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

Pat's 12-1 reply to Jon's 11-28     update, a bit depressed & more
 
Laverne 12-1     difficulty coping with grief
 
Jim Spraker 12-1     Coreg suppressed mother's arrhythmias
 
Jon's 12-1 reply to Jim Spraker's 12-1     an expected beta-blocker effect
 
Heidi 12-1     anyone have similar experience to this?
 
Sue 12-2     intro, what questions to ask? & more
 
Gus R's 12-2 reply to Heidi's 12-1     anxiety, depression & chronic illness
 
Karen Phillips 12-2     muscle wasting, aches & pain
 
Karen D's 12-2 reply to Karen Phillips' 12-2     muscle pain from statin drugs
 
Jon's 12-2 reply to Sue's 12-2     questions for the doc
 
Aganita V 12-4     seek alternatives to regular diuretics
 
Al H's 12-4 reply to Sue's 12-2     coping with CHF, adjusting to meds & more
 
Jon's 12-8 reply to Aganita V's 12-4     inotropes
 
Jim Spraker 12-9     weight, meds questions & more
 
Kathryn C 12-10     questions about my son's meds
 
Chrissy S 12-10     joint pain question
 
Gus R's 12-10 reply to Jim Spraker's 12-9     Norvasc & kidney failure
 
Jon's 12-10 reply to Kathryn C's 12-10     Ace inhibitors, Coreg, & more
 
Jon's 12-10 reply to Chrissy S' 12-10     is she taking a statin?
 
Al H's 12-10 reply to Chrissy S' 12-10     other possibilities
 
Jim Spraker's 12-10 reply to Gus R's 12-10     no more Norvasc & more
 
Ben B's 12-10 reply to Kathryn C's 12-10     CHF meds
 
Kathryn C 12-11     update, Coreg & more
 
Chrissy S 12-11     thx - will try some supplements
 
Ruthie A 12-16     prayer request, end-stage CHF
 
Karen Edge 12-16     a scary episode - questions
 
Jon 2 12-17     claudication & bypass questions
 
Dean Berry 12-19     have some questions - please help
 
Candy P's 12-19 reply to Jon 2's 12-17     surgery
 
Pearl 12-20     my husband Joe, died
 
Dina Rice 12-20     update & more
 
Sharon G 12-22     update, holiday wishes
 
Pearl 12-22     questions about my mother's CHF
 
Jon's 12-22 reply to Pearl's 12-22     CHF info
 
Kathryn C 12-22     CHF info
 
Gus R's 12-23 reply to Pearl's 12-22     tough to say, but,....
 
Bill 12-23     muscle and joint soreness question
 
Karen D 12-25     holiday wishes, have hope
 
Jon's 12-25 reply to Bill's 12-23     a possibility
 
Karen P's 12-25 reply to Bill's 12-23     cholesterol lowering drugs
 
Laney 12-27     husband has CHF, I have questions
 
Jon's 12-27 reply to Laney's 12-27     CHF info
 
Ann Marie K 12-28     update on mom & holiday wishes
 
Katie 12-28     intro, coping & more
 
Ruthie A 12-28     mom is end-stage - this is so hard
 
Marica's 12-29 reply to Ruthie A's 12-28     end-stage CHF
 
Pam C 12-29     update, seek CHF doc in Michigan
 
Kama 12-29     Lasix & fluid questions
 
Jon's 12-29 reply to Kama's 12-29     Lasix & fluid
 
Sherry 12-29     ACE inhibitor cough questions
 
Jon's 12-29 reply to Sherry's 12-29     possibilities
 
Sherry's 12-30 reply to Jon's 12-29     update, cough, meds, holiday wishes
 
Jon's 12-30 reply to Sherry's 12-30     about that CHF or ACE cough
 
Jon 12-30     growth hormone studies
 
Melissa 12-31     what to expect now?
 
Paul B 12-31     holiday wishes & more
 
Susan F 12-31     how did this happen?
 
Jon's 12-31 reply to Susan F's 12-31     misdiagnosis, doctors, CHF & more


Pat C's December 1 reply to Jon's November 28, 1999 - Good evening, Well, it's really not too much improvement. The cough he thinks is from sinuses and her throat is still irritated, but no strep. She still has problems with her kidneys. I am somewhat depressed tonight, as some hint perhaps that this is not going to go away. He ask me if she had children and I told him no, that I was it. He did say her lungs were clear. He did talk about her smoking but did not press her or make her feel guilty. He showed her a lot of respect and that made me feel good also. He did bring up something new to me, that I cannot get into now. I believe I am going to have to go and stay with her more. He seemed a little vauge. We will go back next week. I am worried. Thanks Jon, for your replies. Of course, all of this is related to her heart problems and age. I can't make that go away. I did not know that it also affected memory and that alone could become a problem. I thought I was pretty smart but I sure have found out otherwise. I will check back later. I need to absorb a little more. Thanks. Pat. jjdog_98@alltel.net


Laverne, December 1, 1999 - Hi, On November 14, 1999, my sister died of heart failure. She was only 57 years old. We had been told she didn't have long, but I just couldn't accept it. Now I am having a hard time coping with her death. Can anyone help? lleech49@yahoo.com


Jim Spraker, December 1, 1999 - Hi folks, I'm writing to report an interesting side effect of Coreg. My mother had arrhythmia, which appears to have been corrected by her medication. I don't know how common this result is, but our doctor had no ready explanation for this very welcome development. We, of course, accept benefits wherever we find them. Thanks for all the help. Friedlander51@hotmail.com


Jon's December 1 reply to Jim Spraker's December 1, 1999 - Hi Jim, Beta-blockers, of which Coreg is one, are class 2 anti-arrhythmic drugs, so depending on what kind of arrhythmia she had, it's not surprising Coreg helped. ;-) Jon.


