The paperwork never ends The Archives
Loved Ones - June, 2003 Archive Index

Angela 6-3     seek suggestions on recovery & more
Kathryn 6-4     just need to vent
Mike W's 6-4 reply to Angela's 6-3     coping with your dad's illness & more
Chris B 6-4     how long can my brother live in class 4?
Shery C's 6-4 reply to Angela's 6-3     hang in there, coping
Elaine J 6-5     seek CHF doc in Tucson, Arizona
Mel G's 6-5 reply to Angela's 6-3     my experience
Athina 6-12     natural progesterone
Lisa 6-13     how long will my dad live?
Diane 6-14     does anyone have leg problems like this?
Lorraine's 6-14 reply to Lisa's 6-13     life expectancy
Jim I 6-16     seek device implant experiences
Rick's 6-17 reply to Jim I's 6-16     device implant experience
Lisa Z's 6-17 reply to Jim I's 6-16     device implant experience
Sheryl C's 6-17 reply to Diane's 6-14     why is he carrying so much fluid?
Diana's 6-20 reply to Sheryl C's 6-17     update and thanks
Anita S 6-20     Phil got his SSD - don't give up!
Kristy 6-20     seek end-stage CHF information
Ellen 6-22     seek heart transplant information
Susan B 6-23     venting and a question
Natalia's 6-23 reply to Lana's 5-29     coping with caregiving
Natalia's 6-23 reply to Ellen's 6-22     heart transplant was my answer
Susan B's 6-24 reply to Susan B's 6-23     dieting experience
Robert 6-24     irregular heart beats and Coreg question
Jon's 6-24 reply to Robert's 6-24     beta-blockers are anti-arrhythmic drugs
Terry 6-25     please help me understand this
Angie 6-26     why is he still having these symptoms?
Jon's 6-26 reply to Angie's 6-26     some possibilities
Jon's 6-26 reply to Terry's 6-25     some possibilities

Angela, June 3, 2003 - Hello, My dad is 55 and was very young at heart - roller blading, surfing - you name it. He has had asthma all his life, smoked most of his life, was diagnosed with very early stages COPD. He always had yearly physicals and saw his doctor for asthma and COPD. He quit smoking nearly a year ago with the help of an antidepressant called effexor, which was used to curtail withdrawal symptoms. His last physical was right before he began taking effexor, which was refilled by phone. He did not see a doctor till onset of CHF. He only had symptoms one week prior to hospitalization for CHF.
     The first hospital's staff thought it was a-fib and sought to bring his heart rate down and kept him for overnight observation. Everything went downhill from that point. About 24 hours later, they commented that they gave him enough medicine to slow the heart of an elephant down. He began hallucinating and nearly lost his vital signs. They had to cardiovert him and fly him to a special cardiac hospital.
     The outcome was that his EF was 15% and his lungs were fine. He was on life support and would not wake up for 10 days. Stroke was suspected. along with other things due to the delay in his waking up, but nothing was proven wrong. They had him too sedated to extubate and he had mild dementia. He was pretty paranoid when he awoke - he had no idea he had any heart problems!
     We are 4 weeks down the road and his life has completely changed, from surfing and roller blading to almost nothing. I was wondering if there is a general recovery time from the hospital? I know there is no cure, but just to get used to the meds and the lifestyle? Not only is he on low sodium but also low potassium diet. It is hard to find recipes for both. His vocal cords are pretty bad and he is still having panic attacks at night along with a myriad of emotions. I am very worried. My stepmom is doing a very good job taking care of him, but they also have my 6-year-old and 15-year-old brothers, which keep her busy.
     Should I move closer to them? I don't want to fly up in a CHF emergency. I would like to spend time and help in any way I can while he is still here, as opposed to CHF taking his life. I am 27 with 2 kids and a fiance. We live 17 hours away, but I am willing to move if I should, despite any objections from my fiance. Is this realistic? Any suggestions?

