The paperwork never ends The Archives
Loved Ones - December, 2000 Archive Index

Bill D's 12-1 reply to Jon's 11-30      getting prescriptions refilled in Florida
Jon's 12-1 reply to Bill D's 12-1      that's very similar to my situation
Katherine Johnson 12-1      seek support forum for type II diabetes
Mike W's 12-1 reply to Debbie's 11-30      I am a bit confused
Debbie's 12-2 reply to Mike W's 12-1      he won't see a doctor & I am worried
Debbie's 12-2 reply to Bill D's 12-1      he won't see a doctor & I am worried
Frank S' 12-2 reply to Debbie's 12-2      someone should take charge
Carol 12-7      sure gets hard sometimes
Bill D's 12-7 reply to Debbie's 12-2      those prescriptions & more
Lee B 12-7      questions on transfusions, anemia & more
Cathy 12-7      update on my son Greg
Vonnie 12-8      seek info on what to expect
Debbie's 12-10 reply to Bill D's 12-7      about my brother
Bill D's 12-10 reply to Vonnie's 12-8      carrying excess fluid
Barbara M 12-11      hoarseness, questions about my mom
Bill C's 12-12 reply to Barbara M's 12-11      hoarseness
Pat 12 -14      meds induced cough - what to do?
Ellen's 12-15 reply to Pat's 12 -14      ACE inhibitor cough experience
Nadine 12-15      questions about what to tell our children
Jons' 12-15 reply to Nadine's 12-15      what we told our child
Beverly C's 12-15 reply to Pat's 12 -14      coughing, drainage
Vivian G 12-18      loss of taste after bypass question
Liz O 12-18      seek CHF info
Peggy 12-18      seek others with CHF from toxins exposure
Joanne C's 12-18 reply to Nadine's 12-15      telling kids about your CHF
Walter K's 12-19 reply to Vivian G's 12-18      taste problems and CHFmeds
Aganita V 12-21      digoxin and furosemide dose questions
Jon's 12-21 reply to Aganita V's 12-21      dose, questions
Mary T 12-22      has anyone been on dialysis due to CHF?
Ben B's 12-22 reply to Aganita's 12-21      a-fib
Karen P's 12-23 reply to Mary T's 12-22      dialysis experience
Blake 12-23      organ donation experience
Katie 12-23      seek site of different flavor
Aganita V's 12-23 reply to Jon's 12-21      update
Jon's 12-23 reply to Aganita V's 12-23      salsalate, specialists & more
Mary T 12-23      update
Donna C 12-25      how do I talk to my mom?
Sherry 12-25      update, merry Christmas
Betty 12-26      merry Christmas & more
Anna N's 12-26 reply to Donna's 12-25      coping, info sources
Dhana 12-27      seek help for my sister with CHF from chemo
Sherry 12-29      update, prayer request
Aganita V's 12-30 reply to Jon's 12-23      meds juggling, update questions
Barbara P J's 12-30 reply to Nadine's 12-15      children understanding CHF
Jon's 12-30 reply to Dhana's 12-27      finding others in the same boat
Jon's 12-30 reply to Aganita V's 12-30      drug changes, thyroid problems, doctors

Bill D's December 1 reply to Jon's November 30, 2000 - Hi Jon and Debbie, My doctor is allowed to give me prescriptions that last one year. Instead of circling 1 or 2 or 3 refills, he circles PRN. After the year is up, I have to see him to get another prescription. That's the law in Florida. Bill D.

Jon's December 1 reply to Bill D's December 1, 2000 - Hiya Bill, That's similar to my situation except that I don't have to see my doctor when the year is up on a PRN Rx. He can mail me the prescription, which in fact he does, since I use a mail order pharmacy. ;-) Jon.

Katherine Johnson, December 1, 2000 - Hi Jon and everyone, I hope this finds you all doing well. I used to seek guidance and support here for my mom, who passed away 2 years ago. The reason I'm writing is to find out if anyone knows of a similar web site to support and inform people with type II diabetes. Please advise, Katherine J.

