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

Tami 10-2     seek amiodarone info
 
Jon's 10-2 reply to Tami's 10-2     amiodarone info
 
Sanny 10-2     new to CHF, questions & more
 
Kat H's 10-3 reply to Lee B's 9-27     hauling around that oxygen & more
 
Karen D's 10-3 reply to Sanny's 10-2     adding the low sodium restriction & more
 
Tanja 10-4     questions about mom's condition & travel
 
Jon's 10-4 reply to Tanja's 10-4     doctors and travel
 
Barb L S 10-4     prayer request for my dad
 
Sherry's 10-5 reply to Kat's 9-25     kidney function & Lasix, update & more
 
Janet 10-5     what can I do for my mom?
 
Hanna 10-6     meds, edema question
 
Jeanette's 10-6 reply to Janet's 10-5     she needs a better doctor
 
Jon's 10-6 reply to Hanna's 10-6     getting the right doctor
 
Jon2 10-9     seek milrinone info
 
Jon's 10-9 reply to Jon2's 10-9     milrinone info
 
Sanny 10-9     too many sources are confusing me
 
Jon's 10-9 reply to Sanny's 10-9     CHF info
 
Barb L S 10-9     seek pacemaker implant procedure experiences
 
Todd K 10-9     what should we ask the doc?
 
Eileen 10-11     seek help dealing with sores & swelling
 
Bill D's 10-11 reply to Barb L S' 10-9     bad surgery experience
 
Davida S 10-11     seek CoQ10 experiences
 
Kat H's 10-11 reply to Barb L S' 10-9     helping your father cope
 
Karen D's 10-12 reply to Davida S' 10-11     CoQ10 and CHF
 
Roxanne 10-12     update on mom, transplant questions
 
Jon's 10-12 reply to Roxanne's 10-12     transplant info
 
Walter K's 10-12 reply to Barb L S' 10-9     pacemaker implant procedure
 
Rick M's 10-12 reply to Karen D's 10-12     CoQ10 source
 
Jennifer's 10-13 reply to Davida S' 10-11     CoQ10 and CHF
 
Jon's 10-13 reply to Davida S' 10-11     CoQ10 and CHF
 
Jon2 10-16     my mom died
 
Jon's 10-16 reply to Jon2's 10-16     our sincere condolences & more
 
John Len's 10-16 reply to Eileen's 10-11     sores on legs and feet
 
Jon's 10-16 reply to John Len's 10-16     sores on legs and feet
 
Annie G's 10-16 reply to Davida S' 10-11     CoQ10
 
Janet H 10-17     to Jon2, update on Dan, arthritis meds question
 
John Len's 10-17 reply to Jon's 10-16     doctors on my edema
 
Karen P's 10-18 reply to John Len's 10-17     gout control possibilities
 
Karen P's 10-18 reply to Janet H's 10-17     Vioxx warning - may induce edema
 
Walter K's 10-18 reply to Janet H's 10-17     I take Celebrex
 
Mary Lou Latini's 10-18 reply to Janet H's 10-17     meds for rheumatoid arthritis
 
John Len's 10-19 reply to Karen P's 10-18     good advice on gout meds
 
John Len 10-19     how to handle low BP & heart meds
 
Irene Bailey 10-20     seek CHF support, foods info
 
Janet L 10-20     thanks for the replies
 
Kim G 10-20     seek info on life with end-stage CHF
 
Claudia P 10-20     am very unsure, seek info & advice
 
Jon's 10-20 reply to Claudia P's 10-20     starting advice
 
Tom B's 10-24 reply to Claudia P's 10-20     coping, doctors, exercise, transplant & more
 
Ben B's 10-24 reply to Claudia P's 10-20     coping, doctors, exercise & more
 
Todd 10-24     seek CHF doc in Fort Meyers, Florida
 
Janet's 10-24 reply to Claudia P's 10-20     coping, doctors, meds & more
 
Karen D's 10-24 reply to Claudia P's 10-20     also to Irene
 
Deb 10-24     Coreg, blood donation questions
 
Jon's 10-24 reply to Deb's 10-24     Coreg, blood donation
 
Janet G 10-24     seek doctors and natural diuretics
 
Sherry 10-25     update
 
Sherry's 10-25 reply to Kim G's 10-20     coping with end-stage CHF
 
Anna's 10-25 reply to Deb's 10-24     blood donation
 
Kathy 10-26     update, Coreg dose question
 
Alice 10-26     runny nose, sneezing question
 
Jeanette's 10-27 reply to Kathy's 10-26     Coreg and fatigue
 
Mike H 10-30     caffeine and CHF
 
Jon's 10-30 reply to Mike H's 10-30     caffeine and CHF
 
Katie 10-30     update on my husband & more
 
Dina Rice's 10-30 reply to Claudia P's 10-20     transplant, update, blood testing question & more
 
Jon's 10-30 reply to Dina Rice's 10-30     blood testing
 
Barb L S' 10-30 reply to Bill D's 10-11     update on my dad Sam and more
 
Barb L S' 10-30 reply to Kat H's 10-11     update on my dad Sam and more
 
Barb L S' 10-30 reply to Davida S' 10-11     CoQ10 and CHF
 
Barb L S' 10-30 reply to Walter K's 10-12     thank you & more
 
Deana 10-30     seek accurate CHF info for my mom
 
Ben B's 10-30 reply to Dina Rice's 10-30     transplant & people's perceptions
 
Barb L S' 10-30 reply to Jon 2's 10-16     my condolences
 
Barb L S' 10-30 reply to Irene Bailey's 10-20     welcome to Jon's Place & more
 
Davida S' 10-30 reply to Dina Rice's 10-30     maybe consider it a safety net
 
Barb L S' 10-30 reply to Alice's 10-26     maybe it's the flu & more


Tami, October 2, 2000 - Hi, I have a good friend who was recently put on the drug amiodarone at 200mg twice a day. I read online about it and it frightened me. I just found your site a couple of weeks ago but haven't seen anyone mention this particular drug. I would appreciate any insight you could provide. I don't have a lot of information on my friend's diagnosis, except that he is not a candidate for heart transplant. His heart was out of rhythm and that is why this medicine. He also has CAD. tjd@bright.net


Jon's October 2 reply to Tami's October 2, 2000 - Hi Tami, Search my site with the site search engine, beginning with The Archives. There are also articles about amiodarone (Cordarone) here and here. Jon.


Sanny, October 2, 2000 - Hello folks, My Zapper friends highly recommended this site now that my husband Bill, age 65, was diagnosed with CHF Friday. This is his history: MI and angioplasty 3/88, hyercholesterolemia/hyperlipidemia, dual chamber ICD 2/99, RBBB, pocket infection, explant and reimplant of ICD 3/99, first zap in August of this year. His EF has been 30% since 2/99 with 100% restenosis of old angioplasty but his body has created 5 collateral arteries. He has GERD and was even a polio baby. Bill had an echo and stress test a couple of weeks ago. He flunked his stress test, thus the cath. We were hoping for another angioplasty but no such luck.
     The good news is that all of his work on controlling his cholesterol has paid off. He has shown no additional occlusions (blockages). The bad news is the CHF. I have not only read The Manual, I also printed it out for Bill to read, which he did. I have already been through most of this site and have started my list of questions for our cardiologist appointment. Bill's current heart meds are 5mg Norvasc and 20mg Zestril. He just started 0.25mg digoxin, Vitamin C, Vitamin E, Folic Acid, 600mg Gemfibrozil twice a day and fish oil. This doesn't count the allergy and GERD meds. He gets low BP on beta-blockers and can't take any of the statins due to liver enzymes. I don't know what heart class he is yet. That is one of the questions on my list.
     What other questions do you suggest that I ask? The low sodium diet is going to be tough for us to get going on top of the low fat, low cholesterol diet he's been on for 12 years but Bill is already reading all the food labels in the house, and that's a good sign! I'm a whiz when it comes to AICDs but CHF is new to us. I've got a lot to learn! Thanks for being there and thanks for the great site and info, Sanny. SannyS@aol.com