Kathryn, June 4, 2003 - Hi everyone, It's been quite a while since I posted anything here. My son's last visit to the cardiologist was in January of this year. His EF was up to 55% at that time and he was feeling great, with no CHF symptoms. The doc had taken him off Coreg earlier in 2002 and now he adjusted his digoxin down from 0.375 mg daily to 0.25mg. Just recently my son's job - he is a supermarket checker - has been giving him grief because his diuretic causes him frequent trips to the bathroom. He takes 40mg Lasix each morning. So my son began not taking his diuretic before going to work.
     The upshot of that was a trip early last Saturday to the ER with SOB and mild tachycardia. They gave him a shot of 20mg Lasix and he peed his brains out. He has vowed to stop messing around with his meds but now his work has said they may have to lay him off because his health causes too many issues with his reliability. He actually went in and worked a full 8-hour shift on the day he had his trip to the ER for the diuretic booster shot.
     I think my son may be learning some very difficult and painful lessons. I was thankful to read the blurb about changing jobs and insurance info on the other page. That might just come in handy soon. I will share it with my son and of course we live in Oregon, with the highest unemployment rate in the nation.
     I guess I am just sounding off on how difficult it is for people with "invisible" disabilities to get a fair shake in the working world. Oh yeah, my son also has bouts with kidney stones. The urologist wants him to drink copious amounts of water and the cardiologist wants him to limit fluids - what a mess!
     Thanks for letting me vent. I'm just the mom here but I am exhausted just witnessing this stress. My son is 29 and still lives at home. Grocery stores don't pay a living wage and these trips to the ER add up the dollars. Thanks everyone! Kathryn in Portland, Oregon.

Mike W's June 4 reply to Angela's June 3, 2003 - Hi Angela, I am sorry for the illness of your dad, but the first thing is for you to calm down. I don't know your dad's actual condition and I am not a doctor but the fact is that a month after a nearly fatal medical crisis your dad is still here, and can possibly be for many more years! It is way too early to think about such things as moving out to be with your dad. It doesn't sound like the doctors have told you that your dad is going to die in a week, a month, etc.
     Take a deep breath, exhale, and repeat. Your dad has been through a horrible time and is going through the emotional aftershock, and so are you and your family. Everyone is panicky. You need to first get information from the doctors about what your dad's actual condition and prognosis are. Secondly, as a clearly very loving daughter you need to arm yourself with information, which is your friend. This cannot be stated enough. You've come to the right place. Read The Manual here and other things.
     It's a very real possibility that things are not as bad as you think. They are almost certainly not as bad as they feel to you right now. I've been living pretty well with CHF for almost 6 years. There are members of this board who've been doing pretty well longer than that. Use this board as a resource. Let us know how things are going. Again, deep breaths. :-) Peace, Mike Wafkowski.

Chris B, June 4, 2003 - Hi, I am new here. I stumbled upon this site as I was looking for info on CHF. My brother is 37 and was born with a heart condition called Tetrology of Fallot. He wasn't supposed to live a year. When he was 17, he had corrective surgery and then another a year later. His life was so wonderful after his surgeries but my family and I have watched his health decline over the last 5 years. It started with a few bouts of ventricular tachycardia. He was studied twice and ablations were very successful. He was put on amiodarone (Cordarone) to help keep his heart paced.
     Here we are to this year. He spent 2-1/2 weeks in February in the hospital with septicemia in his leg. Three weeks ago he went back to the hospital due to weight gain and legs looking like tree trunks. He was having VT and they were able to defib him out of it. They tried ablation again and weren't too successful. Two days later he had an ICD put in and of course it didn't work. They had to add a third lead in (incision on side of body under armpit) and that worked. The doctor was having trouble balancing fluid. If they started to get the fluid out, my brother's kidney function would decrease. He also has neurological problems, most likely due to lack of oxygen after birth. He is borderline retarted.
     Anyway, after my long story his doctor knows that for him to be happy, he needs to be home. They were able to balance him and sent him home to my mother's. His wife is mentally disabled and it's better at this point for my mom to take care of him. We were told Saturday that his prognosis is not good. They sent in a transplant team, but he is not interested in that.
     They say he is in class 4 heart failure. I know he isn't going to get better, but how long can someone live in class 4? I love my brother, but I don't want to see a long painful death.