Mike W's December 1 reply to Debbie's November 30, 2000 - Hi Debbie, I'm confused! Why can't you or your brother just call and make a doctor's appointment? Is it that your brother is refusing to go to the doctor?! Excuse me if I'm being thick. Peace, Mike Wafkowski.

Debbie's December 2 reply to Mike W's December 1, 2000 - Hi, My brother refuses to see the doctor. He had a very bad experience with him and now feels that his life is over and is frightened to see one. I wish it was that easy. I have even told him I would go with him to find a new doctor and everything. My main concern is that he has all the symptoms of a person in end-stage CHF and I sit here helpless. Thank you.

Debbie's December 2 reply to Bill D's December 1, 2000 - Hi, The problem with my brother is that I have talked to his doctor and he said he has not seen him in 2 years and is not prescribing the meds to him. So someone is and that is what I am trying to find out. He has major swollen and black feet and ankles, blue fingers and sores all on his arms. His stomach is bloated, he walks so slow like an old man, and he is only 45. That's why we kept hoping that when his meds were gone, he would have been forced to see a doctor. Thanks for your info.
Jon's note: It sounds to me like he is not taking any meds

Frank S' December 2 reply to Debbie's December 2, 2000 - Dear Debbie, It sounds like everyone is allowing your very sick brother to control what could be a matter of life and death. If the same situation involved me and a very sick brother who did not seem to care about living or dying, I would immediately get the paramedics involved, get him to an ER and while there solicit the aid of a new and better doctor. My guess is that your brother is scared half to death, and unless someone who is qualified takes charge, his fear could get the best of the situation. Later, Frank Smith.

Carol, December 7, 2000 - Hi, My husband was diagnosed with CHF last February. His EF was 15%. It is now 20%. He has been a non-smoker now for 2 months and hopefully he will be on the heart transplant list in 3 to 4 months. It was very hard for him to quit smoking. He has gone downhill since he quit and he can't walk to the mailbox or much of anything. He can't sleep and it is very depressing around here. I try to keep things happy and cheerful, but it's hard sometimes. Thanks for listening.

Bill D's December 7 reply to Debbie's December 2, 2000 - Hi Debbie, Could you look on one of his pill bottles and see what date they were filled? If it's in the last year, you should see the doctor's name who filled them. Maybe he made a copy of the prescription and just changed the date. You could call the Pharmacist but if your brother did copy the prescription he could get in trouble. I know how your brother feels about hospitals. I am frightened of them too, with good reason. Still, I know have to go. If he gets sick enough, he'll know it too. Bill D.

Lee B, December 7, 2000 - Thank you Jon for this wonderful service you provide. Hopefully, the flu is not being too hard on you. I have a question for anyone with experience with anemia in relation to CHF. My husband is about a class 3-4 and is also a diabetic, with onset of kidney failure. He just had his second transfusion in the 2 weeks. He is already on iron pills. Is anyone else taking other medication to prevent the need for transfusions? Any other words of wisdom would be appreciated. Take care everyone, Lee B.

Cathy, December 7, 2000 - Hi Jon and everyone, Thanks for the support and prayers. My son Greg is not doing well and it seems all downhill but we still have hope. His triglycerides are 965 and that is down from 1000. It just seems we are not getting any answers but lots of test and repeating some of the tests. Thanks to those who sent him cards and letters. I am still working to get him online, maybe by Christmas. Right now, we only pray for the doctors to find an answer and get the right meds. I am now studying the cholesterol stuff. I will keep you posted and a prayer goes out to you and the family, Cathy.

Vonnie, December 8, 2000 - Hi, I am concerned and confused. My mother is 76 and has an artificial heart valve which is leaking. She also has a blood clot in her heart. At this point, her legs have retained a lot - and I mean a lot - of fluid. According to her body weight, she has over 35 extra lbs of fluid. Any type of surgery has been ruled out because of the risk for that clot to move. Her future doesn't look too bright. I was wondering if anyone could help me with what she will experience. Her doctor doesn't say too much, and I am one who needs to know the expectations. Thanks, I am enjoying this site.