Kat H's October 3 reply to Lee B's September 27, 2000 - Dear Lee (and Jon), I've been using an oxygen concentrator (42%) at home for 3 years, and portable oxygen when I go out for 2 years. Your husband's psi may be lower as they usually start out as low as ½ - 1 pound psi. I use the concentrator whenever I "lie down," which I don't actually do; I recline on a pile of pillows, like many CHF patients do. This means when I sleep, nap, even just stretch out to read; any time I am not completely upright. I also use it after a meal, not a snack, but a meal. This takes the stress off my heart during digestion, which had been causing a lot of fluid retention until I used the oxygen after meals.
     When people go out, the biggest complaint usually involves the size and weight of the portable unit. Some people have a bulky type that needs to be wheeled around. Others have one like mine which is held in an carryall bag. It is still too heavy for me but it is not necessarily too heavy for everyone, especially if they carry it only from the car to a shop where they can rest it in a cart or buggy. There is an even smaller unit but I've been told it only holds a couple of hours of oxygen and might not be enough. My husband carries mine for me. I don't much care for it because of the lack of humidity. The pure oxygen "sears" my sinus cavities so I have to use a saline nasal spray frequently when I use the portable oxygen and during the winter with the concentrator in spite of the humidifier attachment.
     If you start using oxygen, I strongly recommend you do not wait until you have discomfort, infections, develop sinusitis or such before getting the spray. It is very cheap and available at places like Walmart or any pharmacy over the counter. Spray before putting on the oxygen tube and whenever there is a sensation of burning or stinging or dryness while using oxygen as well as after removing the canula.
     Oxygen can really increase a patient's energy level and take strain off the heart and lungs. It is most often recommended when patients have trouble breathing when they lay down, have angina or arrhythmia, and during even mild exercise. The most important things are no smoking, lighting candles, heaters (even electric space heaters), or cooking when using the concentrator or portable units. Everyone has to learn to navigate your home by keeping an eye out for that pesky canula snaking around on the floor. Tripping and falling is a real danger. I keep extra tubing coiled and held with twist ties. Don't toss the nasal end on the floor, ever. Change the nasal end weekly at least or if it falls to the floor. Resist the temptation to let someone else try it out. There are probably lots of other things I can answer if I know the complaint or problem someone is having. All in all, I think it is kind of neat to breathe canned air just like an astronaut! <lol> Kat. helmicks@intelos.net


Karen D's October 3 reply to Sanny's October 2, 2000 - Dear Sanny, Hi. My husband also has an ICD and has been on a low-sodium, low-fat, low-cholesteral diet for a couple of years now. It really won't be as hard to add the low-sodium restriction to your husband's diet as you are thinking right now. Unfortunately, a lot of low-fat convenience foods are high in sodium, so if you have been using convenience foods, that will be your major change. Have you checked Jon's recipes yet? As far as statins go, my husband also could not take any of them until his cardiologist tried him on Baycol. It is working. I'm glad you found this site - it has been a godsend for us, Karen. bdeit@cfl.rr.com


Tanja, October 4, 2000 - Hi, My name is Tanja and I believe my Mom has CHF. She went to see her cardiologist last Monday for her routine followup. She has had high BP for at least 10 years, which was never treated. Her doc said she just has to live with it. Forgive me if I don't know all the correct terms. One of her heart valves doesn't work properly by not closing all the way. She also was diagnosed with sleep apnea this March. She is on various meds and her BP has been much better, unless she feels stressed. She uses her oxygen machine at night for her apnea. Now, back to Monday.
     She informed her doc that she had gained over 10 pounds and was having problems breathing, even while resting. After examining her, he said she had fluid in her lungs and gave her some diuretics. That was it! Based on my research, I believe she has CHF. She believes so also. German docs are known to not tell the patient what they have unless "cornered" to do so. My question is: Do you also think she might have CHF? My second question is whether or not it's ok for her to fly for a long stretch of time? I live in Alabama and she in Germany. She is supposed to come and visit me next Monday and I'm just worried that it might not be good for her. She has lost some weight and the swelling in her legs has gone down, however she still has problems breathing. lomsy@earthlink.net


Jon's October 4 reply to Tanja's October 4, 2000 - Hi Tanja, That untreated high BP may be what caused her CHF (if that's what it is), which obviously means she needs a different doctor. This one is no good. There is a page in the FAQ about flying with CHF. In short, if she is well compensated, it is probably okay. If not, not. Hopefully, some people with experience traveling with CHF will also answer. Jon.


Barb L S, October 4, 2000 - Hi, My name is Barb, or Barbara as my dad calls me. He has CHF, CM and a-fib. He just went into Helene Fuld Hospital this morning to have cataracts removed. He was a nervous wreck, as my sisters and I knew he would be. Even though my dad is 82 and has heart problems, he has been very fortunate and has not had to go to the hospital much, except for his CHF. We all have been blessed. Anyway I have not posted in awhile but I need my father and our family to be put on a prayer list and my head is spinning. His heart rate dropped to 37 and my sisters are waiting for his heart doctor to get to the hospital. I am headed there now. He does not have a CHF specialist. Please include him in your prayers. We just lost my mother 3 years ago and we were not prepared for anything like this to happen. Everyone, take care and give the person next to you a hug. Barb. Alikeys@hotmail.com


Sherry's October 5 reply to Kat's September 25, 2000 - Hi everyone and thank you Kat, for your message. It helped clear things up about kidney function. I have also heard of people getting stronger things than Lasix and still surviving, although our doctor says she probably wouldn't. Then again he still cannot explain why my mother is still alive! So mom is home again and trying to get better. We will take her and my dad tomorrow for a flu shot so I am praying for no side effects this weekend. I have been a wreck the past few weeks but am trying and praying for help all the time. I myself am scheduled for surgery on October 18 to remove my fibroids and my biggest worry is that something will happen to my mother while I am stuck in bed but I have to do it. I wish all of you out there the very best. All of you are in my prayers. Thanks for listening to me all the time, Sherry. szauderer@milbank.com


Janet, October 5, 2000 - Hi, My 87 year old mom lives with me. She is having a hard time breathing. Even with oxygen, her legs, ankles and feet are swollen. All she takes is a high blood pressure pill and heart pill, which she has taken forever. The doctor just keeps saying, "Take a water pill." Is there anything else I can do to make her comfortable? What should I expect? When should I take her to a hospital? gibsonj@email.com


Hanna, October 6, 2000 - Hi, My husband was hospitalized with CHF the first time 5 years ago. The second time was due to a drastically increased heart rate. All that has been controlled with meds and bi-pap for the past 5 years and 3 months. The past couple of months he retains fluid more and more often and has a harder time getting rid of it. The other night, finally the extra medication kicked in and he lost 16 pounds overnight. The doctor told him that more Lasix or zaroxolyn won't help. When my husband told me that, everything in me said, "Huh?!" Isn't the typical thing more? ditto@televar.com


Jeanette's October 6 reply to Janet's October 5, 2000 - Hi Janet, If I was in your situation I would be getting her to a CHF specialist as soon as possible; If nothing else, to the hospital. There is no reason for the doctor to take her symptoms so lightly like that. If she is having trouble breathing, has fluid building up and Lasix isn't working like it should, she needs medical attention so her lungs don't flood. Make the hospital put you in touch with a CHF specialist. And ask questions, making sure they answer them. If they don't, seek different doctors. She shouldn't have to be suffering like that; no one should. Good luck and I am praying for you. Let me know how things go, Jeanette. jeanette841@yahoo.com


Jon's October 6 reply to Hanna's October 6, 2000 - Hi Hanna, My suggestion would be to see a heart failure specialist. The difference in quality of life such a specialist can make is amazing. Lasix plus zaroxolyn is hardly the end of the road! ;-) A doctor who does not explain such statements is not the doctor you want holding your husband's life in his hands. Please fire him and get that CHF doc. Jon.