Heidi, December 1, 1999 - Hi, I have a 80 year old grandmother who is experiencing problems with CHF. She has been diagnosed with CHF and goes into the hospital lately on a monthly basis. She feels a "heaviness" in her chest. When the ambulance arrives and she's taken to the ER, they do find fluid surrounding her heart but they say she's fine. It scares all of us and her meds have been changed several times. I talked to her doctors and they are not sure what to do. It seems like the same routine where she's ok, then she has an attack. Has anyone been through this? Do you have any suggestions to help her? lebleu@worldnet.att.net


Sue, December 2, 1999 - Hi, I just found this board and think it is fantastic, with lots of information. My mother is in CHF. At this time we are unsure how severe because her doctors seem to be unsure themselves. She will be going back to the doctor next week on December 7 and I plan on going with her but would like to have some straightforward questions for him. She is depressed and really doesn't want to hear what they have to say but I think we make sure they are doing everything that is available to them instead of saying you have lived a good life and just be grateful.
     Some things I do know are that they are treating her for a-fib and I think her EF is 35%. I only got this number when the doctor was trying to tell us about her heart pumping. She is on the following meds: 50mg Lopressor, 325mg Ecotrin, 0.125mg digoxin, 20mg Zocor, 400IU Vitamin E, one gram Vitamin C. I asked about cardiac rehab and was kind of told it wouldn't help, so it was up to her. Any questions or answers would be greatly appreciated. I know that prayers are powerful but I also feel that God gave people knowledge and that can be powerful also. All please take care, and Jon, thanks so much for this board. Sue. sditullio@aol.com


Gus R's December 2 reply to Heidi's December 1, 1999 - Hi Heidi, Please don't take offense at what I have to say because none is intended. I just want to share my recent experiences, since they might help in your grandmother's case. I and many other CHFers I know take what I call "head meds." For a variety of reasons we seem to have a higher incidence of anxiety and depression than the average person or group of persons. I've had CHF for 7 years and just recently started taking head meds. Compared to many who post here, my CHF symptoms are rather mild when I am not in a-fib. When I am, my world changes completely. The shortness of breath, dizziness, fatigue, all of my symptoms increase. This has always been accompanied by some nervousness, but recently the nervousness increased to where it became a vicious circle with the physical symptoms fueling the mental symptoms to the point where I really don't know which one was causing the other.
     Without going into a lot of details, my point here is that for whatever reason, after changing some of my heart meds and starting some head meds, life is much better for me. Since both meds were changed at the same time, I'm still not sure which one was causing the other or if there was any connection, but something worked. Also I know from experience with my mother and my wife's dad, that older people sometimes develop some odd fears which can affect them greatly. Your grandmother is both older and a CHFer so I think if she is not taking any head meds, she might discuss them with her dox, and if she is already taking them, her dox should consider changing them. The first 2 I tried were useless to me, but Paxil daily, with an occasional Alprazolam, has improved my life greatly and I wonder if something like this could help your grandmother. Best wishes, Gus R. gus13@net66.com


Karen Phillips, December 2, 1999 - Hi, My husband has CHF and is taking the usual suspects. He has suffered a lot of muscle wasting or muscle atrophy and the past month or 2, he has developed severe muscle aches and pain. Today he went to a new primary care doctor who strongly suspects that his dose of Zocor is too high. His cholesterol is 85. She had him immediately cut the dose in half. She also ordered up several tests, one of which is to check for Lanoxin toxicity; very interesting. His pain was so bad he had taken to using a cane but he has no SOB or edema. We thought his CHF had taken an unusual turn with all this muscle pain. It will be very interesting to see if she is correct as he takes less Zocor and checks out the Lanoxin. There were no followup appointments scheduled for him with either his PCP or his cardiologist, so tonight we are very glad that we decided to change to another doctor who would take an active role in the management of his condition. His EF is 20. Karen. phillik@televar.com


Karen D's December 2 reply to Karen Phillips' December 2, 1999 - Hi Karen, Zocor is one of the "statin" cholesterol lowering drugs, and one of its bad side effects is severe muscle aches and pains, which is an indicator of the muscle tissue breaking down. My husband Bill had the same reaction (although not as severe, becasue his dose was much less) and was taken off Zocor. He was on Lescol and Lipitor with the same deep muscle aches and pains. He is now on Baycol, thanks to Bill Drummond's mentioning it to us. While still a "statin" drug, it is different enough that he has not had a reaction. Your husband's blood should be checked regularly as long as he is taking a statin drug, because of the possibility of damage. If you do not already have one, you might want to ask your pharmacist for a detailed printout of information about Zocor. It took several weeks for Bill's aches and pains to go away. I hope your husband's are gone soon. Karen Deitemeyer. deitemey@kua.net


Jon's December 2 reply to Sue's December 2, 1999 - Hi Sue, Is your mother on an Ace inhibitor? A few things to ask might include the interval at which her blood and urine will be tested to monitor for liver damage from Zocor, for potassium imbalance and digoxin toxicity. This should be done at least every 3 months and also whenever dosage is changed or a new drug is started. Ask if she will be placed on Aldactone.
     If she has had any edema at all (swelling), she may need a diuretic, which would most likely mean adding a potassium supplement as well. Other signs that she may need a diuretic would be difficulty breathing especially when lying flat, or a cough that happens whenever she lies flat for a few minutes (she can also ease this a bit by using multiple pillows when sleeping). Inquire about the necessity for a low sodium diet, and whether she should restrict fluids to less than 2 liters a day to ease the load on her heart. Some doctors advocate this and others do not. Find out at what intervals or in what circumstances diagnostic tests like echocardiograms or fasting cholesterol tests will be required.
     Check insurance coverage for all possible lab work and diagnostic testing, as well as for Rx meds. Ask whether the doctor's office staff will automatically take care of filing claims on any secondary insurance or if your mom must do this herself. Secondary insurances often will pay the co-pay, leaving no out of pocket office visit expense. Ask about patient education programs for CHFers at local hospitals or from the insurance company or doctor's office. This is a relatively new thing but is rapidly becoming a big hit with insurance companies because an informed patient has fewer hospital visits.
     Well, that's a start, off the top of my head. I hope someone else will fill in the stuff I no doubt missed. Jon.


Aganita V, December 4, 1999 - Hi, We have a friend who has just been diagnosed with congestive heart failure. She also has diabetes and has had both her colon and bladder removed (some years ago). She is now retaining a lot of fluid but because of the kidney and bladder problems, the doctors don't seem to be able to use very much Lasix and so fluid is accumulating. She is also being given Diltriazam. Has anyone heard of any alternative ways to get rid of fluid under these conditions? We would appreciate any information. Thanks. avark@mindspring.com


Al H's December 4 reply to Sue's December 2, 1999 - Hi Sue, I can't add much more than Jon, other than to mention depression. If this is her first real bout with CHF and has recently started medications, depression is normal. Until one adjusts to some of the medications, there may periods long terms of sleep. This is normal. Your Mom will have to answer the question for herself. Is she going to be miserable and make everyone around her miserable, or is she going to accept her situation? The doctors will probably be able to help her obtain a more comfortable life if she will talk with them and try to do what they say. This will only work if she really has an excellent heart doctor. Sometimes they try to treat us like a herd of cattle.
     My parents both have, or have had, heart problems and I am on the active search list for a new heart. My dad died several years ago. My mom has an implanted device to regulate her rhythm and a defibrillator in the event her heart stops. She lives with this at 74 years of age and runs circles around me. I'm 52. You should also check out Lee R's site. She had experience with your Mom's situation personally (I think). See http://www.heart-help.net/. Take care, Al H. bobal@hotmail.com


Jon's December 8 reply to Aganita V's December 4, 1999 - Hi Aganita, A common way to get rid of fluid when diuretics fail is an inotropic drug like Milrinone given intravenously. I'm not sure if that is possible in your friend's condition but it's something to check into. She is on a low sodium diet and fluid intake restriction, right? Jon.