Shery C's June 4 reply to Angela's June 3, 2003 - Hi Angela, At the young age of 50, I had a stroke along with my heart attack, so recovery was very slow. I was on a ventilator for about the same time as your dad. Boy, did I have some weird hallucinations?! Afterward, there were days when all I could do was bathe and brush my teeth. It is very hard to go from an active full life to doing almost nothing. Expect some depression and anger. He should be talking to friends, family or a counselor about his feelings. If his depression goes on too long, then the doctor should be told about it. He needs to find encouragement if he has 2 days in a row that he feels good.
     If he is compliant with his diet, taking his meds, and a slow doctor-approved exercise regimen, he will get better. There is no quick fix here. He needs to keep a positive attitude and not let his disease rule his life. He will have to learn to accept certain limitations and work for new goals. There is no way to put a time schedule on his feeling better. He will go forward, then slip back. He needs to read The Manual, the message board and not get discouraged.
     It is wonderful that he has such a supportive family. As for your moving, no one can answer that. I hope this is a wake-up call for you as to life style. Start now with your own family's diet and exercise needs. You and your kids have the same potential for heart disease. I hope this helps, Sheryl.

Elaine J, June 5, 2003 - Hi, Does anyone out there have a CHF doc that they can recommend in Tucson, Arizona? My 95-year-old mother is not doing well under the care of her current physician, who is a cardiologist but apparently more interested in cardiac catheterization, heart attacks, and things of that nature. Thanks!

Mel G's June 5 reply to Angela's June 3, 2003 - Hi, I had a story somewhat like your father's: Very active 44-year-old woman, 4 extremely active teenage kids and a husband specializing in "Outdoor Adventure Education." I became very ill almost out of nowhere and after being flown by emergency air ambulance, spent 2 weeks in Cardiac Intensive Care in another city. I had cardiomyopathy with an EF of 21%, very serious global damage to my heart, and they referred me to a tranplant hospital in another state.
     As has been said before, everyone heals at their own rate so no one can predict your dad's future. I felt a little better after 6 weeks and incrementally better through the following 6 months. I felt I was on a plateau at the 6-month mark but then by the 9 to 10-month mark I realized I could do so much more than I ever thought I would be able to again. I felt so much better than I had for a long time - even pre-illness, I think. So, who can say?
     At the one-year mark I was celebrating my health, thinking it would never, ever be this good again. I'm currently halfway to the 2-year mark and I still feel well. I am surprised and very grateful to be able to get up and around. None of the doctors anticipated I would do this well. I've been taken off the transplant list and that plan is on indefinite hold.
     The first few months - I'd say up to 6 months - were an enormous period of adjustment to a new type of life. It's not exactly as your Dad left it but it's a perfectly good life nevertheless. Weighing, pacing your activity, low-sodium, low-fluid (for me, low-carb too), all the meds, all the tests ... facing your own mortality is huge! With support from you and the rest of the family, a good doctor that he communicates well with, and most of all just "tincture of time,quot; he'll recover. All the very best for you and wishes for your father's speedy recovery.

Athina, June 12, 2003 - Hi, I don't know if this information will benefit anyone but I recently received an audio tape of a talk given by Dr John Lee about natural progesterone. One of the topics covered was the benefit it may give to women who have gone through menopause in relation to heart disease. Apparently, some studies support this. Again, I'm not sure if this can help anyone but it may be worth looking into. He has a web site you can browse.

Lisa, June 13, 2003 - Hi, I wonder about my dad and how long I will have with him. I planned on getting married and will push up the date if I think it is necessary. My dad has heart failure, dilated cardiomyopathy, and arrhythmia. We found out about this in June of last year and he has been diagnosed with all of the above since.
     He is very active and takes lots of meds. They implanted a pacemaker about 6 months ago and he still experiences irregular heart beats and fluctuating blood pressure. He is a very busy guy and has not slowed down much, other than a period awhile ago because he was quite short of breath, but that has since subsided.
     Does anyone know from experience how long I might have with him? I don't know whether it is a year or 5 years. Doctors are reluctant to estimate. Please let me know. Thank you.

Diane, June 14, 2003 - Hi, My husband (87 years old) is class 4 and end-stage, has very swollen legs and feet, and now his lower legs are getting red and mottled, and the left one is very sore. He probably has about 15 lbs of fluid on him that need to come off - he has gained this in the past 3 months - but Demadex doesn't do much so he will probably need a trip to the hospital.
     Does anyone else experience these kind of leg problems? He was diagnosed in August of 2001 with CHF and has been slowly getting worse. He now is very short of breath just getting up out of his chair and wears oxygen 24/7. Our home health nurse says they can only treat symptoms and this decline is to be expected, but it doesn't make it any easier on us.

