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

Kelly S' 8-5 reply to Brenda M's 7-29     questions, thanks, update
 
Donna H 8-5     pacemaker implant went well & more
 
Sheryl's 8-5 reply to Kelly S' July 27     dealing with diabetes
 
Susan B 8-5     venting, others' choices
 
Brenda M 8-5     what do we do now - getting desperate
 
Donna H's 8-6 reply to Brenda M's 8-5     getting information
 
Jon's 8-6 reply to Brenda M's 8-5     getting information
 
Vonda 8-6     seek end-stage experiences
 
Jon's 8-6 reply to Vonda's 8-6     I hope people reply
 
Donna H's 8-7 reply to Jon's 8-6     doctors and nurses, proper care
 
Jon's 8-7 reply to Donna H's 8-7     doctors and nurses, proper care
 
Scott Brown 8-8     transplant difficulties are not understood
 
Jon's 8-8 reply to Scott Brown's 8-8     transplant difficulties are not understood
 
Sherry's 8-8 reply to Vonda's 8-6     end-stage caregiving experience
 
Myrtle C's 8-8 reply to Vonda's 8-6     end-stage caregiving experience
 
Roseanne S' 8-9 reply to Scott Brown's 8-8     heart transplant experience
 
Ginger's 8-10 reply to Vonda's 7-19     caregiving is very difficult
 
Ginger's 8-10 reply to Vonda's 8-6     caring for end-stage heart failure patients
 
Kelly S' 8-12 reply to Sheryl's 8-5     thanks, breads
 
Kelly S' 8-12 reply to Susan B's 8-5     condolences and more
 
Kelly S' 8-12 reply to Brenda M's 8-5     I hope things get better
 
Kelly S' 8-12 reply to Donna H's 8-5     keep us posted
 
Kelly S' 8-14 reply to Vonda's 8-6     hang in there
 
Donna H's 8-15 reply to Kelly S' 8-12     pacemaker has made a big difference
 
Bob's 8-17 reply to Jon's 8-8     you are against transplant and more
 
Jon's 8-17 reply to Bob's 8-17     incorrect
 
Richard M 8-17     CHFers can get better!
 
Kelly S' 8-17 reply to Donna H's 8-15     glad to hear good news & more
 
Deb 8-17     seek EECP experiences
 
Pat Y's 8-19 reply to Jon's 8-17     really like this site
 
Kelly S' 8-19 reply to Bob's 8-17     positives and negatives on transplant
 
Kelly S' 8-19 reply to Richard M's 8-17     good news helps
 
Mike W's 8-19 reply to Bob's 8-17     positives and negatives on transplant
 
Brenda 8-19     this is an ongoing nightmare
 
Brenda's 8-19 reply to Bob's 8-17     trusting doctors too far
 
Donna H 8-19     seek pacemaker experiences
 
Carole 8-19     I really need some answers!
 
Jon's 8-19 reply to Carole's 8-19     here's a start - I hope others also reply
 
Kelly S' 8-20 reply to Brenda's 8-19     wishing you better times ahead
 
Irene 8-21     seek end-stage information
 
Jon's 8-21 reply to Irene's 8-21     some end-stage heart failure information
 
Cathy 8-21     chest pain and blood pressure questions
 
Irene's 8-21 reply to Carole's 8-19     figuring out how to deal with end-stage
 
Carole T's 8-21 reply to Jon's 8-19     I'll check on those things
 
Myrtle C's 8-21 reply to Carole T's 8-19     end of life care experience
 
Abbe's 8-21 reply to Carole's 8-19     coping, doctors, and more
 
Judy H's 8-22 reply to Carole's 8-19     sodium intake possibility
 
Carole K's 8-23 reply to Judy H's 8-22     more info, thanks & more
 
Kelly S 8-24     nutritional disorder
 
Myrtle C 8-24     end-stage CHF experience
 
Carole K's 8-26 reply to Jon's 8-19     meds list - any ideas?
 
Thomas Reidman 8-26     EECP trial still taking entries
 
Jon's 8-26 reply to Carole K's 8-26     just more questions
 
Vonda 8-27     good news!
 
Carole K's 8-27 reply to Jon's 8-26     questions
 
Jon's 8-27 reply to Carole K's 8-27     CCBs, blood pressure and more
 
Kelly S' 8-28 reply to Vonda's 8-27     that's great news!
 
Ginny 8-28     hard to be optimistic after husband's transplant
 
Carole K's 8-29 reply to Jon's 8-26     kidney possibility
 
Jon's 8-29 reply to Carole K's 8-29     treatment decisions
 
Michelle 8-30     having trouble coping - anyone else?
 
Derald's 8-31 reply to Cathy's 8-21     staggering meds can help & more
 
Kelly S' 8-31 reply to Ginny's 8-28     it can be very hard & more
 
Kelly S' 8-31 reply to Michelle's 8-30     getting the right doc & more
 
Kelly S 8-31     hoping for replies about changes
 
Sandy's 8-31 reply to Michelle's 8-30     changes, coping & more
 


Kelly S' August 5 reply to Brenda M's July 29, 2002 - Hi, I'm sorry to hear that your Bill is having so many problems. How old is he? Does he go for therapy? Also, Jon thanks for that article, it was very interesting and once again I learned something new today.
     Yesterday was a rough one on this end! Larry woke me at 4:30 AM with severe jaw pain on the left side. I called our local Ask-a-Nurse and explained the situation and she recommended taking him to the ER to be checked. We spent 2 hours at the ER and one hour at the pharmacy. It seems it may be an abcessed tooth, but our denstist is out until Tuesday. So they've given him pain meds and antibiotics to get him through until then. The nurse also asked if he was having chest pains. She said, "Sometimes when the pain is on the left side near the temple area, it can be heart-related." That's why I decided to take him in and have him checked. larkel@locl.net


Donna H, August 5, 2002 - Hi, My husband had his pacemaker put in last Friday and he came home today, 12 days after I took him into the ER. The pacemaker surgery took 4 hours but he was awake for most of it, talking with the cardiologists and med students.
     I immediately noticed an improvement in his breathing and he just generally looks and feels better. They have adjusted his medications and he goes back in a week to check everything. He is still in a-fib but his low heart rate is corrected by the pacemaker and the high heart rate is corrected by Coreg.
     The doctors were very good to talk to me but were a little surprised when I asked what model would be used. They use both Medtronic and Guidant but chose the Guidant in my husband's case because it was able to give them a little more information. It was thanks to this site that I was well informed enough to know what questions to ask. Thanks, Jon! herdrich@grm.net


Sheryl's August 5 reply to Kelly S' July 27, 2002 - Hi Kelly, Does your husband keep track of his carbohydrate intake in each meal? For me as a diabetic, this is the best way to keep my weight and blood sugar under control. I limit my carbohydrate intake to 150 per day. Check with his doc to see what his carbohydrate intake should be. If you don't really know the carbohydrate amount in all foods, you should make an appointment with a nutritionist that specializes in diabetic counseling.
     I eat only a 1/4 to 1/2 cup portion of pasta or rice. I don't eat white bread ever. It is keeping the portions small that helps me the most. Fill up on vegetables. A late afternoon snack of veggies and low fat dip will help curb the dinner appetite. Mid-morning, try some fruit but count those carbs all day!
     Another important thing is to plan your meals the day before. If you wait till it is time to eat, you may be tired and just grab anything. People think I am obsessed with food because I'm always wondering what to cook the next day but if I don't have something planned I will slip on my diet. Good luck. I hope this helps, Sheryl. cvprehab@hotmail.com