Jim Spraker, December 9, 1999 - Hi, My mom is suffering from renal failure in addition to her CHF, and I was wondering if anyone in the forum could offer advice. First, her output is very sporadic. Could the Norvasc that her cardiologist prescribed be the cause of this problem? Second, her weight is inching up. She is on 80mg Lasix in the morning and 40mg in the evening, 2.5mg Zaroxolyn every other day, Aldactone, Zestril, Plavix, Coreg, and 120mg CoQ10, which I understand has no side effects, right? What do you suggest that I suggest to Mom's cardiologist? Thanks. Jim. friedlander51@hotmail.com


Kathryn C, December 10, 1999 - Hi The cardiologist is going to start my son on Coreg. He is already taking 3.75mg Lanoxin per day, 20mg furosemide per day, 25mg spirinolactone per day, and 50mg Captopril 3 times per day. I just read in other posts that Coreg shouldn't be taken at the same time as the Ace inhibitor. I am not sure that the addition of the Coreg is a good move for my son. I will express my concerns to the cardiologist, but this addition is the result of his overall condition and his BP going up again, and heart rate increasing. He had pretty severe tachycardia when he was first hospitalized and in CCU. Does the increase in heart rate mean that his CHF is getting worse? I have heard that Coreg is tricky to get to the correct dosage on, so I am nervous about his trying it. He has been generally feeling more tired and has had some increased cough and tiredness, but no edema or congestion sounds when you listen to his chest. He has been supplementing with 30mg CoQ10 per day, 250mg magnesium per day), a multiple vitamin, and is also taking 20mg Celexa per day for depression.
     This just seems like so much medicine. It scares me that he has a veritable chemical cocktail floating in his body. I want him to feel better, but I can't help but worry about the combinations of drugs and what they are doing to him. This is so scary! We think that long term use of tricyclic antidepressants were a causative factor in his "idiopathic" cardimyopathy. So more drugs just seem very scary. Good drugs, bad drugs, drugs that keep you alive, drugs that kill you. I am worried. Kathie in Portland. Kathryncole@hotmail.com


Chrissy S, December 10, 1999 - Hi, I have a question my mother would like some input on. My mom is 65 and suffers with CHF, emphysema and cirrhosis. She is taking Lasix and potassium. She is suffering quite a bit with joint pain all over. She was wondering if a lack of magnesium could be causing her pain or if possibly the Lasix and potassium. Thanks for your help. csmith2177@aol.com


Gus R's December 10 reply to Jim Spraker's December 9, 1999 - Hi Jim, I looked at several sites and couldn't find renal failure listed as a side effect or in a warning about Norvasc, but did find what I think is a copy of the package insert (says Pfizer Labs at the bottom) at: www.druginfonet.com/. Under ADVERSE REACTIONS there I found: "Urinary System: micturition frequency, micturition disorder, nocturia." I had to look up some of those words. Micturition means the passage of urine, urination. A symptom of micturition disorder is excessive urination at night.
     At several sites I found: "Norvasc - you may experience the following side effects with the use of this drug: edema (excessive accumulation of fluid in cells or tissues), fatigue (excessive tiredness)." This all makes me wonder if there might be a connection between renal failure and Norvasc but I sure can't find anything to really wave at a doc. I do think it might be worth telling him that you have suspicions about Norvasc causing or adding to the renal failure, and see what he has to say about it. If your mother is nearing the end, you sure don't want to spend the rest of your life with any "if onlys" following you. Best wishes to you and all, Gus R. gus13@net66.com
 
Jon's Note: Don't forget to corner a pharmacist on this question as well


Jon's December 10 reply to Kathryn C's December 10, 1999 - Hi Kathryn, Taking a lot of meds is never any fun. There are several things you need to realize to cope with the array of drugs. One is that not all possibilities apply to your son. I take 40mg Monopril at the same time I take 50mg Coreg every morning and I have no side effects at all from the combination. It is only a precentage of people who will need to stagger their meds, and most of them only do it to avoid mild lightheadedness, not a catastrophic cascade of side effects; Really. I adjusted to Coreg with no problems and my dose was raised every 2 weeks until I was taking 50mg twice a day. Like all drug use, it's a very individual thing.
     You must not take everything you read here as absolute truth! Posts come from people like you and me, who are relating their own experience with this or that. These posts are a tremendously valuable resource but not everything in them applies to you or to me or even to most of us with CHF. You can use them to see trends that may apply to your situation and you may find answers to specific questions, but just because 2 or 3 people say they have to take certain drugs at different times does not mean you must do the same. Keep perspective, ok?
     Another thing to realize is that your son's (name unknown) body is over- producing some hormones to compensate for his weakened heart's inability to pump normally. These hormones are over-produced on purpose by his body to speed up his heart so it can move more blood per minute despite its weakened pumping action. Some of these drugs - like Coreg and ACE inhibitors - are just to counter that over production. This isn't nearly as intrusive a function as say, chemotherapy or Parkinson's drugs, which totally disrupt bodily processes. Yes, they are powerful drugs that can be lethal in large doses, but an overdose of Tylenol can knock out your liver and kill you just as dead. Again, seek and keep some perspective on your son's overall situation. How does he feel? How is his attitude? These are what count.
     An increase in heart rate can mean worsening of CHF but if he is still well compensated, it may reflect any number of things. Coreg is actually an excellent choice to counter an increased heart rate and tendency to arrhythmia. Of all the anti-arrhythmia drugs, it has probably the least side-effects, and those side effects are more easily tolerated than most others.
     Have you read up on Coreg at my Coreg page? If not, you may be jumping the gun on getting worried. Why not read up on it, get your son started on it, and monitor his progress or lack of it by keeping a written log so there are no subjective feelings clouding the record, and then decide if it is really good or bad for your son? ;-)
     The "to take or not to take" drug question is faced by all us CHFers at some point. It's a matter of 3 questions, I think. Number one is, "If I don't take this drug, I will probably die a lot sooner. Do I want to live longer by taking it?" Second is, "Am I willing to trade any possible (not certain) decrease in my quality of life from drug side effects for that added life span?" Number 3 is, "Would I feel as bad from disease progression if not taking the drug as I will by taking it and suffering its side effects?" It's up to your son to answer these questions and plot his course based on his own answers. Jon.