Lorraine's June 14 reply to Lisa's June 13, 2003 - Hi Lisa, I'm sorry about your dad. There is absolutely no way anyone can tell you how long he may live. It depends on his overall condition, how agressive his doctor treats his condition, and how well he takes care of himself. You didn't give his age but my husband is 76 and has had CHF since 1994. He had a quadruple bypass in 1988. More than 2 years ago his doctor started him on IV therapy because he was in class 4 CHF.
     He has had his second pacemaker since 1994 and has lasted much longer than the doctors thought he would last. He is hospice care now but was able to be out and around until a couple of months ago. He has had 15 years since he was first diagnosed with coronary artery disease.
     So just enjoy your dad every day and don't try to figure out how much time you might have. God bless you and your dad. Lorraine.

Jim I, June 16, 2003 - Hi, I just recently discovered this web site. My father was diagnosed with CHF last fall and it's been a roller coaster since then. He has had the cauterization in his heart where the misfires were adjusted, putting his heart back in rhythm. He has been on Lasix for several months and has discontinued his blood pressure medicine because it's right around 100/80.
     The next step is is a pacemaker and defibrillator, which they hope to put in in the next 2 weeks. Has anyone had this procedure or known anyone who has? The doctors hope it will put him from class 3 to class one. I'm needing a lot of encouragement. My dad will be 55 next week, and it's amazing how things have changed since last September. I wish all of you continued support and good health. Jim.

Rick's June 17 reply to Jim I's June 16, 2003 - Hi Jim, I am the same age as your father and was diagnosed with CHF last summer. I had an EP study and an ICD implanted last November. Aside from the limitations for the first few weeks, I have had no problems (or zaps thankfully) but I and my family have some piece of mind. My father died of SCD when he was 50.
     I retired from the auto repair business last year and have been approved for Social Security disability. I hope to be around for quite awhile getting my money back! <lol> I still enjoy archery and gardening as long as I don't overdo it and rest when I get tired. This is a great site for information on CHF. Your father should read it all, especially The Manual. Rick.

Lisa Z's June 17 reply to Jim I's June 16, 2003 - Hi Jim, My dad is 73 now and we live in the Pittsburgh area. In 2001 he had an ICD implanted after 2 episodes of cardiac arrest. Fortunately, to this day he has never experienced a shock. He suffers from CHF, DCM, type II diabetes, and last September he had a stroke.
     We have nicknamed his defibrillator "Fibby" and we call her his little guardian angel. It is another way to look at it and believe me that I feel much better knowing that he has something in there to try to restart his heart again should it stop. He doesn't feel any discomfort from it, and we are all grateful for such wonderful technology. He stays away from cordless power tools, airport gates, running engines, and holds his cell phone on his other side.
     He had prostate surgery in February of this year and a technician deactivated his ICD prior to surgery and reactivated it post-surgery - no problems. Don't worry too much, just be as educated as you can (read The Manual) and talk with his doctors frequently. I even made up a little emergency card for my dad with all his history, doctors, meds, Fibby, etc., and everyone in my family keeps one in their wallet. It has come in handy many times.
     Good luck, and you and your dad will be in my prayers. Lisa.

Sheryl C's June 17 reply to Diane's June 14, 2003 - Hi Diane, The big questions here is why does he have 15 lbs of excess fluid? What does his doctor say about this? He, you, and his doctor should have discussed what to do with any rapid weight gain. You don't wait until it is a big number like 15 - notify him now.
     Are you watching his fluid and salt (sodium) intake? What medications is he on? Have you read the standard CHF medications on this site? He has to make his life as good as he can. Talk to the doc about things you can do to make him more comfortable. Does he have his legs elevated when he is sitting down? Feed him 6 small meals rather than 3 each day. Eating takes a lot of energy and you want him to maintain good nutrition. If he really needs it, cut up the food. That can be exhausting. Make his meals from fresh or frozen foods. Read the labels for hidden sodium.
     Hopefully, you have a great doctor that will discuss this with you and not just write your dad off because he has CHF. Your home health nurse doesn't seem to be on the ball here if she let him gain all that fluid weight without suggesting that you contact his doctor. After you talk to the doctor, be sure and convey what he said to this nurse.
     It is very hard to watch someone you love suffer. My heart goes out to both of you. I hope you have family to help you. Get rid of that fluid now! Sheryl C.