Susan B, August 5, 2002 - Hi all, My uncle just passed away from heart failure and the flu. He was fighting going to the hospital all the way. He had a very bad heart attack two years ago and had been on Disability. I tried to get him to read print outs from here, but he would not do it. He started smoking again and did not take care of himself at all. He was ready to go - all his organs had shut down by the time his sister and brother-in-law could get him to go to the hospital. His body was plain worn out. Additionally, Uncle John was worried that the insurance would not pay because he did not think he was sick enough to go to the ER.
     My husband George has CHF. I have made him promise me not to fight going to the doctors or hospital. My husband goes downhill so fast when he gets sick with the flu or anything else.
     Thanks, I just needed to vent. I have spent the last several hours explaining to my cousins that there was nothing we could have done to get him to the hospital short of forcing him to go at gun point, and most of us don't have any guns. He did not want to go and he was living life the way he wanted to live. While I will miss him and I loved him, I am not going to feel bad about him living life the way he wanted to live it. If I would have had my choice I would have had him get with the plan and follow it, but it was not my choice. Free will is a double-edged sword. Thanks, my prayers are with you all, Susan. gbracher@kc.rr.com


Brenda M, August 5, 2002 - Hi, Well, it has been another bad week. They decided my brother-in-law could come home this past weekend. He was inproving in their eyes and they said he was not having any more problems with the CO2. He came home Friday and my husband, who has stayed with him since his surgery, took him home to his mother's house. We fix his meds for him because although they say he is fine, he has no idea of the meds he needs to take and it is almost 3 months after the transplant.
     Friday goes by and although he doesn't look real good, he is still better than he was. Saturday he starts having a few mental problems and we deal okay with those. By Saturday evening, you can only keep him awake for a minute at most. We call his transplant coordinator who asked if we gave him the wrong meds, but we had done it correctly so we called an ambulance.
     They get here and find that his oxygen levels are dangerously low. They took him to the hospital 20 miles away, where they put him on a respirator. Then they took him back to the hospital he started in 8 months ago. Now we are back in ICU on the respirator and they are talking about another surgery to fix his diaphragm, which they earlier told us could not be fixed.
     When the main doctor is confronted, his reply is, "We knew he would be back." This seems unreal to me. Then he has the nerve to say, "I can't believe you would question me after all that I have done for him." Don't get me wrong - we are grateful for the things they have done but this is his job and we are talking about a member of our family. All we want is the truth and to be kept informed of what is going on. They bring papers to sign and say we are going to do this or that and that's it.
     How do we get the information we deserve to know? It's not like we haven't been there through all of this trying to do whatever it takes to help him. We are at the end of our rope. bmolton@yesconnect.net


Donna H's August 6 reply to Brenda M's August 5, 2002 - Hi, Since we just got home from the hospital, I can understand your frustration very well. Sometimes it seems like the family is treated as if they are either uncaring or too pushy and the doctors and nurses take offense when none is meant.
     I tried very hard this time to find some way to make the staff know that we were concerned and yet we didn't want to get in their way or second guess them. Luckily my husband was in a teaching hospital and we found that some of the med students were easier to talk to than the doctors. We got a relationship started with them in the first few days and it seemed to carry over to our relationship with the doctor.
     This hasn't always been the case and when communication breaks down between the staff and the family, the patient's care can suffer. If you don't think that you are getting through to the doctor, maybe you could talk with one of the nurses and find out more particulars about your brother-in-law's care. Have you had confidence in this doctor before? Do you have a choice of doctors? We have had some doctors that just weren't a good "fit" and I requested another doctor.
     I hope you can find some answers and get him the help he needs. herdrich@grm.net


Jon's August 6 reply to Brenda M's August 5, 2002 - Hi everyone, Donna gives some excellent advice. The one thing I would be very cautious about is accepting what nurses tell you about a patient, any patient. Nurses are well trained and heavily involved in patient care - but they are not doctors! I have heard some plainly inaccurate information come from nurses on hospital floors and unfortunately, patients tend to believe them at face value.
     Heart failure is incredibly complex. Think about it - heart failure specialists are proven to give better care than general cardiologists, who are proven to give better care than internists, who are proven to give better care than MDs. This is fact (see this page). Obviously then, a nurse is not in a position to give the kind of information a regular MD, much less an internist, cardiologist, or best - a CHF specialist, can give you. This is not an insult to nurses. It's just a matter of training. Nurses require a broad medical training or they could not do their job. Heart failure requires a lot of very specialized training and education.
     So, please discuss all your questions with a doctor, even if it is uncomfortable and even if his attitude seems bad. Sorry to seem contrary but I think it needs to be said. My own CHF doc's nurse often refers me back to him rather than trying to answer all my questions herself.
     Brenda, specifically to your situation, it will be difficult but you need to approach the doctor humbly at first to get him started talking, then start popping mild but very specific questions to get specific information out of him. If that does not work, you need to get an opinion from a different doctor who is less full of himself. If that fails, fire them and get your brother in law to a different medical practice if possible. I don't know enough about your position to give good advice, but working with the tiny bit I know that's my 2¢ worth. The approach is as important as the questions when prying information out of a doctor. ;-) Jon.


Vonda, August 6, 2002 - Hi, I finally got up enough nerve to ask our nurse practioner at the clinic what stage my mom's heart failure was in. She is in her last stage. I kind of knew it but just hearing a professional say it is reality. However, when I asked how long someone usually lives in that stage, she replied, "It depends on her will to live." I know that no one knows how long but some of you out there have been through all stages and I would just like to know how much time I have left with my mom. Thanks. jmgandme@aol.com


Jon's August 6 reply to Vonda's August 6, 2002 - Hi Vonda, Please everyone - if you have experience dealing with end-stage heart failure, write in and share your experiences despite the personal pain it may bring to mind. Others need to hear it. This is one area that I get a lot of requests for and have very little first-hand information to give myself.
     On a different note, has the doctor had her blood sodium level checked? Her BNP level? Her heart rate variability? Her CgA level? These are all things that can point to a definite and accurate prognosis. Don't rely on a nurse for this kind of life-changing information!
     I am sorry to beat this to death but it is critical. Talk to your mom's CHF specialist. If necessary, make an appointment and take a written list of questions to ask him and go over them one by one. Never accept information that condemns your mom to death and also condemns her to not ever feeling better from just anybody - not even a doctor - unless he has specific information to support his opinion. This is a life! and cannot be dealt with casually. Saying "end-stage" often means a lack of effort from that point onward to make the patient feel good, and that's not right.
     Sorry, but I had to get that off my chest. It's not you - it's a general American attitude to casually accept life-changing news from people who are not qualified, and from people who should know but have not done their job properly so they don't really know. It drives me crazy. This is not meant to say you are not doing your best or don't care - not at all. However, even I have to vent sometimes. I just wish people would hold health care professionals accountable for all that they say and do. Then they would take their jobs as seriously as they should in the first place. Jon.


Donna H's August 7 reply to Jon's August 6, 2002 - Hi, You are very right, Jon, it is difficult for a nurse to understand about CHF and it's problems. We found that most of the nurses taking care of my husband were either working too many hours or being taken from other floors to help out. They gave the best patient care they could but mostly they had meds to pass, vitals to check, buzzers to answer and forms to fill out. That left little time to think about each patient as a person.
     We tried very hard, though, to make them aware that we wanted an active part in my husband's care. For instance, one night when the nurse brought in my husband's meds there was a blood pressure pill in the cup. Instead of meekly taking it as he would have done in the past, he asked the nurse if she knew that he had several episodes of low blood pressure that day. Once she learned that his blood pressure was already down to 80 over 60, she decided that maybe the doctor should talk to him before he took the medication.
     Although it is difficult to change doctors, sometimes it make an incredible difference. A doctor told us in January that there was nothing that could be done for my husband. We changed doctors and found that surgery was an option. We have had some criticism from people that felt we didn't give the previous doctor enough of a chance but we gave him as much chance as he gave my husband. When you are dealing with your life, you must do what it takes to get the best care possible. herdrich@grm.net


Jon's August 7 reply to Donna H's August 7, 2002 - Hi Donna, I couldn't have put it as well, much less better. :-) I realize that many people do not want to leave a doctor they feel comfortable with. I felt the same way. That attitude on my part almost got me killed - literally. I am going through this with my own mother right now.
     What we all need to remember is that "comfortable" does not mean "safe." A doctor is only as good as his last diagnosis, his last treatment! Please everyone, seek the best care - it is indeed your life, as Donna put it so well.
     Is it more important to make your loved one live longer and feel better, or to have a comfortable and non-stressful relationship with a doctor - who might be killing you by omission, if not in other ways? It's a brutal question to face but necessary. Bite down hard and change doctors whenever it is necessary, to get straight answers and proper treatment. It's your life!
     Of course, that doesn't make it easy and I realize that. Knowledge is power. Learn, and your confidence will increase. You are all smart and strongly motivated people - you found this site, didn't you? You worked up the courage to post here. You want to know, and you want the best for your loved ones. I know this about you. I also know that you can go get the best for them, and for you. I have faith in you all. Jon.