Jon's December 10 reply to Chrissy S' December 10, 1999 - Hi Chrissy, Is she taking a cholesterol lowering drug? Some of these are known to cause such pain. Jon.


Al H's December 10 reply to Chrissy S' December 10, 1999 - Hi Chrissy, My mom is 74 years old and takes some of the same medications as your mother. Mom has been having some joint and back pain. Her doc told her she has osteoparosis. This week she put mom on the supplement calcium-magnessium. Perhaps your Mom's doc should do a bone scan and see if some of this pain is caused by something in addition to what Jon posted. Al. bobal@hotmail.com


Jim Spraker's December 10 reply to Gus R's December 10, 1999 - Hi guys, Again, you've come up with just the right answer just in the nick of time. In the course of dealing with Mom's illness, I've found that nothing in print covers all the bases. Luckily Mom's cardiologist says that her problem is of a very recent nature and that it is possibly, at least in part, reversible. The bottom line is that the Norvasc was not effective or apparently appropriate, and Mom's physicians have discontinued its use. We are, of course, considering the possibility of dialysis down the road. Please keep us in your prayers. Friedlander51@hotmail.com


Ben B's December 10 reply to Kathryn C's December 10, 1999 - Hi, Nobody likes to take drugs but without these drugs, we would all be dead. I don't think there is much dispute to this. In most cases our doctors can really do nothing except prescribe medications for us. Ask yourself: besides running tests and writing prescriptions, what do most doctor's do for CHF patients? It's not their fault, that's just the way it is. Coreg is an excellent drug and everybody here who takes it also takes an ACE inhibitor. Jon has all the studies showing the statistical data to this effect. We all know the side effects of drugs when we take them, but we take them for the benefits they give us - in this case staying alive. bdbrinkman@ieee.org


Kathryn C, December 11, 1999 - Hi, all, Ben and Jon, Thank you both for the good advice. We had our visit with the cardiologist today. Yes, we do think Coreg is advisable at this time. My son (Julien) has begun by cutting his Captopril dose in half beginning today, then within the next week we will visit the cardiologist again to titrate him onto Coreg in the office. One reason I am so very concerned about his ability to tolerate Coreg is that while he was being titrated up on his current medications in the hospital, he had a seizure and collapsed which landed him in CCU for a few days. They still do not know for certain what caused that episode, but are being very cautious about the Coreg, because there is more of a tendency to lower blood pressure and heart rate with Coreg. The doctor said it was a difficult drug to get started on. She also said that in her opinion, it would be negligent on her part not to try and get Julien started on it. So we will just try it sometime next week. Keeping a journal is a great idea. We already keep a journal of medications and sodium and liquid intake, so an additional space for notes wouldn't be a strain. Thanks again for the wisdom of your experiences. God bless you all, Kathie in Portland. Kathryncole@hotmail.com


Chrissy S, December 11, 1999 - Hi Jon and Al, Thanks for your responses and your help. Jon, she is not taking any meds for lowering cholesterol, so that's not a problem. Al, her doctor did mention to her possible arthritis. My mom just wanted to be sure that she was taking enough magnesium. She had heard something about the loss of magnesium due to taking Lasix. With my mom, it's hard to get her to take her meds, she sometimes looks for reasons to not take them. The suggestion of a calcium/magnesium supplement seems like something to try. Thanks again for your help. csmith2177@aol.com


Ruthie A, December 16, 1999 - Hi to everyone, It's been a long time since I posted, so I thought I would update you on my mother. Last summer she was given 6 months to a year to live and I did not think she would make it to Christmas. But in her stubbornness, here she is! It is amazing how tenaciously she is holding on. Unfortunately though, her body is slowly shutting down. She is completely incontinent and now cannot process vegetables and some fruits. They go right through her making her dehydrated and weak. In the meantime, her lungs stay filled with fluid and she can hardly breathe even with oxygen. Mother has also begun talking about how she will not be around much longer. It is as though she is making as many mental, if not physical preparations for her death as she is able. I hope for her sake it won't be much longer. End-stage CHF is so terrible and mother is suffering a lot. Please pray for her. Ruthie A. rlaba@mindspring.com


Karen Edge, December 16, 1999 - Hi all, Well, things were getting better and then they got worse. Now we're hoping for better again. Dad had been having shortness of breath problems and the GP he went to put him on some asthma medicine. He took a steroid dose pack, she gave him a new inhaler, and he takes a Singulair once a day. Then Tuesday he called and said he had suffered a coughing spell and his left arm went limp as well as his neck. The symptoms resolved within a few minutes but I called his cardiologist anyway. His left arm and neck symptoms scared me. They told me they weren't sure what had happened but it was definitely serious enough for him to go to the hospital.
     Here we go! The CAT scan was negative. The MRA showed no aneurysm and the MRI showed a series of mini-strokes. This must have been one of them. The cardiologist says it must have been clot-related and a microscopic clot must have been dislodged during his coughing and hit his brain. The GP says she will run the results by the neurologist and let us know what he says. They raised his Coumadin dose to 7.5mg a day and hope to get his INR to 3.5. He's at home now, which I think they should have kept him 72 hours after his Tuesday episode but then again, I'm not the doctor.
     Have any of you out there experienced this? I'm hanging real close, even though Dad is very irritated about my constantly telling him to take it easy. He says he is not scared to die and he's going some way or another, but I think he's just being stubborn! Monday is his birthday and he'll be 66. By the way, all his cardiac tests they ran during the episode came back great. Thanks for listening and God bless! Karen. kedge@ispchannel.com


Jon 2, December 17, 1999 - Hello people, My mom recently had an angiogram for claudication of arteries in her legs. The doctor doing the test thinks she will need a bypass graft of her arteries behind her knee. Has anyone had experience with this procedure, especially on a CHF patient? Although she has being doing ok with her CHF lately, I am worried about any further strains to her system. Thx. jonjensen@uniserve.com


