Joanne R's 2-1 reply to Dena B's 1-31 doc suggestion
Bruce 2-1 what about these upcoming treatments
Jon's 2-1 reply to Bruce's 2-1 upcoming treatments & more
Valerie R 2-2 is this just or is it CHF - cough & more
Bruce 2-2 Richard M, need different e-mail address, please
Sheryl C 2-3 seek Oklahoma CHF doc
Myrtle C's 2-3 reply to Dawn's 1-28 my depression experience
Dawn 2-3 my depression experience
Joe S 2-4 keep the faith
Cate M 2-5 needed to share this
Steve 2-5 seek Medicare transplant info
Katherine H 2-6 metallic taste in mouth - seek advice
Paul 2-6 exercise helps my attitude
Kathy 2-6 seek low-sodium mayonnaise
Jon's 2-6 reply to Kathy's 2-6 low-sodium mayonnaise
Cate M 2-7 cath, angio-seal device
Scott Brown 2-7 questions about sodium
Tony P 2-7 liver failure questions
Jack D's 2-10 reply to Scott Brown's 2-7 sodium
Donna's 2-10 reply to Cate M's 2-7 cath puncture sealing devices
Ruthie A 2-10 venting - are there no real doctors left?
Cate M 2-10 thanks for angioseal information
Deirdre 2-10 seek EPS experiences
Rebecca 2-10 what can this be?
Rick M's 2-11 reply to Jack D's 2-10 quit beating around the bush
Vee's 2-11 reply to Jack D's 2-10 it seems okay to me
Margaret D's 2-11 reply to Rebecca's 2-10 PVCs
Larry's 2-11 reply to Vee's 2-11 diuretics may extend some of our lives
Cristina L's 2-11 reply to Rebecca's 2-10 CHF in young women plus amiodarone question
Valerie 2-12 could this have been fluid?
Jacky 2-12 is magnesium good for the heart?
Alan 2-12 seek stent experiences
Jon 2-12 replies and more
Tom S 2-12 an unpleasant experience
Valerie's 2-12 reply to Jon's 2-12 it's a big shock & more
Scott Brown's 2-13 reply to Jack's 2-10 sodium intake and doctors
Jon's 2-13 reply to Scott Brown's 2-13 posts, sodium, phrasing & more
Tom S 2-13 expanding on last post
Natalie K 2-14 a way to give to charities
Ruthie A's 2-14 reply to Tom S' 2-13 out of curiosity
Lisa M 2-14 seek advice
Tom S' 2-15 reply to Ruthie A's 2-14 explaining further
Colette 2-15 seek similar experiences
Joanne R's February 1 reply to Dena B's January 31, 2003 - Hi Dena, Eastern Texas is a big place and I hope my suggestion is practical for you. My initial hospitalization was through the ER at Seton Hospital in Austin. When I went home they referred me to the Seton Heart Failure Clinic and my follow-up care was first class. You may need a referral from a physician to get in there for treatment but I honestly believe the staff is in this to improve patients' lives first and formost. They monitored my meds and there was always a CHF nurse practicioner or CHF doctor immediately available to me by phone. Call (512) 324-1374 and ask to speak to someone about the procedure for being accepted by the Seton Heart Failure Clinic.
I was a Medicare patient and could not afford a digital scale and digital BP cuff, and they helped me get them. It seems like they might be willing to work with you vis-a-vis costs, meds, etc. It's certainly worth a contact. Be well. Muddyrds@hotmail.com
Bruce, February 1, 2003 - Hi, I have recently been diagnosed with CHF and have been doing a little research into treatment. The following 2 reports are encouraging but I wonder if anyone has further news of developments since this information is 2/3 years old now and medical advances seem to be quite rapid these days.
Animal studies suggest that injecting bone marrow stem cells into a diseased mouse heart can repair the heart and increase chances of survival. This study is from Donald Orlic and the National Human Genome Research Institute (NIH) and New York Medical College, presented at the 43rd Annual Meeting of the American Society of Hematology (ASH) last December. Researchers caused heart attacks in in mice, then injected them with proteins (cytokines) to cause bone marrow stem cells to move to their diseased hearts. Some circulating bone marrow stem cells travelled to the heart injury and stimulated some new tissue growth.
In the second study, in 2001, doctors at Duesseldorf University Clinic treated a heart attack patient with stem cells from his own body. Four days after the heart attack, doctors took bone marrow from the patient's pelvis. The stem cells in the marrow were concentrated outside the body and implanted in the damaged heart area the next day. The patient did improve and 6 more patients have been through the experimental procedure.
