The paperwork never ends The Archives
Loved Ones - November, 2000 Archive Index CHFpatients.com

Barb L S' 11 -1 reply to Claudia P's 10-10     getting the right doctor
 
Larry 11-1     swallowing, eating problems
 
Donna 11-2     end of life questions
 
Robin S 11-2     indwelling/central line/catheter & infusion questions
 
Robin S 11-2     milrinone & dobutamine questions
 
Dina Rice's 11-2 reply to Ben B's 10-30     and to Davida S
 
Davida S' 11-2 reply to Larry's 11-1     GERD as a possibility
 
Cheryl Thorne 11-3     weight gain questions
 
Jon's 11-3 reply to Cheryl Thorne's 11-3     weight gain
 
Davida S' 11-3 reply to Dina Rice's 11-2     weight gain, transplant listing & more
 
Jon's 11-3 reply to Davida S' 11-3     transplant listing
 
Mary A 11-3     seek CHF doc near Evansville, Indiana
 
Jon's 11-3 reply to Mary A's 11-3     Medicare/Medicaid question
 
Ben B's 11-3 reply to Jon's 11-3     transplant criteria
 
Davida S' 11-4 reply to Mary A's 11-3     finding financial-medical alternatives
 
Karen P 11-4     seek help with health insurer's policy regarding Medicare
 
Kim T 11-4     seeking low sodium recipes
 
Barb L S 11-4     EF, tests & more
 
Barb L S's 11-4 reply to Robin S' 11-2     EF, tests & more
 
Barb L S 11-4     correction-addition
 
Jon's 11-4 reply to Barb L S' 11-4     comments on correction-addition
 
Jon's 11-6 reply to Karen P's 11-4     things to check into
 
Jane's 11-6 reply to Karen P's 10-18     Vioxx can cause fluid retention big time
 
Sheila 11-6     mom's swelling - questions about controlling this
 
Jon's 11-6 reply to Sheila's 11-6     some questions with which to start
 
Todd 11-8     can anything help my dad?
 
Cathy 11-8     seek prayers & cards for my son, just diagnosed
 
Bill D's 11-8 reply to Todd's 11-8     how I feel vs numbers & more
 
Todd's 11-9 reply to Bill D's 11-8     he is now on dobutamine - what to think?
 
Vikki 11-10     how can I get my mom to eat?
 
Linda 11-11      MEDICARE RULES CHANGE WARNING!
 
Frank S' 11-11 reply to Vikki's 11-10      she needs some help now!
 
Bill D's 11-11 reply to Vikki's 11-10      let's look at her meds
 
Lydia S 11-13      questions about my son's meds & more
 
Jon's 11-13 reply to Lydia S' 11-13      wasting, Lasix, hope others reply too
 
Peggy 11-13      seeking info about CHF
 
Jon's 11-13 reply to Peggy's 11-13      some CHF info
 
Zaundra 11-13      dad just got CHF
 
Todd 11-14      seek info on cell transplant therapy
 
Jons' 11-14 reply to Todd's 11-14      cell transplant therapy
 
Tom B's 11-14 reply to Peggy's 11-13      coping, hope for the future & more
 
Michael 11-14      seeking info about Enbrel for CHF
 
Jon's 11-14 reply to Michael's 11-14      Enbrel for CHF
 
Floraine K 11-15      L-carnitine questions
 
Jon's 11-15 reply to Floraine K's 11-15      L-carnitine info
 
Todd's 11-15 reply to Jon's 11-14      dad is getting worse
 
Jon's 11-15 reply to Todd's 11-15      a couple of questions
 
Jon 11-15      my chat room
 
Anna M's 11-5 reply to Floraine K's 11-15      L-carnitine experience & info
 
Robert's 11-16 reply to Jon's 11-15      L-carnitine & Myovive for CHF
 
Charlie Z 11-18      thanks for this site & more
 
Roxanne 11-20      update & more
 
Jon's 11-20 reply to Roxanne's 11-20      test info and a question
 
Mary Lou L's 11-20 reply to Charlie Z's 11-18      my condolences
 
Sherry 11-22      update on me & my mom, happy holidays
 
Kathryn 11-22      update on my son - good news!
 
Jeanette's 11-23 reply to Kathryn's 11-22      excellent news!
 
Paula 11-23      small child with CHF - questions
 
Jon's 11-23 reply to Paula's 11-23      I honestly don't know - hope others post
 
Todd's 11-24 reply to Jon's 11-15      more about dad
 
Jon's 11-24 reply to Todd's 11-24      few options; maybe,...
 
Jim 11-24      kidney failure & CHF - questions
 
Karen's 11-25 reply to Jim's 11-24      kidney failure & CHF experience
 
Paula 11-25      prayer request for Barb
 
Jim 11-27      CHF and exercise question
 
Jon's 11-27 reply to Jim's 11-27      CHF and exercise
 
Katie 11-27      my husband Dennis died - advice
 
Mary T 11-28      intro, questions, & more
 
Jon's 11-28 reply to Mary T's 11-28      a start, I hope others also reply
 
Debbie 11-28      questions about mom's fatigue, good/bad days & more
 
Mickey 11-28      finding dates despite CHF
 
Kim 11-29      saw new procedure on news
 
Mary T 11-29      more on my husband
 
Carol 11-29      looking for info on CHF & more
 
Barbara B 11-29      I don't understand all this, seek help
 
Davida S' 11-30 reply to Cathy's 11-8      wishing your son well
 
Debbie 11-30      how to get my brother to see a doctor
 
Jon's 11-30 reply to Debbie's 11-30      brothers and doctors


Barb L S' November 1 reply to Claudia P's October 10, 2000 - Hello Claudia, I just had to write even though you've gotten the greatest advice from so many people already. After I got pregnant in 1997 I felt great. Within 6 weeks I got sick, but doctors told me I had bronchitis and to stop complaining so that's what I did. I said I'm really putting too much concern into this and I am probably just anxious because I'm pregnant. I couldn't apply any pressure to my feet (edema) and even though my fiance Herb carried me, he never confronted the doctors. Anyway, 2½ weeks after Alex was born I couldn't breathe without gasping. To this day I can't pick him up on my own. My PCP was the doctor who saved me. This happened after 8 months of pregnancy and both of us almost losing our lives. He diagnosed it within minutes of my going for an office visit. However, knowing that he was not a professional in that area, he sent me to the hospital to meet with a cardiologist. I thought this guy was great but he wasn't. I ended up going to Temple because someone else we knew and respected had a transplant there. All the cardiologists talked about was transplant. I had an EF of 10% and supposedly was not walking out of their hospital without a transplant. Not only did my EF eventually go back up to 20% in 1998-1999 but my last echo in July showed that it had gone up to 47%. Before the change to Mt. Sinai I did have an CHF specialist at Columbia. We learned that if we weren't getting answers or if we were scared for any reason, we actually had the right to fire them. That credit goes to Jon. This place was the first place that said, "Hey, you don't need him. Get someone else." It's scary because we all literally look to our CHF specialists to save our lives. We finally fired my local cardiologist. We left Columbia for other reasons. I would recommend my new hospital and my doctor to anyone. Please take care and God bless, Barb. Alikeys@hotmail.com


Larry, November 1, 2000 - Hi, My 91 year old dad with CHF is unable to swallow food when he gets tense. He spits up clear mucus (one cup full over 10 minutes). He seems to be burping it up. What can we do? Larry. larryandkathy@yahoo.com


Donna, November 2, 2000 - Hi, My mother is a high-end class 3 CHFer, 79 years old, and has had a pacemaker for about 5 years. How does the end come? She is unable to stay awake today. She went to sleep at 8:00 PM last night and slept till 3:00 AM, was awake for one hour and then slept from 4:00 AM till 10: AM. She went back to sleep at 2:00 PM and slept 3 more hours, then went back to bed at 8:00 PM. That's about 16 hours out of 24. She was terribly weak and sleepy while awake. How will her heart be able to stop with a pacemaker? Thanks for any ideas. westwing17@hotmail.com


