The paperwork never ends The Archives
Loved Ones - February, 2002 Archive Index CHFpatients.com

Kath 2-1     is this mild, moderate or what?
 
Donna H's 2-1 reply to Peggy's 1-30     my husband, this site & more
 
Donna H's 2-1 reply to Tammy M's 1-30     family, coping & more
 
Kim S 2-1     update on mom & more
 
Karen S' 2-1 reply to Donna H's 1-29     update, attitude, Coreg, & aneurysm questions
 
Sharon 2-1     an anti-depressant drug helped my mood
 
Debbie L 2-1     could this be CHF or the flu?
 
Dee 2-2     intro and some questions
 
Phyllis E 2-2     worried about losing Disability
 
Jon's 2-2 reply to Phyllis E's 2-2     losing Disability, exercise & weight control
 
Donna H's 2-4 reply to Karen S' 2-1     husband's chest pain & questions
 
Jon's 2-4 reply to Donna H's 2-4     chest pain, hotel room
 
Phyllis E's 2-4 reply to Jon's 2-2     Disability, finding work, & more
 
Annie G's 2-4 reply to Dee's 2-2     recovery, Coreg, diet, exercise, work & more
 
Peggy's 2-4 reply to Debbie's 2-1     heart failure from a virus experience
 
Elizabeth 2-4     what tests should be done? & more
 
Donna 2-4     pacemaker experience
 
Ben B's 2-4 reply to Jon's 2-2     Disability involves hard decisions
 
Roseanne S' 2-4 reply to Donna's January 29     coping with CHF, doctors
 
April 2-5     dad faces transplant, seek some preparation
 
Jon's 2-5 reply to April's 2-5     transplant experiences
 
Donna 2-7     my dad died
 
Karen S' 2-8 reply to Donna H's 2-4     getting a room, stress as factor & more
 
Donna H's 2-9 reply to Karen S' 2-8     cath has been postponed & more
 
Suzy C's 2-11 reply to Ben B's 2-4     working, not working
 
Davida S' 2-12 reply to Donna's 2-7     condolences 
 
Davida S' 2-12 reply to Ben B's 2-4     working while on Disability
 
Debbie 2-13     seek advice about brother who won't see doctor
 
Annie G's 2-13 reply to Debbie's 2-13     possibilities
 
Susan B's 2-13 reply to Debbie's 2-13     possibilities
 
Candie 2-15     seeking others who have had DCM since childhood
 
Kath 2-18     doctors are so frustrating
 
Jon's 2-18 reply to Kath's 2-18     doctors & more
 
Ray 2-19     father's phrenic nerve cut during transplant
 
Scott Brown 2-19     how do you treat gout in CHFers?
 
Jon's 2-19 reply to Scott Brown's 2-19     one possibility
 
Barbara 2-19     daughter has hole in heart & postpartum cardiomyopathy
 
Jon's 2-19 reply to Barbara's 2-19     a start on some resources
 
Kath's 2-20 reply to Jon's 2-18     mainly venting
 
Donna H 2-20     update & thanks
 
Judy H's 2-21 reply to Scott Brown's 2-19     gout experience
 
Anita S' 2-22 reply to Jon's 2-13     keeping the site going
 
Barbara's 2-22 reply to Scott Brown's 2-19     dealing with gout
 
Jon's 2-22 reply to Anita S' 2-22     keeping the site going
 
Karen S' 2-23 reply to Donna H's 2-20     Coreg dose & more
 
Peggy 2-25     seek a-fib experiences
 
Norma 2-25     far away from sick loved one - advice?
 
Davida S' 2-25 reply to Jon's 2-25     exercise program questions
 
Jon's 2-25 reply to Davida S' 2-25     exercise program
 
Aida 2-26     serious sudden muscle/weight loss - help!
 
Katie Mayne 2-26     transplant questions regarding my grandfather
 
Maria 2-26     normal Vo2max reading and Viagra questions
 
Sheryl C's 2-26 reply to Katie's 2-26     info resources & more
 
Davida S' 2-27 reply to Aida's 2-26     exercises & more


Kath, February 1, 2002 - Hi, My mom was just diagnosed with CHF but trying to get information on how serious is like pulling teeth. I know about heart classes but I don't know how to fill my mommy in. She had no real symptoms that we noticed. She did have swelling of the legs and she did breathe a little heavily (she is age 72) when doing errands but she did errands like laundry and grocery shopping each day. She has had hypertension for awhile but had been on medication.
     Finally at the start of this year she was put on an exercise program. She started walking one mile a day and was doing strenuous (for her) weights. For 24 days she did this and then on the 25th she got severely congested and had problems breathing. We went to the hospital and they diagnosed her. They say there is a thickening of her heart in but all her other tests came back okay, showing no heart attack and no thickening of her arteries.
     I am trying to determine if this looks to be mild or moderate. It seems like the exercise caused stress on the heart which over time caused increasing congestion until she couldn't breathe anymore. I do believe she has damage probably caused by the hypertension but I don't know how severe and they don't seem to either, but to me it seems it can't be too bad because it didn't show up until we started an exercise program. Thanks for your help, Kath. Kath873181@aol.com


Donna H's February 1 reply to Peggy's January 30, 2002 - Hi, Although I asked the doctor about the procedure to shock his heart into a normal beat, the original doctor just said it wasn't necessary. The second doctor was much more concerned about the a-fib and wants to do more testing (a heart cath) before deciding on a course of action. I am very thankful that I found this site. CHF is very difficult for people to understand. My husband would love to be able to work again but just isn't able at this time. That is very distressing for him.
     He doesn't use the computer very much so I printed out the entire Manual and FAQ for him. Since he has had trouble understanding things lately, he can keep it by his chair and just read a little when he feels like it. I plan to also print out the forum letters from the other side so that he can learn from other people's experiences.
     The past 18 months have been rough and I am so glad to find other people that understand, Donna. herdrich@grm.net