This research and treatment is related to heart attack but I assume that it is applicable to weakened heart muscle due to other causes as well. email@example.com
Jon's February 1 reply to Bruce's February 1, 2003 - Hi Bruce, I don't post much animal study data because it means very little to us in the here and now, or in the near future. See the CHF Surgery page for some adult stem cell therapy data, all of which is still very much uncertain.
Unfortunately, heart attack study data does not always - or even often - apply to something like idiopathic DCM. That's one reason I don't rush to post heart attack treatment data to the site unless I see a wider application in that specific instance. Much heart attack treatment data applies to preventing future CHF rather than treating it after it's a fact in your life. Whether such treatment has similar effects on well-established CHF (older heart damage) is unknown.
Just to let you know why I am not posting your study reports in full (not even close), it's because if 10 (or 50) readers started doing it, the message boards would just become a series of long, detailed study data. I hope to keep it more personal and personally useful that that. ;-) Feel free to post new data anytime, but the whole thing will not show up, just the gist of it. Sorry.
However, If enough people want a separate page to post study data on, I can set that up. :-) Jon.
Valerie, February 2, 2003 - Hi, After Club Med and medication change, I have had 6 or so cough-free weeks, after years of coughing and blowing my nose. I stopped the nasal spray Nasacort prescribed by my general doc on the advice of my cardiologist when my nose kept bleeding; not nose bleeds, just blood on tissue. Now, after 3 and 1/2 weeks off nasal spray, I am again getting a productive cough that keeps me from lying down. I have gained no weight. Is a productive cough with no fluid retention a result of CHF, or is it just allergy? Val. firstname.lastname@example.org
Bruce, February 2, 2003 - Hi everyone, Richard Malczewski, I received your e-mail but can't e-mail you back on the e-mail address you sent me. My message to you was returned to me as undeliverable. email@example.com
Sheryl C, February 3, 2003 - Hi, Has anyone in Oklahoma used Phillip Adamson, MD, who specializes in CHF? He is at the Oklahoma Medical Center. He is a board certified cardiologist. I think he is the only one in Oklahoma that specializes in CHF. Finally someone does. Now all we have to do is figure out if he is any good. Sheryl C. firstname.lastname@example.org
Myrtle C's February 3 reply to Dawn's January 28, 2003 - Hi Dawn, I have lived with depression for over 35 years. I have learned a lot in those years. My depression became worse after my heart attack. A cardiologist tried to tell me it was a "grieving process." I found a good psychiatrist who is a psychopharmacologist at a nearby university teaching hospital. He has given me good info. Many things can affect the chemicals in our brain. Viruses, heart attacks and heart failure can all lead to depression but as soon as a cardiologist would see my records with depression listed, they would blame that for my fatigue. The last cardiologist I saw looked at my records and actually read them. His response was, "all I see in here is that your depression is blamed for everything." This was nothing new to me. See a doctor to see whether meds can help with your depression. Don't let it become worse before seeking help. God is with you. Love, Myrtle. email@example.com
Dawn, February 3, 2003 - Hi, I thought you might be interested in a study the NIH is doing. It's called "Family Studies of Hypertrophic/Dilated Cardiomyopathy". This is a genetic screening for cardiomyopathies. Enrollment is still open with an expected enrollment of 1,000 patients. Participants and family members will be tested. The url is www.clinicaltrials.gov/. The study is 02-H-0283. At the time of my diagnosis, I thought there had to be a genetic link to this. It surely had to be more than a coincidence that my sister was diagnosed with idiopathic cardiomyopathy at the same age 10 years ago. firstname.lastname@example.org
Joe S, February 4, 2003 - Hi all, Praise God, there is something at the end of the tunnel. My cardiologist told me yesterday that I don't have to come back for 9 months. My blood pressure is perfect, I've lost 40 lbs, my cholesterol is 130, etc. After 64 years of not being able to walk uphill or work over my head I can now do some. It took a major life style change and a valve replacement, but it was worth it. Keep the faith because exercising and diet, although very dull, do work. Joe S. email@example.com
Cate M, February 5, 2003 - Hello one and all, I read the posts daily but have written only twice. On 1-23-03 I had a persantium cardiolite stress test done. I just got a call from the doctor's nurse and she asked me to show up at the hospital tomorrow morning at 11:30 for an angiogram (cath). For the past few weeks I have getting doctor appointments made in anticipation of possible abdominal exploratory surgery to fix a problem with my colon. Every time I think I am getting a handle on things, something else goes haywire. I just needed to share right at this moment. Family will know this evening when they come in from work. Be good to yourselves, Cate M. Mmoorcrzyct@aol.com
Steve, February 5, 2003 - Hi, I am currently on Social Security Disability due to cardiomyopathy. I will not be eligible for Medicare for some months yet because of the 2y-ear waiting period our government puts us through but I assume I will make it to a heart transplant in the future.