Scott Brown, August 8, 2002 - Hi, My dad had a transplant in April. He was very ill following the surgery, including double pneumonia. He suffered with his idiopathic cardiomyopathy for over 15 years before he was close to death with the condition.
     Many people do not realize that just because you get a heart transplant it does not mean life as in back to the life of the healthy! The transplant recipient has a lot of work to do to regain even part of his strength and stamina. The cocktail of anti-rejection drugs does not help. Often you are found diabetic and they want you to use pills before they give you insulin. Unfortunately, eating a diabetic diet is not very conducive to gaining weight. Many of your organs could still be in failure due to years of improper blood flow.
     Many heart failure patients almost turn their back on you, because you no longer share the same condition. It's like abandoning the "heart failure club." I'm sure there are support groups for transplant patients, but they are not as good as Jon's Place. If viruses, fungal or bacterias move into the compromised transplant recipient, relatives of the family start to say, "I guess the transplant wasn't really worth it." They give subtle hints like, "I've told my family to pull the plug if I am on life support."
     I think any other caring family in our position would hang in there because their family member has made it this far. It hurts me to see my dad suffering, but I could see the potential for him to get better in the 6 weeks we had him home. He came off the oxygen and was able to walk around the house on his own, and even sit up on the couch for the whole day. If we would have thrown in the towel before, her never would have made it to this point.
     Most importantly, he never complains any more about all the problems. He knows he is already living on "bonus time" and he enjoys the "star treatment" he gets at our regional hospital. The fungal infection he has now is not responding to any of the treatments so far. He has been "out of it" for several days now and has a device that assists his breathing (something less than a respirator). We have no intention of pulling the plug now. As far as I know, it is not even an option.
     I wish the relatives (or people close to us) would learn that nothing positive can come out of their unnecessary comments. Scott Brown. Kitchenerguy@hotmail.com


Jon's August 8 reply to Scott Brown's August 8, 2002 - Hi Scott, Well spoken. I get the most resistance from the transplant community (both professional and patients) when I trumpet the downside of the procedure and its after-effects. You would think I am a religious heretic because I think people facing the decision are not properly informed first.
     However, I also believe that it is a truly wonderful option if used properly - as a last resort - for those who have run out of other options. For such people it is a life saver and a chance at doing things they would never have done otherwise.
     I try to include transplant patients at my site but have a great deal of difficulty because I have not had a transplant myself so I cannot approach it with the personal touch I can use addressing heart failure. I have many transplant recipients ask me to run a message board for them, but I just cannot - too tired. However, I hope they always feel free to join in here. :-)
     Once the decision - a highly personal one - is made, it's time to move forward, period. People are dreadfully misinformed about the whole process, and that makes it even harder for them to be supportive. This is the fault of medical professionals, recipients, and the press. Recipients should realize that their choice is not the choice everyone will make so they should try to avoid pure cheerleading-style enthusiasm and flavor their approval of the procedure with some reality.
     The reality is that it mostly depends on chance as to how good your match with your donor heart will be. The heart cannot survive long enough outside the body to allow for precise matching like they do with kidneys. A good match can mean a good life, a bad match can mean miserable dying, and all points in between.
     Unfortunately, only those with a reasonably good match survive and are up to talking to the press at length, so they are the only ones we hear from. The press - as usual - don't take the time and effort to research the other side of the coin, only gobbling up whatever the medical community says and interviewing only those with a "successful" transplant.
     The transplant medical community treats anyone who frowns on transplant in any degree - whether for cost, complications, the uncertainty involved, or any other reason - as a religious heretic, as I previously mentioned. I run into this all the time even though I am pretty close to neutral on the subject overall. Transplant doctors and nurses seem to think it should be painted to the world at large as a rosy garden path since they think otherwise the public will frown on the huge cost involved, or quit signing donor organ cards.
     Those who do choose the procedure should be completely supported by all involved. They made a choice and they are dealing with it the best they can. They deserve only support and help along the way. Those who refuse the procedure should be equally supported. I say that no one who hasn't walked in another person's skin should criticize this particular decision. I have faced that decision and I was roundly criticized by many for my refusal, with few people (none actually) being educated enough on the subject to even express why they thought I was wrong. It was and remains very frustrating.
     Sorry - I guess this is my week to vent. Scott, I know you were mainly just venting, but I have so much pent-up frustration on this subject that it set me off too. Even though my frustration is with different aspects of the transplant picture, I understand where you are coming from and sympathize deeply. I wish you and your family the best and if I can help with any specific information, let me know. I try to make my heart transplant section as useful to recipients and those facing the decision as my heart failure pages are to CHFers. I also encourage recipients to list at Me Too and the Transplant Stories section, although without a lot of success. Jon.


Sherry's August 8 reply to Vonda's August 6, 2002 - Hi Vonda, I have not written here in quite a long time but I read the message board all the time. Your messages have touched me a great deal and I just wanted to write you and let you know of my experience a little.
     I lost my mom on January 11, 2001, after a long, long battle with CHF. I was her primary caretaker and have been through a lot so I think I have an idea of how you are feeling. About your question on end-stage CHF, I am here to tell you that my mother was literally in "end stage" for over 2 years! Yes, it is true that her will was strong but I think people get carried away with the stages and numbers. When I first found out she was in end-stage, I braced myself, but my mom had her good days and her bad days and then I stopped thinking about her as being in end-stage. At least 7 times in one year the doctors at the hospital told me she would not make it through the night. Well, she surprised everyone and kept going.
     The night she did pass on, the doctor told me she would be fine. So what I am trying to say is that no one ever knows how long end-stage can be. We had wonderful times during her end-stage illness and bad ones too, of course. This forum helped me a lot and I hope that it helps you as well. Please feel free to contact me directly if you wish. I hope your mom is having good days and enjoy every one of them and I hope you are taking care of yourself, however way that works for you. All the best, Sherry. ketsel@aol.com


Myrtle C's August 8 reply to Vonda's August 6, 2002 - Hi, Iunderstand your pain about your mom. I went through the last stage with my mom in 1998. When she could no longer be alone our doctor suggested an Assisted Living Home. My daughter and I tried do everything on our own and just couldn't make it work, ao I checked with Hospice and they were so helpful. I talked to them privately and explained the situation, they then went in to see mother and visited with her.
     She signed the DNR (do not resuscitate order). I'd known this was how she wanted it. Talk to your mom about this while she still can do it. Hospice supplied all "comfort care" needs such as nursing 24/7, put in a bladder cath, got a hospital bed, got morphine to give as needed, etc. A doctor came to see her every so often. The last time he saw her, he told us she could live another few months. Within 2 days she could not eat, we gave her sips of water just to keep her mouth moist, as the Hospice nurse instructed.
     My daughter was with her the night she passed on. She woke up for no reason and found mom had left this land of the dying to be in the Land of the Living. She is at peace and so am I. God bless you and e-mail me if you would like. I also am a CHF patient. omie@axs4u.net