Donna H's February 1 reply to Tammy M's January 30, 2002 - Hi, My youngest child is a teenager and very self sufficient, but she has been through so much the past year that it makes me sad for her. Over the past 18 months, my husband has been hospitalized 5 times and I had 2 emergency surgeries. She has seen me taking him to the doctor at least once per month and watched the ambulance take him to the hospital while she could only stay home and wait. We talk about his illness with her and keep in touch by phone any time we have to be away. The hospital is 3 1/2 hours from our home.
     Although my father died of heart failure at the age of 61, I was an adult and never thought of my parent's mortality when I was a teen. Since my child is a little past the cuddling stage, I try to reassure her in other ways, especially by talking to her and by making sure that when we are home we have family time together. Since my husband is being treated at a VA hospital, we don't always have a lot of choice as to what doctor he sees but I have gotten more informed and aggressive about his treatment. Thanks to Jon's site, I have learned more about CHF in the last few days than I have in the last months. herdrich@grm.net


Kim S, February 1, 2002 - Hi all, I just wanted to share a happy update. I am also guilty of not posting much, but I don't want to take up people's time if I don't have much to say. Anyway, my mom was diagnosed with CHF about 3 months ago, with an EF of 15%. She had difficulty getting into Cardiac Rehab because insurance did not want to cover it, but she's now been attending faithfully for 2 weeks and loves it. She's feeling better, and what I've noticed most is how much more hopeful and strong her voice sounds on the phone - unfortunately we're a long distance apart. She's still often fatigued and she's wearing a heart monitor for the next 30 days because she's having episodes where her heart pounds, feeling like she's just run a marathon, for no reason. But other than that she's doing much better after 3 months of meds and life style changes. Jon, you probably get tired of hearing this, but thanks so much for this site. It has truly been a wonderful resource and source of support for us. Best wishes to everyone else out there! KimSeaton2000@yahoo.com


Karen S' February 1 reply to Donna H's January 29, 2002 - Hi Donna, My husband is 55 and also in law enforcement, although he has been on sick leave for over a year. He originally started Coreg, gradually increasing the dose for several months. When he had been taking 50mg for 2 months, he decided the side effects were not worth the benefit and with the doctor's approval, we decreased the dose to 25mg and then stopped taking it at all. His shortness of breath was so bad that he decided the Coreg was helping and began taking 25mg for the next 6 months. Last week he increased to 50mg.
     With each increase he has always felt very badly. He is tired, weak, short tempered, has headaches and generally just doesn't feel good for several days to a week. On the 50mg dose last time, the side effects didn't go away. I really don't believe he will be able to stay on 50mg this time either. If your husband doesn't improve, he may need to talk to his doctor about lowering the dosage. My husband is also "tired, confused and angry", with or without the Coreg. Going literally overnight from an active law enforcement/pilot job to his life now is a major life style change. I think being tired just goes along with the territory.
     I know sometimes it's hard after a long day to go home and deal with everything. Just hang in there. I have often been confused and angry myself. I think the key might be finding the right doctor. We're still working on that one. We found out last week, from reading a disability medical report, that my husband has a 4cm aneurysm in his left ventricle. If anyone out there has any information on this subject I'd appreciate you sharing it with me. So far, what I understand is if it grows larger than 5cm they usually do surgery but otherwise they just watch it. Thanks to all who respond and those who have previously responded to my posts. gstilley@hotmail.com


Sharon, February 1, 2002 - Hello All, I am a 32 year old CHF patient and have had this disease 11 years. I am also moody, depressed, and anxious. Two to three weeks ago I started taking an anti-depressant. If your loved ones are really depressed, please consider having them see a psychiatrist. He may be able to prescribe something effective. I know I feel better. The stressful events and the reality of our situation will still be there, but maybe they need help facing it head on without despair. Please do not underestimate the emotional effects of this disease and some of the meds. We need to take the heart drugs to stay alive, but we need to also want to live. sharewilson@yahoo.com


Debbie L, February 1, 2002 - Hi, My mother just called me a few minutes ago to tell me that my dad was in the hospital. I thought it might be pneumonia because my dad has had the flu for 2 weeks now and was supposed to go back to the doctor if it wasn't any better by now. She said that he was having a lot of trouble breathing, especially if he tried to lie down. I worry endlessly about my dad. He has been hospitalized before for angioplasties since he has heart disease. His last hospitalization was about 9 years ago and his blood work has been good, thanks to all his medication, until the last time when the doctor told him his triglycerides were extremely high and he needed to make more changes in his diet.
     They admitted him to rule out pneumonia and suspected it might be congestive heart failure. They are running tests on him now. How long until these tests might be complete? Is it likely to be CHF since it started with a very bad case of the flu, according to his doctor? I just wonder if it is just more the flu than congestive heart failure. The doctor still believes he has the flu but he has too many other symptoms to not test him for it.
     I have done a lot of reading in the last several minutes and came across this message board. Has anyone been diagnosed with CHF presenting after the flu? It might be premature to ask questions when they haven't even completed the tests, but they didn't tell my mom how long it would be before they knew more. I'm 2,400 miles away from them and I really need to be prepared for this. Thank you for being here. debbielehman@hotmail.com