Can anyone tell me about how much out-of-pocket expense will fall upon me by going through the heart transplant process on Medicare? firstname.lastname@example.org
Katherine H, February 6, 2003 - Hi, I had my Coreg dosage increased the beginning of January and again this week. Since that first increase I have had a metallic taste in my mouth, particularly after I eat. I can't pinpoint it to any location within my mouth and my PCP thought it was due to medications. He suggested trying zinc supplements.
Has anyone out there had a similar problem? If so, what have you done about it? Thanks for any help you can provide. This does not taste good! email@example.com
Paul, February 6, 2003 - Hi, I have had IDCM for the past 4 years and the last cardio report stated that I am class 3. I am constantly tired and don't have a lot of impetus, but I still hop on my bicyle and pedal away; it gives me strength and seems to make the blues go away. firstname.lastname@example.org
Kathy, February 6, 2003 - Hi, Does anyone have a source for low-sodium mayonaise? I got the results from my echo today and there has been no change since October, but my CHF doc urged me to be more careful with sodium intake. Sigh. I am doing so much better than I was to begin with! I haven't had a ramen noodle since August or a hot dog or a Healthy Choice type prepared frozen dinner (have you ever read their sodium content? there's less salt on New York roads than in one of those babies) or any kind of convenience foods. However, I do eat out more than I should. I have now discovered low-sodium tuna packed in water, and one can makes 3 lunches, but I need low-sodium mayonaise. email@example.com
Jon's February 6 reply to Kathy's February 6, 2003 - Hi Kathy, Look for one of these commercial products online (maybe at Trader Joe's): Vegannaise, Nayonnaise, or Soyannaise. I can't guarantee they are really and truly low sodium, but check them out and let us know.
Mayonnaise is usually a blend of eggs and some exra egg yolks, sweetener, oil, lemon juice and water. You can make your own a little at a time until you get what you like. Just be aware that making this kind of mayonnaise involves using and eating raw eggs so be careful due to salmonella (pH level is what counts - you need some acidity in your mayo like lemon juice or vinegar). This kind of homemade also has a very short refrigerator life of maybe 4 days. I made my own years ago but it lasted such a short time I got tired of the effort and no longer have that old recipe.
Some of these web pages list recipes without eggs or otherwise different (or just possible):
http://allrecipes.com/advice/coll/all/articles/474P1.asp (leave out the salt)
http://starchefs.com/PPrudhomme/crabramekins.html (leave out the salt)
http://www.danish-deli-food.com/English/cookbook/recepdetail.asp?recid=109 (leave out the salt)
www.cybershingle.com/recipes/pages/potatoes-saladbasics.htm (leave out the salt).
For mail-order, also check out www.healthyheartmarket.com/Merchant/home.htm. I hope it helps, Jon.
Cate M, February 7, 2003 - Hi, I did have the heart cath done February 5 and now have another stent implanted. I found out that my EF is 64%. As with many of you, that is not an indicator of how I physically feel. Right now, some 30 hours later, I still feel puny, with the left side of my chest and back feeling very tired and achy.
Has anyone ever heard of a Angio-Seal Vascular Closure Device? It is a collagen sponge that is anchored to the interior wall of the artery then sutured with one stitch to seal the wound. It eliminates the need of the sandbag but lying still for several hours is still a must. It is absorbed in 60 to 90 days. St. Jude Medical has the trademark. I can't find an address or e-mail address in the pamphlet that I got. My cardiologist added Plavix for 30 days to my mix of 60mg isosorbide mononitrate, 10mg lisinopril, 60mg furosemide, 0.25mg digitek, enteric coated aspirin, all taken once a day. I also take 0.4mg nitrostat and albuterol as needed. My follow-up at the doctor's office is on February 25. Be good to your hearts and yourselves, Cate M. Mmoorcrzyct@aol.com
Jon's note: Also see www.chfpatients.com/text/angioseal.txt and www.chfpatients.com/text/FDAwarning.txt
Scott Brown, February 7, 2003 - Hi, I have a question for some of the knowledgeable minds on this board. My EF is 24%, but I feel pretty good most of the time, which is much better than feeling really crummy like I did 1-1/2 years ago at initial diagnosis. I have to admit I cheat on my sodium intake quite a bit. I do retain water but diuretics 4 times a week seem to work very well. I am really good with low fluid intake (1.5 liters) and follow that carefully. Overall, I feel pretty good right now, with the normal course of meds.