Dean Berry, December 18, 1999 - Hi, This is my first time to write in. I just feel that I need to talk to someone that kind of knows what we am going through. My wife, age 61, has had CHF about 10 years. She also has pulmonary hypertension. She had VSD at birth and had open heart surgery in 1964, two years after we were married. She had 2 girls who are now on their own. In the last 5 years she has gone downhill. We have been in the hospital (Kaiser) at least once per year for one reason or another. Once, it was for a broken elbow. Each time she has never completely gained her strength back to where she was before the problem. The year before last, she had to get a pacemaker after her heart dropped to about 35 and she passed out. Last April, we went in to see about getting the fluids off after she was coughing so much she was passing out on me.
     We went to the ER on Friday, December 3, with a bad nosebleed. They ended up admitting her to the hospital for over a week. During this time they gave her 10 units of blood. They feel that she was bleeding in her stomach, possibly brought on by a hard cough she had. Since being home these last few days, she has felt a little better each day but does feel very sore and tired. She seems to have her nights and days turned around. She sleeps a lot of the day but sometimes not that much at night. She is taking 4mg Bumex twice a day to get rid of the fluids. We are on low sodium and fluid intake, but she gets so very thristy. The meds seem to dry her out so much. We were just wondering if anyone had the same symptoms or could give us any encouragement. It is so very hard for me to see her going downhill like this. Dean Berry. dberry@saber.net


Candy P's December 19 reply to Jon 2's December 17, 1999 - Hi Jon 2, I had thoracic aorta to a bi-femur bypass and I have cardiomyopathy. I go into congestive heart failure at times. This was a major surgery and I made it through. In fact, the cardiovascular surgeon took me off all heart medication except Lasix while I spent 10 days in the hospital. However, about a week after I got home, I was back in the hospital as I had a lot of fluids building around my heart. My feet were at least 3 times their usual size and I couldn't breathe. I had classic CHF symptoms. I was given IV Lasix for several days and I got back to my old self except I am currently on more heart medication then before. The great part about it though is I am not as uncomfortable and I can walk. It was well worth the risks. I have to go under anesthesia again and my cardiologist said I would be just fine. My surgery is different than your mom's though. She's having a graft done. I have a dacron artery from my thorax to both thighs. All in all, I think she'll be able to handle the surgery ok. GrPota@aol.com


Pearl, December 20, 1999 - Hi Jon and all the friends I have met throught this site, I have not posted much but have read the posts of other people here. I want to inform you that I lost my beloved Joe on November 19. I have lost the most precious thing in the world to me. Today is December 19, which would have been our 35th anniversary. My heart is broken and cannot be mended. We were together every day of our life and now I have to deal with living alone. I am thankful that he had the wonderful people of hospice with us in the end. He suffered no pain. The only pain left is mine to deal with. God bless you all and live each day to the fullest. Pearl. pjstrange123@yahoo.com


Dina Rice, December 20, 1999 - Merry Christmas to all, It has been so long since I've visited here that I don't recognize many names. I'm not sure if that's good or bad! Hopefully, people are like me and have slowed down the visits because things are going ok with them for now. My husband John (age 31, CHF, cardiomyopathy, ICD) is stable. His EF went from 8-10 at diagnosis 12/28/98 to about 50 now. We don't have to see the transplant doc for 5 more months if everything stays the same and his ICD doesn't go off. We're thankful for that.
     He still sleeps or rests most of the day and is bored out of his mind not working, but of course he realizes that it could be worse. We sure are broke though, especially this time of the year! Living on a teacher's salary and SSD in Arkansas has been an adjustment. We seem to be maxing out a few credit cards. This just makes you realize that money isn't everything and the medical bills and credit cards can wait. Hello to everyone I've been horrible about keeping in touch with. I am sorry and hope you are all doing ok. riced@hsmail.k12.ar.us


Sharon G, December 22, 1999 - Hello and merry Christmas to all, I know this time of year is hard for us and I'm sure the same for most of you, but that our loved ones are with us even one more day seems to help us keep up the spirit of Christmas. Mom is some improved, with no more ER trips lately. She is really depressed but I know that is to be expected. I really just wanted Jon and all who e-mailed me to know what a help this site has been for me and my family, to help us understand and deal with the situation with my mother. I hope all of you and yours have a blessed holiday season and keep in mind that we should have this "Christmas spirit" all the time since that is what makes this life worthwhile in the first place. God bless all of you and yours. sugspice@brightok.net


Pearl, December 22, 1999 - Hi, My mother of 77 years has been diagnosed recently with congestive heart failure. Her heart is pumping at a rate of about 15-20%. She has complete blockage and due to her weakened heart muscle, she is not a candidate for surgery. She has been placed on digoxin, Coumadin and Lasix. She has gone on a strict low sodium and low fat diet. Can her heart muscle regain some of its strength? Is walking good for her? pcooley@madison.k12.al.us or cooleyfam@juno.com


Jon's December 22 reply to Pearl's December 22, 1999 - Hi Pearl, I've gotta rush this one but be sure to read The Manual and Heartbytes, as well as my other pages to gain more info on CHF. Then, ask away! Jon.


Kathryn C, December 22, 1999 - Hi, I am looking for some kind of a reminder system for my son Julien, to take his medications on time. He now takes medication 5 times a day. Does anyone out there know of a "pager" type device we could purchase to remind him to take his meds? He has an alarm watch, but that has only one alarm time per day. I believe I have seen an ad on one of those airline magazines for something like a pager specifically to remind patients to take medications, but now I that I would like to buy one, I haven't been able to locate one. Kathryncole@hotmail.com


Gus R's December 23 reply to Pearl's December 22, 1999 - Hi Pearl, Jon's right about reading the stuff he has "hidden" throughout this site. The answers to most questions have been asked and answered before. So read, read, read and don't forget Who's Who, and The Archives of old posts. However, since I know how hard it can be to find just exactly what one wants, particularly if they are upset, here's my answers and thoughts on your 2 main questions. Yes, and yes.
     We're all different and even the dox can't accurately predict what is going to happen to any specific patient, let alone a half crazy CHFer like me, but many of us do improve. Also, many of us who don't actually improve that much, adapt to, or accept our limitations enough that life becomes better than the bleak picture we first saw. As to exercise; for me at least, the more exercise one can tolerate, the better one will be and feel. The catch here is in knowing how much can be tolerated because too much can cause problems. Again, we're all different but many of us have a problem with overdoing things on our good days, which brings on bad days, particularly at first.
     There's a lot of trial and error involved in getting the right amount of exercise, the right meds, and the right dox, but many of us can do it. One final comment - your mother's "pumping at a rate of about 15-20%" may not be as bad as it sounds at first. Some people are able to do more at 15% than others at 35%. Also, many of us have decided that these numbers change so much due to several reasons, that they are not the best indicator of our actual condition. Best wishes, Gus R. gus13@net66.com


Bill, December 23, 1999 - Hi all, My wife is 44 and has had CHF for 6 years now. She is complaining more and more about joint pain, muscle soreness and weakness, I believe from all of her other conditions. She is class 4 at this time. Has anyone else heard complaints of muscle soreness and fatigue? Thank you. bilbo@worldpath.net