Dee, February 2, 2002 - Hi All, I have read over most of Jon's site before posting so let me tell you about my husband to be, Steve. He was diagnosed last December, 2001, with DCM and CHF. His only echo so far shows an EF of 10%. He was in the hospital, mostly because he was misdiagnosed with COPD, from December 7 to 12. When he was diagnosed with COPD they gave him antibotics, an inhaler and prednisone. The steriods made him put on 30 lbs of water in 3 days, so I called my cardiologist and drove him to the ER. His PCP misdiagnosed him, by the way. but my husband still sees him. Errrrrrr!
     My husband was hospitalized and put on the right meds. He takes 2 meds for diabetes; he was diagnosed with this too while in the hospital and his mom is an insulin-dependant diabetic. Steve takes glucophage. He take 2 meds for duiretics, of which one is Lasix, and he takes an ACE inhibitor. He does not take Coreg and I wonder why, and will ask his cardiologist this Monday when we see him. Steve also just started today taking Zoloft for depression because Steve was just told last January 27th that he needs to go on the heart transplant list. We both took this very hard so I seriously began doing a lot of web searching about transplant. I now know that the cardiologist said this as a just-in-case thing. I had to take Steve back to the cardiologist last Wednesday so the cardiologist could assure Steve of this because it has been a bad week for Steve.
     On top of that, Steve got this weird hoarse flu-like illness from his mom. Seven people live in this house and only Steve and his mom got sick so maybe it was food related, I don't know. I was working as a cashier before Steve got ill. By the way, the docs say he got the heart failure from the virus he had last September. Steve and I are asking a lot of questions everywhere and there is almost an overload of info.
     Steve is worried that this flu he just had has set him back even more. He is so afraid of going to sleep that it isn't funny anymore. Benadryl does help Steve relax, and we did the 2 benadryl tabs every night until he started on Zoloft. I told Steve that I don't know if Benadryl and Zoloft can be combined. Does anyone know here? I ask because it will take weeks for the Zoloft to truly kick in.
     Needless to say, Steve isn't working and he is pretty much bedridden right now because he was so sick with the flu too, it really knocked him out. Our cardiologist won't suggest exercise for Steve and I wonder if it's because Steve's EF is 10%? About all Steve can do right now is walk around the house some. I was hoping by this spring after he has been on the ACE inhibitor for awhile that he could do walking exercise.
     Where should Steve start? His cardiologist is my doc too because I have lupus with renal involvement and blood in my urine for 2 years straight, with no stones, just a lupus swelling, and I just had an irregular EKG so I'm undergoing more tests this week. To top all off, our cardiologist was just charged with sexually assulting a sales rep in his office, and this is his third charge in 6 years, so he may very well lose his license to practice medicine! When we go this Monday I am going to let him know I am aware of this and will practically demand he make an appointment for Steve to go to a heart clinic here in Maryland - Johns Hopkins Hospital - the same place he will be evaluated for heart transplant. Can I make this appointment on my own for Steve? Anyone that wants to give input here, thanks! God bless all, Dee. teepeefarter@aol.com


Phyllis E, February 2, 2002 - Hi, Has anyone lost long-term disability benefits from their company when EF goes from 15% to normal range and an enlarged heart goes back to normal size because the medicine works and there is no stress from the pressure of work? I know my husband will probably not be passed on SSD. They have been waiting for this test to make a decision. It has been going on for 1 1/2 years. We are really concerned since he has been receiving 60% of his income for over a year. We are preparing for the worst since he still feels bad and cannot work. The doctor says he can hold down a job. I would like to know if this has happened. It seems Jon, you were worried at one time about the same thing last year. Did it work out for you? Thanks for being here, Phyllis E. phernsberge@peoplepc.com


Jon's February 2 reply to Phyllis E's February 2, 2002 - Hi Phyllis, My SSD review is overdue and I expect it any time. I expect to lose my Disability at that time, even though my cardiologist at my last visit wrote the line, "It is impossible for Jon to work at this time" in my medical record (My doc's comments are written in my presence - he does this with all his patients). I will then - per the usual procedure - continue receiving benefits for 6 months to help me while I look for work. That's supposedly why they withhold 6 months benefits when you start SSD.
     Strangely, I think in maybe a year I might be able to work, but I am pretty sure I'll lose my SSD before then. My CHF doc says some of his CHF patients have had "numbers" go up without a corresponding improvement in ability to function, and that some have lost their Disability as a result. He's trying to get a prospective study going on this group of patients now, to document their inability to work despite higher numbers.
     I am on a doctor-approved exercise program that is very aggressive for someone in my shape to get me as ready as possible as quickly as possible to seek work, if necessary. I have learned through experience that about 1/3 of feeling rotten and being unable to function is due to extremely poor physical fitness in chronic CHF. It's very difficult to regularly and intensely (for your situation) exercise and control weight; but if you do, it can greatly improve your functional ability because your body can make much better use of the blood and oxygen that it does get from your not-so-hot heart. It also improves sleep to some degree, although it's certainly not a cure-all for anything.


Donna H's February 4 reply to Karen S' February 1, 2002 - Hi, Do you think that the stress of your husband's profession was partially to blame for his illness? My husband pushed himself so hard in his job that I blame it, along with sleep apnea, for his CHF. The worst part is that even after nearly 2 years away from it, he misses it and would love to go back to it.
     He is now taking 25mg of Coreg instead of the 50mg prescribed as a starting dose. He is less confused but is having lots of chest pain. He is blaming the Lasix and potassium for the chest pain but since it began the day after he reduced the coreg. That seems more likely to me.
     He goes to a cardiologist next week - not the one that prescribed the Coreg - and I have plenty of questions written down. The week after that he is going to have another heart cath, done as an outpatient. Since we are 3 1/2 hours from the hospital and they want to do it as outpatient surgery, I am considering renting a motel room for the night. What do the rest of you think? Am I being overly cautious? He has been so sick this winter that I really don't feel comfortable driving home after the procedure. herdrich@grm.net


Jon's February 4 reply to Donna's February 4, 2002 - Hi Donna, I don't want be alarmist but the chest pain after reducing Coreg dose is not a good sign. You might consider taking him to an ER and asking if he should be on nitrates (nitrglycerin, as in a patch) until his cardiologist appointment.
     If it were me, I would go ahead and reserve the hotel room. Jon.