Roseanne S' August 9 reply to Scott Brown's August 8, 2002 - Hi Scott, As the wife of a heart transplant recipient, I thought I would throw in my two cents worth. I agree with your comments and Jon's comments. My husband did not want a transplant and tried everything he could to get better. In the process, the doctors think he actually wore out his heart quicker.
     When transplant was first mentioned to us it was in a years-from-now discussion. Charlie decided exercise would make his heart stronger so he walked and walked and walked. In less than a month his blood pressure would not stay high enough to support life and his lung pressure was dangerously high. The doctors went from, "Someday you will need to transplant" to "We don't know if he will survive long enough to get a transplant."
     Charlie made the decision he wanted to stick around awhile longer, so he agreed to transplant. Ours was a successful match and Charlie has worked hard to take care of the precious gift he was given. Has it been easy? No. Has it been worth it? Yes. However, he has to work at it every day for the rest of his life. He has totally changed his diet, trying to stay off as many pills as possible and is committed to a regular exercise program.
     We were very blessed to get a good match but I can honestly say that if I were faced with the same decision for myself today, knowing what I do now, I am not sure I would agree to a transplant. I admire and am very proud of Charlie for what he has accomplished. I thank God and the wonderful donor family every day for the miracle and the bonus time they gave us.
     I think that if we had been given all the information about LVAD and heart transplant at the time, the decision would have been a lot harder to say, "Do it," at least for me. I am still learning the risks and problems involved. Everyone tells me to forget last year and just think about how much better life is now, but I can't seem to do that. I am still waiting for the other shoe to drop, so to speak.
     I know information is power, but sometimes I think you have to accept that you made the best decision you could at the time and go on from there. Good luck, Roseanne. rschurick@hillcrest-gcc.com


Ginger's August 10 reply to Vonda's July 19, 2002 - Hi, Sorry it has taken this long to answer your post, Vonda. I am a patiant myself and now a caregiver to my stepdad who is 76 and in end-stage CHF and end-stage COPD. I have had to move out of my house and leave my hubby with our kids and move in with my stepdad in order to care of him. Do I feel stressed out by trying to take care of my family and my stepdad? Definitely!
     I only get home on Friday and Saturday nights when my brother in law spends the night with my stepdad for me so I can go home and be with my kids and try to catch up on housework and laundry and things like that here, plus now trying to get the kids ready to go back to school. I have been doing this for about 2 months now.
     So I know how you feel and how sressed out you must feel. I have had DCM for almost 5 years now and the hardest part right now is being tired. I hope you get and have help. My brother in law on Friday and Saturday nights plus hiring a nursing aide here and there - which gets real expensive real quick - are the only help so far that I have. I have had no luck in finding any respite care here in our town. Miami is the pits for help with this, as I am finding out, and that is unreal since it is really a retirement place for a lot of senior citizens.
     I did find one link here but it's not exactly what I need to get help. The more I search the Net, the more frustrated I become. I hope by now things have sort of settled down and you have help and support. Best wishes to you and yours. Hugs and prayers, Ginger at www.heart-help.net. angelgin@earthlink.net


Ginger's August 10 reply to Vonda's August 6, 2002 - Hi, Just what kind of info are you wanting to know? I will gladly tell and offer what I can, just let me know what kind it is you want or need. Hugs and prayers, Ginger. angelgin@earthlink.net


Kelly S' August 12 reply to Sheryl's August 5, 2002 - Hi Sheryl, This information is helpful and I'll copy and print it for Larry. He was just asking about rice earlier this week. We're bad about the white bread. I love whole grain breads, but Larry's not much on them. Thanks for the advice and as always, thanks Jon, for keeping the board alive. larkel@locl.net


Kelly S' August 12 reply to Susan B's August 5, 2002 - Hi, I am sorry for the loss of your uncle. It sounds like you folks had quite a struggle. I know from experience you can lead a horse to water, but you can't force him to drink. I once called an ambulance for my father and he refused to go to the ER, but ended up in the hospital within the week. My prayers go out to you and your entire family as you deal with the loss of your loved one. larkel@locl.net


Kelly S' August 12 reply to Brenda M's August 5, 2002 - Hi Brenda, I am sorry you are all struggling so. I'm praying that things improve for all of you. larkel@locl.net


Kelly S' August 12 reply to Donna H's August 5, 2002 - Hi Donna, I'm so glad that your husband got a pacemaker and is hopefully continuing to improve daily. Keep us posted on how he's doing and how the family is coping with the changes. larkel@locl.net


Kelly S' August 14 reply to Vonda's August 6, 2002 - Hi Vonda, I hope that your mom defeats the odds and is with you for many more years. Make each day special and when she feels good enough, do things together that you both enjoy. Make the most of each day and on bad days, remember the good oens and share together. My dad suffered with COPD for several years. He had several close calls but surprised us more than once! No human knows when our time is up, only God has that answer. I'll say a prayer for you and your mom, and am keeping both of you in my thoughts. larkel@locl.net


Donna H's August 15 reply to Kelly S' August 12, 2002 - Hi Kelly, In a couple of days it will be two weeks since my husband got his pacemaker. What I notice most is that he is able to breathe now. Today I noticed that for the first time in more than two years, he doesn't have puffy bags under his eyes. His color is better and most of his angina pain is gone. He has been having some sharp pains so we went back to the hospital today so he could be checked. We couldn't see a cardiologist but did see a good nurse practioner. She had them do blood work, a chest x-ray and an EKG. She talked to the cardiologist and they are setting up an appointment for next week.
     This was our first time to see the NP and she took a very complete history and told us some things we didn't know. She was good to explain but also told us plainly that she wasn't a cardiologist so we should rely on the heart doctors for specific questions about his pacemaker and heart condition.
     I know a pacemaker isn't the answer for everyone but it has surprised me to see the difference it has made in my husband in only two weeks. herdrich@grm.net


Bob's August 17 reply to to Jon's August 8, 2002 - Hi Jon, Having visited your board for probably 3+ years, I have noticed your intolerance for using heart transplants as a cure for CHF. As a matter of fact I have noticed intolerance on your part for the medical community as a whole. You must have had some pretty bad experiences.
     I, on the other hand have had to make some serious decisions myself over the past 4 1/2 years. I have had to fire my initial cardiologist and seek better care, I had to choose whether to have an LVAD or continue deteriorating and I had to make the transplant decision. I had the LVAD and the transplant and am doing great 2 1/2 years out. My medical staff gave me nothing but clear, precise, and honest advice. All I had to do was listen make the decision and trust the professionals. You most certainly have done more research on the stats than I have. But I have lived the process. I think, at least on this topic, you would better serve your readers by being truly neutral on this subject.
     You stated that you are neutral on this topic, but you might want to read your post again and reconsider that statement. Again I don't know all of your experiences, but my observation over the past years is that you live through your CHF. Why anyone would pass up the opportunity to get rid of restricted existence and replace it with healthy living is beyond me. You must like the sympathy and excuses that CHF creates and offers. You might want to ask yourself the question - Can I have a life without CHF? RXB0@nreca.org


Jon's August 17 reply to Bob's August 17, 2002 - Howdy-doo Bob, My first response to your post is to just say, "Please re-read the August 8 post and read it thinking that the writer is a transplant supporter." See if it sounds different to you then. It seems pretty well-stated to me.
     However, since you think that I have had a long grudge against transplant and doctors for years, I guess I should reply in detail to clear up any misunderstanding. By the way, I'll not comment on that last shot because that's all it was.
 