Jon 2, October 9, 2000 - Hi, It's been awhile since I last posted since my Mom had been doing okay, however she has recently been hospitalized again suffering from ventricular tachycardia and heart failure. They seem to have controlled her arrhythmia and are now giving her a medication called milrinone for heart failure. Her kidneys are not working very well. Does anyone have any information on this drug? jonjensen@uniserve.com


Jon's October 9 reply to Jon 2's October 9, 2000 - Hi Jon, See the inotropes page. Jon.


Sanny, October 9, 2000 - Hi Folks, I am having a really tough time now with Bill and the research I've been doing with his CHF condition. He is diagnosed with class 2 CHF. I am getting a lot of mixed information. Some folks say, "Oh, my dad has had it for over 20 years and he's 87 now." My nurses at work (BCBS) are telling me that I'm not over protective or over reactive. They are telling me to stay on top of it. I have read the entire 96 page BCBS program for CHF management and protocol. Bill's docs are following the approved CHF protocol. Bill is watching his sodium content, taking his meds, weighing himself daily. This is a man who would lift 9 foot railroad ties or use a 2-man auger by himself. I would come home finding his facial color gray. Bill has decided that when he's tired he will back off and quit for the day, pay attention and get some rest. He is very active. We have a doctor's appointment tomorrow, Monday, and have to ask some really tough questions. Still, I don't have a good feeling about all of this. Can you help me? Thanks, Sanny. SannyS@aol.com


Jon's October 9 reply to Sanny's October 9, 2000 - Hi Sanny, I hesitate to answer posts like yours because my reply is going to sound somewhat arrogant. That is not the spirit in which I write it so please read this believing that I mean only to help you in your situation.
     Anecdotal evidence has a definite and valuable place in dealing with chronic illness. However - and it's a big however - you need to have enough of it to give you a broad view of the illness in general and then you need enough info by each person so you can judge how well their info applies to you. That's one reason these message boards and The Archives are so valuable. Throw in the bios and the Me Too pages and you have a very large resource of real life experience in dealing with CHF. Read The Manual, the "data" pages on ACE inhibitors, beta-blockers, surgeries, inotropes, miscellaneous CHF treatments, nutrients and alternative, CHF tests, and so on and you gain a quite complete picture of current CHF knowledge from both the treatment and the patient perspective.
     Now, I can put it all up there and constantly improve it but I can't make anyone go looking for their answers there. I can't make anyone read it, much less read it all. However, if I had one genuine piece of advice on dealing with CHF, it would be to read this whole web site. That's my honest opinion, no matter how conceited it may sound.
     By the way everybody, I take Sundays off. I also am slow due to my own CHF, so you need to send in questions a few days ahead of appointments if the answers are important to you. ;-) Jon.


Barb L S, October 9, 2000 - Hi, I wanted to thank everyone for all of your prayers, thoughts, e-mails and inspirational words. They have helped so much. My father has even been put on a prayer list in Texas and they will pray for him every hour until he gets through all of this. On October 4, my dad went to Helene Fuld Hospital for cataract surgery. He's never had any kind of surgery and he is 82. He was terrified of the local they had to administer, which was on his face and around his eye. To calm him down they also administered IV Valium. This still had not calmed him down. Instead of the eye surgeon saying we should try this another time, she then gave general anesthesia. By the time I arrived at the hospital; not only was he white as a ghost but his hear rate had dropped to 34. It was very scary. As if all of this wasn't upsetting enough, not one doctor had been in to see him from the time of the procedure at 9:00 AM till 4:00 PM. His heart doctor was not available so there was another heart doctor from that practice to take care of him.
     He was discharged yesterday afternoon but we were told that he will now need a pacemaker. We haven't told him yet because our dad worries a lot and didn't fare well with this procedure. Plus we want to get through one surgery at a time. His heart doctor thinks that even though he had a problem with his heart, this just aggravated it more because they can get his heart rate up but it doesn't stay up anymore. I've never been through this concerning my dad. He did have to have cardioversions done twice but he was ok. If anyone can offer suggestions on how to make it easier for him when he has this next procedure done, I would greatly appreciate it. I love him very much. I lost my mom 3 years ago and I'm not ready to say anymore goodbyes. Barb. Alikeys@hotmail.com


Todd K, October 9, 2000 - Hi, My Dad is going to see his cardiologist next week and is not sure what questions to ask. He has CHF and about a month ago found that he had very little energy and could not walk his normal 1-2 miles without being out of breath or having to stop. He also has pain in his legs when he walks. This to him was a drastic change in his condition. What should we ask the doctor? Thank you, Todd. tkoenig@adsionline.com


Eileen, October 11, 2000 - Hi, My husband is 58 and has had cardiomyopathy and CHF since 1993. He is also diabetic. His CHF is class 4 for about 1½ years now. He continually loses strength as weeks go by. We are having a lot of trouble with open sores on his legs and feet. The swelling is so great that these blisters form, then pop, and water runs constantly from his legs. The doctors have not been very helpful in how to take care of these sores. Is there a definitive answer somewhere? Should the sores be kept covered with dressings or left open to air? There are so many of them it's hard to bandage his legs anywhere for fear that the tape will cause another sore. I would appreciate any tips. Thanks, Eileen. eileen@wabashpower.com


Bill D's October 11 reply to Barb L S' October 9, 2000 - Hi Barb, We had a friend in his 80s who was also terrified of a cataract operation. They kept giving him stuff to calm him down. The more stuff they gave him (like Ambien), the worse off he was. He never got the operation and he's become a hermit and won't talk to anybody, even on the telephone. If I were you, I would keep him home and don't tell him they want to operate. No cataract, no pacemaker until he wants one, if ever! It was terrible what they did to my old friend Hillary. Bill D. billdog@gate.net


Davida S, October 11, 2000 - Hi everyone, So glad to read and see how everyone is doing. My husband has heart failure. What has been your loved ones' experience with Coenzyme Q10? My husband has been on it since May. His original EF in February at its lowest was 10%. It is now somewhere between 35-40%. Our cardioligist says it doesn't hurt and he doesn't discourage patients from taking it. Our electrophysiologist says it's a waste of money. We pay about $22.50 for 30 pills at 100mg by Nature's Balance. When CVS has 50% off I run there. We are afraid to stop taking it because we want to continue doing what we are doing since he is doing better. So please everyone, let's hear it. Thanks, and keep the faith. cavalier_1@msn.com


Kat H's October 11 reply to Barb L S' October 9, 2000 - Dear Barb, Your father reminds me of my father-in-law, who is also in his early 80s. He feels very fragile and vulnerable now, something he is not accustomed to feeling. When he worries or is nervous, how do you respond to his concerns?
     There are different strategies and it really depends on the person as to which one helps the most. I prefer people do not focus on my health or illness at all. I know those who respond best only if I am optimistic about their health and never act concerned. For others it is the calm, matter-of-fact approach that works. For my father-in-law, all of the above (in his mind) mean that people are not really concerned about him at all and do not care, which isn't true, but there you go. For him, I take his worries seriously. I listen and I ask questions about what he thinks and how he feels, which is the most important thing. This way, in his mind, someone shows they care and he gets to organize his thoughts and feelings so his anxiety is greatly relieved.
     Any strategy above that you haven't tried and given how well you know your father, pick one that may suit and try it. I'm glad you are willing to look for ways to help him. My prayers are with you, Kat. helmicks@intelos.net