Diane's June 20 reply to Sheryl C's June 17, 2003 - Hi, Thanks for the suggestions, Sheryl. We do watch his weight every morning, watch his sodium, and the home health nurse does report in to the doctor. They do labs on my husband every week and they always come back okay. The doctor finally increased his Demadex this week after I called and talked to his nurse, and it is helping a little bit. His legs don't seem as swollen either. Of course, with the increase in Demadex, his BP is now around 88/50. It's just a never-ending circle, seems like. One thing to help him does something else that affects him the other way.
     Anyway, I appreciate the response, and you're right - it's very hard to watch someone you love suffer with this disease! I hope you and yours are doing well. Diana.

Anita S, June 20, 2003 - Hello, I just wanted to share some good news. My husband Phil finally got his Social Security Disability approved. He went before the judge today and the judge had already decided to give it to him, so Phil didn't have to say anything. The vocational expert said that Phil was unable to even do a sedentary job. This is the third time that Phil has been before the judge and he has been fighting this since 1994. The judge would only grant his disability from 1999 until now but at least he got it.
     I just thought that some of you might need to know that you must never give up. Just keep hanging in there. Also, this time we had a lawyer, so like Jon says, it is very important most of the time to hire a lawyer. Take care. We'll be thinking of all of you.
Jon's note: Great news! Mind-boggling it took so long in Phil's case.

Kristy, June 20, 2003 - Hi everyone, I just stumbled on this board while researching CHF. My grandmother is 94 years old and has CHF. She is in very poor health from diabetes and her age. Her doctor released her 2 weeks ago and told the family there was nothing he could do. My family wants some info regarding the last stage of CHF and what to look for during the end. We are not sure what to expect and we want as much info as possible so we'll have enought time to contact the rest of the family that live in other states. They have a meeting with her hospice nurses next week, but I decided to research on my own as well. Any info would be greatly appreciated. Thank you. Kristy.

Ellen, June 22, 2003 - Hi, I have not posted in a long time but I read the posts from time to time. My husband has had CHF and cardiomyopathy since 1998. He had an ICD put in in 1999. He never took his illness seriously although he was considered disabled quite quickly. He has had serious bouts of depression, for which he takes two antidepressants. His depression has leveled off.
     We learned in April that his condition had gotten worse and his only choice is a heart transplant. When he was told this, his attitude changed. All of a sudden he decided that maybe a low-fat, low-salt diet might be best. He has lost 30 lbs but still needs to lose at least 30 more. We just learned today that he is on the heart transplant list, after going through quite a regimen of tests. We met with the surgeon about 5 weeks ago, and he told us that without a heart transplant Wayne would have a 50/50 chance of surviving 2 years. He is only 50 years old. Now he is excited about getting a new heart.
     He was told he is at stage 2. Does anyone know what this means? Does this mean he will have to wait longer? When we talked to the surgeon, he said we would be looking at 6 weeks to 6 months. We don't go back to the doctor until July 1st os I am wondering what these different stages mean, and if anyone has any insight on this. Thanks.