     You are absolutely right on one count. Heart transplant is not a cure for heart failure or anything else. Ask your transplant cardiologist in those exact words - "Is transplant a cure for heart failure?" and he will tell you the exact same thing I tell people: that transplant is exchanging one set of medical problems for another set of medical problems. To take that as a criticism of heart transplant is just a misunderstanding of what I wrote, so I'll go into more detail, hoping to say it more clearly.
     The benefit to transplant is that when it becomes a more viable (manageable) option than the disease it replaces, it can save lives and improve people's quality of life greatly. So as a last resort, it is a wonderful option. In fact, I'll quote the post you thought anti-transplant: "However, I also believe that it is a truly wonderful option if used properly - as a last resort - for those who have run out of other options. For such people it is a life saver and a chance at doing things they would never have done otherwise." I also said, "Those who do choose the procedure should be completely supported by all involved " Sounds pretty neutral to me. ;-)
     However, you are using only your one experience to imply that many or even most transplant professionals fully inform all potential heart recipients of the challenges involved before they make the decision to have the procedure. According to the hundreds of transplant recipients I have talked with over the past 7 years or so, that is not true. It may be even less true when young children are the potential recipient. I have heard from many parents who say if they had been made fully aware of the potential disasters ahead, they might have made a different choice for their child. So I don't think everyone is fully informed before the procedure, and that makes me very angry indeed, since transplant is irreversible.
     To voice my "neutrality" I point to my transplant pages. If they are somehow slanted, please point me to specific instances and I'll be happy to consider changing the phrasing on those portions. I rather like them, although they are a bit dry. <g>
     I do believe that there is one big problem with transplant reporting. This was actually pointed out to me by transplant staff at a local heart transplant center. They reported - and I verified - that one reason you hear so much heart transplant "cheerleading" is that only surviving recipients who do fairly well get to tell their stories. The others die quickly or are in no shape to share their stories - physically or emotionally. Thus, the press' picture and the online picture is often falsely optimistic.
     Not all transplant recipients live a "healthy" life. In fact, a great many never even get close. Go talk to loved ones of those who got a bad match and suffered right up until they died, without ever improving and ask them if they think the now-dead recipient really was aware of all the risks involved beforehand. Some will say yes but many will say no. It happens, and it happens quite a lot. I also had that verified by transplant nurses who followed up on hundreds of recipients over a period of years. I believe heart transplant is a great option for dying people, and for no one else. That's my definition of neutrality on the subject.
     I have two great doctors and am very happy with my care 85% of the time. I am completely intolerant of incompetent or ignorant doctoring, especially when the doctor involved has the arrogance to get upset when questioned. I figure that's a proper attitude for any patient. Expect the best and go get it, and don't be tolerant of repeated or blatant misconduct or ignorance on the part of any doctor. Obviously, you feel the same way so I don't really see why you think that attitude is one-sided. I should point out that I feel the same way about incompetent mechanics, woodworkers, retail clerks and clergy. If it's worth doing, it's worth doing right - more so if people's lives are deeply affected in the process.
     Sometimes when a person speaks out against a specific doctor or treatment, people quickly assume that the person is "against" all doctors and treatments. That's an unfounded assumption, so I won't go into it. When I clearly state (I like to be clear <g>) that many transplant professionals paint a too-rosy picture of heart transplant in general, I am sometimes seen as being "against" everything heart transplant-related.
     My problem is not with the heart transplant procedure itself or with the transplant community as a whole. My problem is with people (like you - no offense intended) who think that a percentage of good experiences mean that all heart transplant experiences are good. I also have a problem with people who think that because I demand great honesty and detail about every single procedure and treatment in advance that I am "against" those procedures. I only want a true and complete listing of the disadvantages as well as the advantages right up front - every time. I say for you again that I believe heart transplant is a great option for dying people, and for no one else. Is that a bad perspective in your view?
     If I had problems with the medical community as a whole, I doubt that I would list their practices on my site or encourage people to treat their doctors as partners in their care. I also doubt that doctors like Marc Silver, Charles Porter, Luigi Tarantini and Patrick McCarthy would be so willing to cooperate with me to such an incredible degree for no credit or profit at all. <g>
     You say that all you had to do "was listen, make the decision and trust the professionals" - your words exactly. I question everything, verify everything I can and then make a decision, listening to those same professionals the whole time very carefully. You're far more trusting than I am. I don't have a problem with that. Why do you have a problem with my insistence on making sure that I get the whole story? Especially when it would change my whole life, every minute of every day, for as long as I lived.
     I wouldn't be so insistent except that we both know that hearts are not matched to their recipient like kidneys are matched because hearts only survive roughly 4 hours after being removed from the donor - there isn't time to extensively match them to any recipient. That makes it a much more difficult decision, and much riskier too. Jon.


Richard M, August 17, 2002 - Hi, It has been one year from the time I was told that I had CHF and like a lot of the people on this forum, I researched it on the Internet and what I found scared the crap out of me. I thought for sure my life had only a few years or even months to live. I then found Jon's site and I read everything twice.
     I then began my fight against it not sure how it was going to turn out but I was not going to lie down and cry. I did that for 3 months and it was not a pretty sight. I am 6'6" and 325 lbs. I smoked and I drank. My EF was 20% and my heart rate was 30 beats per minute and when I slept, my heart would stop for up to 7 seconds.
     I quit smoking and drinking, I lost 60 lbs, and I worked out at least 4 times a week. I watched my salt and made sure I took meds on time. I also had a pacemaker put in and after 6 months I was told I no longer have CHF. My life has changed and I can tell you I am 64 years young and now feel like I am 40. I know not everyone will have the outcome I had, but never give up! Feel free to e-mail on any questions. God bless all. Malczewski@attbi.com


Kelly S' August 17 reply to Donna H's August 15, 2002 - Hi Donna, I'm so glad to hear he's doing so much better. I will continue to send prayers and thoughts your way. It's also great to hear that you liked the nurse practitioner you've seen, that helps to ease your mind also. Good luck on your upcoming appointment and I'm hoping for more good news and continued improvement. Keep us posted. larkel@locl.net


Deb, August 17, 2002 - Hi Everyone, I am wondering if any of you have had a loved one go through EECP treatment or are in it now. My mom just started this week and was admitted for a couple of days. She had low blood pressure with a systolic reading of 67 before a treatment, and today it's up to the 80s, which is low but not bad for her. I am curious if anyone has had problems undergoing EECP?
     My mom has been a heart patient for 10 years. She's 65 and has had at least 10 attacks of endocarditis which led to valve replacement, diabetes, CHF, internal bleeding problems, stents, angioplasties, and bypass surgeries. We have been through it all. Please respond if you've been through this. Thanks so much, Deb.
 
Jon's note: I accidentally deleted the e-mail address, sorry. Deb, see this page for more on EECP


Pat Y's August 19 reply to Jon's August 17, 2002 - Hi Jon, I loved your response. I have found this site to be invaluable. If I have a question, I just keep looking through this extensive site until I find an answer. It may take awhile to find answers because of the mammoth amount of information you have provided. Once I found this site I settled down a lot. I hadn't found a cardiologist specializing in CHF who would answer questions when I discovered this site. By the way, I was diagnosed 12/25/94 so I've be around for awhile. Ptyoumans@aol.com


Kelly S' August 19 reply to Bob's August 17, 2002 - Hi Bob, I'm glad your transplant went well. However, I'm a realist and think that Jon was being honest and letting us know both sides of the coin. As with any medical treatment, there are no guarantees but when there's no other option then I'd say, "Go for it."
     My husband has responded to medication; however at some point he may need a transplant. If and when that day comes I hope the medical community will be forthcoming about the ups and downs. If they're not, then I'll be thankful for this board and some insight that I may not have had if I hadn't found it here. larkel@locl.net


Kelly S' August 19 reply to Richard M's August 17, 2002 - Hi Richard,I am glad to hear you've improved so greatly and that you're able to function so much better. Do you have a CHF clinic in your area? If so, you might want to share your story with newly diagnosed CHF patients. I know that when my husband was first diagnosed it was pretty scary, but hearing this has renewed my hope. larkel@locl.net