Karen D's October 12 reply to Davida S' October 11, 2000 - Hi Davida, My husband started taking CoQ10 at about the same time he began taking Coreg. He has been improving and although he says he thinks it's because of the Coreg, I don't want him to take any chances so we keep buying CoQ10. We pay $45 for a bottle of 60 each 60mg capsules. Last week our health food store had a buy one get one at ½ price sale, so I bought 2. It'll be interesting to see the responses to your post, Karen. bdeit@cfl.rr.com


Roxanne, October 12, 2000 - Hi, We met the transplant team yesterday. We felt so relaxed there and so welcomed. We were treated with dignity. It was amazing. Three weeks ago mom was stage 3. Three weeks later, with meds and tons of rest, she is right now stable and stage 2. They are adding beta-blockers to her list of meds and they are going to do a stress test, a 24 hour Holter monitor and will repeat her echo again in January. Doctor Zucker said she can still go either way right now but we are looking at her critical time being in the next 2-3 years. That is when she will need a transplant.
     I am ecstatic over this! My family is praising God and we are all so very grateful for time. me and my mom's companion went with her to the apointment and I took notes: a full 8 pages worth! I am trying to get them in some order and put it on a floppy so that it can be easily accessible when I need them or when my mom needs them. Now I have a new question for you.
     We were told that when we get to the point of her being back up there at a 3 or 4 on the classification list it takes 1-3 months for them to do the evaluation. Is that normal? Also, when they are doing this, why does a tissue biopsy have to be done once a week for 6 weeks? I didn't get that part of my question out there to the team. I will when we go back in 5 weeks but I'm hoping I can get some answers here. I wish to thank all of you for your kind support and prayers. We are by no means out of the woods with her disease but for the time being we don't have to look at transplant for awhile, Roxanne. izipoo@hotmail.com


Jon's October 12 reply to Roxanne's October 12, 2000 - Hi Roxanne, It's good to hear that your mom is doing better for now. Heart class has a specific meaning. Status has a specific meaning in transplant terminology but I don't understand the way you use these terms or the word "stage," so I don't really know how to answer. Transplant evaluation dose not usually take over 1-1½ weeks. Weekly biopsies every week are done after the transplant. Maybe reading the entire heart transplant section would help clarify some of these things, I don't know. Be sure to follow the links also, for even more info. Jon.


Walter K's October 12 reply to Barb L S' October 9, 2000 - Hi Barb, In 1992 I had a pacemaker put in on an emergency basis. I was only 62 at the time and did not have CHF then. However, I found it to be almost a minor surgery and went off to New Zealand (we live in Pennsylvania) 2 weeks later for a 3 week vacation with no problems. I was on Coumadin before the pacer and there was no time to get over its effects before the operation so there was a lot of bleeding but even so, no real problem. At about that time some high official in the U.S. government had a pacer put in and almost immediately went off to an international meeting. So normally it is a minor and safe operation, although obviously I can't give a judgement in your father's particular case. Good luck and best wishes. hknoth@magpage.com


Rick M's October 12 reply to Karen D's October 12, 2000 - Hi, As a long time CHFer and never one to pay the "asking" price, I recommend you try the web site listed below. I have used them with great satisfaction and since all Coq10 comes from the same manufacturer in Japan, why pay more? http://members.aol.com/Healnherbs/coenzymeQ10.html. Rick. rearadml@iu.net


Jennifer's October 13 reply to Davida S' October 11, 2000 - Hi Davida, I just thought I would tell you what my dad's doctor said about CoQ10. He said it was a waste of money and that no cardiologist in Canada would recommend it. We have not put him on it yet, just testing the waters first but it is an option, that's for sure. I just thought I would tell you what they say about it up here. Take care. jbartz@dryden.lakeheadu.ca


Jon's October 13 reply to Davida S' October 11, 2000 - Hiya Davida, I took rather large amounts of CoQ10 for a couple of years after getting CHF. I believe it helped me improve. Be it Jesus, large doses of ACE inhibitor, Coreg, lifestyle changes, supplements like CoQ10 or whatever, my EF went up in that time. I personally think that CoQ10 helps in relation to your deficiency of it. So if you are low on it in your body, supplementing it will help. If not, it probably won't help much, if at all. That may be why studying it and getting consistent results across large numbers of CHFers is so difficult. Although many doctors and cardiologists say they will not recommend it, I have found that most CHF specialists say it can't hurt and to take it if you want to take it. ;-) Jon.


Jon 2, October 16, 2000 - Hi, I must sadly report that my mother passed away on October 9. Thank you all for your information over the last 2 years that I have been visiting this site. My mom was always pleased to hear about all the other people out there and their stories. Good luck to all of you. jonjensen@uniserve.com


Jon's October 16 reply to Jon 2's October 16, 2000 - Hi Jon, You have my sincere condolences. We've really appreciated your partcipation here. Please remember that you are always welcome. Jon.


John Len's October 16 reply to Eileen's October 11, 2000 - Hi, About Eileen's husband's foot and leg swelling, and breaking out in sores. I have the same problem; not nearly as bad but since I have grown quite fond of these appendages over the last 65 years I would like to learn a lot more as to how to keep them attached to me for a few more years. Doctors are no help and with diabetes I get a little paranoid. Lasix not helping at the moment. a_lenny6@hotmail.com


Jon's October 16 reply to John Len's October, 2000 - Hi John, I sent this by e-mail to Eileen, but I'll post it since others may be interested. I asked a CHF specialist I trust about this and here's what he said (I do not give his name because of liability issues - he isn't worried about them but I am):

     "As you know, specific therapy can't be delivered over the web in a case such as Eileen's husband, but,..., I suspect that this patient needs more effective management of his CHF-related volume overload. The increased pressure in the tissues of the legs from edema causes damage to the skin and leads to the breakdowns. A more effective program of combination diuretics is probably the first step towards eliminating these painful and dangerous skin sores.
     Sometimes I admit these patients for continuous infusion with milrinone or dobutamine while overseeing an aggressive inpatient regimen of diuretics and close monitoring of potassium levels. Intermittent outpatient infusions of these drugs are also useful in selected cases. If this patient is not on Aldactone, that should be considered as well, I suspect. Summary: Get to a CHF doc.
     (I asked about seeing a wound care specialist for this also) Regarding the skin care expert, this is probably worthwhile in the short term while the cause for the skin breakdown is being adressed effectively. Many times we get the most help from the nurses who take care of the "ostomy" sites where colon cancer patients have the exit of their colons diverted to their abdominal wall."