Phyllis E's February 4 reply to Jon's February 2, 2002 - Hi, Thanks Jon, for replying about the threat of losing your benefits. I made a mistake in my post: The doctor is for my husband not working, but like you said, in some states that might not make any difference. It is nice to know there is a 6 month reprieve to prepare. I would like to know who will hire someone with his medical history. His COBRA runs out in April, leaving us without insurance so any job with insurance might be the ticket. It is just so good the way things are now that we have his old company disability. This company is out of business and he would have been layed off without anything if he had waited 3 more months. We are grateful to God about what has happened so far. I will pray for you to be blessed financially and physically to carry on this great work of helping your brothers in need. I feel all is well. Thanks Jon, Phyllis E. phernsberger@peoplepc.com


Annie G's February 4 reply to Dee's February 2, 2002 - Hi Deb, I know you have a lot going on. My husband - also named Steve -was diagnosed with DCM just over 3 years ago with an EF of 13% by heart cath. He was also misdiagnosed with bronchitis for a month first. Definitely get into the heart clinic. My husband got into the one at a university hospital an hour from our home, but only because he was hospitalised first and worked up for the heart transplant it was thought he would need.
     He was given a very light exercise program on discharge: a little strength training and walking. He was also discharged on Coreg and digoxin (Lanoxin). It took about 6 months to get Steve up to 25mg twice a day of Coreg but I'm sure it has prolonged and improved his life. My husband is also diabetic, diagnosed about 1 1/2 years after his DCM diagnosis.
     Make sure you follow all his dietary restrictions. I know there are a lot but they can make a huge difference in how he feels. My husband didn't really feel human again for about a year. He was exhausted all the time. He would get honestly brain-fatigued every day by about 5:00 pm. What I mean is, it was as if his heart could no longer pump blood uphill all the way to his brain and he would get kind of silly. It was actually very scary to witness because he was always such a smart man.
     Anyway, on to happier notes. His "brain fades" are now few and far between. His most recent EF reading is 40 to 50%. The best part is that he feels most of that improvement. He went on a fairly vigorous exercise program a year ago to try to get in shape for going back to work,which he felt he could try. His EF was at 35% then. Last May he returned to work full-time. True, it is mostly a non-physical job but I was sure he would never live till now.
     He must contiune on all his meds and all his dietary restrictions, but they are worth it. Don't give up hope. Take this web site information to heart. Not only is this a great site, it is accurate too. Get your husband into that heart clinic as long as it is a CHF clinic. Good luck, Annie. annieg129@cogeco.ca


Peggy's February 4 reply to Debbie's February 1, 2002 - Hi Debbie, My husband also had the flu and couldn't shake it for 3 weeks. I told him to go to the doctor but he thought it would finally go away. He had to sleep sitting up at night because of the hard time breathing and coughing. He just thought that it was a really bad cold. The day he went to the emergency room he got really lightheaded and almost passed out at work. At the emergency room they did a chest x-ray and saw he was full of fluid and had an enlarged heart. He was diagnosed with CHF and DCM that was caused by a virus.
     They will never know if this was from a cold or what. What tests are the doctors doing on him? They should be able to determine if he has heart failure right away. My husband was in the hospital for a week and also lost 10 lbs of fluid the first night he was in. They said he was lucky to make it through the night. We thought it was just a bad cold! Please e-mail me if you have any questions. Good luck and God bless, Peggy. RyoungAngora4683@aol.com


Elizabeth, February 4, 2002 - Hi, My mom has just been diagnosed with moderate heart failure. She had an echocardiogram and her EF came back at 30%. The doctors cannot find the cause. Are there any tests that you would recommend for her doctors to perform or questions we should ask them for her treatment? They just put her on water pills, potassium and one other. Any input would be extremely helpful since we are just learning about this disease. Thank you, Elizabeth. mcleod314@hotmail.com


Donna, February 4, 2002 - Hi everyone, Well, I'm back from Gainesville. Hubby had ablation and a pacemaker installed. He was not accepted into the biventricular pacing study done by St. Jude. It was all set but the doctor was concerned about the fainting spells he was having. She said it may be from V-tach and they would have to do an EP study to be sure. So he decided to let her do the EPS and the good news was that he did not have V-Tach or any bad arrhythmias so we were told the study pacemaker would be installed the next day.
     For some reason they had to call St. Jude about something and he was taken out of the study because he was only in a-fib for 28 days! He has had it all his life but after his open-heart surgery they put him on medication: Coreg for one, then amiodarone (Cordarone), which gave him some bad side effects. The medication was stopped and he was told it would take about 45 days to clear out of his system. Well, it cleared out and kept the a-fib from happening and he was only back in a-fib for 28 days. St. Jude would not approve him so they put in a St. Jude pacemaker but he's not in the not the study.
     When they put him under, he stopped breathing and the next thing he remembers is them hollering at him to breathe! They kept hollering that to him. They gave him a local and continued with the procedure, first the pacemaker, then the ablation. He had to stay an extra day to be monitored and to have the pacer reduced from the 90 they set it at, to 80. He will be turned down to 60 beats per minute in 8 weeks. It is amazing what this has done for him. He is no longer short of breath, and has no more dizziness. He says he hasn't felt this good since his first heart attack when he was 40 years old. He is now 72!
     Before we left, his heart function was at 20%. They told him in about 30 days to have his cardiologist here give him another echo and they think he will have a big leap in EF. God has blessed him once again. Even if he didn't make the study, he has been helped tremendously. I think Shirley was going to have this done on the 31st. Let us know how you are doing when you can. Prayers are with you. gramme@cfl.rr.com


Ben B's February 4 reply to Jon's February 2, 2002 - Hi, I really feel they need to work on the Disability rules to make it simpler and less risky for people to attempt work if they want to. If a person has a history of a chronic disability, they should make it easier for them to get back on disability if they attempt to work and their disease gets worse as a result.
     Also, once a person has a history of disability it is a lot harder to find somebody to hire them, especially these days. I am certain many people would be willing to try to work, but are frightened they will regress and be left high and dry. My heart has improved somewhat (EF from 10% to 35 to 45%), and although my disability is not at risk at the moment, there are many times I feel I should try to work. Although I know they offer trial work periods, the wording is so ambiguous to me I am hesitant to risk it.
     When my doctor insisted I go on Disability it was probably one of the worst parts of my disease. I sometimes wish that I had just tried to tough it out, because after a period out of work it is doubly hard to find employment and a little frightening, given the unpredictable nature of this disease. Still, I think it is necessary to be honest and as my numbers improve I feel I have to continually ask myself if I really am unable to work, and if I am doing everything to improve my condition. Sometimes feeling bad cannot be entirely blamed on the heart disease. Well, enough of that. bdbrinkman@juno.com
 