Does sodium in itself cause damage to our condition, or is sodium reduction a way to ease symptoms? I guess this is a pretty fundemental question, but I'm not too shy to ask. Thanks, Scott Brown. firstname.lastname@example.org
Tony P, February 7, 2003 - Hi Jon, It's been awhile since my last post. I know you weren't feeling well so I hope you're feeling better. I just got back my blood tests and my doc tells me that my liver count is high. He says I need further tests to find out if I have liver failure from heart failure. Can it be from anything else? If anyone on the site can help me with this question it would be appreciated. Wishing good health to all, Tony P. email@example.com
Jack D's February 10 reply to Scott Brown's February 7, 2003 - Hello Scott, The more fluid you have in your system the higher your blood pressure (generally) and the harder your heart has to work (always). Now getting your heart to work harder through exercise is a good thing because the exercise assists your heart and lungs in squeezing the excess fluids out of your tissue. It also ups the oxygen supply and helps flush crud out of your system.
Forcing your heart to work harder by flooding your system with unneeded excess fluid cause your heart muscles to stretch out of shape and allows fluid to pool in your extremities and in your lungs. Sodium makes your body retain fluid. Diuretics 4 times a week sounds like your doctor is an idiot. Diuretics are the most effective medication for controlling blood pressure. So with a cavalier attitude toward sodium combined with diuretics 4 times a week, a careful daily (even twice daily) monitoring of your pulse and blood pressure should look like a yo-yo and yo-yos are not healthy heart indicators. Cut down on the sodium and visit your doc. Make him explain why you are on such an idiotic diuretic protocol. firstname.lastname@example.org
Donna's February 10 reply to Cate M's February 7, 2003 - Hi Cate, My husband had a a collagen vascular seal almost 2 years ago after a cath. He like it and it desolved in about 6 weeks. He was one of the first people they used it on here and they watched him like a hawk. We understand that the hospital he was in no longer uses that device but we have no idea what happened or why. Give yourself some time. You just had the procedure done. I hope you start feeling better soon. Donna in Florida. email@example.com
Ruthie A, February 10, 2003 - Hi everyone, I need to vent and I could think of no better place than here. I cannot find a CHF specialist in this town so I was seeing a cardiologist who, although no specialist, treats a lot of CHF patients and is fairly knowledgeable about diastolic dysfunction, or so I thought.
About 6 months ago I saw him for the first time and I was quite pleased with the match. Just before the end of December I saw him again and we discussed my increased chest pain. I have had chest pain off and on and have had stress tests, but my arteries have been clear. My doc suggested we do a stress echo since it had been a year, and there may be some changes. So I did. I was told by his nurse on the phone a week later that there were no blockages apparent and that everything appeared normal.
Well, today I called to ask for a letter from my cardiologist to be sent to Vocational Rehabilitation as part of my medical package. I am applying for assistance to be retrained so I can work, even though I am disabled. After reviewing my stress echo results, he had his nurse call me and say that he was not convinced that I even had diastolic dysfunction! I have been dealing with it for over 5 years and now he declares I may not have it at all? Give me a break!
To make a long story a bit shorter, this guy refused to write a letter to Voc Rehab. In other words, he thinks it's all in my head and that I am actually quite healthy. If that's the case, what am I doing taking all these meds? How come I have been spending all this money on doctors and tests and emergency room visits and inpatient care?
Man, this really burns me! I wonder if there are any decent cardiologists in this town. This makes the 9th cardiologist I have fired in 5 years, and the 4th one since I moved to this city 3 years ago. Am I too picky or do we have a dearth of competent physicians? Thanks for listening. Ruthie A. firstname.lastname@example.org
Jon's note: We have way too many doctors with minds closed to what is in front of them - they believe they are so skilled and wise that there is no need to actually listen to the sick person whose life is at stake, or to expand their own understanding of illness and its real-life course. I see some of this in even the best doctors so I assume it is partly flaws in their training and partly from the exalted way they are treated in our society.