Robin S, November 2, 2000 - Hi, Is anyone familiar with the different types of IVs that can be placed in your chest for dobutamine infusions? What are the pros and cons of using a central line and are ones better than others? My mom has a 10% ejection fraction and is just beginning dobutamine infusions only to help her feel better according to her doctor; not to increase life expectancy. RNStreaty@aol.com


Robin S, November 2, 2000 - Hi, I find it interesting that most people mention they are on milrinone rather than dobutamine. What is the difference and is dobutamine the least preferable? I would love to hear from anyone who has a loved one on either one of these drugs? Is it helping? Thanks. RNStreaty@aol.com


Dina Rice's November 2 reply to Ben B's October 30, 2000 - Hi Ben, It has been a long time. John's estimated EF 7 months ago was getting toward 50%. The doctor didn't do any tests on him when he went last week. I thought that was a little strange because I thought they were supposed to test every 6 months. John has had a really bad day today and hasn't been out of bed since 9:00 AM. He had to leave our daughter's awards assembly due to lightheadness and dizziness. He is really feeling awful and his mood is even worse but that is understandable and I try not to make him mad.
     Davida, I am going to ask the doctors about what you said. I never thought of it that way. You know they never tell you how the transplant stuff is supposed to be done. You want to be proactive, not reactive. They do think that there will come a day when the medicine won't cut it for him anymore. They have remarked to us that it will likely take 2 years to find a heart to match his body but what sense does that make when they won't consider you for the list until you are so bad as to possibly have only 6 months to live? I still haven't figured that out. All I know is that this heart stuff never gets out of your mind. All you do is worry, even on the "good" days. I know that all of you reading this know exactly what I'm saying. No matter how you try to ignore it, it is always with you. riced@hsmail.k12.ar.us


Davida S' November 2 reply to Larry's November 1, 2000 - Hi Larry, Could this be GERD or acid reflux, I think they call it. My husband Dan used to have this prior to his CHF. The food sort of backs up a little versus going down and it encourages burping. I have seen Dan also spit up clear fluid when it was at its peak. The GERD may be encouraging the tensing up also, because it makes you feel uncomfortable in the stomach and chest. A drug called Prilosec was very helpful. Also TUMS helped somewhat. Make a phone call to his doctor for peace of mind and proper instructions on the best recommended treatment for your dad. cavalier_1@msn.com


Cheryl Thorne, November 3, 2000 - Hi, I haven't posted in awhile because Jim has been doing so well. Now I have another question. Since October 1, Jim has gained 8lbs. It looks to all be in his abdomen, where he always gains fluid. He won't admit to being short of breath and he can still lie down and sleep, and he isn't coughing. I can't get him to go to the doctor because he says he feels fine. He thinks he's just gained weight from sitting around the house too much. In the past, he would've been coughing many added pounds ago. What do you all think? He had his aortic heart valve replaced in 8/2000 after being diagnosed with CHF in 2/2000. His EF was up to 40% in September. cheryl1cng@aol.com


Jon's November 3 reply to Cheryl Thorne's November 3, 2000 - Hi Cheryl, If it took 4 weeks for him to gain 8 pounds, he may be right - he's getting fat. Jon.


Davida S' November 3 reply to Dina Rice's November 2, 2000 - Hi Dina, You are right about what the requirements are to be listed on the transplant list. John's EF may be too high. My understanding is that anything under 30% EF makes you a candidate. Dan at about 20% EF when listed. He had to be requalified when we switched to my insurance company. His EF was 35% and the transplant financial coordinator at the hospital simply said, "We won't submit these last results" for fear of denial from the insurance company. Check with your doctor and if you ever notice John's weight going up or shortness of breath on the visit to the doctor ask for another echo to see if his EF has changed. Dan weighs himself everyday faithfully. For now, I doubt they will consider John a candidate with an EF near normal and prayerfully, he will never be a candidate. Dan's dizziness and lightheadness came from too much Lasix and the Coreg. That's something to consider and don't make John mad. I have horror stories from making Dan mad, including 2 trips to the emergency room. I felt like such a smuck and embarrassed as I explained we were having an argument and he got stressed. Keep up the good work as caregiver and wife, and I will keep you both in my prayers. cavalier_1@msn.com


Jon's November 3 reply to Davida S' November 3, 2000 - Hi Davida and Dina, Just a comment on transplant "requirements." This is tricky territory because they vary from transplant program to program (medical center to medical center). <Vo2max is considered a more important indicator of need for a donor heart than is EF, generally speaking. The only really firm indicator for transplant listing of which I am aware is a Vo2max (also called mVo2) of 13.5% or less. Other than that, this is a decision based largely on each individual doctor's perception of a given patient's condition on the days evaluated and whether he is a "suitable" candidate in other respects. Jon.


Mary A, November 3, 2000 - Hi, I would like to find a cardiologist or CHF specialist for my sister. We live in Evansville, Indiana and her last cardiologist reported that she had an EF of 40% and a tricuspid defect, but because she had no insurance he told her she was fine and dismissed her. He has since left his practice in Indiana and moved to another state. She is exhausted all the time and occasionally it is to the point of not letting her get off the couch. She found your site and has noticed that most of her symptoms have been talked about but to find a competent doc seems not to be in her future. She keeps talking about not thinking she's going to live much longer and all I want to do is find someone who will look at her professionally and make her better. She is 34 and she used to make me tired watching how active she was. She can't get Medicaid because she hasn't worked more than a couple of months her entire life and no doctor will actually find out what's wrong with her because of the insurance issue. Is there anyone who lives close that can give us the name of a doc they trust? Her hubby got a job that includes insurance but he still has 2 months to go before the insurance takes effect. Thank you. ayers@dynasty.net


Jon's November 3 reply to Mary A's November 3, 2000 - Hi Mary, Have you contacted Medicaid about her eligibility? As far as I know - although it varies from state to state - eligibility can be disconnected from work history for certain disabled adults and other specific groups. Jon.


Ben B's November 3 reply to Jon's November 3, 2000 - Hi, I wanted to point out that as in most things there may be a significant difference between criteria for listing on the transplant list, and criteria for what the insurance company will pay for. From what I have read, a Vo2 max of less than 11 to 13 (depending on program) will generally qualify one for a transplant listing assuming that improvement does not seem possible. At the same time I have read several insurance company requirements, including Blue Cross, all of which require an EF of less than 35% to pay for it. Additionally, I have read a study where doctors are questioning the efficacy of Vo2 testing because it is peak Vo2 they measure, and people may drop out of the exercise for various reasons before they have actually reached their peak. Despite the drawbacks in EF testing, I know this is how my heart failure diagnosis was made- an enlarged heart on x-ray, and a low EF on echo. If my doctors hadn't seen this they might never have diagnosed my illness, so there must be at least something to it. Like you say, it is a very complicated and tricky business deciding who gets a new heart. bdbrinkman@juno.com


Davida S' November 4 reply to Mary A's November 3, 2000 - Hi Mary, Call your local hospital and ask them about clinics which provide services for low income patients or patients without insurance. They usually charge based on a sliding-scale fee based on your income. I have lived in Tennessee, Virginia and Connecticut and each one of these locations had such clinics. In Connecticut, the clinic is in the hospital. Mind you, it could take a month to get an appointment but it is well worth it. They also provide meds at reduced rates. With her husband working, she will have to pay something, but it won't be outrageous. cavalier_1@msn.com