Annie G's October 16 reply to Davida S' October 11, 2000 - Hi, I often deal with a nurse practioner who works with the transplant/CHF cardiologist in London, Ontario, Canada. She saw no problem with using CoQ10. She felt anything that might help and had not been proved to do any harm was okay. She felt the deciding factor would be personal cost. My husband has used it almost from the begining 2 years ago - as soon as I found this site. Was it the medications that helped my husband feel so much better or the meds plus CoQ10? We won't stop the CoQ10 to find out. Why mess with a recipe that's working?! nuffanne@netscape.net


Janet H, October 17, 2000 - Hi, First I'd like to express my sympathy to Jon2. You are in my prayers.
     I have an update on Dan. After getting over a bout of dehydration, Dan has been doing okay. We've been able to take in a few fall festivals and he is still going to shooting matches twice a month. Because it is getting harder for him to handle the matches, we bought him a "Wrangler Personal Mobility Vehicle." It handles outdoor terrain and has the weight capacity to handle a small wagon towed behind the scooter containing his guns and supplies. He used it for the first time this past weekend and it worked fine. I do have a question: Are there any good arthritis drugs that are okay for someone with CHF? Dan is going to ask his doctor at his next regular appointment but we wondered what advice you all might have. Thanks, Janet. dananjan@otherside.com


John Len's October 17 reply to Jon's October 16, 2000 - Hi, The stock answer I get from my GP doctor and my cardiologist is that the vein taken from my leg for heart bypass is causing all the problems, but it went about 8 or 10 years before the edema started. The other leg also lost a vein a few years later and I have no problems with it. a_lenny6@hotmail.com


Karen P's October 18 reply to John Len's October 17, 2000 - Hi John, My husband also had significant problems with gout and pseudo gout. He has CHF and kidney failure. He has gotten results from Colchicine and when there are no longer any gout symptoms he was advised to switch to allopurinol, which is supposed to keep gout from returning but should not be taken while gout is still present. Just a couple of drugs that you may want to ask your doctor about. PhillipsK00@cs.com


Karen P's October 18 reply to Janet H's October 17, 2000 - Hi Janet, My husband has CHF and kidney failure. In the past he tried to take Vioxx, which is often prescribed for arthritis, but I wanted to warn you that although it worked wondrously on his arthritis, he put on about 6 lbs of water weight after only 2 days on Vioxx. He had to stop it immediately. Just a bit of drug trivia to store away. PhillipsK00@cs.com


Walter K's October 18 reply to Janet H's October 17, 2000 - Hi Janet, I have been taking Celebrex, one of the new Cox2 drugs for arthritis since before I had CHF. I think it has helped my arthritis and I am not aware of any side effects. It was prescribed by my internist but my CHF doc knows I am on it (or should know it if he reads my meds list) and has not said anything about it, nor has my cardiologist. hknoth@magpage.com


Mary Lou Latini's October 18 reply to Janet H's October 17, 2000 - Hi Janet and Dan, I take the following for RA (rheumatoid arthritis): Relafen, Plaquenil, Methotrexate and Enbrel (an injectable), which is the most recent addition of the four. The other 3 were prescribed several years ago. None have caused any problems or side effects and have served me well. I have taken many other drugs during the past 27 years, the names of which I cannot recall. Of course Dan's doctor may not be in agreement with my doctor's choices since each person is different and may have different reactions to meds. Also, most doctors have their own preferences and drugs of choice. Good luck with your new scooter, Mary Lou. MLBinks@aol.com


John Len's October 19 reply to Karen P's October 18, 2000 - Thanks Karen, I looked in my medicine chest and had some Colchicine in there from my last bout with gout. I looked at the date,which was 2/6/92. It had been a long time since I had gout. I got a new prescription today, John. a_lenny6@hotmail.com


John Len, October 19, 2000 - Hi, My sister has a son 48 years old who contracted a blood born virus. The 3 month stay in the hospital to overcome the virus left him with a heart attack and heart damage. His delimma is that he has low blood pressure and his doctor is stumped as to what to give him for his heart problems and yet raise his blood pressure? a_lenny6@hotmail.com


Irene Bailey, October 20, 2000 - Hi, My husband was taken to the ER last week. He was having a hard time breathing. The doctor told us it is congestive heart failure. Are there meetings online for spouses? Is there a list of foods to prepare? irene_bailey0@hotmail.com


Janet L, October 20, 2000 - Hi, Thanks to Karen P, Walter K, and Mary Lou for your responses to my post. I'm glad to hear there are some CHFers who are doing ok with arthritis meds. We'll watch the weight closely for signs of fluid build-up. Thanks! dananjan@otherside.com


Kim G, October 20, 2000 - Hi, My mom was diagnosed with CHF years ago. She is now in bed 24-7. I was there today to bathe her. Just changing her night gown tires her out. She was unable to make it to her cardiologist today. I went instead and he met with me. As you can expect, he was not optimistic. I was reading the different classes of CHF and I find that my Mom is probably class 4.
     She has been totally bedridden since June of this year. The doctor said 6 months to a year. They have never said this to us before. We have had my mom in the emergency room many, many times for chest pain and trouble breathing. Most times they do not want to admit her. We are persistent and they admit her. We now know some of the nurses by name. I guess what I am searching for is some information on end-stage CHF. She is in extreme pain at times and the slightest activity brings her great difficulty in breathing. Just wondering what to expect next. Thanks for any info. GGalat@msn.com


Claudia P, October 20, 2000 - Hi,My 54 year old husband recently underwent a heart cath to determine whether or not there was any coronary heart disease involved with his cardiomyopathy. We had been told that his heart was severely weakened and was pumping at 22% as determined by echocardiogram. We had known for 4 years that his heart was enlarged but were told then that this was not unusual for someone like my husband who has always been athletic. When the cardiologist came to the waiting room to discuss the results of the heart cath, he told me that the good news was that there was no blockage; the bad news was that his heart is so severely weakened that he is a candidate for heart transplant and sudden death. He went on to tell me that his condition is the result of a virus, probably about 6 months ago. The down side of this is that there was no prevention and there is no cure. Nothing will improve his condition. He told me he would put him on a beta-blocker and restrict his salt intake but beyond that, there is nothing else that can be done.
     He also said that while my husband is a candidate for a heart transplant, he is not eligible for one yet, not until his symptoms worsen. I asked him about walking. The cardiologist shook his head no and said that nothing would improve his condition. I said what about the exercise just for his state of mind and again he shook his head no. I felt that I had been hit with a ton of bricks as he turned and walked away and I was left sitting alone to process the news. I have since spoken with our primary care physician to find out if there is anything else we should know and to be sure that we are understanding everything correctly. He confirmed everything the cardiologist told us, explaining that the cardiologist will be monitoring my husband every 3 to 6 months to see how he is doing.
     I have struggled with lots of questions to which I have found answers here on the Internet, but I continue to struggle with my husband's denial. He is feeling better now that he is on a beta-blocker and feeling better. He is not taking any action to "get our house in order" or to seek information about qualifications for heart transplant or other options. If something happens to my husband before he is put on a transplant list, I will feel that I didn't do all that I should have done to save his life. No one is concerned about being proactive about this but me. I am struggling. I do have a strong faith in the Lord and I know that His strength is sufficient and that life and death are in His hands. I also know that I have a responsibility to do all that I can do to help my husband. Do you have any recommendations for the next step I should take? fdcabot@aol.com


Jon's October 20 reply to Claudia P's October 20, 2000 - Hi Claudia, Here's my advice in a nutshell:

  1. Fire the cardiologist today
  2. Hire a CHF specialist today
  3. Read The Manual
  4. Don't be a stranger here
  5. Don't bother asking your primary care doc about CHF treatment - he doesn't have the know-how to answer correctly

Tom B's October 24 reply to Claudia P's October 20, 2000 - Hi Claudia, I was in your husband's shape last April. In fact, I was in the hospital for my 55th birthday when I learned I had CHF. I was also told I could well need a heart transplant. A few months later I was referred to the local heart transplant clinic but by the time my appointment rolled around, the medications and pacemaker had begun to do their jobs. I was subsequently de-listed.
     Fast forward to today: This morning I walked 3 miles in under an hour around a lake near our home and I am feeling pretty good, thank you! Not marathon status like a few years back, but happy to be hoofing. I'd endorse all that Jon has said and add that there is every reason for optimism. The docs have lots of alternatives to offer you and some work! Please don't despair. Get aggressive in seeking good care and get on the phone to find a CHF specialist. I am living proof that good things can happen. My best to you both, Tom. tbehan@home.com