Susan B, June 23, 2003 - Hello all, I just need to vent. It has been a roller coaster of a month for us. My husband and I started a new diet. It was a little high on protein. He was to eat 4 oz 5 times a day with carbs and veggies for 5 to 6 meals a day on the 6 weeks body makeover. We were eating chicken because he has gout with his CHF and cardiomyopathy, and chicken works best with his system. He was losing about one pound a day.
     Then I got the flu and of course he got the flu too. His foot was hurting a little but he was not sure if it was gout or not. So on the second day he took indomethacin. His foot was much better, so he knew it was a gout attack. He was not up to eating his daily salad - not good with his daily dose of Coumadin! Well, the weather has been very stormy here in the midwest. At 1:30 AM, I got up to let the cats in and to check on the dogs. He woke up and found himself in a pool of blood. His nose had started bleeding in his sleep. We just went through this 4 months ago.
     After a little while in the bathroom he told me that he could not get his nose to stop bleeding. My husband works at 911 so I called his coworkers and asked them to send over some help to see if he was well enough for me to take him to the ER or if they needed to take him. Last time he was bleeding out his tear ducts, which freaked us both out. His blood pressure was very high - a first for him - but he was stable enough for me to take him to the ER.
     The ER was very quiet. I don't think I have ever been there when there were no other patients waiting in the waiting room. After about a half hour to an hour his nose stopped bleeding. At least they did not have to pack it again. The ER doctor used a laser on the inside of his nose. You could see burnt skin on the outside of his nose and it looked painful. He said that he was fine. His INR was up to 4.1 (it was 3.1 the day before) and his blood pressure was 200/98. We got back in bed at 6:00 AM. I took off work most of the day.
     The next Monday his nose started to bleed again. I think the burnt part was starting to heal and was pulling off. His blood pressure was still very high for him, at 150/97. His PCP was out of town so we had to see another doctor in that group. I hate starting over with doctors. We just have to explain too much. Our concerns were dismissed. We believed it was the gout med that raised his blood presure, which was confirmed when he completed the treatment and stopped taking the drugs and his blood pressure returned to normal. I was upset because this fill-in doctor did not check with the CHF doc before giving my husband a drug to lower his blood pressure. We checked with the CHF doc before buying the drug. Has anyone else had this happen?
     Then when we got home, he was putting up a fuss to mow the yard. We have a big hill in the front yard. Thankfully we have friends and family who are more than willing to mow the yard when we need it. My father eats supper with us every week and he offers to mow it anytime we need. One of our best friends from college lives around the block and he mowed it.
     Now, my husband is off the gout meds and well enough to eat his salad. His INR is back to normal - after 3 weeks of adjusting his meds. However, we are looking for a diet with lower protein for him. I am doing fine with the higher protein but his gout must be kept under control. He also got his CPAP machine and is sleeping better. He doesn't snore any more! So I am sleeping better too, now that I am not checking his nose for bleeding every night while he is asleep.
     Has anyone else noticed that when they get sick, their loved one gets sick too? Before my husband got sick, I would get the flu and he would not. Now if I get sick, he always gets sick too. I have been trying my best to stay well and to keep him away from sick people. I did not get to see my mother for 3 months this spring because we did not know what she had. It turned out to be sarcoidosis and bradycardia. She is getting a pacemaker July 1. Thanks for a place to vent. Susan B.

Natalia's June 23 reply to Lana's May 29, 2003 - Hi Lana, When I had heart failure this year at age 27, all I was mad about was how my life had been taken away from me. My fiance (we are still together) was more than there for me. He actually took time off and moved in with me when there was no one else to help me get around after a stroke. I can see how you have taken it upon yourself to provide this caretaking role from what you wrote.
     Ask yourself how your husband feels now that you act perhaps more like his mother (or sister as you wrote) by pouring his meds, preparing his meals, etc. Also, think how you would feel if your life was changed as his was. Maybe he had plans for retirment with you, or something and now he cannot actively work towards that same future.
     You asked about sex. When you are really sick, sometimes the least thing on your mind is sex. I used to tell my fiance that when I think of sex, I think of young, attractive, full of life people going at it like rabbits, following the natural instinct to reproduce our strong and healthy genes. Now we may not feel so sexy if every day when we may be worried about our now more uncertain life. I surely did not. It took a heart transplant, lots of love and coaxing, and about 2 months post-transplant for me to warm up again.
     I suggest you look inward before getting angry at your husband. Analyze where your anger comes from. Try to understand what he feels and show that you do. That is what supporting him is all about. Good luck, Natalia.

Natalia's June 23 reply to Ellen's June 22, 2003 - Hi Ellen, You can find information about the stages of heart disease at (Jon's note: Heart classes are described at I had a transplant March 30, 2003 and although I was terrified at the time I will never regret it. If your husband is motivated to live and likes to be active, then he might consider it. I was class 4 and had to stay in the hospital while on the transplant list. Waiting time depends on blood type, body size, degree of illness, and more. While type A and B blood is most common, O and AB are least common. You wait longer the rarer the type because the organ has to match much of your body chemistry. Body size is a factor because it is possible to put a medium to large heart in a medium to small patient, but a large patient needs a large heart to pump out that much blood. The smaller you are, the less you wait. Degree of illness means that if you are lying in an critical care bed with a respirator and holding onto dear life, then you get first pick. If you are at home, you come after patients who are in the hospital. There may come a time if you wait long enough, when a patient might have to be in the hospital on IV meds to stay alive. That was me.
     I was 27 when I got sick due to a virus. The doctors set me up with a transplant team and all kinds of professionals met with me before I was listed. My surgery was done at the Duke University medical center in Durham, North Carolina. Anyway, I am alive now because of the transplant. A week after surgery, I was so full of energy that I could not believe I actually had come to accept CHF as a way of life. By all means, get a second opinion if you want, but do not say no to transplant out of fear. Natalia.