Karen P, November 4, 2000 - Hi, My husband has CHF and also kidney failure. He is 60 years old and retired due to illness 1½ years ago from the college. He is on a 5-year early retirement plan and through that we have medical insurance. He has just begun peritoneal dialysis and this insurance does not cover all its costs. We have been advised to apply for Medicare since it is available to anyone with end stage renal failure. Suddenly, we were told by the college that their policy regarding retirees (not active employees) is that if he goes on Medicare, they will no longer offer him medical insurance, which happens to be Blue Cross. They did say that it is also the policy of Blue Cross but so far I have only been able to confirm that it is a policy of the college. They have already let 3 people off their insurance because they got onto Medicare because of disability prior to age 65, so it appears they have set a precedent and I am not aware of anyone challenging them on it.
     Actually, we have had other insurance through the college and this Blue Cross coverage is a change the college made that will go into effect on January 1 so we had to fill out application forms for the new insurance company and I wrote that we were in the process of applying for Medicare. That is how this all came to light. Does anyone know if there is any way around this? Thanks. PhillipsK00@cs.com


Kim T, November 4, 2000 - Hi, My father in law was recently diagnosed with CHF a few weeks ago. I am trying to put together a recipe book for him and my mother in law with heart healthy main dishes, side dishes, desserts, and maybe flavorings to replace salt for him. If anyone has any ideas or good recipes, please e-mail me them. Also, if you can give me the salt, calorie, and fat counts for them, I would really appreciate it. Right now, my father in law gets sick if my mother in law even cooks chicken, so I have been preparing things and taking them over. I was thinking of making a recipe book for them as a Christmas gift. Thanks for your help, Kim T. datkbt@prodigy.net


Barb L S, November 4, 2000 - Hi all, Dina, you are absolutely right. My family feels like you do and it doesn't matter if my EF number is up or down. It's what they see, with me and my ability to do things at any given time. Because of Herb's love for me I have been a guinea pig from day one. After dancing around with regular PCPs and cardiologists he set his whole life on trying to get me better. I say the word trying intentionally. I had spent my first year literally living at Temple University Hospital, with <Vo2max, swan caths and echos. Next he took me to Columbia-Presbyterian Hospital in New York. Dr. Mancini determined how and when heart transplant would take place, also with lots of tests. I go to Mt. Sinai now. Within 1½ years I had also been admitted to Aleghenny Hospital, where they proceeded to give me codeine for my cough, changed my 40mg Vasotec to 0.5mg and changed my digoxin down to 0.25mg. I had been on 0.375mg per day. The head doctor said I was getting better so I received no treatment. I called Herb and told him to pick me up as fast as he could. My heart rate was 150 at rest. At Mt. Sinai one person from the transplant team looked at me as if I were from another country when I enquired about Vo2max. They don't do that there until after you have become a candidate. What Dr. Gass goes by is the echo and Swan-Ganz cath. Of course my EF going up to 47 was very encouraging but not something they go by. He never would have sat down and told me that I needed a CHF specialist if my EF mattered that much. After all it had improved greatly. At Temple my Vo2max had been 17%. One year later it was 16 and then at Columbia, 15%. So I agree with everyone.
     I just keep going and my family skips along to my rhythm. I will keep you and Davida in my prayers. Take care. You've heard it a zillion times but please take it one day at a time or one hour at a time; if necessary, one minute at a time. This disease literally can change for the worse or the better from minute to minute. I would send anyone to Mt. Sinai to Dr. Gass. We are now at peace with just the one doc. God Bless, Barb. Alikeys@hotmail.com


Barb L S' November 4 reply to Robin S' November 2, 2000 - Hi Robin, I'm sorry I couldn't help with my e-mail but my monitor has gone wacky. There are meds pagees here filled with valuable information. My personal story of dobutamine and milirone are that at Temple there are lots of cardiologists and I'm sure each one has his own opinion. For me, they stuck with dobutamine and the same with Columbia. There was no improvement except for the time I was actually on it.
     Dr. Gass chooses milrinone. I wish I could be more helpful different doctors at different hospitals have different views. I'm sure that my CHF specialist knows why he is prescribing it and milirone made me feel great but the side effects are extremely dangerous, especially when used on a continual basis. I heard that people can be on dobutamine for a year or two so I called my doctor and asked him about it. He said it would kill someone way before the two year limit. That was his professional opinion for me. That doesn't make it true for others. All doctors, treatments and even how procedures are done vary so, so much and people are all different. Jon would know better because he does all the research. I would encourage anyone to write me anytime. I love hearing from you guys but I hesitate to talk about medical treatment except here. I did in the past and I confused everyone so I stopped. Check and see with your mom's doctor if he chooses dobutamine because of her diabetes. I'm not diabetic. I also cannot take Coreg no matter how much it's helping the rest of the universe. I can't take aspirin because I'm allergic.
     Well, I hope this helps a little. For anyone else who has these questions please come here and utilize this valuable information. I am only following my doctor's orders and I leave the big decisions up to him. Everyone please take care and God bless, Barb. Alikeys@hotmail.com


Barb L S, November 4, 2000 - Hi all, I decided to take my own advice and go to the inotropic CHF meds page. The way I remembered that tricky phrase was I no (go to) tropic (island). Word association helps me so much with my memory. I put something valuable to me in reference to a letter or number.
     A correction on my 11-4 post. I had a MUGA scan and my EF baseline or Vo2max is still 15. Just by going to inotropic meds for chf I found this and remembered. God bless, Barb. Alikeys@hotmail.com


Jon's November 4 reply to Barb L S' November 4, 2000 - Hi, Just so readers do not get confused from your last post - EF (as taken by echo, MUGA or cath) and Vo2max are different tests measuring completely different bodily functions. The CHF tests page explains each one. "Baseline" means the measurements taken of some function before a treatment begins. It's a "reference" to compare treatment results to down the line so you can see how much you improved (or not). Jon.


Jon's November 6 reply to Karen P's November 4, 2000 - Hi Karen, The person I asked about this said, "If they happen to have this insurance from belonging to a union, they should contact their union rep. If it's written into the policy, which is a contract between the insurance and the policyholder, my guess is there's nothing they can do about it. It might be worth having an attorney read the policy/contract. Also, contact the state Insurance Commissioner and contact Medicare to see if that's legal." Jon.


Jane, November 6 reply to Karen P's October 18, 2000 - Hi, My mother has suffered from both heart problems and arthritis for 20 years. Recently, her doctor gave her samples of Vioxx to try. Several days after trying it, she ended up in the hospital with what the doctor deemed CHF. They eliminated over 10 pounds of water from her using intravenous diuretics. Apparently Vioxx can be a dangerous drug for people with heart problems. jkdeguglielmo@nextime.com


Sheila, November 6, 2000 - Hi, My 74 year old mother has CHF. She is in a lot of discomfort due to retaining fluid in her abdomen and legs. About a month ago she was drained of 3 liters in her gut. Her doctor (not a CHF specialist) is trying his best to help her. He says it's a fine line between too much fluid and not enough. My mom spent 10 days in the hospital because her blood pressure was so low that she was going into renal failure. They had her on dopamine and had a hard time getting her off. Now after 2 weeks out of the hospital she is again swelling up and wants to be drained again. Her doctor doesn't want to do it so soon. She is in a skilled nursing home where she is getting a salt restrictive diet. I have been trying to get her to drink at least 2 liters of fulid a day, but she doesn't want to because her gut is so uncomfortable. She was slightly dehydrated on her last blood test. She does take Lasix once a day, plus about 4 other heart medications. Does anyone else have the need to be drained often? What are the bad side effects besides the risk of infection? Any advice would be helpful. guidawood@infomagic.com


Jon's November 6 reply to Sheila's November 6, 2000 - Hi Sheila, This constant edema is usually caused by one or more of the following, with questions to ask her doc and the nursing home director:

  1. Too much salt in the diet. Is she getting snacks, drinks or "extras" in addition to her regular diet that are loaded with sodium? What is the actual daily sodium intake at this nursing home for a salt restricted diet? And is she actually getting this diet, as opposed to just being listed to get it? As a very young man, I was once an orderly in a nursing home and I know that mixups happen easily.
  2. Inadequate medical management of her heart failure. Is her ACE inhibitor dose high enough to take sufficient load off her heart? Does her Lasix dose need to be increased (and her potassium)? Does she need zaroxolyn every other day in addition to Lasix? Should she be moved to Demadex or Bumex for stronger diuretic effect? Would Lanoxin increase her heart's pumping strength? Would adding Aldactone help her keep the fluid off?
  3. If her swelling is mainly in her abdomen, it will slow down the absorption of her oral diuretics and lower their effectiveness. These drugs are absorbed through the stomach lining and lots of extra fluid there seriously hinders their diuretic effect. She may need regular IV diuretics to overcome this.
  4. If she is in end-stage heart failure - meaning that her CHF cannot be entirely controlled with meds - perhaps she should be on intermittent infusions of a better inotrope than dopamine, such as milrinone or dobtamine.

It ain't much to go on, but I hope it helps. Please get back to us about your mom. Jon.


Todd, November 8, 2000 - Hello, My dad recently returned from Mayo for a checkup on his CHF. His EF went down from 20 to 7% from last year and his heart got larger from 73 to 88. They told us to get our papers in order, which has really scared my family. They did not have an explanation for his downturn but we do know that this disease is progressive. They recommended him for a trial for an LVAD and also to go on dobutamine. Is there anything else I should be looking for to try? He is still walking and playing golf but is naturally very tired most of the time. Can his EF possibly go up with a change in meds? Any chance to slow the progression? Any advice would help. Thank you for this site, Jon. Todd. tkoenig@adsionline.com


Cathy, November 8, 2000 - Hi, I am requesting prayers for my son, who has just been told he has CHF. This came as a complete shock to us all. His is caused by high blood pressure. It just seems to keep getting worse for him each day. He is class 3 and on meds after his heart cath. I have had CHF since 3/98 and this has really upset me. My other children are being checked to be sure they are ok. I have been told that mine was of unknown causes. Greg has been out of work and working to get help with an anxiety problem. He had hoped to go to work but now he is being told no way for awhile. So he is home with the usual meds plus being treated for depression.
     Today he called, and his truck would not start. Here he is broke and it just keeps happening. He is 39 years old and is really trying to adjust to it all. Those of us who read this know how that is. I would appreciate prayers and cards to Greg. I am not sure how to do this but I know it would help. He does not have a computer, which is too bad but I will get him on mine when troubles slow down. His address is:
Greg
231 High Street
Lot 10
Farmington, Maine 04938
     I am trying to run a benefit to get him over the hump until Social Security gets going. Thanks for being here, Cathy. cpalmer@megalink.net


Bill D's November 8 reply to Todd's November 8, 2000 - Hi Todd, My EF is 36 but I can't play golf or walk far. I suppose the problem is that my heart's 3 times as large as the average bear's. My measurement was 164 as determined by a stress test. If I was able to walk and play golf, I wouldn't be thinking about an LVAD or going on dobutamine. I'd let "how I feel" be the judge, Bill D. billdog@gate.net


Todd's November 9 reply to Bill D's November 8, 2000 - Hi Bill, Thank you for your response. I learned this morning that my dad's cardiologist is putting him on IV dobutamine twice a week starting tomorrow. They must think that his heart function has gotten so bad that this is required. I don't know what to think at this point. Thank you again, Todd. tkoenig@adsionline.com


Vikki, November 10, 2000 - Hi, My mother is 72 years old and was diagnosed with CHF. She has a cardiologist but with her having Medicare, she doesn't get proper care. She has to take all these medicines and her eating habits are terrible. She has no appetite. Food makes her sick: the smell, the sight, sometimes the thought. She takes digoxin and her doctor told her to stop taking it to see if it would make her eat. She stopped taking it and started to have trouble breathing, so she started the med again but she still can't eat anything.
     I need some help. I can't get her doctor to call me back and he's only in one day a week. I've switched her doctors but they can't see her until December 28. She will not go to the hospital and I'm worried that she's just going to waste away. She also has diabetes, high blood pressure and high cholesterol. Somebody please help me to help my mom! d_vikki@hotmail.com


Linda, November 11, 2000 - This is from Jon's wife Linda, who is in charge of all patient accounts at a large metropolitan hospital
     Effective 8/1/00, Medicare has new guidelines for paying outpatient hospital services. One benefit to patients is that the "coinsurance" or amount due from the patient is now based on the fee paid to the hospital instead of based on total charges. For most services, this means that "copay" amount is less now. (However, in some cases, that "copay" may be more than it was in the past).
     Medicare patients should beware of the list of procedures that Medicare now considers to be Inpatient Only Procedures. If you have one of these procedures in a hospital, your doctor must order you to be admitted as an inpatient for Medicare to pay the service. If the doctor orders the visit as an outpatient visit, Medicare will not pay! At this time, Medicare requires hospitals to bill the patient for those services.
     The hospitals are not required to notify the patient prior to the service/procedure that the procedure must be done as an inpatient to be covered. As much as my hospital for example, would like to do so, the list of procedures is so long and cumbersome that we have not figured out a way to know if the patient is having one of these procedures. Admitting clerks, generally, are not medically educated or skilled enough to deal with this problem.
     At my hospital (and most hospitals nationwide, we are told), the most common "Inpatient Only Procedure" to be provided as an outpatient in error is "Overnight Oximetry." This procedure is often done during sleep studies. Late yesterday, one of my managers told me we've had an Inpatient Only Procedure denial on a $37,000 outpatient visit. We haven't had time to investigate that case but I pray it won't be something for which we have to bill the patient!
     Getting down to the bottom line, my advice is: If you are going to have an outpatient hospital service, ask your physician to make sure that nothing he orders for that visit will be considered an "Inpatient Only Procedure." If he doesn't know what you're referring to, ask him to call the Medical Education department or the Medical Staff office at the hospital where he practices for more information. Tell him you will have to pay for the procedure if he makes a mistake in admitting you as an outpatient!
     Another thing to remember is that if a physician orders your visit to be an "observation" visit, that is considered to be an outpatient visit by Medicare. So even though you may stay overnight in a hospital bed, if you have one of these procedures it will not be covered because you are considered to be an outpatient. At our hospital, we are trying very hard to find out if we are required absolutely by law to hold the patient responsible for these denials. Not all hospitals will be as diligent in doing so, and they have every right to bill you even though Medicare has not notified you in writing about this payment change.
     I would encourage you to write your US Senators and Representatives about this unfair development in Medicare regulations. It's unfair to you and it's unfair to the hospitals, too. Please feel free to e-mail me with questions. Linda linda@jonsplace.org
 
Jon's note: My 2000 Medicare Rules Manual did NOT include this information! Linda knows her stuff; this is fact but many doctors will not be aware of this. Watch out!