Debbie's December 10 reply to Bill D's December 7, 2000 - Hi Bill, I think you are right that he has made copies of his prescriptions. I have talked with the doctor whose name is on the bottle and he said he is not prescribing any meds to him. The sad thing is that he is swelling up like a tree stump. I have tried everything to get him to a doctor and have had no luck. I really think if he does not see a doctor in the next few months, he will be gone. I have researched everything I can about his CHF and have to realize that I cannot do things on my own. He needs to want the help. Hopefully he will suffer enough to go to the hospital and it will not be too late. Thanks for all your help, Debbie.

Bill D's December 10 reply to Vonnie's December 8, 2000 - Hi Vonnie, Does your mother go to a cardiologist? Does he prescribe Lasix or one of the other water pills to get the water off? 35 pounds of water equals over 4 gallons! It must be a load that's hard to carry around! Bill D.

Barbara M, December 11, 2000 - Hi, I've just discovered your site and would like to ask for your opinions. My Mum is 71 and 8 weeks ago suffered a massive heart attack; her heart stopped beating 3 times. Initially she seemed to be making a good recovery but she now seems to be going downhill rapidly. Her feet and legs are swelling and if she walks into another room she has to stop to try and get her breath back. After reading a lot of articles, I am beginning to suspect that the heart attack has left her with CHF but until she has further tests, the doctors are not able to tell us anything. She was due to have a stress endurance test but the hospital refused due to her breathing difficulties and said they would re-arrange for a scan. She also has a very hoarse voice and the hospital doctor has referred her to an Ear, Nose and Throat specialist. She is now very worried that the hoarse voice could be something serious and I am wondering whether this is something that can sometimes happen? She was a smoker but has stopped completly following the MI. She is suffering from depression quite a bit and I would just like to put her mind at rest if I could. Many thanks for the site - I don't feel as isolated as I did before. As much as you love your parents, it's not easy for the child to become the parent.

Bill C's December 12 reply to Barbara M's December 11, 2000 - Hello everyone, Barbara, on the hoarse voice deal, my aunt took cardiac rehab last year and the nurse stopped my aunt several times telling her that it was a sign she was overworking her heart.

Pat, December 14, 2000 - Hi, I am needing help for my husband. He was diagnosed with FDC last July. He has developed a cough. The doctor said it was from the medicine he is taking, Vasotec. It keeps waking him up at night. Any suggestions would be welcome. Thank You.

Ellen's December 15 reply to Pat's December 14, 2000 - Hi Pat, My husband also developed a cough from taking Vasotec for awhile. He was started out at a low dose, which kept increasing by 5mg until he got up to 20mg. At 15mg he had such a terrible cough, but once he got up to 20mg and got adjusted to that, he was okay. He has been taking Vasotec for 3 years but I remember the cough was so bad that he asked to be switched to a different medication. He ended back with Vasotec and until he reached 20mg he just put up with the terrible coughing. He now takes 20mg twice a day. Hang in there. It's frustrating but once he reaches his maximum dose, the cough should dissipate.

Nadine, December 15, 2000 - Hi, I am in Canada and my husband was just diagnosed with severe left ventricular systolic dysfunction and CHF. He is only 40 years old and we have 2 kids. What do you tell your kids? He is a non-smoker, non-drinker, and has normal cholesterol levels. He had two MIs in January of 2000, which now I'm thinking were from this. Any advice?

Jon's December 15 reply to Nadine's December 15, 2000 - Hi Nadine, It's more likely that his 2 MIs caused the CHF. I was 36 when I got CHF and I think my daughter had just turned 12. We toned down all the bad news for awhile but she caught on fast and got mad. We then sat down and asked her how informed she wanted to be and she said she wanted to know everything as it happened. Sometimes it scared her but overall, it was a wise decision and I'm glad we went along. She began to adjust to my "new life" soon after we laid it all out for her and answered all her questions. Naturally, kids - like adults - are all different, but this worked for us. Jon.