Karen D, December 25, 1999 - Hi, I want to add my thanks to Jon for this site. Without the information we have found through The Manual and from friends we have met here, I truly believe my husband Bill would not have survived this first year after being diagnosed. A year ago, his EF was 12-15%, his heart was grossly enlarged and most of his days were spent in a recliner doing nothing; Even that wore him out.
     His latest echo measured his EF at 40% and his heart has gone back to normal size. He is now able to walk slowly 1½ miles each day, has discovered that he enjoys painting and even cooks dinner some nights when he's feeling extra good. His local cardiologist told us Wednesday that while he will probably not ever get back to what he was before his heart was attacked by a virus, that he may not ever need the transplant they referred him for a year ago. We go back to the transplant center in February for another Vo2Max and are hoping that score will also be up from July's score of 16.2. If so, maybe they won't need to see Bill as often in this next year.
     When Bill was first diagnosed, we weren't given any information except that he was in the end-stage of this disease. We began to have some hope when we read here about people like Bill Drummond who has had CHF for more than 7 years now and Jon, who has been dealing with it for 5 years plus. I guess what I'm trying to say in all of this rambling on, is that there is always hope, even when we think there is not. I wish all of us a good holiday season and better health in the new year for everyone. Karen. deitemey@kua.net


Jon's December 25 reply to Bill's December 23, 1999 - Hi Bill, some cholesterol lowering drugs can cause muscle pain and weakness, and joint pain. Is she on such a drug? Also, because our hearts are weak and cannot deliver a "full" load of oxygen-rich blood to our extremeties and organs, we CHFers often get aches and pains that simply cannot be explained. Because we don't get as much as exercise as we should, our muscles lose most of their tone and much of their mass, a process called deconditioning. This process lends us to some very nasty aches and pains. As I see it, any exercise is better than none, and will help reduce pain after the initial shock to muscle cells. In class 4 CHF, I see no reason why a mild painkiller is not warranted for such pain, if it cannot be eliminated by meds changes. Jon.


Karen P's December 25 reply to Bill's December 23, 1999 - Hi Bill, Regarding your wife's aches and pains, my husband was experiencing the same thing all autumn. He was miserable but a new doctor took him off Zocor (the statin used to lower his cholesterol) and he is feeling a lot better and has gotten tremendous relief. This drug lowered his cholesterol to about 70 so he didn't need it as he had before and it did produce the muscle and joint aches and pains. Additionally, since he hurt so much and wasn't getting any movement going in his body because of it, this doctor sent him to physical therapy for a bit to get him loosened up. Check her meds. Karen. phillik@televar.com


Laney, December 27, 1999 - Hi, My husband has been having heart problems. He is 44 and it has taken us by surprise. I found your site and am thanking you for having some information available. My husband went into the hospital 3 weeks ago with heart failure and had an ejection fraction of 10. His heart is enlarged and weak. He is told it was likely a virus that attacked his heart. He is off work. Last week he had a cath and a biopsy done. We were told that all his arteries are clear and that his heart is weak, nothing more. I am worried the doctors are not telling us everything. On the other hand, I think maybe we don't want to know. Yet I know I need to know, so I am looking on the Web to find out all I can. My husband is scheduled to go back to his general practitioner next week. He is not to see a heart doctor for 8-10 weeks. This seems wrong. I want the results of the tests explained and the results of the biopsy explained as soon as they have them. The general practitioner hasn't given me a lot of confidence. He even forgot to write out the prescription for Coudamin. Any thoughts on any of this? Thanks and God bless Jon and the people connected with this site. esl@csrlink.net


Jon's December 27 reply to Laney's December 27, 1999 - Hi Laney, Welcome to Jon's Place! None of us wanted to discover we had weak hearts and I think we all feared what educating ourselves would tell us - perhaps that we would die soon, or be crippled. Well, that's possible but probably not. ;-) You're right about a general practioner not being a good choice to manage your husband's heart failure. He needs a CHF specialist, not an internist or a general cardiologist, but a CHF specialist. That has been proven in medical studies! There are plenty of CHF docs around. You can find a post about it here (let it load).
     Doctors can explain test results in plain English with no loss of accuracy. If your doc won't do so, get another one. Remember now - at the start of what will be regular visits to the doctor - that every doctor works for you. You are his boss! If he cannot or will not perform up to your expectations, fire him! This is your husband's life we're talking about here, so any doctor who won't take the time to get it right is saying that your husband's life just isn't that important to him. Is that the guy you want in charge of hubby's health?
     Before I go any further, be sure to read The Manual. Ask all the questions that occur to you. We'll do our best to answer them. Jon.


Ann Marie K, December 28, 1999 - Hi, I would like to wish everyone a happy new year and update you on my almost 86 year old Mom. In September, she was in class 4 CHF and only had weeks left, according to her doctor. I am happy to report that she is doing well. She has been out of the hospital for almost 8 weeks and is off dialysis. She seems very stable. She uses a walker to get around the house and takes frequent naps. I am so thankful that she's still here, because I really couldn't see how she would survive, after what she had been going through since April of this year. I know that I have witnessed many miracles this year. God bless to all. Metaphlady@aol.com


Katie, December 28, 1999 - Hello fellow readers and writers, This is my first post but I have been reading for many, many months. My husband was first diagnosed with severe cardiomyopathy 7 years ago. At that time, the future did not look very encouraging. At 50 years of age, the doctors tell you your heart is just worn out. We have been through so many stages of the disease and so many medications, as you all have. With just my husband's case, we have seen a lot of new drugs and treatments, which have given him an additonal 5 years. He is now in what they call the last stage of cardiomyopathy and we are following all the doctors' instructions and praying for a new donor heart to come in any time.
     What I wanted to say to all is cherish the moments and be patient. You can't change the future, it's not in our hands, but you can change the present by sharing your love and feelings with your family and friends. Be flexable. If you don't get something done today, it will be there to do tomorrow. We have had such a wonderful holiday season just seeing family and friends, and we didn't have everything planned out as usual or have all our old favorite foods, and only a simple gift to open. Take care and give someone a hug today. Katie. LowBigFlyer@WorldNet.ATT.Net


Ruthie A, December 28, 1999 - Happy New Year to all! I have an update on my mother. She called me this morning sounding awful. It sounded as though she was drowning; She was so breathless and rattley. After only 5 minutes of conversation, she was so tired she had to hang up. Her doc doubled her Lasix up to 280mg a day, hoping to get some fluid off without putting her in the hospital, but I am not very optimistic. I know she is in end-stage CHF and that her time is very short but somehow I didn't expect her to sound like this. She is suffering so much and is so very sick. I am at the point where I wish she would die so it would all be over for her and for us. At the same time, it is kind of scary. Hubby and I wonder if this is what it will be like for me when my time comes. I sure am not looking forward to that! I just hope mother goes in her sleep and does not suffocate as she dies. Man, this is really hard. Thanks for listening. Ruthie. rlaba@mindspring.com