Ben B's October 24 reply to Claudia P's October 20, 2000 - Hi, Is a beta-blocker the only medication your husband is on? If he is not on an ACE inhibitor then this cardiologist is not just incompetent, he borders on negligent. Some doctors infuriate me. Of course, the PCP confirms what he says, these guys are probably golfing buddies.
     If your husband has an arrhythmia that puts him at risk for sudden cardiac death, the cardiologist needs to have him consult an electrophysiologist for evaluation for an ICD. Or did the doctor say there was no treatment for arrythmia either? ;-) Finally, where do all these doctors get this "six month virus" quote? It is like they are reading from a manual. If your husband's heart has been enlarged for 4 years, this was probably the early manifestations of disease (just my guess). In reality the doctor probably doesn't know what caused it and he should say so, rather than this statement which makes people think they are vulnerable to CM every time they catch the flu.
     Although exercise will not make your husband's condition go away, it is essential to improving his longevity and how he feels. A lot of people do improve and I know, since I am one. Also, although I wouldn't put it past a doctor to make such stupid comments, make sure you are not reading more negativity into the doctor's words just because you are so upset. bdbrinkman@juno.com


Todd, October 24, 2000 - Hi, My dad lives in Fort Myers, Florida. We are looking for a CHF specialist in the area. Any information would help. Also, should he try the Cleveland Clinic in Naples? Thank you for your help, Todd. tkoenig@adsionline.com


Janet's October 24 reply to Claudia P's October 20, 2000 - Hi Claudia, I felt moved to write because your husband's symptoms and diagnosis was so similar to mine. Of course I can't guarantee that it's the same situation, but in 1998 I went to my primary care physician with shortness of breath, a fast heart rate and extreme fatigue. After an echocardiogram I was told I had an ejection fraction of 20% and I must "get myself on a heart transplant list." He then sent me to a so-called cardiologist who told me the same thing, sent me on my way with a sample of BP medicine and no further instructions where I could "sign up" for a heart transplant. I mean it's not like voter registration that they have in malls for Pete's sake!
     I then went to a CHF specialist at St. Luke's in Kansas City, had a heart cath which showed clear arteries but an enlarged heart and an EF of 20%. She said, however, that this was a hasty decision and that great results have been shown with Coreg. Read about it in The Manual. There are other ins and outs of my story that I won't bore you with unless you ask for it but the bottom line is that I just had a MUGA scan done last month and my EF is now 50%!
     At the time of my initial diagnosis I tried to tell my PCP about the St. Luke's doctor's recommendations on Coreg and he just stood there shaking his head and looking at me as if I was the village idiot. He said it may stabilize it but would never improve. Well, he was wrong. I'm not an exerciser so I probably don't deserve to be doing this well. I think it was all due to Coreg. I just don't think your husband's case is that hopeless. Just try to remember that half of all doctors graduated at the bottom half of their class! Write me anytime I can help, Janet. bjatvsmith@socket.net


Karen D's October 24 reply to Claudia P's October 20, 2000 - Dear Irene and Claudia, I hope you don't mind one post to both of you. I am sure both you and your husbands were quite shocked by the doctor's diagnosis. The first thing I want to tell you is that my husband was diagnosed 2 years ago, told that he had to have a heart transplant and that he had only 6 months to live without it. It's now 2 years later and he has been taken off of the transplant list because his medications, diet, exercise, and life-style changes have all brought his EF up and his <Vo2Max up. He's not able to do everything that he used to but his quality of life is good. If you haven't already read The Manual, please go to the Site Index and start there. This site is full of very important information about CHF.
     To Irene, is your husband's doctor a CHF specialist? If not, please think about finding one for him. You asked about a forum for spouses; Jon created this forum for caregivers of CHF patients and there is another forum on this site for those who actually have CHF. I read both forums and have learned a lot from both of them. You also asked about a list of foods to prepare. CHF'ers should be on a low sodium, low fat, no caffeine diet and will be on restricted fluids. This site has lots of good low-sodium recipes, and you will find that you can buy many low or no sodium products and begin to use them in your favorite recipes.
     To Claudia, Bill's CHF was also diagnosed as being viral-related and he was told he was at risk for sudden death too. However, after an EPS study he was implanted with an ICD (internal defibrillator) which will kick in if his heart should start to fibrillate. Jon's advice to you is absolutely right - get another doctor! Preferably a CHF specialist. Your husband should be referred for evaluation to a tranplant center, where they will work hand-in-hand with your local CHF specialist or cardiologist. The first thing Bill's transplant cardiologist said to us when she first met him was that her job is to prevent people from having to have a heart transplant. So far, she has done just that! Karen. bdeit@cfl.rr.com


Deb, October 24, 2000 - Hi, My husband has been on 50mg Coreg twice a day Coreg for over 9 months. I am looking for any information, studies or reports about long term health consequences. I would also like to hear from anyone who has personal experience with long-term use of Coreg. I am also interested in any information about how something like blood donation for males might lead to improved blood qualities and longevity. Thanks for this forum, Jon. It's the best! dakazz@hotmail.com


Jon's October 24 reply to Deb's October 24, 2000 - Hi Deb, Coreg hasn't been in continous use for CHF long enough for long-term studies. I have been taking it for 4 years, I reckon. I don't understand your blood donation question, sorry. Jon.


Janet, October 24, 2000 - Hi, My brother has decided he wants no more medical care because he owes the hospital $130,000. Medical care hasn't helped him anyway, plus he has been unable to leave his home for 6 months, making it impossible to visit the doctor. The doctor says if he can't come in, they are not going to write any more prescriptions for his only drug, which is a diuretic called Demedex. I can't even imagine how he will swell up without this medicine. What I would like to know is if there is any such thing as a compassionate doctor who would make an exception for someone under such dire circumstances? Does anyone know of any natural diurectics that really work? I just don't know where to turn. I would appreciate any suggestions. Swan113@Reachfree.com
 
Jon's note: Why can't he leave his home?


Sherry, October 25, 2000 - Hi everyone, I have not been on the posts lately since I had my fibroid surgery a week ago today. Everything went well and now I am resting at home for a few weeks. I got this computer at home and have been having problems with it from day one. Anyway, my mom has been pretty stable lately. My biggest fear was that something would happen to her while I was in the hospital, but my prayers were answered again and she is safe and sound at home. I couldn't resist not going there yesterday to see my parents even though I probably shouldn't have. She is still pretty weak but I am really trying hard to take every day as a gift. She has been in end-stage CHF for so long, but she has been getting worse and worse lately. Still, each time I think this is the end, she keeps going. Anyway, I am glad to have her for today and glad to be home and resting. I hope everyone is having a good day, Sherry. Ketsel@aol.com


Sherry's October 25 reply to Kim G's October 20, 2000 - Hi Kim, I read your post and related to everything you wrote. My mother is also in end-stage CHF and has been for a long time. We have had emergency room visits almost one every month this year and the staff there all knows us as well. The doctors have told me at least 4 times this year that mom would not be coming home from the hospital and she keeps proving them wrong. I don't know what your mom's exact situation is but my mom walks around the house with a walker but doesn't do much else. At times she is bedridden but she keeps getting the strength back to come back. How old is your mom? I know how hard this must be for you and if you ever need to talk, I am here. From what I have seen with my mom's situation, end-stage is so different for each person. Take care of yourself, Sherry. Ketsel@aol.com


Anna's October 25 reply to Deb's October 24, 2000 - Hi, I may be wrong but I think you may have read studies where donating blood helped some men prevent heart attacks. This worked in cases where a person had excessive iron but wouldn't be likely to have an effect on CHF. snowyegret7@excite.com
 