Frank S' November 11 reply to Vikki's November 10, 2000 - Hi Vikki, I would be as distressed as you are, and I would take your mother to an emergency room now! These so-called doctors are outrageous, and their behavior is sometimes disgusting. Since she has a life threatening illness and cannot eat, she could be in serious trouble very quickly. She should not have to wait to be seen by another doctor until 12/28. Please do whatever it takes now in order to get your mom the professional help she, and you, deserve. Later, Frank S. marquasmith@lycos.com


Bill D's November 11 reply to Vikki's November 10, 2000 - Hi Vikki, If you'll list her meds and the doses, I'll look 'em up for side effects. Just maybe one of her meds might be the culprit. Tell us all the meds she's on, over the counter too. Bill D. billdog@gate.net


Lydia S, November 13, 2000 - Hello, My 59 year old dad was diagnosed with very class 3 CHF after his fourth heart attack 2 weeks ago. He's been home for about a week now. I have him on a salt restricted (2000-3000mg) diet and he drinks around 2 litres of fluids a day. He takes Lasix once a day to stop fluid build up. That definitely has not been a problem lately; he's lost 5 pounds since coming home after being stabilized at the hospital. I'm wondering if it is time to stop the Lasix. My guess is yes but neither my dad or I are sure. Also, is it possible that CHF can be a wasting disease like cancer? Thank you for this. It's a bit of a struggle and this message board helps, Lydia. lscratch@is2.dal.ca


Jon's November 13 reply to Lydia S' November 13, 2000 - Hi Lydia, I hope others post their ideas also. The Lasix issue is tricky and you should discuss this with his CHF specialist for sure. It may be that he should reduce the dose by 50% for a few weeks before considering stopping it. Be sure his electrolyte levels are monitored during the process and his slow release Rx potassium changed accordingly.
     CHF can be wasting - it's called cardiac cachexia and usually occurs with uncompensated CHF. Uncompensated CHF is when drugs can no longer control symptoms like shortness of breath, fatigue and edema. It is less common among people whose symptoms are controlled (compensated CHF). Jon.


Peggy, November 13, 2000 - Help! We would like some information on CHF. My husband was diagnosed on November1 with CHF, along with dilated cardiomyopy. I think they are the same thing. He has an ejection fraction of 30% and is on Coumadin, Demadex, Lanoxin, Zestril, Cardizem and Coreg.
     Right now they are trying to regulating his Coumadin so he can have a cardioversion on December 11. He is doing really well right now with no problems. It's like he hasn't had any problems at all with his heart. He went into the hospital thinking he was having a heart attack. They say they think its due to a viral infection, but they have not ruled out any hereditary heart problems as of yet. He has been under an unusual amount of stress the last 2 years and in the last 6 months has worked under an unusual amount of toxic chemicals at a paper mill; the last month at a oil refinery. Does anyone have any information they can give to us on the information we give to you? We are very scared! He is only 48 and we are very active with 2 boys. What should we expect? We would gladly accept any information. RyoungAngora4683@aol.com


Jon's November 13 reply to Peggy's November 13, 2000 - Hi Peggy, Welcome to Jon's Place. Go to the pages I linked to in your post just above and then read the ones I linked to in this post. Then you'll have a good start on coping with CHF, believe me. Jon.


Zaundra, November 13, 2000 - Hi, My name is Zaundra. I am a 26 year old mother of two and a wife of 10 years. My father was just diagnosed with CHF. I have read this site and wonder how did it happen like this? My husband and I live several states away. I feel so guilty that I can't uproot and move closer to be with him. I feel like crying. I thought I would post here for some support. Thanks. zaundra_d@hotmail.com


Todd, November 14, 2000 - Hi, Has anyone heard of cell transplant therapy for heart failure? I read about it in USA Today and it seems promising but may be in the distant future. I am looking for any options for my Dad's end stage heart failure. Thank you, Todd. tkoenig@adsionline.com


Jon's November 14 reply to Todd's November 14, 2000 - Hi Todd, This is one of the CHF research efforts I have only reported on briefly. French researchers treated a 72 year old man with this therapy but at the same time, they did a CABG (coronary artery bypass graft surgery) on him. Since people with blockages routinely do much better immediately after bypass surgery, there is no way for these researchers to know - at all - whether the new therapy had any effect at all, much less how much! I assume this is a "phase one" procedure, where they just want to make sure they are not going to kill the patient with the therapy.
     Before the surgery doctors removed a small piece of the patient's thigh muscle, placing it in a culture to obtain - 15 days later - hundreds of millions of muscle cells. The cells were then injected into the scar tissue occupying the damaged zone of heart muscle during bypass surgery. There was more about it in the mailing list articles that were sent out recently. You can download these text files here, and can join the mailing lists as well - they're free. <g>
     This therapy is very similar to Doris Taylor's muscle plug research. You might look into that as well. My guess is that human trials of any consequence to us real people will not be underway until next year and this therapy would not be available even experimentally here for at least 2 years. Jon.


Tom B's November 14 reply to Peggy's November 13, 2000 - Hi Peggy, Take a deep breath. There's a good potential that things can get better. I know: I was in your husband's exact position (less the exposure to toxic chemicals) last spring. I was pretty decently healthy up to that point and had never been in a hospital. Now, about 6 months later (after a lot of hand wringing and certainly a lot of education from this site and others) I am doing much better. With an EF of 19%, I was originally under consideration for a heart transplant but drugs and a pacemaker have removed me from the list entirely. Now my EF is 40% and I get around reasonably well. No more backpacking and jogging for me but I'll take 3 mile hikes as a substantial improvement over where I was last spring.
     Read this site, find a good CHF doctor (interview a couple!) and get involved with your treatment. I'm evidence that things can go from grim to decent; not great, but decent. Apply for SS disability right now since there is every likelihood he may not return to work (as I haven't). Be prepared for major life style changes for him and your family. This disease is more or less invisible but it does drain you and can come with some mental baggage as well, particularly for someone being active and a wage earner.
     Above all, your hope for the best can be justified. The docs have a ton of tools at their disposal and some of them work! Please feel free to connect with me additionally if you think I can be of further help. Best to you all! Tom. tbehan@home.com


Michael, November 14, 2000 - Hi, On the news tonight, there was mention of an arthritis drug named Enbrel that has proved to be effective for CHF patients. Have any of you heard anything about it? michaelsoft@hotmail.com


Jon's November 14 reply to Michael's November 14, 2000 - Hi Michael, Enbrel (etanercept) is in trials for CHF patients because it suppresses TNFa: Tumor Necrosis Factor alpha, which is a substance that is partly responsible for "apoptosis" or planned cell death in the human body. There is a high level of this substance in people with CHF. The drug is taken by injection and you can read about TNF-blocking research here and here.


Floraine K, November 15, 2000 - Hi, I have a good friend with congestive heart failure. I have heard many good things about L-Carnitine, but his doctor has not heard of it and most of the alternative medical books I have don't inspire confidence if you don't have faith in alternative medicine to begin with. Does anybody know anything about L-Carnitine? Thanks, Floraine. Fkay24@aol.com


Jon's November 15 reply to Floraine K's November 15, 2000 - Hi Floraine, About I all know personally is that it's too expensive for me. <g> You can read some articles about it at Nutrient Stew. Jon.


Todd's November 15 reply to Jon's November 14, 2000 - Hello Jon and thank you for your response, My dad is now in the hospital with an EF of 7%. He is having memory problems and the doctors said that was from his condition. His internal organs are swelling and under stress. He was put on dobutamine Friday but has gotten worse. We are not sure what to do next since his cardiologist told us this is just the progression of the disease. Our hope is to get him comfortable and feeling better and then get him home. I wish there were more options but I can't seem to find any. Thank you again for your site and the help you have provided to me and my dad. Todd. tkoenig@adsionline.com


Jon's November 15 reply to Todd's November 15, 2000 - Hi Todd, My memory isn't so good either. What is the underlying cause of your dad's heart failure? That often determines what options are available. Also, what meds is he on right now? Jon.


Jon, November 15, 2000 - Hi everyone, Well I finally got my chat room page moved to the new server and have set up new chat times twice a week. I will be trying to attend each chat although I don't know how long I can stay each night. I hope to see you there. Jon.