Cate M, February 10, 2003 - Hello one and all, Jon, thanks for the links on the Angioseal. I had never heard of it until now. The literature I got didn't have warnings. Thanks again. Be good to your hearts and to yourselves, Cate. Mmoorcrzyct@aol.com
Jon's note: Feel free to use the site search engine anytime
Deirdre, February 10, 2003 - Hi, I am having an EPS procedure done Tuesday. I would apreciate any feedback from anyone who has gone through this. Thanks to you all. email@example.com
Rebecca, February 10, 2003 - Hello, This is my first time trying to find out what I can do for a condition that no one can tell me I have. I am a 33 year old female and about 4 months ago I went to the emergency room with very weird heart palpitations, almost like my heart stops and than pumps very hard. I have always been very active and a healthy person. My mother is a nurse and states that with all my physical exams my whole life I have never had heart arrhythmia.
In the emergency room they drew blood and all my levels were fine. They gave me a beta-blocker, which did help. They said it's normal for some people to have the lower half of their heart stop and start again; not for me! It feels very weird. I did go to a cardiologist. It's not my mitral valve and there is no swelling in my heart or ankles. All heart walls and blood vessels looked great. He states he has seen more woman develop this symptom in their 30s yet he has no name for it. At times my heart is fine but at times it beats very hard.
Obviously, anything caffeine I can't drink because it hurts. I do exercise and have no pains when I do so. In fact, my heart seems more relaxed. I sleep well throughout the night and have no other symptoms, other than it beats hard at times, meaning it stops and starts a lot. The doctor told me to live with it and stay away from caffeine. Don't do what hurts, he said, but had no name for my condition. Well, I'm concerned. Please help with what it may be. Thank you, Rebecca. firstname.lastname@example.org
Jon's note: Get a second opinion soon - this is NOT normal for anyone!
Rick M's February 11 reply to Jack D's February 10, 2003 - Hi Jack, I wish you would stop trying to spare people's tender feelings, and just come out and say what you feel. <g>I think we should make a collection of your unvarnished comments and send them to the Medical Board to further the education of doctors. I volunteer to design the cover. email@example.com
Vee's February 11 reply to Jack D's February 10, 2003 - Hi, What's so bad about taking Lasix every other day if that's all you need to control fluid retention? I'm on a sliding scale and am very happy with that. Why take any medicine in a dose greater than needed? Diuretics don't extend our lives, they improve symptoms, and thay can carry risks as well as benefits. firstname.lastname@example.org
Margaret D's February 11 reply to Rebecca's February 10, 2003 - Hi Rebecca, it sounds like you are having PVCs, which are premature ventricular contractions. They are very common in people with normal hearts as well as those with some heart disease. It feels like the heart is skipping a beat and then has a very hard beat, but the heart actually has one beat come a little early and then there's a pause until the heart fills normally. It feels like an extra strong beat after that. They can be aggravated by caffeine, alcohol, lack of sleep, stress, many things. They can be frightening and annoying. Sometimes doctors will prescribe a med like a beta-blocker if you find PVCs are too bothersome. It is always a good idea to get your heart checked out first to make sure it is normal, like with an echo. However, if your heart is normal, PVCs are not harmful. email@example.com
Larry's February 11 reply to Vee's February 11, 2003 - Hi, I must disagree with you on your statement that diuretics don't extend our lives. The only fluid retention I have ever had is in my lungs. I take 25mg of Aldactone and 80mg of Lasix twice a day. If I quit taking them, my lungs will fill with fluid and without attention I would surely die. God bless, Larry. firstname.lastname@example.org
Cristina L's February 11 reply to Rebecca's February 10, 2003 - Hi, I agree with Jon that feeling the way you feel is by no means normal. When I was first diagnosed with cardiomyopathy and congestive heart failure I was 33 years old. No one believed there could be anything wrong with my heart; that is, until I almost died. Most people in general don't believe young women your age can have something like this. Please have the doctor run more tests like an EKG and Holter monitor.
On another issue, I would like to hear from those of you who are on Cordorone (amiodarone). I started the medicine 2 years ago after open heart surgery. I have many irregular PVCs but a Holter monitor showed no dangerous runs of them. I also just had an echo and my heart actually is stronger and my EF has actually increased to 40%. Considering I started with an EF at 5%, I feel pretty good about that.
Although my heart is strong and back to normal size, the extra beats and PVCs are making me absolutely crazy. I make sure I don't consume caffeine, chocolate, iced tea, lemonade or anything that I think would increase the extra beats. Whenever I try to wean off the Cordorone a little, they get worse again. I'm not sure this medicine is good to be on long-term since it can affect kidneys, lungs, etc.