Marica's December 29 reply to Ruthie A's December 28, 1999 - Dear Ruthie, My mother is in end-stage CHF. I took her home from palliative care last year in May. She is under oxygen when she has the drowning sensation. Ask her doctor to arrange oxygen use for home. My Mom is on 4 liters during the night. Also, giving spironolactone together with Lasix might help her. Ask her doctor whether prescribing Vasotec or digoxin wouldn't be helpful. She shouldn't suffer so much. I wish you could be beside her. I know how much that means to my Mom. I say a prayer for both of you. Please answer me how she is. Love, Marica. sandorvigh@home.com


Pam C, December 29, 1999 - Hi All, I just wanted to post a New Years note. I haven't posted in awhile but read every day. Like most here, I really appreciate this group and am so thankful you're here and especially thankful to Jon for putting this all together.
     I saw my hubby for the first time in 2 months over Christmas. He took the job in Michigan and I'm still here in Vegas until the house sells. I really resent having to be apart, especially when his CHF has made his life span so much shorter than most. He is doing well even though I still haven't gotten him to reduce his sodium intake! His symptoms include being more tired than he wants. He starts coughing some if he's a few hours late taking his Lasix.
     Even though Rick's been in Michigan since Labor Day weekend, he hasn't even started looking for a CHF specialist. He claims he doesn't need to since he still has a lot of refills on his meds! He drives me crazy sometimes. Does anyone know of a good CHF doc in the central Michigan area, maybe in Lansing, Midland, or Saginaw? He's living in Mt. Pleasant. I think I can get him to go as far as Detroit, which is 2-3 hours but he doesn't want to go that far so he won't have to take so much time off a new job. He hasn't even told them that he has CHF and doesn't want to until he has to. Thanks again and happy holidays. Pam C. woo_conley@hotmail.com


Kama, December 29, 1999 - Hi, My 81 year old grandma was diagnosed with CHF last week. They put her in the hospital and pumped IV Lasix into her. When she left the hospital, she was much better but by Thursday night we were back in the ER with her retaining more fluid. I had to take her back again yesterday. She is currently on 180mg of Lasix a day. Will the fluid continue to build or will be get to a point where the Lasix controls it? So far it isn't helping. kjb357@aol.com


Jon's December 29 reply to Kama's December 29, 1999 - Hi Kama, Is she on a low sodium diet? If not, no amount of Lasix will keep her out of the hospital. Please let us know, so we can make intelligent suggestions. If you need info on low sodium eating and cooking, start with Kitchen Corner. Also see The Manual and Links for more info. Jon.


Sherry, December 29, 1999 - Hi everyone, I have not written in a while, mainly because I have been too busy at work and I don't have a computer at home yet. My mom has CHF and isn't doing too well. She is 74 and has diabetes. I was wondering if anyone has anything to share about the dry persistant cough my mom gets from Vasotec. I told the doctor last month or so that she just couldn't take it anymore, so he tried an ACE 2 inhibitor called Cozar. Well, the cough went away but apparently the Cozaar was not as effective as the Vasotec and mom was really weak on it. So we went back to Vasotec at a lower dose. She now takes 7.5mg Vasotec twice a day. I am going to ask the doctor if we can go any lower or try a higher dose of Cozaar. Cough medicine doesn't help at all. If anyone can offer anything, I would really appreciate it. Thanks and happy new year to you, Jon and to everyone. szauderer@milbank.com


Jon's December 29 reply to Sherry's December 29, 1999 - Hi Sherry, These are just some ideas to run by her doctor:

     Maybe someone else can add some more possibilities for you to ask about. Jon.


Sherry's December 30 reply to Jon's December 29, 1999 - Hello, Thanks Jon for your message. She actually does take zaroxlyn every once in a while, sometimes every third day, plus the usual 80mg and 80mg of Lasix. I will ask the doctor about the Aldactone and see what he says. Maybe that and Cozaar would work well. I just really hate her taking Vasotec because of the cough. It is absolutely horrible to watch her choke so much. I took her in this morning for a Coumadin test and she did not look too well. She said she feels worse today than yesterday. I don't understand what it is, just 2 days ago the doctor said her lungs sounded okay, not great but not terrible. What really bothers me is that she looks bad and her breathing isn't great but the x-ray wasn't that bad. I don't get it and I am very upset. She is really suffering today. I just had to leave her to go to work for a few hours. Tomorrow (New Year's Eve) is my mom and dad's 53rd wedding anniversary! I was praying for a nice weekend with them and now I am worried that she might end up in the hospital again. Anyway, you have no idea how great it was to get a message back from you Jon. I don't feel quite that alone and it so helps that people really understand what I am talking about and how I feel. Bye and happy new year to everyone. szauderer@milbank.com


Jon's December 30 reply to Sherry's December 30, 1999 - Hi Sherry, Just to be sure we're talking about the same thing; there are 2 different coughs CHFers are prone to. One is that dry, persistent cough that often comes from an ACE inhibitor or sometimes is just a byproduct of our illness with or without drugs. The other cough is from fluid in our lungs and is a much wetter, longer and more struggling sort of cough. This usually indicates a need for more diuretic (and potassium) or an inotrope. Jon.


Jon, December 30, 1999 - Hi, Someone wrote me earlier this week about growth hormone studies. Please check out the New CHF Meds page. I have added a more recent study on growth hormone for CHF. Jon.


Melissa, December 31, 1999 - Hi everyone, I just found this site while looking for information on CHF. My dad, who is 70, is in last stage CHF. He is house-bound now and cannot walk more than 10 feet or so without sitting down to try and catch his breath. He was going into the hospital every couple of months for IV dobutamine treatments, but the last 2 times there was no noticeble improvement so he has refused to go again. He is very weak, his breathing is very shallow and his mood is changing. He doesn't complain but he gets grumpy and snaps at times.
     Anyway, I'm glad I found this site. It looks like a great source of information and support. My prayers are with all of you who are dealing with CHF. Can anyone point me to some information on what we can expect in the weeks to come? While I realize no one can tell the future, being prepared for what is coming can help us deal with it. By the way, my parents are believers, as I am. I am sorry for rambling but this is very hard. bizz@neo.rr.com


Paul B, December 31, 1999 - Hi all, I started coming here about 2 years ago looking for information on CHF for my father and later, my mother in law. Both have since passed on but I'm convinced the service and caring Jon and the rest of you provided helped immeasurably. As we end the century, I want to thank and encourage all of you. Jon, you have more of an impact than you may realize. Although I'm not a CHFer, your information on the heart caught my attention and helped spur me into losing 45 pounds this year. My life is better because of you. Happy New Year, one and all. God bless you. wkhj@gcnet.net