Anna N's November 15 reply to Floraine K's November 15, 2000 - Hi Floraine, I've been taking L-carnitine for the past 6 months and have had no bad effects (for DCM). In that time, my ejection fraction increased 10%, but I take so many medicines and supplements that there's no way I can say what was responsible. You can get it for a lower price at mother nature.com or thevitaminshoppe.com if you want to try it. Anna. snowyegret7@excite.com


Robert K's November 16 reply to Jon's November 15, 2000 - Hi, Regarding L-Carnitine, there is 1.4 grams in a daily serving of MyoVive, which by the way, I have been taking for 4 months. fsutley@home.com


Charlie Z, November 18, 2000 - Hi, My mother recently died from CHF. Jon has a great site and lots of info that I wish I had known 6 months ago. One thing I learned is to keep pursuing the doctors for all the facts. There were things our family wasn't told. I highly recommend asking for the hospital's records. You may not understand the terminology, but Jon's site can help with that. Jon, thanks again for a great info site. Charlie Zuck. chzuck@hotmail.com


Roxanne, November 20, 2000 - Hi All, Well, Mom had her stress test done last Monday. Her results were good, I guess. She measured 15.75, whatever that means. Dr. Zucker says that her heart is operating at about 60% for someone her age and her cardiomyopathy. To be added to the heart transplant list, you have to score in <the 14% range. Mom also mentioned to him what the cardiologist said to us, that the lining of the mucles around her heart are thinning. Dr. Zucker did another quick echo and saw this. They have been watching mom's blood pressure, which has been low, low, low. They told us that she has low blood pressure and they are not going to add beta-blockers at this time.
     Mom has had some chest pain days where she is so out of breath and so tired. She wanted to go with me to see her oldest grandchild at school for a class play. I took her and it was all she could do. She was so tired afterward. I know this is normal for someone who has CHF. Her spirits are great, though! She and this whole family have so much to be thankful for this holiday season, and we daily thank the Lord for her being with us.
     The transplant doctor Dr. Zucker doesn't know if she is getting better or getting worse, so we are in limbo. I believe that God loves to test my tolerance! He places people and situations in my life all the time, and sometimes keeps me waiting on answers. Gotta love it accept it, and be grateful. I guess the hardest part at this time is trying to keep my sibling from upsetting my mom. She is younger and there has been tremendous pressure from her. She lives 10 hours away and 9 out of 10 phone calls to my mom are upsetting to her. I had to call them and ask them to please if they are going to call mom, don't call and upset her.
     I hope you all have a great Thanksgiving. It seems this family and all of us have some things to be grateful for no matter how bad it looks. Finding faith and finding gratitude is very important. Sincerely, Roxanne. Izipoo@hotmail.com


Jon's November 20 reply to Roxanne's November 20, 2000 - Hi Roxanne, It's good to hear that your mom is in good spirits. That is very important to her overall health! What kind of pressure is your sibling putting on your mom? To do what or not to do what, or what?! <g> You can read about the stress test called a Vo2max <here. Jon.


Mary Lou L's November 20 reply to Charlie Z's November 18, 2000 - Hi Charlie, My thoughts are with you today. Please accept my deepest sympathy for the recent loss of your mother. Keep her memory safe within your heart, remember the good times you shared and you will have her with you always, Mary Lou. MLBinks@aol.com


Sherry, November 22, 2000 - Hi everyone, I have not posted in awhile and I just wanted to say happy Thanksgiving to everyone out there. I had written awhile ago that I was having surgery myself and was worried that something would happen to my mom. Well, my surgery went fine and so is my mom! She has been so stable lately that I cannot even believe it. It is a true miracle that God has blessed my family with. My father is not doing so well but hopefully the right antidepressant will be found and kick in soon. I wanted to thank everyone with whom I have corresponded as well as those I have not, because I have learned a great deal from all of you. G_d bless you all, Sherry. I finally got a home computer so my e-mail address is different. Ketsel@aol.com


Kathryn, November 22, 2000 - Hello everyone, I just wanted to let you know that my son's most recent echo showed that his ejection fraction went up from 19% to 40%. Yippie! We know this is the medication doing its job and we are very pleased. This has given him the encouragement to get back on his diet and exercise routine.
     It's been since August of 1999 that he was diagnosed with DCM. From what I have read here this is a fairly good result for one year plus after diagnosis. I thank God and I thank everyone here for being an anchor in the midst of some very rough seas. It was very dark for what seemed like a very long time. This little bit of bright spot is like a breath of fresh air. I wish you all the best. We can be truly thankful this Thanksgiving for being here and having our loved ones with us now. I am thankful for the present moment. It is a gift. Bless you all, Kathryn. Kathryncole@hotmail.com


Jeanette's November 23 reply to Kathryn's November 22, 2000 - Hi Kathryn, I am glad to hear your son is doing so well. Congratulations and good luck. God works in mysterious ways. God bless, Jeanette. jeanette841@yahoo.com


Paula, November 23, 2000 - Dear Jon, I have a 3 year old son who has DCM and CHF since June of 1999. His EF has been at 11% since then. He is on a heart transplant list and seems to being doing ok. He started Coreg in April and still nothing has changed with his EF. Does this mean his EF will not get higher? When should I start to see some kind of difference in his EF? The Coreg he is on is like a study because there aren't too many children on it. So I'm really not getting too many answers. Thanks, Paula. bigmouth1021@aol.com


Jon's November 23 reply to Paula's November 23, 2000 - Hi Paula, I was on Coreg for about 2½ years before my EF went up and I don't know that Coreg brought it up or whether it something else. So I have to give you the one answer I hate giving people because it helps no one - I just don't know. Hopefully, with proper care (ACE inhibitor, Coreg, and maybe digoxin, diuretics, and Aldactone) his EF will rise but the when and why I just don't know. Maybe someone else with a child who has DCM can give us some insight. Jon.


Todd's November 24 reply to Jon's November 15, 2000 - Hello Jon, I am sorry for the long delay in my response to your question about my dad's condition and meds. He spent 6 days in the hospital and I was told that he wouldn't be around much longer, so I traveled to Florida to see him. His condition is severe ischemic cardiomyopathy. They say he has progressive dyspnea and fluid retention with clinical congestive heart failure related to known severe end-stage ischemic cardiomyopathy. His EF is now at 7%. His meds are now 50mg Cozaar once daily, 0.125mg digoxin once daily, 40mg Lasix once daily, allopurinol once daily for gout, and 25mg Aldactone once daily.
     They have taken him off Coreg, Coumadin, K-Dur, and Slow-Mag. We now have hospice care to help out. He is very tired all the time and kind of fades in and out. His memory is very bad and he is unable to do basic tasks. We don't know what to expect next. All we can do is take care of him as best we can. I hope this information helps. We just wish there was something else we could try. Thank you for your site, Todd. tkoenig@adsionline.com


Jon's November 24 reply to Todd's November 24, 2000 - Hi Todd, I am sorry to hear your dad is so sick. No sweat on response time; your plate is full. It sounds to me like the doctors assume he cannot get any blood flow restored through surgery, angioplasty or anything else. Is that the case? The only thing that might make serious difference is restoring some blood flow to his heart. If you are pursuing information, I would concentrate on that angle. Maybe you could talk to Dr. Patrick McCarthy at Cleveland Clinic and see what options may exist for your dad's specific situation. Jon.