Mike W's August 19 reply to Bob's August 17, 2002 - Hi Bob - As a CHF patient who's been on this board since 11/97, I find your comments about Jon's "attitude" about transplants extremely disturbing.
     The fact is that if Jon and I were to find ourselves spending time together in real life, we would find very little in common, philsophically or politically; but in terms of medical info and Jon's opinions about these things, I would listen more to Jon's opinions before half the doctors I've come accross in the past 5 years.
     Your successful transplant is great but I find it shallow to think your experience somehow reflects the experience of the majority of transplant patients. If you don't believe that the layperson's (non-patient) "media view" of the "miracle" of transplant is distorted to the positive, you've just got your head in a dark closet.
     A close friend of mine (34 years old at the time) received a "good match" and spent almost the next 4 years living a more miserable existence then he had just prior to his "miracle." He had no other medical conditions. On more than a dozen occasions he expressed regret to me about his decision and was angry for the information he had not received. On his deathbed his most powerful expression was that he was finally "done." It was less than pleasant watching the results of his "miracle" but I can't even begin to imagine what it was like to live it, even though we were close.
     Take some time out from your well deserved celebration and do the kind of leg work Jon has done. There's an old saying, "history is written by the victors." The public's view of transplant is melded by people like yourself. The experience of the "losers" is never seen or heard. Respectfully, Mike Wafkowski. mikeyw@sohogurus.net


Brenda, August 19, 2002 - Hi, Since the last time I was here my brother-in-law left ICU and returned to the floor. My husband, who has been taking care of him, got the flu, which prevented him from being able to stay at the hospital all the time although he went daily to visit. Plans were being made to release Rick one more time because as the doctors say, there is nothing wrong with him. All of the mental outburst he has been having, we are told is just his way of getting attention. Although the nurses say there is something wrong and he should stay at the hospital.
     Last Tuesday I took the day off to go with my husband to make arrangements to take him home. We called before we left and everything was fine or so that is what we were told. We got to the hospital and there was no one in his room, the bed was gone, there were needles, bottles, gloves, and blood on the floor. We went to the nurse's station and he had been taken back to ICU on a respirator. We went to everyone we could find to find what was going on. We couldn't find his doctor. Finally they let us in to see Rick. He was on a respirator on lots of meds and not responding to anything.
     We went back to the nurse's station to find out what happened that morning. First we were told he almost stopped breathing, so the respirator was just a precaution. We went back to the ICU find one of the surgeons who put in his new heart. He finally told us they aren't sure what is wrong but that there is something wrong and they are trying to find out what. Up walks his head doctor, who informs us that he does not think we should be talking to the nurses, doctors, and social worker they assigned to us, and he is resigning from the case.
     We talked with several others before we were sent home because there was nothing else we could do. The next day we got to waiting room and the sitter they had with him came and told us he was coded and rushed downstairs with the nurses and doctors running by the bed with the crash cart. She has filed a report with administration - finally, someone who isn't afraid of the doctor. Now he is back off the respirator and plans are being made to release him again. This has turned into our worst nightmare. Brenda. bmolton@yescoonect.net


Brenda's August 19 reply to Bob's August 17, 2002 - Hi, The experience we have had with a doctor we had trusted and respected for years has caused us nothing but pain. We have went through everything with my brother-in-law for years, when his Heartmate was put in, and everything was out in the open. When he received his heart transplant things didn't go well and now we are unwelcomed outsiders. Not all doctors are quite what you think when problems start to arise. bmolton@yesconnect.net


Donna H, August 19, 2002 - Hi, I posted this on a pacemaker forum and haven't heard anything there. Today I called the hospital and was able to get an appointment with the cardiologist September 3rd. In the meantime I still have unanswered questions about his blood pressure and his pulse rate. He is still in a-fib and they are trying to correct his fast heart rate with Coreg. His pulse is around 97 to 99 and his blood pressure is 100 over 80. Has anyone else had this kind of problem after having a pacemaker inserted? I have called the cardiologist but only talked to the nurse, who scheduled him for a pacemaker clinic September 26th. He has had no follow-up with his cardiologist since his August 2nd surgery. Is this normal? His pacemaker is a Guidant Insigna model 1194. herdrich@grm.net


Carole, August 19, 2002 - Hi, I am of need of answers to the questions, "What's next, What should I look for?" What should I do next? I have a 88 year mother with end-stage heart disease, a-fib and an enlarged heart. In March of this year she had a bad bout with CHF and I was told that she could no longer be left alone. I had to place her in a nursing home - I am her only family and I work full-time. I don't totally trust the nursing home and I visit every day.
     She has been hospitalized 3 times in the last 12 months for CHF plus had a mild bout with CHF in the nursing home last month. She goes to an internist (the same one for the past 20 years). She takes ACE inhibitors, diuretics, and a digoxin patch. Is it time for Hospice? I want her to have the best care possible and I don't want her to suffer anymore. The nursing home has stated that she is not eating as well as she was when she first came, however her weight has gone from 112 to 128 since admission to the nursing home.
     She has had to be placed on oxygen 3 times in the last 3 weeks and the swelling in her upper legs this past Friday was the worst I have ever seen. She never complains about pain anywhere! I just don't know what to expect next. If you or any of your readers can help me, I would greatly appreciate it! Even if you need to tell me that the end is near! Thanks, Carole. ckennedy@appliedtm.com


Jon's August 19 reply to Carole's August 19, 2002 - Hi Carole, I hope others reply also. Often elderly CHFers are not treated as aggressively as younger ones. This causes them to suffer needlessly. In fact, aggressive drug treatment for CHF often (not always) greatly reduces symptoms as well as extending life - it's not like the "heroic measures" people often worry about when they have something like cancer. My questions to you are:

  1. Do you know the doses of each drug and the brand names?
  2. Do you know why she is not on a beta-blocker?
  3. Do you know if she takes her diuretic more than once a day?
  4. Do you know if she is on 2 separate diuretics (like Lasix plus zaroxolyn)?
  5. Do you know if she has ever taken inotropic drugs like Primacor, Milrinone, or dobutamine?

These answers would go a long way toward showing if her treatment is proper, or at least the answers would tell you what questions to ask her doctor. Be sure to read the official treatment guidelines to see how she should be treated! Jon.


Kelly S' August 20 reply to Brenda's August 19, 2002 - Hi Brenda, My prayers go out to you and your family. You've all had such trying times. I'm hoping for an upturn of events for you, and for the return of good health for your brother in law. larkel@locl.net


Irene, August 21, 2002 - Hi, When is CHF determined to be end-stage? I am preparing to help care for my father and am getting conflicting information regarding aggressive treatment versus hospice care. mmorrow@industryinet.com


Jon's August 21 reply to Irene's August 21, 2002 - Hi Irene, End-stage occurs when standard treatments no longer relieve heart failure (symptoms) and death is expected to be the result of heart failure and its underlying disease(s). Options at that point include device therapy, inotropic drug therapy, or possibly surgery up to and including heart transplant.
     "Aggressive therapy" in heart failure really just means treating patients according to the official guidelines at target doses. Many doctors do not follow those guidelines (especially in the elderly) for reasons that hold no water at all, and thus deprive patients of symptom relief and longer life at the same time. One is not necessarily done at the expense of the other in heart failure.
     Following the links in this post will hopefully further expain it all, but feel free to ask, ask, ask. ;-) Jon.