Jon's note: info on the iron problem can be found here


Kathy, October 26, 2000 - Hi everyone, My husband had a checkup with his cardiodoc because of SOB. They did an echo, chest x-ray and blood work. His EF went from 22% 18 months ago to 50%, and his heart size is very close to normal. His most recent echo before this was one year ago and it showed about 35%. He has a fluid problem now, so he was just put on Lasix. The doc said he's doing so well, he didn't see the need for Coreg for now. He was only on 3.125mg total per day. He is also still on Cozaar.
     He has trouble sleeping; both staying asleep and feeling refreshed. He is exhausted by early afternoon but he still works as an electrician. In a sleep study they did last year, they found he has a light case of RLS and is on carbidopa for that. His limit on salt intake starting now is 2000mg per day, and he is allowed no more than 2 cups of regular coffee per day. If he is still having SOB problems, and is still very fatigued by the early afternoon 4 weeks from now, they will do a <Vo2max test. The cardiodoc spent over an hour with us, answering all our questions and giving us more information on things we can do at home regarding salt, sleep, etc. I feel very comfortable with him and so does my hubby but I don't understand the Coreg change. The cardiodoc's reason was that my hubby is doing extremely well and that Coreg can cause fatigue problems. Does anyone want to comment on this? Thanks! dei@frontiernet.net


Alice, October 26, 2000 - Hi, My husband has class 2 or 3 CHF, with the swelling under control from diuretics. He has been sneezing and had a drippy nose for several weeks now, and the doctor cannot explain it. We were wondering if anyone has had similar symptoms attributed to CHF? primacks@prodigy.net


Jeanette's October 27 reply to Kathy's October 26, 2000 - Hi Kathy, I have been on Coreg for some time now and it does have the side effect of making you very tired. I take 6.25mg twice a day and am constantly tired. One of the many annoying things we put up with when you have DCM and CHF. I am going to have a sleep study done too and hopefully that will result in a positive outcome to relieve my tiredness. Good luck and take care, Jeanette. jeanette841@yahoo.com


Mike H, October 30, 2000 - Hi, My partner is in class 3 CHF and has been a heavy (10 cups daily) coffee drinker until last week. He decided to change to decaf coffee and has felt better since. There has never been any information about caffine or coffee mentioned on this site or with our doctors but it had an immediate effect on him. I asked a nurse about it today and she said that CHF patients should cut way back on stimulants such as caffeine. Are there any others who are aware of this? michaelsoft@hotmail.com


Jon's October 30 reply to Mike H's October 30, 2000 - Hi Mike, Yes. Any substance that alters the heart rate by itself without accompanying activity or inactivity should be avoided: nicotine, caffeine, alcohol, decongestants, etc. Jon.


Katie, October 30, 2000 - Dear Jon and my fellow caregivers, It has been some time since I posted. My husband for 38 years had been waiting for a donor heart for a very long time. He was again hospitalized in late September and on 10/13 had surgery. He did not receive the donor heart we have been praying for but a CardioWest total artificial heart, which is a bridge to transplant. At our hospital I know of 5 current patients who are currently on the device. I must tell you the younger ones seem to thrive with the artificial heart. I have met so many wonderful heart patients and their families, and they all give me so much hope even in these tough first days. I have also met 2 young women who have been blessed with donor hearts. One had a baby after transplant and is doing well.
     I want to thank all of you who have shared your stories over time and I am now using the information and terms to help me understand what the doctors and staff at the hospital are explaining to me each day. It also helps me explain to family what is happening. My husband had some complications with renal failure but this will pass. I will keep you posted. Thank you Jon, for having this site. Lowbigflyer@www.att.net


Dina Rice's October 30 reply to Claudia P's October 20, 2000 - Hi Claudia, I am writing to add one more positive to the many you have heard. My husband was diagnosed with IDCM, CHF and arrhythmias 12-27-98. He had no history and was only 30 at the time. The doctors feel his was due to a virus that caused the heart's weakening, and he was so active at his job that it just built up till his heart couldn't take it anymore. We were lucky that our high school buddy is his PCP and we could call him at home and explain his initial symptoms: swelling feet, not being able to sleep at night, fatigue, and indigestion. He told John to come in the next morning and took one look at him and admitted him into the hospital. He could tell just by looking at his artery pounding in his neck and his erratic heartbeat. After the tests, we found out the bad news. His EF was estimated at 8%. The cardiologist referred us to a transplant doctor in Little Rock 60 minutes away who was supposed to be the best in our area. We were told by a nurse that people with that low an EF usually have 6 months if a transplant is not done.
     I am very pleased with his doctor in Little Rock. He has been maintaining his medications and is now seeing him every 6 months as long as things are going ok. That is a big change from having to make that drive once a week while the medications were being adjusted. He had an ICD implanted April, 1999. It has gone off about 5 times since implantation. We are very lucky he has it. He was told to apply for SSD and we did the day after he was released from the hospital. Luckily, we were approved the first time. That is the worst for John: being 30 years old and not being able to work. He has good days and bad days, of course.
     My main problem is that people bug us all the time to be more proactive about getting on a transplant list. They just don't get it that this really is a last resort measure. As long as he is doing fairly well on medication, then we are ok. He will probably not be a great candidate due to his size of 6 feet 5 inches tall, 300 pounds. People just don't understand that. I do have one question. Shouldn't he be tested for kidney and liver function after being on all these meds for so long? He is on Coreg, Lasix, Cardizem, Cordarone, Vasotec, K-Dur, Diazepam and Coumadin. He said they didn't test him at his appointment last week. riced@hsmail.k12.ar.us


Jon's October 30 reply to Dina Rice's October 30, 2000 - Hi Dina, I am glad to hear your husband is doing so well! Although liver function problems are more common with cholesterol lowering drugs, kidney function should be tested at least every 3 months in someone on diuretics. My doc checks liver function on me even though I don't take cholesterol lowering drugs; it's a good idea. Jon.


Barb L S' October 30 reply to Bill D's October 11, 2000 - Hi, I have been sick with a virus, which Ali caught from 3 days of day care. Our whole family was sick. Thank you everyone for your replies. The support system I have is beautiful. Many of you are my support system. So thanks. Bill, thanks for your concern and feedback. I don't understand doctors. However, with my dad it is just the opposite situation. Ever since my mother passed away, my dad has not only been heartbroken but has also started looking for things to go to the hospital. We knew because he normally wouldn't go near a doctor if we gave him a million bucks. When he's really sad and starts to cry, the next day something is wrong. He's very lonely and he wants to be with mother. That's exactly how he says it. As for his cataract surgery, he just wouldn't take no for an answer and went.
     We have not mentioned anything about a pacemaker yet. A few days ago, dad's BP was back up to a good number and his cardiologist said it looked like he was beating the odds. For some reason he took our dog Sandy to the vet on Thursday. As he was walking out he slipped, cut open his eye and broke his arm. He wouldn't take an ambulance and when my sister got to the vet's office he was very scared and was crying. He was saying that he was sorry. This really tore us up because we are now facing the reality that he is much older and cannot do many things on his own. I felt really bad because I can't go into a hospital setting without getting sick. I feel I'm not doing what I need to be doing for him and that hurts. He had 5 stitches around his eye and his arm is in a cast. He cannot move his arm for a month and it's driving him crazy. My dad is not one to sit still for long.
     Thanks for letting me vent. What bothers me is that the doctors - with the exception of his cardiologist - talk to him as if they were speaking with a 2 year old. They show no respect for him. It's a shame how some medical personnel treat the elderly. Bill, thank you for your concern. God bless, Barb. Alikeys@hotmail.com