Jim, November 24, 2000 - Hi, My dad has CHF, acute kidney failure and COPD. I would like to know if anyone has experienced extreme anxiety, confusion, lethargy, tremors, agitation and sleep problems if their BUN levels were very elevated; such as high creatine count and low potassium. He has kidney failure, so naturally his fluid levels are monitored. His Lasix is varied since we have to watch his weight daily and his output daily. It is a science trying to get it even any length of time. jimanji@webtv.net


Karen's November 25 reply to Jim's November 24, 2000 - Hi Jim, My husband is 60 years old and has CHF (EF 20%), dilated cardiomyopathy, and chronic kidney failure. We've been dealing with the CHF for 2 years but one year ago we learned that his kidneys were failing too. The treatment then became difficult since often the treatment for his heart condition was harmful to his kidneys and vice versa. One doctor wanted him "dry" and another wanted him "wet."
     In September of this year his kidney function was down to 11% so he had a catheter implanted in his abdomen and he now does peritoneal (home) dialysis 3 times each day. He has lost 60 lbs of fluid, a lot of it from his abdomen (ascides) that he had been carrying around for a year. He was feeling terribly sick by September and was only given about 3 months to live. Now he feels remarkably better, has energy and does not feel sick. The dialysis seems to have rid his body of the accumulating toxins and of course carrying 60 lbs less around every day makes him feel better also. He still has CHF and does get tired.
     Check into drkoop.com, search for ESRD and pull up "Conditions" and "Concerns" relating to ESRD. There you will find a litany of symptoms coming from failing kidneys that may help you understand what is going on. Oddly enough, some of the symptoms from kidney failure also occur with heart failure so it can get complicated but maybe this will help, Karen.
     I must add that my husband has been taken off some of his heart medications because of his kidney situation (like Altace and digoxin, and his Coreg dose is lower) and that also probably contributes to his feeling better right now, which I realize is not good in the long run but he seems to be leaning toward quality rather than quantity, and is enjoying his days. PhillipsK00@cs.com


Paula, November 25, 2000 - Dear Jon, I am asking for prayers for my friend Barb. She has CM and CHF. She has been really sick for the last couple of weeks. She has helped me a lot with coping with my 3 year old son who has DCM and CHF. Please keep her in your thoughts and prayers. Thank you, Paula. Bigmouth1021@aol.com


Jim, November 27, 2000 - Hi, My friend's 81 year old father has been diagnosed with CHF. He would like to know if it is normal to take a day or two to recover from exercise. If so, what can be done to minimize the recovery time? xiowaguy@mediaone.net


Jon's November 27 reply to Jim's November 27, 2000 - Hi Jim, It's a very individual thing but I can give you some general guidelines that seem to apply to most of us CHFers. These refer to structured exercise as opposed to ability to function in daily life activities. For what it's worth, fatigue is pretty much a way of life for those of us who have had CHF awhile.

  1. Meds slow us down. This is an unavoidable side effect of the meds that prolong our lives. Those meds make our hearts work in a "lazy" way that conserves our hearts' energy and thus, our lives.
  2. If you're fit when diagnosed, you can do more without fatigue. Like healthy people, overall fitness, fat percentage and lung capacity all help determine our ability to exercise. If you're out of shape, start really slow and expect more fatigue.
  3. Type of exercise matters. Walking is best. Bike riding and swimming are good. Light weights are okay but can be overdone easily.
  4. The "fatigue hangover" hits on day 3 for most of us. That's a result of how slowly our bodies react to activity.
  5. Know thyself. Write down how you react to activity and learn to adjust so you don't become a vegetable but don't wear yourself to a frazzle either.

I hope this helps. If this isn't what you are after, just say so and we'll try again. Jon.


Katie, November 27, 2000 - Hi Jon and fellow loved ones, On November 23rd my husband Dennis finally lost his struggle for life. He survived cardiomyopathy for 8 quality years with medications, pacemaker/defibrillator, stents, 9 months of continuous IV dobutamine, 2 months with a bridge to transplant device (the beat did go on), and waiting at the top of the transplant center's list for a match and a big heart for 28 months. He did all this as he truly believed a donor heart would come. The struggle was not only his, but our entire families. The watching sodium intake, checking the medications, measuring the fluid intake, getting the weight off, scheduling the office visits, waiting for doctors, and matching the EOBs. We would be happy to do it all over again in hopes of receiving a donor heart!
     Friends - having been in a center of excellence for months and seeing miracles every day, I say to you, "Don't give up hope!" Follow your doctor's program and build memories, Katie. lowbigflyer@worldnet.att.net


Mary T, November 28, 2000 - Hi folks, After months of searching for a site that deals with CHF which is current, I think I finally found one. My husband was diagnosed with cardiomyopathy and CHF in 1990. At that time his EF was 35%. He did remarkably well for quite a few years, then he had an accident and all went bad. In 1998 he was hospitalized with CHF and had a EF of 15%, but that was determined while he was in full blown heart failure. We were devestated but soon learned that it could improve, which apparently it did.
     However, this past summer has been horrible. He was hospitalized on June 17 with CHF. At this time we choose to stay close to home for his medical care and didn't have a cardiologist. From June 17 to July 4, this doctor kept my husband in ICU and pumped him full of Lasix to the point he got gout. This doctor never got any medical records from our doctor in another city and never did an echo. When questioned, we simply got "I can tell how you are by looking at you in that bed." Well, he finally released my husband on July 4, with the understanding we would have blood drawn every other day. I now wonder why, since I suspect it was never looked at. During this time we were working on getting my husband an appointment with another cardiologist in our area.
     We got the appointment for August 4 but on July 27 my husband was readmitted to the hospital and we never saw the new doctor. Again I questioned this doctor about testing and medical records to no avail. Again, the treatment was mega-doses of Lasix at 180mg by IV push 3 times a day and again he got gout. It seemed things were worse. They nearly lost my husband from a high potassium level, one that should have been recognized when the lab work was sent to the doctor at 10:00 AM that morning. Instead I kept questioning the nurses about his sleepiness and rising blood pressure and finally the doctor waltzed in at 7:30 that night. We got him through that crisis and a week later on August 17 the doctor announced that after a 24 hour urine test he would be free to go. The next night we were informed that his BUN and Creatine levels had risen too high but he would be allowed to go home on no meds.
     My husband got scared, I got scared, and we decided to see what we could do about a second opinion. We had been told we couldn't do that in the hospital. Wrong! We fired his cardiologist since we figured none was better than what we had, and the next cardiologist agreed to see him the next day. Before our new cardiologist saw him, he ordered all his medical records from his physician in Syracuse and had an echo done. Before he walked into my husband's room, the man knew exactly what was going on. My husband's EF was now 13% and that was with him carrying no excess fluid. Each day was a blessing given the condition of his heart muscle. Our cadiologist had never seen a heart this large and to add to his problems, his kidneys are now messed up, which we knew they weren't the greatest to start with but now it seems they don't tolerate the CHF meds well at all.
     We are on a roller coaster ride, it seems. It is hard at times, like now I know he is not feeling well and yes he has fluid again. His jugular distension is 9 but they don't want to put him in the hospital and he doesn't want to go. I guess I can't blame him and he doesn't always tell the doctors everything. This is not the first time but last night, everything became too bright; the light was such that he couldn't see. Could his drugs be doing this? He won't ask and I'm not sure I should, given this is his life. I know he is afraid he will be back in the hospital again.
     His meds are 0.375mg digoxin, 50mg Captopril 3 times a day, 12.5mg Coreg 3 times a day, 10mg Simvastatin, 25,mg spironolactone, and 50mg amitriptyline nightly. His Lasix and zaroxolyn are given on an as-needed basis. At his base weight or lower he takes 80mg Lasix twice a day, at 2 lbs over his proper weight he takes 160mg Lasix twice a day, and at 4 lbs over his proper weight 160mg Lasix 3 times a day with 2.5mg zaroxolyn, along with 40mg of potassium. He is also a type II insulin dependent diabetic. I am nearly certain that the fatigue he feels comes from the medications, but this thing with his vision concerns me. Has anyone ever experienced this?
     I want to thank you for allowing me to ramble here, and if this makes no sense to you, join the crowd. All I know for sure anymore is that I am scared, he is scared, and it affects everything you do, including not sleeping. When he gets bad, I lay there and listen for him to breathe; it's horrible. I forgot to add that my husband is only 54. Thanks again. maryt@mvip.net