I had tried CoQ10 and although I felt good in the beginning, I'm no longer sure it's for me. Any thoughts from anyone? email@example.com
Jon's note: Do you take a magnesium supplement?
Valerie, February 12, 2003 - Hi Jon, I have studied your site and really tried to educate myself. I had 7 good years but since my trip to Club Med November 29th, I've had troubles even though I'm being so much better about low sodium diet than I ever was before. My meds are different now: Coreg, Cozaar, etc. No Acupril meant 6 glorious weeks with no cough, but it is back somewhat now. I have an ICD now with the third wire for CRT pacemaker therapy.
I weigh myself every morning now per your site suggestion and it has been 94 lbs. Despite that, I recently experienced SOB in the morning but blamed my cough. The next night I dreamed I could not breathe and woke up to find that true. I was up from 2:00 AM and nothing worked - extra pillows, recliner, etc.
I foolishly went to school, thinking I could stay about 2 hours and then get a sub. I only made one hour and ended up being taken to the office in a wheelchair; our school now has a nurse who is bored. It was awful. I drove home, checked with my doc, took a second 40mg furosemide that afternoon, and slept like a log.
This morning I feel fine, although I'm staying home from school. What bothers me is that I now weigh 92.5lbs. Could this extra 1-1/2 lbs I have had since December have been fluid? Should I increase my diuretic daily? I also really cut back on fluids yesterday, not something my doctor suggested. I don't feel I've had DCM or CHF for over 7 years, I feel like I just got it in November because I now have symptoms, and I am not sure how to deal. Thanks, Val. VGRogers@aol.com
Jackie, February 12, 2003 - Hi Jon, is a magnesium supplement good generally for heart disease or for something specific? firstname.lastname@example.org
Alan, February 12, 2003 - Hi, I just recently had a stent implanted at age 44 and will be 45 in another 30 days or less. I have had a heart attack and even with the stent implant, I still feel quite weak. Anyone out there who has had stent implanted for over a year please contact me. email@example.com
Jon, February 12, 2003 - Hi, Valerie, I think you just started experiencing heart failure symptoms is all. Sooner or later it is bound to happen. I would not increase diuretic dose unless your CHF doc thinks you should. I would get an echo and physical exam to check heart function to see if it has changed. I would not drastically decrease fluid intake without talking to my CHF doc. Reading The Manual may be of some help at this point. The main thing is not to panic over your "first" symptoms; intellectually you knew this was bound to happen and now you just have to give yourself time to adjust to it emotionally.
Jacky, magnesium is good for some arrhythmias. See http://www.chfpatients.com/stew/minerals.htm. To everyone, I have not been replying much here lately because I am not yet up to speed on touch typing. Hopefully before too long, I will be, and then typing a simple reply will be easy enough that I can run my "mouth" all I want once again. ;-) Jon.
Tom S, February 12, 2003 - Hi, Saturday, February 8 marked a day I hoped would never come again, but there I was absolutely parazlyzed by pain in very joint, muscle, and organ in my body - including my eyeballs - and I was refusing to admit I was having a serious problem and needed to go to the hospital emergency room. The pain let up long enough to allow me the diginity of having my wife take me in rather than going in via the meat wagon.
Fortunately we have a pretty good hospital and specifically hospital emergency room and triage system so I spent only about 5 minutes in the waiting area before I was whisked off to my own room and set up with a continuous monitoring system.
Five days later I am back home but don't really feel like I should been discharged yet, but I know I can always go back to the hospital at a moment's notice. It had been a good 7-year run from my first real crisis with CHF and I knew it couldn't go on forever. Now I am apparently suffering from lung damage including emphysema. Even the doctors said this is seperate from the CHF and in fact my heart remains in about the same condition with an EF of 15%.
I guess the moral here is that you are never quite out of the woods even if you think you are. Anyway, I am glad to have survived this latest bout and come back with the cautionary tale for the rest of the CHFers. firstname.lastname@example.org
Valerie's February 12 reply to Jon's February 12, 2003 - Hi Jon, I think you are giving my intellect too much credit and as far as dealing emotionally, I am feeling very sorry for myself! However, I would really feel out there and alone without your site; I know it is helping others as much as it is helping me. Bless you, Val. email@example.com
Scott Brown's February 13 reply to Jack's February 10, 2003 - Hi Jack, I appreciate your feedback and advice on my sodium question. I did not appreciate the assumptions you made about my "idiotic" doctor, though. When I said I taking diuretics approximately 4 times a week, that is an average. I weigh myself once every morning and take an appropriate amount of diuretic according to weight gain. I also check my blood pressure periodically. My cardiologist thinks my blood pressure is in an acceptable range. He urged me not to focus on blood pressure too much. My cardiologist is, in fact, one of the best. If I am not a good patient, that is my own misgiving.