Jon's note: I certainly wouldn't argue with any of that


Roseanne S' February 4 reply to Donna's January 29, 2002 - Hi Donna, I would agree with everyone who said to get a new doctor. I would also consider sending a letter to the adminstrator of the hospital where he was told to just go home and that there was nothing they could do. There are a lot of options available. If at all possible, get into a CHF clinic. Sometimes they don't work but God does perform miracles. Throughout my husband's heart problems he never accepted that he was as sick as the doctors thought he was. All the doctors and nurses have told me that his non-acceptance is the only reason he made it to heart transplant. As to your husband feeling bad all the time, confused, and angry, is it ever normal! Hang in there, Roseanne. rschurick@seidata.com


April, February 5, 2002 - Hi, My father is 42 years old. About 6 years ago he had a heart attack and had stents put into his heart. He was diagnosed with congestive heart failure. He has about 15% of his heart working. He recently had a cath done, which showed all his stents were blocked and his heart had deteriorated more. They also found out that his heart problems stem from a disease he had as a child. The only options they gave him were drugs for comfort and steps to be put on the heart transplant list. Well, I realize that the process to even be put on this list is a feat in itself. I would appreciate it if anyone can give me any advice on what he has ahead of him. Thank you and God bless. ahkkm@aol.com


Jon's February 5 reply to April's February 5, 2002 - Hi April, This site has gotten so big sometimes pages are easy to overlook. I suggest trying the Me Too pages and heart transplant stories page for e-mail addresses of heart transplant recipients to talk this over with. By the time you get to the bottom of the last Me Too page, you should have more than a few people to talk to about it. :-) Jon.


Donna, February 7, 2002 - Hi, I wrote earlier to tell you about my dad. He died January 28th of CHF. He just quit breathing. He was arguing with the nurses with his last breath. donna.smith@alltel.com


Karen S' February 8 reply to Donna H's February 4, 2002 - Hi Donna, Yes, I do believe that part of my husband's problem was employment-stress related. He was in a department with a lot of internal problems so he had that as well as the normal stressors that go along with a law enforcement job. I prayed more that he would be protected from his co-workers than the bad guys! Unlike your husband, my husband doesn't miss it much. He misses the flying, but that's all. I wish you both well with the cath. I would get a motel room particularly since you're such a long distance from the hospital. I haven't heard of anyone having chest pains related to Coreg or potassium so be sure to have that on your list of things to talk to the doctor about. Let us know how it goes. gstilley@hotmail.com


Donna H's February 9 reply to Karen S' February 8, 2002 - Hi, Today the hospital called and the doctor is not going to be able to do the cath next Tuesday. They gave us some alternate dates but we haven't figured out just when it is going to work out. All three of the dates so far conflict with other longstanding doctor appointments for my daughter and myself.
     On the bright side, his thinking is clearer, he is less tired and having fewer chest pains. In some ways I am glad that the cath was postponed because he just didn't seem strong enough to go through it right now, especially as an outpatient procedure. I understand about the coworkers. I still have trouble getting my husband to go to the hospital in an ambulance because as a cop, he worked so closely with the current ambulance crew, and relations were pretty strained.
     I will keep you posted about the cath. One of the dates they suggested was Valentine's Day and I thought it was great, you know, a day for hearts. My husband refuses to go that day though, because we have reservations to go out for dinner, Donna H. herdrich@grm.net


Suzy C's February 11 reply to Ben B's February 4, 2002 - Hi Ben, I've posted before on my tenacity to get my husband's disability approved, and it worked. The value of work is extremely important to our mental state, which only enhances our physical state. We are very fortunate to have a daughter with a couple of large businesses. My husband goes into a nearby office several times a week. He answers the phone and does what he can do while sitting. It's a bit of a drive and if he feels bad or sick, he just comes home. He may stay 4 hours or 30 minutes. The act of getting up and getting ready to go out every day is extremely difficult for him, as well as beneficial. Since he has only one lung and uses oxygen 24/7, it's a real workout! By now he knows whether or not he can hold down a job - he can't.
     Our daughter does not pay him, but gives him the opportunity to participate in the work environment, build his self-esteem, use his years of knowledge and experience, and have a place to get up and go to every day. Many days he doesn't feel like going at all. This is an ideal situation, and I know that most people do not have this blessing.
     Ben, whether you can work or not is something you probably know. It's not the "work" but the holding down of the job which requires regular hours, bottom line numbers, the expectations of the employers. I pray that you get better and can actually work. The value of work gets weighed heavily here against the quality of life, and maintaining your health status. Prayers and good wishes for you, Suzy. sskbc@optonline.net


Davida S' February 12 reply to Donna's February 7, 2002 - Hi Donna, I just wanted to say I am so sorry to hear about your dad. I know there is not much anyone could say that could help but know that our prayers and thoughts are with you and your family. Take care. cavalier_1@msn.com


Davida S' February 12 reply to Ben B's February 4, 2002 - Hi Ben, Have you tried calling your local Social Security office for clarification on the back-to-work phase of disability? Your post has me a bit nervous. My husband is going back to work this summer if his EF stays in the 50s. My understanding is that he has 9 months to receive full benefits and work. This time is to ensure he is able to resume and maintain gainful employment. From my conversations with Social Security, as long as he is in this 9 month window, his benefits are safe. Call and get clarification for peace of mind. Please come back and share your findings. cavalier_1@msn.com


Debbie, February 13, 2002 - Hi, I have written before about my brother who has CHF and is drastically going downhill. Besides having cardiac cachexia, black swollen feet and legs, and a grey complexion, he does not sleep and now has developed pulmonary edema.
     The hardest thing for me is that I cannot talk to him about seeing a doctor. When I do he goes into a fit. I have also noticed that his brain function seems decreased. When you talk to him he looks at you like he is confused. Has anyone ever been in a desperate situation where they are actually watching their loved one die and can't do anything?
     We have checked into court appointed hospital admission, but they said the minute he gets there he can check out. I know that pulmonary edema is fatal and with all his other symptoms I know that in a very short time if I can't get him into a hospital he will not be around. I would appreciate any advice. Thank you. dff1217@attbi.com