Susan F, December 31, 1999 - Dear Jon, I hope very much that I am not upsetting you by writing, as my story has a very sad ending. It's just that my mom recently died of CHF and I am so confused about how it all happened. I hope that you or someone else can answer a few questions. First let me tell you what I do know.
     My mom was 65, a former smoker and breast cancer survivor. She was pretty active and a healthy eater. In August of this year she went to see her family pracitioner with sudden onset of pain all over, extreme fatigue and difficulty breathing. Although she had no fever, the doctor diagnosed her with pneumonia and gave her a 10 day supply of antibiotics. Mom felt somewhat better but her lungs never cleared of fluid. Over the next few weeks, her family pracitioner and a pulmonologist saw Mom. They repeated chest x-rays and frequently drew large quantities of fluid from her lungs. She sounded like she was drowning. She became terribly fatigued, to the point where she couldn't stand long enough to brush her teeth. Her doctors evidently didn't find this too bothersome as her pulmonologist could not get her an appointment for an echo until early November; By then it was the end of September.
     Living out of state, we were panic stricken about how to best help. We determined that she was not getting adequate attention from her own doctors, so we planned to have her come visit us. Sadly, she didn't live long enough to make the visit. On October 14, Mom cancelled her next office visit and out of desperation she went to the emergency room of her local hospital, where she was quickly diagnosed with CHF stemming from a long standing series of ischemic events. Her ejection fraction was about 15%, but she had no arrhythmias. She responded well to the therapies that were started and felt better and quite encouraged. At least she had a diagnosis. She was released from the hospital on October 18.
     She died suddenly the following day. We are all terribly shocked and confused. How could this diagnosis be so difficult? Are others frequently misdiagnosed at first? How could she have had extensive heart damage without being aware of what was happening (so called "silent heart attacks")? Could the medicines she was given - Lasix, Capoten and digoxin - trigger the arrhythmia that most certainly caused her death? Could Mom's life have been prolonged with quicker diagnosis and treatment? I know that this is a pretty longwinded letter, but there is no one else around who knows much about this disease. I sure hope that you won't mind taking some time to answer these questions. Thanks, Susan. jaflicki@facstaff.wisc.edu


Jon's December 31 reply to Susan F's December 31, 1999 - Hi Susan, Answering questions is what I do, sometimes gracefully and other times abruptly. This will be a combination of the 2, so please bear with me. Before I answer your questions as best I can, I must say that this site is for support, with a definite positive direction. People often write me looking for a way to blame doctors or institutions for a loved one's death, often with the aim of suing same. I don't maintain this site to support such actions or attitudes.
     I assume your intention is just to understand. Remember that doctors are people too, and they make mistakes. They are taught certain prejudices early in medical school that carry over into their medical practice the rest of their lives. Some doctors should never have been doctors due to lack of compassion in their personality or a poor ability to communicate ideas to other people, but hey, we all make wrong choices and we all have to live with them. Also, CHF is still not an easy illness to diagnose despite what we patients think.
     On the up side, a blood test is currently in trials that may indeed confirm a CHF diagnosis in a matter of minutes in a doctor's office setting - a wonderful tool that will save many lives, I am sure. I was myself misdiagnosed repeatedly, pushed into an unnecessary surgery that almost killed me and even after that, misdiagnosed again. I chose to put it behind me and forgive the doctor who called all the shots wrong, time after time. I refuse to give him the power to interfere in my life the rest of my life. That's what you give a person when you dwell on his actions over time: power over you.
     Now for more objective talk; Chest x-rays should show any heart enlargement. Arrhythmias are tricky business. When you say she had none, what you are actually saying is that none were detected while she was being monitored for them, and that she had no known history of them, right? That does not mean she had no arrhythmias, and that any she may have had were not life threatening. The drugs you list are highly unlikely to have contributed to her death if she died from arrhythmia. As I read your message, you do not know for sure of what she actually died, except that heart failure was a significant contributing factor. Sudden Cardiac Death or SCD kills up to 40% of CHFers. It is unknown whether most of these cases are caused by arrhythmia or whether sudden death is a natural progression of severe heart failure.
     The heart has areas that send and receive, reacting to electrical signals. When the heart enlarges a lot, those areas are stretched as is the whole organ, causing elongation or distortion of the normal traffic pathways for those electrical signals. One belief is that this stretching contributes to so many SCD outcomes in CHFers. I just don't know. All I know is that SCD kills a lot of us regardless of what meds we take. The only thing I can think of that may have been a problem with her treatment at that point is that maybe IV diuretics were used and the potassium depleted in that process was not fully replaced with supplementary potassium. ERs provide emergency medicine rather than comprehensive care. It sounds like they did a pretty good job for your mom but I have no way to know.
     To get more specific now, here's the compact version, which together with my rambling, may help:

How could this diagnosis be so difficult?
Lots of CHF symptoms are "nonspecific" meaning that fatigue, shortness of breath, lightheadedness and fluid retention can all point to plenty of other illnesses and conditions. The only gold standard for confirming a CHF diagnosis is echocardigram, a test underused by non-CHF-specialist doctors, and quite expensive
Are others frequently misdiagnosed at first?
Yes, and often. Should they be? No. Hopefully, that blood test and other upcoming technologies will help doctors do better in this area
How could she have had extensive heart damage without being aware of what was happening?
I don't know. The human body and its processes is a complete mystery, despite all the smoke the media blows your way about how it's "being mapped" and we "understand almost all of it." Baloney. We just don't know the hows and whys yet, and we may never know them all. We're complex, to the point that I seriously doubt one in a million humans has any idea of how complex their own bodies really are. We still don't understand how a single cell does what it does
Could the medicines she was given - Lasix, Capoten and digoxin - trigger the arrhythmia that most certainly caused her death?
Unlikely. Then again, I'm not a doctor
Could Mom's life have been prolonged with quicker diagnosis and treatment?
Yes. Although it may have been one person's fault she wasn't treated better, don't jump to that conclusion. Probably just about everyone involved in her care is to blame, including herself. Americans just don't stand up for themselves to doctors in order to obtain the best possible medical care for themselves. Why, I have no idea. It's like we hate to "bother" the doctor

I hope this rambling has been of some use to you. I also hope none of it caused you offense; None was intended. You have my most sincere condolences, and I hope you find peace in your life, regarding your mother's death and more. I have no idea how people cope who do not lean on Jesus the whole way. He is my strength, my hope and my forgiveness. May He comfort you. 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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