I prefer not to look at my occasional "cheating" on my sodium limit as being cavalier with my condition. It is just being realistic. There are many people on this board who knowingly or unknowingly exceed their sodium recommendations. We want to know the risks.
My dad passed away in December. He hated taking diuretics and eating sodium reduced diets. Following his transplant he was diabetic and hated that he could not eat the foods he used to love. When he passed away, I wondered how much it was worth all of the arguments over what he could and couldn't eat. I wondered if having a treat once in awhile would be the difference between life and death. That's where my question was coming from. I do care about my condition. Scott B. firstname.lastname@example.org
Jon's February 13 reply to Scott Brown's February 13, 2003 - Hi Scott, I'm going to butt in here although I really don't want to do so. You misrepresented your original post on the topic. You did not say you cheated on your low-sodium diet once in awhile originally; you said, and I quote: "I cheat on my sodium intake quite a bit." That is hardly the same thing and of course elicits a different response from saying you want "a treat once in awhile." So while Jack was his usual tactless self, you bear as much responsibility as he does here for any misunderstandings.
Low fluid intake may not be a good idea when combined with more than 2000mg daily sodium intake. Think about it - you restrict fluid to reduce blood volume, then you eat more sodium, which increases blood volume by causing fluid retention. What's wrong with this picture?
You said you do retain water so it is not unreasonable to assume that 4 diuretic doses a week is not getting the job done, maybe because of the extra sodium you eat. If you stuck to a low-sodium diet, you might be able to significantly reduce your diuretic use, easing the burden on your kidneys, which must eliminate most of the drugs you take as well as deal with the added fluid being retained.
No matter how it is when you measure it, higher sodium intake also raises blood pressure to some degree, which increases the heart's work by raising afterload. It also strains the circulatory system further because the pressures contained within it are higher.
That's all off the top of my head. I'm not going to look it up because I shouldn't be typing this much right now. I urge you to look it up. Taking all this into account, in general I agree with Jack that you aren't taking your illness seriously enough, probably because you "feel pretty good right now." I assume your doctor does not know you cheat "quite a bit" on your low sodium diet, so it's not him that's the idiot here, I agree. Neither are you - you just need to get serious or you will pay for it down the road.
To everyone, do not use any phrasing suggesting anyone here is without compassion. Tact does not equal compassion and people who take the time to reply, whether you like the reply or not, are making an effort to be helpful. This is doubly true since many of us feel like horse puckey most of the time, making replies more effort in every way. Jon.
Tom S, February 13, 2003 - Hi, This is to expand a little bit on what has happened to me that took me cojmpletely by suprise. Seven years ago I had a major onset of CHF with grossly enlarged legs, barely breathing, in really serious medical trouble. At the time the doctors thought only a transplant would keep me alive and I was actually put on the transplant list. At the time I felt transplants were risky and offered little more time of quality life than what I already felt I had, so I basically told the doctors I wanted to go the medical route instead.
While I have not been on top of the world I have been able to function on a very limited basis, raising 5 children and running the basic day-to-day household while my wife worked out of the home. I qualified for disability relatively fast given my heart had an EF of 15% at the time. Later that went to 30 but never much above that.
Two years ago I noticed that I was losing ground again and blamed a lot of that on my type II diabetes and weight gain. My weight spiraled upward from 216 to 351, where it topped out earlier this year. I started a drastic diet program and tried to become more active. Unfortunately, the activity finally caught up with me and after several days of being absolutely bed bound I went to the hospital.
Besides having atrial fibrillation on an ongoing basis, I now am diagnosed with emphysema and other lung disorders. I spent 5 days in the hospital and am home now on breathing treatments and high cost inhalers and meds that for 3 prescriptions cost $176. My weight is on the way back down and currently sits at 344.