Jon's November 28 reply to Mary T's November 28, 2000 - Hi Mary, I'll leave most of this to others but want to hit a few points right now. Digoxin (Lanoxin) can cause visual disturbances and this indicates a too-high "dig" level. He needs to be tested for that, which requires that he take his digoxin a certain number of hours before having blood drawn. You should always report side effects to the doctor. How else can you get rid of them? Why suffer with such things for no reason?
     Please remember that hospitals are voluntary. They aren't prison. You can get up and walk out anytime. You don't have to take any meds you don't want - in or out of the hospital. I went to war my first morning in the hospital when a nurse's aide insisted that I had to wake up at 6:00 AM just to get weighed. Let's just say that this went all the way to the head doc on the spot and I was not awakened for weighing the next morning! <lol> You don't even have to eat hospital food. Just have someone bring what you want in to you to your room. That's what I did last time I was in the hospital. My CHF doc walked in while I was in bed scarfing down a Big Mac! <lol> Hey, ya gotta splurge sometime! He got a laugh out of it!
     I wonder about the diuretic schedule being so regimented. How are his electrolytes (potassium and magnesium) kept stable when he never knows how much Lasix and zaroxolyn he will take? We all adjust these meds to some extent due to edema and that's good, but to vary it to the degree you describe based only on weight could be tricky. I base my changes as much on visual swelling as weight. What if he puts on a few pounds of fat due to inactivity? Wouldn't that totally screw up his diuretic schedule? Just wondering,...
     Anyhow, welcome to Jon's Place. I hope others speak up on all your concerns! Jon.


Debbie, November 28, 2000 - Hi, This is concerning my mother who has been in CHF for about 2 years. Hers seems to be the result of Prednisone. She was on high doses for 1½ years for arthritis. I don't fully understand everything that takes place with CHF. All I know is that she has good days and bad. She tries to eat properly and not overdo it. Some days she is so weak she can't get out of bed. Other days she feels almost normal. Is this normal for CHF patients?
     How do you deal with the weakness and fatigue? She'll be so tired she'll just cry. I feel so helpless. She is also a diabetic on a low income. The hospital here has a charity program she has been blessed to be on, but I sometimes wonder if she is getting the best possible treatment. All they have told me when I ask them is she hasn't got anything wrong with her heart that can be fixed: no blockage, no valve problems. They say it is the natural progression of diabetes. She is also in the early stages of kidney failure. The fatigue and weakness are the worst parts of it. She thinks if she rests, she will only get weaker, and that activity will help her get stronger. piersondeb@excite.com


Mickey, November 28, 2000 - Hi, My mother has cardiomyopathy and while she is doing quite well lately, I believe she is quite lonely. She is convinced that no one will date her because of her illness and I was wondering if anyone knew of a dating service or matchmaking group that specialized in people with physical disabilities? She loves to travel and do new things, but does not have anyone to do them with besides her family. The only group I have found deals only with mental disabilities. ru571@yahoo.com


Kim, November 29, 2000 - Hi, I live in Tempe Arizona. Recently on our local news they did a segment on a 67 year old man with CHF at the Phoenix Heart Institute who had an experimental surgery. They implanted a device. It was a very small device and was surgically implanted in the man's chest. It is on the same line as a pacemaker but this device helps both the left and right side of the heart pump. The patient was interviewed and he said he felt great. He said he was normally about 15 steps behind his wife and now he can keep up with her. I will keep checking to find the name of the device. As I said, this is experimental and they are still looking for volunteers to see how this will work out. Sounds hopeful, huh? GGIV@msn.com
 
Jon's note: Check into this page


Mary T, November 29, 2000 - Hi Jon, Thanks for the response. His blood work was done on Monday to check the dig and electrolytes as well as kidney function. It has to be done again Thursday. I don't know what is going on, to be very honest with you. Like I said, we have been dealing with this for 10 years now but things have gotten increasingly worse.
     He is seen by his cardiologist generally every 2 weeks but at the moment it is once a week with additional blood drawn on Thursdays. I suspect that's what you were concerned about in regards to magnesium and potassium levels. I think his BP is too low. I took it tonight and it's 67/44. To me, that is low. I am wondering if his medications need to be looked at again.
     Like you said, a hospital is voluntary and he doesn't want to go back. I feel like a snitch when I call the doctor on my own. My husband is from the old school and when someone asks you how you are, his answer is always the same - fantastic. It has taken a lot to get him to be somewhat honest with doctors but it's the only way they can treat him properly. Again, thank you for this wonderful site. Mary. maryt@mvip.net


Carol, November 29, 2000 - Hi, I'm looking for any information about CHF. My husband has had 2 bypass operations and a lung operation to remove plaque. He is having very bad upper back pain starting from the left side and going across his back. Has anyone had any similar problems with the upper back? Any information will be appreciated. Ctomesbob@aol.com


Barbara B, November 29, 2000 - Hi Jon, I am so happy I found your site because right now I am very frustrated. My husband, who is 47, was recently diagnosed with CHF and cardiomyopathy. He is on several different medications including Coreg, digoxin, demadex, zestril, glucotrol, and ecotril. He was on Toprol but was taken off it.
     For the past 6 weeks he has had severe vomiting and diarrhea every 4-5 days. At first the doctors thought it was a virus. He was hospitalized and nothing was found. Recently after an ultrasound and CT scan, and today an MRI, they found a renal cyst on the right side. No one can or will tell us why he is getting so sick. I am really scared! I do not know where to turn for help. Is it the meds he is on? Is it something else? I feel like they do not know either. He did see a transplant doc but was told they don't have a heart for his size. His heart is pumping at 20% and they said he was a class 3. I do not understand all of this and just want someone to explain it to me. If you can help, I would appreciate it! Dusti885@aol.com


Davida S' November 30 reply to Cathy's November 8, 2000 - Hi Cathy, We all know what the intitial diagnoisis of CHF does to an individual as well as their loved ones. Your son sounds like he needs major uplifting. Cathy, he can count on seeing a card or note from me next week. It may not be much but I hope it helps. God has sent us some special friends and family to help us on many occasions when Dan couldn't do for himself. Dan being alive is a blessing in itself. This CHF thing hangs over my head every day and will for the rest of our lives. Even if Dan's EF returns to high normal and all meds are taken away and he runs 10 miles a day, it will hang over us like a volcano waiting to erupt. I wouldn't wish this on anyone. cavalier_1@msn.com


Debbie, November 30, 2000 - Hi, I have written here before about my brother who has CHF. He has not seen his doctor in 2 years and every time his prescription comes up he is being able to fill it. We feel the only way he will get in to see the doctor is when they stop refilling it. Is this normal for a doctor to keep doing this? Also, can the pharmacy keep refilling without a written prescription? He is in very late stage CHF and that was our only hope of getting him in to see a doctor. Can any of you tell me how often he should be in to see the doctor and if this doctor should keep refilling his meds without seeing him? Thank you. dff1217@home.com


Jon's November 30 reply to Debbie's November 30, 2000 - Hi Debbie, A doctor should not indefinitely refill prescriptions without examining the patient. With that said, they may talk on the phone, may have a doctor-patient relationship that encourages trust, etc,... No one outside the doctor-patient relationship really knows what that relationship is like day in and day out. It is up to the doctor how to go about this. A pharmacy will never fill an Rx without an Rx. However, a called-in Rx for non-controlled drugs works every time so no written prescription is really needed. You are free to call his doctor and discuss your concerns, though. He won't release confidential info to you even though you are family but he should be willing to listen to your concerns. Naturally, it would be best to discuss this with your brother rather than his doctor but I have 2 brothers and realize it's not always that easy <g> Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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