Cathy, August 21, 2002 - Hi, My mom is 81 years old. She has always lived independently. She had a heart bypass 7 years ago. In the last year or so she has had no energy at all. Her blood pressure has been low during the day and high at night - as low as 80/40 and as high as 250 systolic. She has also had increasing chest pain and a numb arm. The last time she had the chest pain, we took her to the emergency room. They admitted her and did a heart cath but everything was open and clear - even the old bypasses.
     When she has chest pain, it does show up on an EKG. The heart doctor gave her pills for high blood pressure and sent her home. At home, her blood pressure remains very low, to the point she almost passes out. It does get in the high range late at night. If she takes the medicine, her pressure goes so low it is in the pass-out range. Her chest pains are getting worse so that if she does anything other than sit or lie down, she has them. They are not severe pain.
     If anyone has any ideas what this could be, I would be very grateful. Her doctor does not seem to know how to treat this. Thanks, Cathy. jworr@aol.com


Irene's August 21 reply to Carole's August 19, 2002 - Hi Carole, I am dealing with many of the same issues you mentioned, with my 81 year old father who has CHF, Parkinson's, and emphysema. In the last 3 months he has had repeated hospitalizations, and has only been out ot the hospital a few days here and there during the whole time. The plan was to bring him to live with us and now we are wondering about hospice and whether it would be helpful or appropriate.
     I can't get consensus from the doctors on treatment options or hospice appropriateness, although they agree his prognosis is very poor. In addition to fluid buildup, he has been having problems with tachycardia, bouts of low blood pressure, and various arrhythmias. He also has a 15% ejection fraction. I can't get clear answers from hospice over how they will treat the CHF and don't want him to be denied any treatment that might help him, but don't want him to suffer either. It would be nice to keep him at home and out of the hospital, and receive the hospice support, but I don't want him not to be treated, if appropriate. I don't know what to do next!
     Good luck to you, I'll let you know if I get any answers, and if anyone else out there has info or advice, I'm all ears! Thanks so much, Irene. mmorrow@industryinet.com


Carole T's August 21 reply to Jon's August 19, 2002 - Hi Jon, Thank you for your reply. When I go to the nursing home today I will get the list of what she is taking and the dosage and get back to you later this week. ckennedy@appliedtm.com


Myrtle C's August 21 reply to Carole's August 19, 2002 - Hi Carole, I have sent you an e-mail about our experience with my mother and end stage illness. I should have gotten Hospice in to help sooner and always encourage families to talk to Hospice now. They can help you deal with many things and provide comfort care supplies free. Also morphine, etc., is provided free. Nursing care is available 24/7 and is free.
     They most likely will remove her from most of the meds she is on and concentrate on keeping her pain and anxiety free, also provide diuretics, etc. The experience with mother's death was so much easier to bear with Hospice help. God bless you during this time. I was an only child too, and had to make the decisions. I knew she did not want to live without good quality of life. omie@axs4u.net


Abbe's August 21 reply to Carole's August 19, 2002 - Hi Carole, My name is Abbe and I have been reading this board because my husband was diagnosed 2 months ago with CHF and CM. Up until 4 years ago I took care of my father, who had class 4 CHF and had so many hospital admissions to try to get rid of excess fluid.
     The first action I would take is to change doctors, which will not be easy after 20 years. It took me a long time to convince my dad and when we did, he was very happy with his new doctor. Unfortunately, there wasn't anything to do. I would be curious about your mother's kidney function also. My dad had Type 2 diabetes that he poorly controlled, which did affect his kidney function although not terribly, but he did end up on dialysis at age 72 to try to decrease his CHF symptoms.
     Also, if your mom has been on O2 three times, why doesn't she need it every day at her nursing home? I would ask the doctors what her O2 saturation is on room air. Do you know your mom's lab work values, like sodium, potassium, creatinine, etc.? When was her last echocardiogram and what is her EF?
     I am so sorry that your mom is so ill. There isn't a day that goes by I don't miss my dad. It is not an easy time but know you get to be your mom advocate, and if a doctor gets upset with your questions or doesn't take the time to talk with you, then change doctors! I have 2 teenage boys that have special needs and I have spent years having to advocate for them in a system that is understaffed and underpayed. Medicine, at times, isn't much different.
     I thank God for my husband's internist, who spent time with me every day explaining and re-explaining patiently what was happening to my husband in the ICU and what to expect in the future. Even though the new internist for my dad could not do anything, he was so compassionate and caring to make sure my father was comfortable when he passed away. Again, this doctor would call me every day when my dad was in the hospital to let me know his status.
     My point is that good communication is key as well as skill and knowledge. I know it is hard but try to take time to "tend your own garden" too. I hope this info is helpful. Take care, Abbe. morses4@msn.com


Judy H's August 22 reply to Carole's August 19, 2002 - Hi Carole, This sounds like what my mother in law went through. Please investigate the amount of sodium in the food in the nursing home. Every time my mother in law would go to the hospital and get her CHF under control, within days of being back at the nursing home, she would be in trouble again.
     My husband (he's got DCM) and I were not primary caregivers for his mom and we were perceived as being too agressive when we asked questions about sodium intake, etc. Unfortunately, my mother in law passed away and we think she suffered needlessly. We also suggested Hospice to the primary caregiver and sadly, the caregiver was offended by the suggestion. In my mother in law's situation, she went from having her first CHF symptoms to her passing within a span of 7 months. I hope this helps. jmh@bright.com


Carole K's August 23 reply to Judy H's August 22, 2002 - Hi, Thank you all for your suggestions. Judy, I will check on that! I know that she has no added salt but I think they cook with it. Just to give all of you more background, my mother's first bout with CHF was 12 years ago and she remained stable until about 1 1/2 years ago. She never smoked or drank but she was overweight. She lost from 200lbs to 112lbs and has kept it off for 10 years. Twenty-four years ago she had a colostomy and bladder damage (caused from the colostomy surgery), which left her totally incontinent. She also has decreased kidney funtions. She never complains of pain, and is a very pleasant and happy person. Having somewhere to ask questions has been just a tremendous help to me. Thanks, Carole K. ckennedy@appliedtm.com


Kelly S, August 24, 2002 - Hi, I wanted to share this information and see if anyone has any insight about this: http://www.balanceyournutrition.com/metabolicsynd.htm. I orginally read an article in a national magazine, which perked my interest in this. larkel@locl.net


Myrtle C, August 24, 2002 - Hi, If you have questions about end-stage heart failure that is terminal, and your loved one needs 24/7 care, I will be grateful to share my experience with you about my mom's end-stage illness, of the last months of her life. This can be a time to be close and be a support in many ways. E-mail me if you like. omie@axs4u.net


Carole K's August 26 reply to Jon's August 19, 2002 - Hi Jon, Listed below are the meds and the dose that my mother is currently taking:

  1. Lanoxicap .5 mg Monday through Friday
  2. K-dur 10 mg Daily
  3. Diovan 160 mg Daily
  4. Zocor 40 mg Daily
  5. Cardizem CD 24 mg Daily
  6. Nitrodus 0.3 mg/hour patch to skin every morning and removed at bedtime
  7. Ferrous Sulfate 325 mg twice a day
  8. Megace 4 mg twice a day
  9. Coumadin 2 mg daily at 4:00 PM
  10. Acetaminophen 325 mg
  11. Lasix 40 mg every Monday, Wednesday, and Friday
  12. Lasix 20 mg every Sunday, Tuesday, Thursday, and Saturday

I hope you can give me some insight into all this. Thanks so much, Carole K. ckennedy@appliedtm.com


Tom Reidman, August 26, 2002 - Hi, A clinical trial for patients with mild to moderate CHF, class 2 to 3 with ejection fraction of 35% or less, is still recruiting patients for EECP. This involves aggressive drug therapy versus drug therapy plus 35 hours of EECP, an out-patient non-invasive treatment. The trial is being done at 24 treatment centers across the USA. EECP just received a FDA approval for treating CHF. Please see www.eecp.com for more information about EECP in general, or you can contact me directly about the study. best regards. thomasriedman@yahoo.com


Jon's August 26 reply to Carole K's August 26, 2002 - Hi Carole, Does your mom have pulmonary hypertension or diastolic heart failure? Usually, only CHFers with these problems take CCBs like Cardizem. Is the acetaminophen for something specific? Another concern would be the low Lasix dose since she has so many edema problems. It just seems that it should be higher since generally, 40mg is the minimum standard dose for a person with edema. The lack of a beta-blocker is probably due to the CCB being used but again, I don't know why they would give her a CCB, which can shorten life span and worsen symptoms in many CHFers instead of a beta-blocker. Sorry,Jon.