Annie G's February 13 reply to Debbie's February 13, 2002 - Hi Debbie, Is there any way that you can stop initially trying to get your brother to see a doctor and instead spend time with him filling out an advance directive for health care decisions or a living will? He may need to feel that his wishes are going to be respected and maybe once you have really heard about what he wants, you may have some negotiating space. Why does he not want any care? Try to listen and not to judge.
     Sometimes people have had such horrible experiences that they refuse to experience them again. Maybe if he knows that you would respect his wishes, follow through with his wishes, even if those wishes are not what you would choose for him, maybe he then would agree to some treatment, knowing you are there to help him fullfill his wishes. Of course, maybe he would still fight you all the way but maybe the different approach is worth a try.
     We can't make choices for our loved ones, but we can try to support them. By the way, I'd guess that the blank stare is lack of oxygen to the brain and he is missing lots of info presented to him. That's another reason a living will may be helpful. Good luck, Annie. annig129@cogeco.ca


Susan B's February 13 reply to Debbie's February 13, 2002 - Dear Debbie, As you'll hear a lot at this site, people with low heart function may not be thinking clearly because the brain is not getting the oxygen that it needs. Have you talked to an attorney about getting a guardian for your brother? Maybe it could be limited to medical treatment. Legal Aid in some states represents people for little or no money if that is an issue. Good luck, Susan B. gbratcher@kc.rr.com


Candie, February 15, 2002 - Hi, My daughter was diagnosed with DCM over 9 years ago. She is now 13. Recently her heart function took a nose dive. Currently she takes aldactazide, Lanoxin, Coreg, and prinivil. We would like to know we're not alone. Has anyone out there had DCM this long? Does anyone have any news about this disease diagnosed in childhood? The only children I have found thus far have had transplants. Do you know of any teens with DCM or heart transplant? Has anyone experienced VRT? Sorry about all the questions but my daughter needs to know others have been there, done that. Thank you, Candie. thjs@msn.com


Kath, February 18, 2002 - Hi, I wrote before regarding my mom's CHF. I am disgusted with the doctors she has. We thought they were good because they are members of the Framingham heart study, but I am too furious. My mom is 72 and they took her for a stress test. They just popped the machine on go and she of course - fell. Now she has bruised and swollen legs, and I get to worry about edema. We are in the process of getting a specalist but it is soo hard to get a timely appointment and until that time we have to deal with these morons.
     Friday we got a hysterical call that my mom's kidneys were too dried out so they told her to stop Lasix for one day but next day she gained a pound. I hope that is not edema. One day she is taking too much Lasix, one day too little. Why can't they get this down? Now they have her on the same Lasix that she was on prior to hospitalization - 40 mg. How can that be right? Does that make any sense? Kath873181@aol.com


Jon's February 18 reply to Kath's February 18, 2002 - Hi, I understand your frustration with doctors all too well, and probably everyone here does too. ;-) I never assume that any credentials mean anything when it comes to whether a doctor is "good" or right for me. Unfortunately, there really is no good way to be sure at first, and it's even more frustrating when it's a loved one who winds up with a less then stellar doctor.
     One big help to getting diuretic dose right is to get sodium intake and fluid intake consistent day after day. This allows you, her, and her doctors to find a dose that will usually keep fluid from building up without dehydrating her. If her sodium intake goes up and down, her body's ability to get rid of fluid will go up and down, making the same dose of diuretic work one day but not the next.
     I am not saying this is the problem but it pays to take care of all the possibilities on the patient end of things before approaching a doctor about his end of things. That way, if he gets smug and starts saying, "Well, if she would just, ..." you can say, "She already does and she already has ..." <g>
     A one pound weight gain in 24 hours is not necessarily edema. I usually say (and hear and read) that 2 pounds in 24 hours or 3 pounds in 48 hours indicates fluid buildup whether it shows or not. That's the time to take an extra dose of diuretic. Also, you may want to further lower her daily sodium intake. If she's on 2000mg maximum per day, try 1000mg maximum per day and see if that allows the Lasix dose to be consistent and effective. Be sure her electrolytes are being routinely measured as well.
Jon.


Ray, February 19, 2002 - Hi, My father had a heart transplant and has been very slow recovering. His lungs have been the biggest hurdle. It turns out that his phrenic nerve was severed during the transplant. Is this common, uncommon, unheard of? It sounds sloppy to me but he did have a lot of heart scarring due to previous chemotherapy. Thanks! r2e@sbcglobal.net


Scott Brown, February 19, 2002 - Hi, My dad had terrible pain in his foot about 9 months ago. This is the second time this has happened. The first time it was a small spot on his foot which was in terrible pain. Medical staff never figured out what it was and were never excited. It went away after several days.
     Over the weekend this problem came back throughout his entire foot. The veins in his calf are swollen. It took awhile in the emergency room to figure out what was going on. Finally it was found to be gout brought on by diuretic use. I was wondering who else on this board has a problem with gout and how their cardiologist treats the problem. My dad was unable to walk so he could not get out of bed at all. I think anti-inflammatory drugs are tough because they can conflict with the heart problem. kitchenerguy@hotmail.com


Jon's February 19 reply to Scott Brown's February 19, 2002 - Hi Scott, He might look into allopurinal. Jon.


Barbara, February 19, 2002 - Hi, I have a question and hope anyone can help me with an answer. I have searched everywhere. My daughter, who is 18 years old, has postpartum cardiomyopathy. She also has a murmer and a hole in her heart. Is the hole in her heart a result of congestive heart failure and cardiomyopathy, or would it be congenital defect? Does anyone on this board have a hole in their heart due to cardiomyopathy or rather cardiomyopathy due to the hole in their heart? I do not get to be there for my daughter's appointments and get most of the information secondhand. gabarb36@aol.com


Jon's February 19 reply to Barbara's February 19, 2002 - Hi Barbara, Please note that I am not a doctor. The cardiomyopathy did not cause the hole in her heart. Cardiomyopathy is a catch-all term meaning heart disease. You can read more about it The Manual. Her symptoms might result from her heart being over-stressed during pregnancy, with her heart defect (that hole) adding to the physical stress. You might want to check out postpartum and peripartum resources online, as well as looking for others with these problems at Me Too and Who's Who. The Site Index may help you find a lot of information. ;-) Jon.