Barb L S' October 30 reply to Kat H's October 11, 2000 - Hi Kat, You're right that this is all new to him because not only did he lose our mom, he also ended up with his own heart condition 9 months after I did. He's much better with that now and is looking for a substitution because he's lonely. I am not saying that his illnesses are not there or not real. They are. It's just things like the cataract surgery that his main doctor said he didn't need done, and my dad calling at night very nervous and asking to be taken to the hospital may just be him asking for someone to speak with. We understand that and would rather spend time with him and not go to hospitals for no reason. Almost all these hospitalizations could have been avoided. We respect him very much and never downplay anything he's going through so either my sister or my fiance will take him. I talk to him when he's upset because I understand the most because I have illnesses. My sister has some things going on but spends time with him and talking with him and doing everything for him. I respect her immensely.
     I'm adopted and it's been strange because everything my parents got I also got. My sister has not. I'm like you in some ways. I do not focus on myself so I've started doing other things to get out of myself. There once was a time that I talked a lot via computer about my illness but within a 2 year period I didn't talk about anything. I guess I needed to do that, because it served its purpose. Everything is pretty much out of me and I'm at peace with my illnesses. My dad though, does need what your father-in-law needs and that's understanding and compassion. With my dad many things are reversed because he left his strong Italian mother and married our strong Polish mother! He's never done anything by himself or for himself. None of us knew this until after our mom had passed on. It takes a lot of patience, love, compassion and understanding. He and my mom taught us these values and now we are able to give back to our dad. It's the doctors who downplay everything and talk to him as if were a 2 year old, with no respect. One thing I've learned in life is that no one has to like anyone but I think we need to respect them. That's a principle I live by. Doctors need to have respect for their patients no matter what theie age. Kat, thank you so much for your prayers and thoughts and you will definitely be put in mine. God bless, Barb. Alikeys@hotmail.com


Barb L S' October 30 reply to Davida S' October 11, 2000 - Hello Davida, I've been sick now for 3 years. In my first year; my fiance brought home CoQ10. I was leery of taking it because of all of those new medications. As you know, at first, such an illness can be very overwhelming and scary. I decided to give it a try in my second year. At that time the cardiologist I had didn't feel too strongly about it one way or another. He had said the same thing that someone else has already posted: he didn't think that it would make too much difference in my overall health. Somewhere towards the end of my second year, I started taking it on a regular basis and I think that when I started to get better back in 1999, it was due to CoQ10 and Aldactone. Today, the CHF specialist I have discontinued the Aldactone. My EF is up to 47% and I still take CoQ10 and think it helps. It definitely can't hurt. Good luck and God bless, Barb. Alikeys@hotmail.com


Barb L S' October 30 reply to Walter K's October 12, 2000 - Dear Walter, Thank you for your reply. That is one thing that we are concerned about also. Our dad is on Coumadin and last Monday he called me up because his nose starting bleeding for no reason. I called my sister and she called the nurse and he had to come off of one of the medications for his eye surgery for 2 days. It seems as if the same thing happened with him. The eye surgeon should never have given him this medication in combination with Coumadin. Also, I'd like to say at this time for everyone to please ask your doctors what they are giving you. I do all the time. If I'm sick enough that I can't ask on my own Herb asks for me. The eye surgeon gave our dad visteral in combination with a pain med before giving him general anesthesia. We could have lost him. For his arm that doesn't hurt him that much they (he says this) they prescribed Tylenol with codeine, which we never even had filled. He's 82 and loses his balance. He needs to climb stairs to go to the bathroom and still uses Lasix even though he's gotten better. Our grandfather actually passed away by falling down the stairs and we don't want to repeat history.
     I'd like to thank anyone that prays for Anthony, who is Paula's 2 year old son, and for Paula. We soke today for quite a while and she was crying. She just couldn't believe all the e-mail and support she was getting. She is going to try and get a second opinion too. God bless everyone here, Barb. Alikeys@hotmail.com


Deana, October 30, 2000 - Hi, I think my mom may have CHF. She is 51. She is scheduled to see a cardiologist soon. I've read that CHF patients can reverse the disease but then I read that only 50% live 5 years from diagnosis. Can anyone clear this up for me or direct me to a site with accurate info? Thank you. My prayers are with all of you and your loved ones. DMB3@att.net


Ben B's October 30 reply to Dina Rice's October 30, 2000 - Hi, I'm glad your husband is doing well. If I recall, the last time you posted his EF had risen to around 50%. Is this true? If so, I don't see how he would consider a transplant. These people really don't get it. I don't know if it is true of these people or not but sometimes I think the people that push transplant are really saying, "Why don't they slap in a new heart so he'll be 100% better and start bringing home the bacon again?" There is probably no way to inform these people since you are competing with the health media and part of the medical profession. Keep on posting every so often; it is encouraging for the newcomers. bdbrinkman@juno.com


Barb L S' October 30 reply to Jon 2's October 16, 2000 - Dear Jon2, I just wanted to say that I am sorry you lost your mother. I know what that feels like and I also know that no matter what intentions are said at this time, time takes time. If you ever want to talk I'm here. God bless, Barb. Alikeys@hotmail.com


Barb L S' October 30 reply to Irene Bailey's October 20, 2000 - Hello Irene, I have CM, CHF and other illnesses also. You've definitely come to the right place. Every question you have can actually be answered here and it wasn't until I was well into my second year of illness that my fiance Herb found Jon's Place. It helped us find many answers. He will need a good CHF specialist and now Jon has a list of doctors and info on healthy eating and lots of stuff. I just wanted to welcome you. I see how my family feels every day. This is still where my fiance, daughter and sisters come for support. For medical questions Herb always goes to my CHF specialist, partly due to my being weak and partly due to not being able to remember a lot of stuff, as well as his love for me and our family. As far as medical stuff I'm not a doctor so talk with Jon or anyone else here. They can point you in a good direction and everyone is ready, willing and able to help. Just hang on, ok? God bless, Barb. Alikeys@hotmail.com


Davida S' October 30 reply to Dina Rice's October 20, 2000 - Hi Dina, Your story sounds similar to mine and my husband's, who has CHF. He was diagnosed at 10% EF or lower. He is now somewhere between 35 and 40%. We did not want to hear anything about transplant because it was so overwhelming. We switched doctors to find one who had a more optimistic approach; Best thing we ever did. He was not in a rush to put Dan on the transplant list, which helped us breathe more freely and clear our heads. We approached this new doctor a month later and asked if Dan could be put on the transplant list. Since his EF was still low, the doctor said it wasn't a bad idea that we approach it as a safety net. With this safety net attitude it was easier to deal with but it was still overwhelming meeting the transplant team and talking finances, and getting pre-approval from our HMO. It was worse on Dan, I am sure but we don't regret this. You can always come off the list once improved to acceptable readings but if things take a turn for the worse you want to be holding a spot on the long line for a heart. What I am suggesting is to get your husband listed, especially since as you suggested his size may limit his options. His odds improve the longer he is stable and on the list. I know more than anyone what it is like to have a young healthy strong husband whose life has changed through a virus. We had only been married 3 months. We didn't even get to start our family as planned but as God continues to be with us, we pray for a bundle of joy in 2001. It is just a safety net. Please consider using it. cavalier_1@msn.com


Barb L S' October 30 reply to Alice's October 26, 2000 - Hello Alice, I come here for my dad and for others' stories of hope. I find a lot of hope in this forum. I've had CHF for over 3 years now. I don't understand why your doctor has no clue but at the same time I understand why your doctor has no clue. I constantly have a runny nose and it's been explained to me that because my immune system is not what it used to be, I'm more prone to colds, virus and flu. Maybe one of these things is going on. Did you or your husband ask your doctor? This is the flu season. I wish you the best and ask if he can be seen again. I've been catching everything since the end of August and I've just gotten over everything. God bless, Barb. Alikeys@hotmail.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.

Talk to Jon Site Index