Vonda, August 27, 2002 - Delightful news! This past week, my Mom went out to eat with me and my family, and shopping. I have prayed for that day! For the past couple of weeks she has been cooking for us kids, who have been starving for her home-cooked meals since she has been so sick. Yesterday she attended church service with us. God has given us 2 wonderful weeks with our mother and I hope many more to come. Thank you all for your support, Vonda. jmgandme@aol.com


Carole K's August 27 reply to Jon's August 26, 2002 - Hi Jon, I was told that she has hypertensive cardiovasular disease. Is that the same thing? She was just increased to 40mg last week. She was on 20mg. I plan to call the doctor this morning because I don't think that it's working. Would a renal insuffiency have a play in the situation? Thanks, Carole K. ckennedy@appliedtm.com


Jon's August 27 reply to Carole K's August 27, 2002 - Hi Carol, Hypertensive disease means heart problems that result from chronic high blood pressure (hypertension). Although CCBs are used to lower blood pressure, it's not the right drug to use in heart failure patients (see the links in my last post) with high blood pressure and if used, it should always be amlodipine, period. This is established fact - not using CCBs is in the official treatment guidelines!
     Kidney disease can play a role in treatment. However, different diuretics affect different parts of the kidney so there are options. Also, inotropic drugs may be used to reduce edema if for some reason diuretics are not working. I don't see a high enough diuretic dose to even tell if they are going to work, though. Then again, I am not a doctor. Jon.


Kelly S' August 28 reply to Vonda's August 27, 2002 - Hi Vonda, This is great news! I am glad to hear your mom's doing better and hoping she continues to improve. larkel@locl.net


Ginny, August 28, 2002 - Hi, My husband received his heart transplant in 12/00. He was 31 at the time. He was a status 2 patient for a few months and all of a sudden, in late November was upgraded to a status one. He got his heart within 2 weeks of being status one. We were unprepared, to say the least.
     I still feel like I know very little and am just following the doctor's orders, or my husband is. Over the last 3 months my husband has had 4 rejection episodes and this really scares me. How normal is this? Am I going to lose him? I feel that if he is told that he needs another transplant that he would never do it again. He has already told me that he's not sure that all this was worth it. He still doesn't really feel too well that often. Will he ever work again? These are all things that we really worry about.
     He is such a young person and the meds are really harsh on him. I have tried to look for chat rooms on the web for this. I have only been able to find some that are at specific times, not 24/7. Sometimes when I need to talk, I need to talk right away. Most times I feel if it weren't for our 5 year old son, that he would've given up already.
     I feel like I am rambling. I just found your site today and spent some time looking around and I really like it. I am going to keep the info handy and come back and read up some more. Some days it is really hard to stay positive. My husband is going for a biopsy tomorrow morning. I pray it is a good one. ginnyrightmyer@msn.com


Carole K's August 29 reply to Jon's August 26, 2002 - Hi Jon, Mother's doctor has increased her Lasix to 80mg daily in an effort to bring her leg swelling down. She also is having the following performed today: echo, additional blood work, and a 24-hour collection test on her kidneys. He said that he thinks that the kidney is playing a part in the swelling and he won't know the extent until the test results are in. Does that sound logical? Thanks for you insight, Carole K. ckennedy@appliedtm.com


Jon's August 29 reply to Carole K's August 29, 2002 - Hi Carole, I am not a doctor and this is sort of vague. Kidneys play a part in all swelling like this. The question is, is it because of weakened kidney function or from not-aggressive-enough heart failure treatment, or both? Is her doc a CHF specialist? A cardiologist? Internist? MD?
     I don't think I can really comment further with the info I have. I can only suggest that you read, read, read. This is the only way you'll be abe to really ferret out whether her treatment is appropriate because you are the only one on the scene, so to speak. Then sit down with her and her doc, and have him explain - in detail - exactly what he thinks is going on and what he plans to do about it. Frankly, if he is not a CHF specialist, I'd get her to one as soon as possible, if at all possible. Jon.


Michelle, August 30, 2002 - Hi, This is my first time writing but I read the posts when I can. I am so thankful to Jon for creating this web site. Every time a new problem arises or different treatments are talked about, I come and learn more so I can ask my husband's cardiologist intelligent questions.
     My 39 year old husband was diagnosed with CHF in December. He's a bigger guy and had gained a lot of weight in a short amount of time. After being put on his diurectic he lost 60 lbs in a few weeks. He felt so great and I thought things were only going to get better. Unfortunately I was very wrong. He used to be an over-the-road truck driver and had to quit. I was a stay-at-home mom and went back to work.
     His condition has steadily worsened. He has an EF of 20% and had an ICD put in. He's borderline class 3 to 4. He has been in the hospital twice and in the emergency room 4 times since he was diagnosed. He's not able to do much and tires very easily, and he gets out of breath just rolling over in bed. It is really wearing going to doctors' appointments and the hospital, and having him not feel good every single day, and worrying about not having another day with him and him not seeing our little 2 year old girl grow up and graduate and get married and everything else he would miss.
     I'm tired of wondering how long he will live and wondering when the next blow will come. I can't let my guard down anymore. Something happens and I get upset for a few days and life goes back to "normal" and then something else happens. Sometimes it just feels like it will never end.
     Anyway, I know I've been really long-winded but I just wanted to see if other people going through this ever feel the same way. We have some great friends that are there to listen but can't really understand what it's like to live with this day in and day out. Thanks, Michelle. Michelle.McClintock@thedacare.org


Derald's August 31 reply to Cathy's August 21, 2002 - Hi Cathy, I don't know what to tell you except that maybe you need to see a different doctor about a second opinion. Talk to her doctor about staggering her medicines, sometimes that helps keeping blood pressure from going too low. I am 45 with a pretty good EF, but if I take enalapril and Coreg at the same time I can go to the 80/40 range too. The chest pains could be part of an panic/anxiety disorder. I had them badly until I started on Coreg and then they got much better - but don't take chances. deraldg@earthlink.net


Kelly S' August 31 reply to Ginny's August 28, 2002 - Hi, It sounds like you've both been through a lot in the past couple of years. My husband was also very young when diagnosed with CHF and yes, it's very scary. Finding this board has been helpful. The information and support are great. If there isn't anyone to talk to, come here and post. At least it's a great way to vent. My prayers go out to your entire family and my thoughts will be with you. Feel free to e-mail me directly if you'd like. larkel@locl.net


Kelly S' August 31 reply to Michelle's August 30, 2002 - Hi, My husband was 32 when he was diagnosed and then 2 years ago he was diagnosed with diabetes also. When he was orginally diagnosed he couldn't walk from our living room to our bedroom without being out of breath - it's pretty scary. Since he's been on the meds, he's able to do more, but has up and down days.
     Does your husband have a CHF specialist or a regular cardiologist? If they're not a CHF specialist, try to find one in your area. This can make a huge difference. Best of luck to you and keep us posted. My prayers go out to you. larkel@locl.net


Kelly S, August 31, 2002 - Hi, Happy Labor Day weekend. Just a quick thought: Change. This has been the hardest thing for my husband to conquer while facing his illnesses, change in diet, exercise and lifestyle. I truly believe that an illness such as CHF is a sign that changes are necessary to continue living a productive and healthy life. Age ranges here vary greatly. Maybe sharing how we've all coped with these changes would be helpful. I know before his illness we ate a lot of fast food (high in sodium). We've cut this out and this has helped tremendously, even for me it's been good.
     Well, hoping to get some responses and hoping everyone has a great holiday weekend. larkel@locl.net


Sandy's August 31 reply to Michelle's August 30, 2002 - Hi, You are not alone, Michelle! I think we all feel this way. I would like to suggest a book entitled "Heartmates" by Rhoda F. Levin. I got mine on www.half.com. In the beginning it talks about "when" her old life ended and her new life began. That is how I feel. There will never be an "old" normal life anymore, the old life is gone, you are embarking on a "new life."
     This journey through CHF is a difficult one. Thanks to Jon, we have a place we can hold each other's hands and make the journey together. My new life began March 25th, 2002 at 9:30 AM. I still miss my old life but I thank God that I still have my hubby! ;-) Sandy. sandy4014@aol.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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