My cardiologist did say there was no correlation between the CHF and the lung diseases, and said my heart had not weakened beyond where it had been (current EF 15%) and if I went back to what I was doing before I tried to get too active, I should be fine for several more years. So guess who is going to sit back and "buy cotton" for awhile? Little selfish ole me, that's who! email@example.com
Natalie K, February 14, 2003 - Hi, I want everyone to know about a site called www.iGive.com. I don't know if it's legitimate, but it seems to work. You use it as a gateway for online shopping so that your chosen charity can get a percentage of your purchase price from certain online merchants. I have registered chfpatients.com and used it with Amazon.com. I would welcome feedback if anyone finds more information about this or other sites that would help us help Jon. firstname.lastname@example.org
Ruthie A's February 14 reply to Tom S' February 13, 2003 - Hi Tom, I am sorry to hear that you have had a rough time. I have a few curiosity questions. Did your doctor tell you to not be active at all, or just tone it down? It seems to me that in the rush to lose the extra weight, you probably did too much too quickly, thus getting youself into big trouble. What about doing a little bit of exercise, slowly building up to what you can tolerate? Is that a possibility? What about a cardiac rehab program? Have you asked your doctor about mild exercise? It seems to me that just sitting around buying cotton won't help you any more than going gangbusters. In my humble opinion, of course! ;-) Ruthie A. email@example.com
Lisa M, February 14, 2003 - Hi, I am age 34 and a single mom of 2 boys ages 5 and 7. I was diagnosed with cardiomyopathy in June of 2000. At that time my EF was 37% and my cardiologist put me on Altace, Coreg, furosemide, and Aldactone (spironolactone), which helped me a great deal. I got my EF up to 60% and I felt great. I started work again in April, 2002.
Unfortunately, I started to have shortness of breath again and felt very tired. I had an EKG done and was showing second degree AV block. I was admitted to the hospital with CHF on January 26, 2003. On Saturday, February 1, 2003, they put in a pacemaker (I haven't seen anything on your site about pacemakers, I will keep looking. I was released Monday, February 3, 2003.
My cardiologist told me I was fine and I could return to work on Wednesday. I have not returned to work and it has now been almost 3 weeks. I'm tired since I do have 2 young children to deal with. I have not been that impressed with this cardiologist and have found a new one, but unfortunately I haven't been able to see him yet; I have an appointment with him mid-March.
I know I feel fine most of the time but I am very afraid of returning to work, only to end up back at the hospital. I need to let my work know when I am coming back. I was thinking I could go back in small intervals until I see the cardiologist. What do you think? Am I stupid for thinking I should go back or should I be quitting and looking for a new way to support my family? firstname.lastname@example.org
Tom S' February 15 reply to Ruthie A's February 14, 2003 - Hi, My clarification wasn't much of a clarification. My rush to diet was not as rapid as it may have sounded. Instead of a sandwich for lunch I replaced it with a fresh salad or fruits and vegetables. Breakfast was hard because because I like eggs, toast, and bacon. I was trying to eliminate the bread as much as possible. Fortunately, I do like fruits and oatmeal (slow cooked overnight) and Cream of Wheat so that wasn't hard to stomach. I cut back on portion size as much as possible but never did I feel starved.
As far as activity goes, it consisted mostly of doing a lot of driving around town playing Mr. Mom to the kiddies, primarily because my wife works 28 miles from home and does not return from work sometimes until 7: PM at night. My 11 and 12 year old girls and my 9 year old son have basketball practise, games, choir practice and Scouting. My 14 year old has a whole ream of activites including varsity basketball, Scouts and church activities. I subsequently also got trapped into doing more for these activities and it got to a point where I was so fatigued I could barely sit up straight during meetings and games, and I suffered a lot of muscle aches and pains, and horrible kidney pains. This was a warning I should have listened to.
As far as my doctors go, my cardiologist would offer a program if he thought I could tolerate it and obviously he doesn't. In fact, not more than 2 blocks from my home is a full blown cardiac rehab clinic complete with indoor pool and every device known to the cardiac rehab industry. The clinic is run by the same outfit that pays my cardiologist, so I guess that should pretty well answer that question. My pulmonary doctor, on the other hand, advises moderate exercise but when I spoke to the cardiologist about it he said to make it extremely moderate.
Jon wrote many moons ago in this forum that it is hard to really communicate everything in the space allotted and that's very true. What is one man's medicine may well be another's poison. We all are afflicted to greater or lesser degrees with this thing called CHF. My case is severe and I have been extremely joyous that I have survived this long. email@example.com
Colette, February 15, 2003 - Hi, My husband was diagnosed with CM in March of 2001 after suffering a stroke and heart attack. His EF was 15% and he was put on disability. He is being re-evaluated now and has not been asked anything about his chest pains and SOB. His EF is around 35 to 40% now but he is having more problems now than when he was diagnosed. The stroke affected his eyesight and the last exam showed he had trouble tracking. They have now scheduled him for a neuropsychological exam. Has anyone else had this same experience? Thanks, Colette. firstname.lastname@example.org
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.