Beverly C's December 15 reply to Pat's December 14, 2000 - Hi Pat, I have given this tip to Ginger and it worked for her as well as it worked for me. I did not post it because it sounds yicky, but if I can help you out, I will tell you. When I wake up with that dry cough, I take a few sips of water to moisten my throat and then suck the phlem (the stuff) that is in my throat up. You will see that the stuff you spit out into the kleenex will dry to a hard consistency when you go to throw the tissue away the next morning.
     It seems that the stuff causing me to cough is a dry powder texture and when I moisten it, I am able to get it out of my throat better by sucking it out rather than trying to cough it out. My grandmother taught me this trick when I had drainage going down my throat. It really works and kept me from having to quit my ACE inhibitor or give up sleeping! Good luck, Beverly.

Vivian G, December 18, 2000 - Hi Jon, I have been reading this message board since my husband had his heart attack in May, 2000. He had quadruple bypass on May 30. He is doing pretty well on his meds, but he says his food doesn't have any taste. This problem started with his stay in the hospital but it has not improved since he has been home. He is losing weight because food doesn't taste good to him. The heart doc didn't see any connection to his meds. He takes Lotensin, Lasix, metroprol, Lanoxin, slow-mag, potassium, Coumadin, CoQ10 and various vitamins. Do you have any experience with this problem? Thank you for the help your message board gives to all of us. Vivian.

Liz O, December 18, 2000 - Hi, A 33 year old man lives with my hubby and I. He has been diagnosed with CHF. We are new to the problem and when I found your chat room I thought, "Maybe I can get some help and answers!" I don't know where to look for information on such a young person with this condition. I don't know what to expect or what questions to ask. This is like having my own child being ill and I am quite lost. Perhaps I'm in the wrong "room" but then again, who would be able to direct me to the avenues I am looking for? I live outside of Sacramento, California. Jeffrey is a friend of one of my kids. He lived on the street for at least 10 years and has lived with us for the last 3. Any information would be helpful. So far the things I have found are not very promising. Thanks for listening, Liz O.
Jon's note: Have you read The Manual?

Peggy, December 18, 2000 - Hi, My husband was diagnosed with DCM and CHF in November and has an EF of 30%. He is a master plumber and has been exposed to toxin chemicals for the last 5 months. The cardiologist said that the chemicals could have been part of the problem, but we will never know! Is there anyone out there who has been exposed to toxin chemicals and has been dianosed with DCM and CHF? We are real curious!

Joanne C's December 18 reply to Nadine's December 15, 2000 - Hi Nadine, What you decide to tell your kids will depend on their age and their personalities. Don't be afraid. Being open provides them with the ability to ask you or your husband questions. Kids are bright and I am sure they know something, or maybe exactly what is going on with their Dad. How you present them the opportunity to discuss it is up to you. I have chosen to be completely open with my 8 year old. I probably won't know if this is good or bad for years but I do know that if she gets frightened, she knows that we are here to help. Joanne C.

Walter K's December 19 reply to Vivian G's December 18, 2000 - Hi Vivian, I have not had a transplant but have just posted about taste problems on Jon's other forum. Briefly, I have had a terrible taste in my mouth for awhile and though I don't mention it in my other post, it was preceded by a period during which I was sure I had a diminished sense of taste.
     My doctor said yesterday the bad taste could easily be caused by the ACE inhibitor I was on, and that all ACE inhibitors can cause this. Your husband is on Lotensin and that is also an ACE inhibitor. I am also on metropolol, which your husband is taking but my doc did not mention that as a possible cause. Anyway, I have been switched to Losartan, which is not an ACE inhibitor but is supposed to have similar medical benefits without the taste side effect. I do not believe the taste problem with ACE inhibitors is very common but you might ask your doctor about this as a possible cause.
     I was on 50mg Prinivil daily. It is supposed to take up to a month to get over this taste problem, if the ACE inhibitor is the cause. Best of luck, Walter.