Mike W's June 24 reply to Susan B's June 23, 2003 - Hi Susan, I really can't comment on your horrible experience except to bluntly say that anyone with the health problems of your husband to be on any diet where one loses a pound a day is nuts! I'm not inferring that the horrible experience was a result of the diet; I don't think it was the cause but I don't think it helped to stress one's body like that in such a situation.
     Having lost 110 lbs and maintained it +/- 10 lbs over the last 25 years I have some experience with dieting. It took me 18 months to lose that weight. It was the slow route but no great physical stress. I mean this to be constructive/supportive criticism, but I am truly horrified by your description of the diet. Peace, Mike Wafkowski.

Robert, June 24, 2003 - Hi, My wife was recently diagnosed with CHF. Her internist has her on 200mg Toprol-XL, an ACE inhibitor, Lasix, and Imdur. We have an appointment with a cardiologist in a few days. She is also diabetic. From my reading it appears that Coreg gives better overall results and in particular, better results for diabetics when compared to Toprol-XL. My wife also has an irregular heartbeat (skipped beat). My reading indicates that Coreg is not advisable for CHF patients with irregular heartbeats. Do you have any information that would indicate use of Coreg in patients with irregular heartbeats? Thanks, Robert.

Jon's June 24 reply to Robert's June 24, 2003 - Hi Robert, Beta-blockers are class 2 anti-arrhythmic drugs. See Jon.

Terry, June 25, 2003 - Hello, my name is Terry. I am taking care of my 86 year old mom - well, I'm trying. My mom had a stroke 3 years ago this October and it affected her speech horribly. She also has severe CHF. I bathe her, cook for her, pay her bills, shop, clean, whatever needs to be done. I love her very much.
     My brother passed away 8 months ago due to heart failure. I took her a couple of months ago to her heart doctor. He performed an echocardiogram and informed me that her heart is functioning at 20%. He said it is very severe and that's about all he said. She also has crippling arthritis and her hands are very affected. She has lost about 80 pounds. I am very worried about her.
     I work full-time and take care of her in the evenings and weekends. I realize we are not doctors but is there anyone out there who can explain to me about the 20% heart function? I would greatly appreciate it. Bless you. Terry M.
Jon's note: Take a look at this page first - :-)

Angie, June 26, 2003 - Hi, My hubby has DCM and is on the following meds: Toprol-XL 25mg daily, Lasix 20mg daily, K-dur 20 mEq daily, and Vasotec 5 mg daily, Lexapro for depression and Xanax 0.25mg 1/4 tab as needed, which he seldom takes. His last right heart cath revealed he was extremely dry with an EF of 50% (originally 30 to 35%). They classify him as functional class one to 2, Weber Class A. The meds listed above are after adjustments based on his latest heart cath.
     Here are my questions. Why does he still feel so fatigued? Why does he still have night sweats and insomnia? Why is he still having trouble maintaining his weight? Even his doctor is baffled. He is seeing Dr Mullen at Alexian Brothers in Chicago, an excellent cardiologist specializing in CHF.
     Also, are there any low-sodium cheeses out there? Any help is greatly appreciated. Angie.

Jon's June 26 reply to Angie's June 26, 2003 - Hi Angie, Here are some common causes for such continuing symptoms:

deconditioning, dehydration, insufficient vitamin-mineral intake, diabetes, meds adjustment needed (his beta-blocker dose is very low, as is his ACE inhibitor dose), anti-depression med hangover.
drug interaction, drug side effect, insufficient physical activity during the day, caffeine, taking improper over the counter drugs like decongestants.
Night sweats
If you ever figure this one out, let us know! We still don't know why we get these.
Maintaining weight
Is he gaining or losing?
Low-sodium cheese
Real Mozzarella is low sodium but expensive. Other kinds we would like to hear about if you find them.


Jon's June 26 reply to Terry's June 25, 2003 - Hi Terry, I assume the doctor means Ejection Fraction, commonly referred to as EF. See this page in the Heart Failure FAQ section: 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.

Talk to Jon Site Index