Kath's February 20 reply to Jon's February 18, 2002 - Hi Jon, Thanks, I just had to vent. I suppose the largest problem is that my mom has been getting tests almost every day since being diagnosed and that can't be helping her blood pressure. I really think all the poking and prodding is actually making her worse rather than better.
     She is going for blood tests this week and they are going to test everything. Her salt intake is as even as possible but there is no way she is going to count it. In general it is about the same but since we got this diagnosis we have made her cut back on the salt a lot - then with the same amount of drugs she got dehydrated. I just wish they seemed more concerned. They are just like "whateve" as if she is already dead or they wish she would hurry up and do so so they wouldn't have to hear from me. Kath873181@aol.com


Donna H, February 20, 2002 - Hi Jon, I just wanted to let you know that after a couple of weeks of being on the reduced Coreg dose - down to 25mg per day from his starting dose of 50mg - my husband has improved greatly. He is more alert every day, his thinking is clearer, his mood better and most of the clumsiness and sleepiness has disappeared.
     I know you aren't a doctor Jon, but I do thank you for giving us the nudge to talk to our PCP about the cardiologist's dosage. My husband's heart cath has been postponed until March and I am far less worried now since I feel that he is strong enough to undergo the procedure. Again, thanks. herdrich@grm.net


Judy H's February 21 reply to Scott Brown's February 19, 2002 - Hi Scott, My husband Bob, is experiencing his second episode of gout in 4 months. The first time was due to a trial increase in his diuretics, and I suspect this episode is a result of the same. He is scheduled to see his PCP tomorrow, but we may go to the ER for some pain relief (he says it is a 10 out of 10). He will probably back off the increase in diuretics since he is not having SOB. The last time my husband was given Vicodin for pain and an NSAID, although the name escapes me, of which he took only a dose or two. Backing off the diuretics definitely helped. He has had lots of problems with his feet, and a lot of testing and consultations because of it. Having DCM complicates everything, as you well know. Take care, Judy. jmh@bright.com


Anita S' February 22 reply to Jon's February 13, 2002 - Hello Jon, Phil and I just got back from visiting family in Florida and we are just now catching up on the posts. We were reading the post about your looking for a sponsor for your new site so you could make a living with it. We are very addicted to your site and we use the links quite often to look up many things for ourselves and our family. We would be willing to pay a nominal monthly fee or a yearly fee to help keep your site going.
     We can't imagine how you could find the energy to keep both sites going and we don't want you to have to let the one site go so you could spend time on the other site for financial reasons. You are just too important to us and your site is the best that we have found. You make it easy to find the information that we need since we don't always have the time or knowledge to find it for ourselves. Surely there are other people who would be willing to help you out and pay a fee also. Maybe this is something for you to think about.
     We know that you want to do this site for free but that may not always be possible, so we are willing to help if you need it. Keep up the good work. You are appreciated, Anita and Phil. dreamersila@netscape.net


Barbara's February 22 reply to Scott Brown's February 19, 2002 - Hi Scott, My husband suffers from gout, along with IDCM. When he was put on diuretics he had a bad bout. He went off his diuretics and they put him on an NSAID, which we know isn't supposed to be good for his heart but they wanted to get rid of the gout. After that they started him on colchicine daily. He was on allupurinal and still got gou. He's been on colchicine (the oldest medicine for gout) for about 9 months now with no episodes. He's lucky enough that he doesn't have to take his diuretic, for now anyway. In order to test for gout they'll take a urine sample or test the affected area. Pobo5757@aol.com


Jon's February 22 reply to Anita S' February 22, 2002 - Hi Anita, Thanks for the kind words - they help more than money! The new site is well under construction. I will actually be moving all my heart info to that domain, with only minor changes in content and design, although of course I have to redo all the links and a lot of file names and directory structures - arrggghhhh! The Jon's Place domain will remain active and the pages that have been moved will still be there pointing the way to the new locations.
     Private donations are taxed on my end, so they hurt almost as much as they help. I am in the process of becoming a non-profit corporation so that donations will not be taxed at either end, but that will take about 6 months to complete. Uncle Sam hates for people to help other people without his hand in there somewhere. Unless I fail at making money through sponsorship or grants, the site will continue one way or another. Only if I have to seek work unrelated to the web sit will it fold.
     I do have a birthday right around the corner. If anyone wants to send me a birthday present, I'll be happy to take it and make good use of it. That's about all I can say though, without crossing any lines. I don't post my personal contact info but if anyone is interested, e-mail me and I'll send you an address that will reach me. ;-) Jon.


Karen S' February 23 reply to Donna H's February 20, 2002 - Hi Donna, I'm glad to hear that your husband is doing so much better. My husband is still toughing it out with the 50mg Coreg per day. The side effects have lessened somewhat but I'm still betting he'll end up reducing it down to 25mg again at some point. I hope the cath goes well, Karen S. gstilley@hotmail.com


Peggy, February 25, 2002 - Hi, I have been a regular here at Jon's site every day since November of 2000 when my husband was diagnosed with DCM and CHF and he was also in a-fib. They did a cardioversion on him and got his rhythm back to normal and his CHF is gone and his enlargement of the heart is almost back to normal. He was feeling great and doing excellent up until last week when he felt really weak and dizzy one day at work.
     He went to see the doctor and he's back in a-fib again! We were told that this can happen, but since he was doing so well, this is very upsetting to us! They put him back on digoxin (Lanoxin) and Coumadin (warfarin) to see if it will go back to normal on its own, and if not, then another cardioversion.
     My question is to any of you who have been in a-fib before. Did you find that what you were doing at the time had some influence on it? My husband was working a lot of hours and didn't get a lot of sleep and had to push himself quite hard 3 days before he went into a-fib again. Also, did going back into a-fib make your cardiomyopathy any worse? Any comments would greatly be appreciated, Peggy. RyoungAngora4683@aol.com