Aganita V, December 21, 2000 - Hi, My friend, who is nearly 76 years old, has had a diagnosis of CHF for the past 4 years. She has done relatively well on her medications, which include Losartan, 50mg Coreg, 0.50mg digoxin, furosemide, Coumadin, and a few others. However, at her last visit to the doctor, she told him she had been feeling faint more often, as well as feeling much more tired. When he listened to her heart, he said she was in atrial fibrillation and he cut her digoxin in half from 0.5mg. I think I have that right. She was taking 2 yellow tablets a day and now will take one. He also thought this might be from dehydration and told her to take one less furosemide. She was taking 1.5 tablets twice a day. I have several questions for those of you in the know.
     Was she on an unusually high dosage of digoxin? At one time, she was taking 3 tabs as prescribed by her internist, but her cardiologist found out that she was approaching toxic levels and cut her back to two. Could too much digoxin cause a-fib? She has been taking the two tabs separately - one in the AM and one in the mid-afternoon. Is this usual? Most importantly, since the doctor told her about the a-fib, she is afraid that she is about to die. Is this likely, or is it possible to correct the problem and gain more time?

Jon's December 21 reply to Aganita V's December 21, 2000 - Hi Aganita, a-fib is not lethal in itself. It gives one a tendency toward stroke due to blood clots in the heart. A-fib prevents "full" or "complete" heart contractions. This means that less than the usual amount of blood is pumped during each heart beat. That's not dangerous in itself but if blood stays in the heart chambers for too many heart beats in a row, it may start to coagulate or thicken (clot), thus forming a blood clot that can move, blocking an artery and causing a stroke. On the upside though, she is on Coumadin, and that drug is meant specifically to lessen this very risk.
     You have us at a disadvantage on dose. Three tabs can mean the same as one tab depending on the dose of each tablet. Digoxin and furosemide are generic versus Lanoxin and Lasix which are brand names for the same drugs, so it's a toss up what color means what dose without knowing the manufacturer. I could guess from what you wrote but I hate to guess on such an important matter. Can you give us the exact dosages? In general, digoxin dose is decided primarily by 2 things: effectiveness at relieving symptoms, and by blood levels ("dig level") as measured by blood testing. 0.5mg is definitely high but not unheard of. However, if she's not having her blood tested at least every 3 months (and dig level requires you take meds a certain number of hours before blood is drawn), then it is too high. Jon.

Mary T, December 22, 2000 - Hi all, Jon, it seems things have gone bad here very quickly. After my first and only post here, my husband's kidneys started to take major hits. The docs have been watching him very very closely but on Monday of this week he was admitted to the hospital and given the "get your affairs in order" speech. What we didn't realize was that they did not think he would even survive the night but he did. He is on a drug call alburetine (?), which helped greatly but we need to get back on the drugs.
     My question is, "Has anyone had to go on dialysis because of cardiomyopathy?" His kidneys are not bad but they are not getting enough blood because of his weakened pump (heart). If anyone has or can shed any insight on the quality of life with this I would appreciate it. We really want to make a good decison here. Thanks for the help, Mary.

Ben B's December 22 reply to Aganita's December 21, 2000 - Hi, Nobody who has a-fib should be worried about dying from it. It is extremely treatable. Remember that Bill Bradley has it and it was considered basically a non-issue even for a possible president. It is very common and I don't know why a doctor would not make sure a person wouldn't be overly worried about it. Of course I understand it has some side effects but it is not a big risk factor for SCD in the same way that ventricular arrhythmias may be. When will doctors start to explain this stuff to their patients?

