "preload." The pipes going away from the heart go all throughout the body and they are "afterload." Picture a small pipe and a big pipe with the same amount of water going through them at the same rate, and pouring out the other end. The water will squirt out of the small pipe but only dribble out of the big pipe, even thought the water flow is identical. If the pump remains the same but you make the pipes a lot wider, that pump has less pressure to pump against. This is called "afterload." Reducing afterload lets the pump do less work while moving the same amount of fluid.
     This is done most often for our hearts by making our arteries - the pipes going away from the heart - wider, so they present less pressure for our heart to pump against. Vasodilators like the nitroglycerines do exactly that. They dilate or widen our arteries. Presto - afterload reduction. I hope this helps. Jon.


Pearl, July 30, 1999 - Hi Jon and everybody, My last post was some time ago, telling you that my husband Joe is under the care of Hospice. He was put on spironolactone in March of 1999 by the doctor that does his study on the Buncindolol. About 4 weeks ago, he started getting hard lumps around his nipples. More so on the right side than the left. The site was very painful to the touch and sometimes would go down in size. He recently saw his primary doctor and he said it was either the lanoxin or spironolactone,ruling out the lanoxin because of being on it so long, that most probably it was the spironolactone. He stated that it could get bigger and more painful. Since finding out the reason for the pain and the hardness, he has not even mentioned it. I asked the doctor if they could put him on something different that would be as benifical but he said no. I would also like to again praise Hospice. Since he has been under their care, he is almost pain-free, his biggest problem being that he has little or no appetite. I give him 2 to 3 cans of Ensure every day. He even asks for it. He takes MSCotin for pain in his legs and one of the side effects is constipation. They put him on Senkot-S and Milk of Magnesia for this. Although his overall condition is worsening, he is almost pain-free. His great outlook on survival is overwhelming. He does not sit and dwell on the fact that he may be dying, only what shall we do today. Please keep us in your prayers. God bless us all. Pearl. pjstrange123@yahoo.com


Carolyn B, July 30, 1999 - Hi Jon, Are there 2 Carolyn B's now? Update on my 2 girls with DCM: Busy and doing well! littleone@integrityonline.com
 
Jon's Note: Not sure


Dotty M's July 30 reply to Jon's July 28, 1999 - Hi Jon, Thanks for answering my post. I am going to call my husband's doctor today. Two weeks ago they did a blood work up and everything was fine but this hot weather has set in and he is doing so much sweaing. They are very good to him and he can go sit in a air conditioned room and put his feet up when things get too rough. One day his ankles swelled so bad he had to cut the top of his socks off. He has been taking more Demadex since than but it scares him since he found out he is in kidney failure. It seems like you can't win, no matter what you do. You get one problem under control and another pops up. I guess this is what heart disease is all about. Thanks again for the support. Dotty M. mckbrown@webtv.net


Jon, July 30, 1999 - Hi everyone, A subcontractor for a company involved in manufacturing various healthcare products often used by CHFers has asked me to pass on an Url. It is a simple online survey designed to help the company tailor its efforts towards CHFers. It's free and does not require personal information. You can sign up for some $10 Amazon gift certificates after filling out the survey, but that will require personal information. The Url is www7.kellogg.nwu.edu/bloomfield. Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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