Norma, February 25, 2002 - Hi, I'm new to CHF and new to this wonderful site (thank you, Jon). My 74 year old dad has been finally diagnosed with class 4 CHF after being "sick" for about 2 years. We've been told he's not a transplant candidate and is end-stage. My family are devastated, but coming to terms. My family live in Scotland, I live in Canada. Has anyone any experience in dealing with logistics like this and the guilt (at not being there to help) that I am feeling, and any strategies for me to feel like I'm some sort of use to everyone at "home?" Norma. johnstewart@cogeco.ca


Davida S' February 25 reply to Jon's February 2, 2002 - Hi Jon, You mentioned you are on a very aggressive exercise program to get you ready for work. I agree that physical conditioning is a plus in such a situation. My husband walks every day and lifts light hand weights. What is included in your exercise program? Dan has a doctor's visit coming up and it would be great to run this past him. Also, any idea when disability does audits and verify's continuing disabilities? cavalier_1@msn.com


Jon's February 25 reply to Davida S' February 25, 2002 - Hi, I must first say that I do not recommend this program to any CHFer. My doc knows my previous experience level with physical training and physical fitness, so he trusts me to adapt the program for best benefit without killing myself. The basic program is Bill Phillips' "Body For Life" available at public libraries. I have heavily altered it since I disagree with some of his strategies such as working out on an empty stomach in the mornings, and I follow my own diet. Jon.


Aida, February 26, 2002 - Hi Jon and everyone, Thanks for being here. This is my first time posting. My husband has class 4 CHF. His EF is 10% and has been so for the past 2 1/2 years. He just turned 50 and is not a candidate for a heart transplant.
     It seems like overnight he lost all his muscle tone and has also lost about 20 pounds. He still forces himself to do things around the house while I am at work and does a lot more than he should because he cannot stand to be idle. However, about 6 months ago his cholesterol was extremely high and he was given 2 medications: Gemfibrozil and Pravachol. Well, when we noticed the change in his muscles we started to check his newer medications and found that these two meds should not have been prescribed together. The pill book states that doing this can cause severe skeletal muscle degeneration.
     His cardiologist seems to think that this is just part of the disease as it is progressive and has pretty much brushed the whole thing off. However, this happened almost overnight, or so it seems. He has since stopped both of these meds but does anyone have any idea what we can do about this? Does anyone else out there have this problem? How do you get your muscles or even just some muscle tone back when you have a 10% EF? Also, what about this weight loss? He seems to be eating decent meals.
     Help! I really need to talk to people who have been there. Prior to this he had gained a little weight but he looked a lot healthier. Hey720@aol.com


Katie Mayne, February 26, 2002 - Hi, My grandpa has had heart problems ever since I can remember. In 1998 on my graduation night he had another heart attack. Ever since his first heart attack he has been to the doctors and done the stress tests as they wish. Then in 2000 he had his third heart attack. After looking over his charts they told him something should have been done years ago but he was never told of anything.
     He is currently under the care of a heart failure group since all the doctors around here told him there wasn't anything more they could do. He only has 12% pumping. He didn't do too well at his last stress test and they told him he might have had a mild attack again. Needless to say, he has been quite depressed since a little before Christmas time.
     His heart is now at 35% since starting with the heart failure doctors, but I was wondering if anyone knew what percent you had to be at to be considered for a transplant. I have been looking up and reading information over the Internet, but it all is pretty much Greek to me. Does anyone have any information that might help me out?
     Thanks for taking the time to read my story. He means so much to me and is the only grandpa I have left. Katie. mayne_one@hotmail.com


Maria, February 26, 2002 - Hi, My husband just had an echo and the Max Vo2 stress test. He has had several echos but this was the first stress test for oxygen consumption. He read your information on the stress test before he went and thought it was very helpful. He would have been extremely unhappy if he hadn't been so prepared. Bringing a change of clothes was a big help. He said he was able to go until they had the treadmill almost at a run and the elevation was steep. At that point he had to stop because of a knee problem rather than being able to handle the pace (at least that is what he told me). His oxygen consumption was 20.5. I know this is pretty good but I'm wondering about what is normal. I read the material about 10 to 14% being the transplant threshold.
     He didn't get a full report on the echo because his regular doctor was away and the one he saw wasn't up to speed (long story). His EF was 50%, down from 57% the last time. This doctor gave him a perscription for Viagra. I haven't seen much on this site about the use of this for people with CHF. Any thoughts or experience? Any feedback or more information on the stress test would be appreciated. Many thanks. kmmcf@vineyard.net


Sheryl C's February 26 reply to Katie's February 26, 2002 - Hi Katie, How nice that you love your grandpa enough to read this message board. On Jon's site, you need to read The Manual and also about what ejection fraction is. A normal heart only pumps at 55% so the 35% is not as scary as it sounds. Your grandpa's EF is probably too high for him to qualify for a heart transplant. Hopefully he will continue to improve. Make sure he is knowledgeable about his diet and what exercise he can do. I'm sure his having a loving granddaughter makes him happy so give him lots of good healing hugs to help too. Good luck, Sheryl. cvprehab@hotmail.com


Davida S' February 27 reply to Aida's February 26, 2002 - Hi Aida, With such a low EF I am assuming he has quite a bit of fluid retention. Could the weight loss partially be contributed to fluid loss and some improvement in heart function? Also, I would suggest light hand weights/dumbells about 3 pounds used daily.
     Leg lifts might help maintain and improve his muscle tone. Check with his doctor first to get the okay. This helped my husband tremendously. Before his CHF he had average muscle tone but was losing it fast from sitting around doing little to nothing. He had an EF of 10% and it's up in the 50s now. Also, weight loss is helpful for CHF patients but we don't want to lose it by wasting away either. So some level of activity is always good if doctor-approved. cavalier_1@msn.com


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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