Karen P's December 22 reply to Mary T's December 22, 2000 - Hi Mary, My husband was diagnosed with CHF 2 years ago and about one year ago his kidneys began to fail. We spent the last year trying to balance the heart treatment vs the kidney treatment. They often times oppose each other. When his kidney function reached the low teens, my husband was given only 3 months to live if he did nothing so he had a catheter surgically implanted in his abdomen (a reasonably minor procedure) and he began peritoneal dialysis shortly after that.
     This is not the hemodialysis that is done 3 times a week at a dialysis center. The doctor did not think my husband's heart could withstand that type of dialysis. This dialysis is done 3 times a day (for others 4 or 5) at home; Every day. We expected this to be a huge adjustment, but in reality it is not. He no longer feels so sick, like he did when the kidneys were so bad. He does still have heart failure of course and is still quite tired, but his quality of life is greatly improved and he manages the dialysis by himself and has tremendous support from the dialysis center.
     We have not tried to travel yet, although many do it very successfully. Some do their mid day dialysis at the workplace, too. My husband is retired due to his heart failure and 20% EF. He is 60 years old. I hope this gives you some insight. As we are quite the homebodies, the adjustment probably has been easier than for those who are on the go a lot.

Blake, December 23, 2000 - Hi, I am blessed to be here this holiday season. Organ donation saved my life. I would not be here today if it were not for a family caring enough to give a complete stranger life. I was visiting someone on the waiting list today in the room that I waited in, and emotions came back hard. What got me through my wait was God, Jesus and realizing that no matter what, things can be worse. I know what it is like to be dying, and having a positive attitude helped me lots. (Even though I hated the fluid restriction) God bless everyone and have a merry Christmas.

Katie, December 23, 2000 - Hi Jon, My husband had cardiomyopathy and went to the assisted device. He lost the battle recenly. I have appreciated your site over the years. Now I am starting to have questions of how things could have been different. Do you know of another site where I might find others who lost loved ones to CHF?

Aganita V's December 23 reply to Jon's December 21, 2000 - Thank you and also Ben for your prompt replies. Eris was taking 2 digoxin (Lanoxin) tablets of 0.125mg every day but the doctor who saw her on Tuesday told her to take only one to see if that helped her a-fib. He also told her to cut back from three 40mg furosemide tablets in a day to two 40mg tablets in case she was dehydrated. This doctor is actually her pulmonary doctor and it was only the second time she had seen him. She has done that but seems to be retaining water and plans to begin taking the 3 furosemide tablets again tomorrow.
     Since that visit, we discovered that a drug that Eris' primary physician prescribed for arthritis pain - salsalate. It has many of the same properties of aspirin when it comes to affecting the clotting factor of blood. This is strange because the doctor specifically said that she could take this even though she should not take aspirin or ibuprofen. I have now read that salsalate can interfere with Coumadin, and can also cause faintness, tinnitus, headaches and several other symptoms Eris has been experiencing. For a long time her blood clotting levels were right where they should be but lately have been off in one direction or another. The blood test on Tuesday came back at 3.5 and she was told to go from 2.5mg five times a week and 5mg two days a week to 2.5 six days. It was after that we discovered the problems with salicylate but we haven't been able to get in touch with the coagulation nurse because of the holidays.
     One thing that worries us is that her doctors do not regularly order tests to determine dig or any other levels except clotting. Not too far back her cardiac doctor did order such a test and it was found that her digoxin levels were almost toxic. That was when she was taking three 0.125 digoxin per day as prescribed by her primary doctor, which was cut back to 2, and now 1. She has never been given a test where she was told to take her meds at a particular time though I think she was told to come in early before taking her meds or any food.
     Lastly, she has been having occasional heart pain or pressure in the past few days. It has responded to nitro but is very frightening. Thank you very much for your help Jon, and have a wonderful Christmas.

Jon's December 23 reply to Aganita V's December 23, 2000 - Hi Aganita, It would be a big plus for her to see a CHF specialist if at all possible; A big plus. I looked up salicylate because I thought it was aspirin. Here's what Grey's Medical Dictionary says: "A group of chemical substances with anti-inflammatory properties which includes aspirin, choline salicylate, magnesium salicylate, sodium salicylate and salsalate." Looking further, I discovered that salsalate is a component of salicylic acid (aspirin). I am in no way an expert but would question salsalate being taken if also on Coumadin. I'd get another opinion on that one, if it were me (which it isn't <g>).
     Blood testing every 3 months is pretty much mandatory for those with CHF on standard meds, all of which can have serious side effects. The only way to prevent those side effects is to check the blood and urine at regular intervals. Again, a CHF specialist would be most likely to know this and see that it was properly done. I hope others post with some advice and comments because I'm all tuckered out and my poor, lonely brain cell is going to take a nap now. ;-) Jon.

Mary T, December 23, 2000 - Hi, The drug was dobutamine. After 24 hours of weaning he has gained 3 lbs and because of the weather, no one was there to help him cheat. I must admit if someone is there and they have a drink with them he generally gets a sip but at the present, other than his IV fluid he gets no liquids, so it's very difficult not to feel sorry for him. On the other hand I have to reinforce to him that if he cheats, the doctors get a false reading on what's happening. It's off to the Samaritan Hilton (as we fondly call the hospital) to check things out. It's a bad time of year to be in the hospital here. The weather often prevents one from traveling. I think tomorrow I will just bunk out there. Thanks everyone, for the e-mail.

Donna C, December 25, 2000 - Hi, I found your site by accident and am very impressed with the information posted. I have recently become a caregiver to both my parents, 4 months ago. My father is diabetic. My mother has been diagnosed with CHF as well as other complications. I recognise that she is on a downward journey and the doctors say there is nothing they can do at this point, however I am unable to make her comfortable and stop her from crying. She is extremely depressed and this is affecting my father's health as well. I am unable to get any response from her doctor when I leave messages. I am new to all of this.
     Where do I start to get answers? Maybe she can be helped and I'm not aware of it. How do I begin my research? What questions should I ask her doctors? What meds should I check to see if she is taking the right ones? How do I support her emotionally? She keeps saying no one knows how she is feeling, then she shuts us out. How do I open this door? Thank you for listening.

Sherry, December 25, 2000 - Hi Jon and everyone, I have not posted in awhile but have been reading faithfully. Things with my mother are still wonderful and stable, something the doctor just cannot explain. My dad has been diagnosed with multi-infarct dementia. He had a small stroke recently and his memory is failing. He does bizarre things but not all the time, so I try to be thankful for that. He is still my father in many senses, and yesterday we all celebrated Hannukah together at home instead of at the hospital for the first time in many years. This New Year's eve will be their 54th wedding anniversary. I have a lot to be grateful for, especially finding this site and sharing my life with you all. I want to wish everyone out there a merry Christmas or happy Hannukah and a wonderful New Year filled with blessings and health. May G_d bless all of you and your loved ones, Sherry.

Betty, December 26, 2000 - Merry Christmas and happy New Year to everyone. Thanks Jon, for this wonderful site. I have not posted previously. I frequently read and have found the information extremely informative and helpful. My husband is presently waiting for heart transplant. He has been on the waiting list since June, 2000. However, we have a long history of dealing with CHF. At least we pray for the strength to accept all the things that can't be changed and continue to enjoy each minute the Lord gives us. Again, thanks for this site and merry Christmas.

Anna N's December 26 reply to Donna's December 25, 2000 - Hi Donna, I'm sorry to hear of all the troubles you and your parents are having. If you havn't read The Manual yet, do that first and the read everything else on this site. Does your mom have a CHF specialist? If she doesn't, I would try to find one. Also, there's a good book called Success With Heart Failure, which I found very helpful. I found it at Good luck in finding something that will help and in dealing with all this. Remember to take time for yourself, too.

Dhana, December 27, 2000 - Hi, My sister - who had a bone marrow transplant 6 years ago - has been diagnosed with congestive heart failure. They say her heart is damaged from all the chemo. So far the doctors really haven't been able to help her. She can't sleep, breathe or barely walk from room to room. I am desperate to find something to help her and to relieve her pain. If anyone has any ideas please, please let me know. Thank you.

Sherry, December 29, 2000 - Hi everyone, I just wrote a post a few days ago saying how well my mom was doing. Well, she was just admitted last night to the hospital for some sort of upper respiratory infection. They don't know if it is an early pneumonia or a bronchitis. Her white blood cell count is very high. So far her heart has been stable and she has no fluid in her lungs. I need prayers again from you all. I know it works. Thanks and happy new year to all, Sherry.

Aganita V's December 30 reply to Jon's December 23, 2000 - Hi Jon, We went to the VA hospital today to see Eris' primary provider. The doctor ordered a full range of blood tests, which determined that her kidney and liver functions were fine but her thyroid was somewhat low. Digoxin levels were not toxic but were on the high side. They also did an EKG and blood pressure check while lying, sitting and standing. She does not have atrial fibrillation but does have a very slow heart beat (in the 50s) and blood pressure which drops dramatically when she sits up and stands. The upper levels went from 142 to 122 to 103, while the lower level was usually in the 70s.
     Thus the doctor said to cut down on digoxin and furosemide and to increase the levothyroxin. Eris had already stopped taking the salsalate when we saw that it could affect INR, cause tintinitis and dizziness, and the doctor agreed that that was a good idea without saying that it shouldn't have been prescribed. We hope that these changes will result in more energy and wonder why it takes a crisis to get these tests done. The doctor showed us a chart that illustrated how her heart rate had been slowly decreasing over the past year. Why was this not noticed earlier?

Barbara P J's December 30 reply to Nadine's December 15, 2000 - Hi Nadine, I'm a little late in replying but we now have our 10½ old grandson living with us. He was here in June of 1998 when I had to be hospitalized due to cardiomyopathy so he had been through at least part of it with us. Now he wants to know what all happens and I've found when I've had a bad night he really does understand. Last night was awful and today I was trying to get clothes washed. Of course I fell asleep during the day and when I woke up he had already gotten the jeans from the dryer and hung them up. When I thanked him he said he could do it easier than I could. All in all we've found out that children not only understand more than we often give them credit for, but will also adjust much better than we would think. Good luck with your entire situation and keep the faith, Barbara.

Jon's December 30 reply to Dhana's December 27, 2000 - Hi Dhana, One way to find others who have gotten CHF from chemotherapy is to look through the entries at Who's Who, and Me Too!. Hopefully some others will also answer here.
     Does she suffer actual "physical" pain? Chest pain? Nitrates would help that (nitroglycerin). Regardless of cause, most - not all, but most - CHFers are treated with the same basic drugs with pretty good success at relieving symptoms. Be sure to read through The Manual for starters. Jon.

Jon's December 30 reply to Aganita V's December 30, 2000 - Hi Aganita, usually postural hypotension or rapid decrease in blood pressure when standing or changing position, is a side effect of ACE inhibitors, beta-blockers or dehydration. If her urine and blood tests as well as a physical exam show no dehydration, I would think that the drugs to check into lowering are those two. I have never heard of digoxin causing these kind of problems. Digoxin's causing the heart to beat more strongly usually offsets its slowing of heart rate.
     Naturally, a low thyroid output could also cause these problems and can actually cause heart failure. My own doctor insists on changing doses one drug at a time to be sure he knows which effects or changes are being caused by which drug. By changing multiple drug doses at the same time, how can anyone be sure what causes what changes? Of course, I am not a doctor, but it seems to me that her thyroid problem shoud be corrected and then the other drugs adjusted one at a time if it is still necessary. Digoxin can improve the quality of life and ability to exercise for many CHFers so it's a shame to remove it if not necessary to do so.
     I fired my latest primary care doctor this month because he kept sloppy charts and it caused him to miss drug interactions. Luckily, I watch out for myself. It really stinks to have to change doctors (I hate it!) but I urge anyone who sees their doc missing the obvious to do so. These are our lives and we must watch out for ourselves. Doctors are just people. 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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