The paperwork never ends The Archives
Loved Ones - October, 1999 Archive Index

Ann 10-4     treating very obese people with CHF - questions
Helena's 10-4 reply to Jon's 9-28     potassium levels & muscle cramps
Jon's 10-4 reply to Helena's 10-4     blood levels should be checked regularly
Carolyn B 10-4     teen's blood test frequency question
Jon's 10-4 reply to Carolyn B's 10-4     blood test frequency
Arline 10-5     mom's upcoming surgery - questions
Suzanne D 10-5     husband's all-over itching - any ideas?
Jon's 10-5 reply to Suzanne D's 10-5     a thought
Tandy K's 10-5 reply to Carolyn B's 10-4     pediatric blood drawing (infants)
Kathryn C 10-5     heart support group experience & more
Ann K 10-5     update on mom, dialysis & more
Leslie M 10-6     dad's large weight gain - questions
Jon's 10-6 reply to Leslie M's 10-6     he should see a dcotor right now
Sylvia 10-6     my mom, CHF questions
Lori 10-8     swollen, red wrists - any ideas?
Lori L 10-9     update on gram's swollen, red wrists
Paul B 10-9     questions about care of terminal patient
Bill D's 10-9 reply to Lori's 10-8     that wrist & possible arthritis
Lori L 10--9     prednisone therapy
Jon's 10-9 reply to Lori L's 10-9     prednisone & CHFers
Janet's 10-11 reply to Jon's 9-21     lost ya, then found ya again - update & more
Gerrie 10-11     surgery, valve questions
Jon's 10-11 reply to Gerrie's 10-11     try some cardiologist-staffed forums
Virginia R 10-12     update on dad & more
Wendy 10-13     magnesium dose question
Vikki 10-13     seeking uplifting book
Beth T 10-13     seek CHF info
Jill 10-13     coping with end-stage CHF - seek advice
Janie 10-13     questions about my mom's treatment
Jon's 10-13 reply to Janie's 10-13     is your mom's doc a CHF specialist?
Mark Saari 10-14     questions about dad's heart condition
Paul B 10-14     Wilt Chamberlain's death
Jon's 10-14 reply to Paul B's 10-14     I don't know
David's 10-14 reply to Carolyn B's 10-4     testing for pediatric heart problems
Janie's 10-15 reply to Jon's 10-13     doctors, blood counts & more
Jon's 10-15 reply to Janie's 10-15     do you have any details?
Virginia R 10-16     getting proper care & to Beth
Beth L 10-16     should CHFers get flu shots?
Jon's 10-16 reply to Beth L's 10-16     CHFers & flu shots
Jon's 10-16 reply to Mark Saari's 10-14     some comments from a CHF doc
Annie G 10-17     transplant center questions
Suzy 10-17     questions about my dad's condition
Karen Edge 10-17     questions about my dad's breathing problem
Deb K 10-17     questions about finding CHF specialists
Jon's 10-17 reply to Deb K's 10-17     finding CHF specialists
Gus R's 10-17 reply to Beth L's 10-16     flu shots for CHFers
Lucy M 10-17     update, Vasotec & back pain question
Jon's 10-17 reply to Lucy M's 10-17     Vasotec & back pain, meds caution
John Len 10-17     artificial heart valve lifetime question
Jon's 10-17 reply to Annie G's 10-17     transplant center data
Nicole Pintal 10-18     really need some help, please
Wendy K 10-22     mom seeing cardiologist - what should I ask?
Karen Edge 10-23     thx for the prayers, & more
Jon's 10-23 reply to Nicole Pintal's 10-18     questions rather than answers
Jon 10-25     it was a nice run,.....
Jon 10-26     trying a new script
Anita S' 10-26 reply to Jon's 10-26     Vo2max questions & more
Jon's 10-26 reply to Anita S' 10-26     thanks to all & to Anita
Jim Spraker 10-26     seek CHF specialist in Virginia
Karen Edge's 10-26 reply to Jon's 10-26     Zocor questions & more
Jon's 10-26 reply to Karen Edge's 10-26     Zocor reaction & more
Lucy M 10-26     update on Bobby, thanks & more
Janie G 10-28     where do we go from here? questions
Karl 10-28     how to improve aunt's quality of life?
Jon's 10-28 reply to Karl's 10-28     get her to a CHF doc quickly
Karen D's 10-28 reply to Karen E's 10-26     Zocor allergies & reactions, possibilities
Bill D's 10-28 reply to Karen E's 10-26     Zocor allergies & reactions, possibilities
Lucy M 10-28     Webtv technical difficulties
Jon's 10-28 reply to Lucy M's 10-28     Webtv technical difficulties
Gail 10-28     questions about mom's chest pains & more
Ann Marie K 10-29     update on my mom
Darren B 10-30     need help for my grandfather
Ellen 10-31     potassium questions & more
Jon's 10-31 reply to Ellen's 10-31     potassium, ups and downs & more

Ann, October 4, 1999 - Hi, My husband has CHF. He has to lose 100lbs before an angiogram can be done. Right now he is on medications like Zesril, atenolol and a diuretic for the fluid he has, especially in his feet. Does anyone know of a hospital that especially treats severely overweight people with CHF? He gets depressed sometimes thinking about waiting to get the angiogram done. I know there are definite risks involved if he had it done now, and I believe the test can only be performed in people who weigh up to 300lbs. Does anyone have any advice or experiences they can share? I'm desperate!

Helena's October 4 reply to Jon's September 28, 1999 - Thank you, Jon. I am sending the information from your site to my father. I respect the work you do. My father also has had pain in his legs. He has to be careful because of his diabetes but he learned that his pain came from an imbalance of potassium in his blood, as well as calcium and magnesium. He is a scientist and this interested him. The drugs he takes, he said can deplete these minerals. He found that he needed more potassium in his diet and this helped. Helena.

Jon's October 4 reply to Helena's October 4, 1999 - Hi Helena, Indeed, electrolyte balance is critical for CHFers, especially if they take any type of diuretic or ACE inhibitor, as we all should. I have my blood levels checked every 3 months. The muscle cramps that come with a loss of potassium are just the beginning of a very serious set of symptoms that can kill you if you get severely low, so be sure he has his blood checked regularly. I'll have a recent study on this very subject up on Nutrient Stew in the next couple of days. Jon.

Carolyn B, October 4, 1999 - Greetings, How often should a 13 year old with DCM on 20mg Lasix daily have blood work done? Literature seems to say "close monitoring" but the doc feels this is a low dose and does not require "close" monitoring or frequent labs.

Jon's October 4 reply to Carolyn B's October 4, 1999 - Hi Carolyn, I hope someone with children in the same boat writes in. Offhand, I would say that it is a low dose of Lasix but then again, a 13 year old's body changes constantly so a closer eye is necessary than would be the case for an adult on that dose. I would say that every 3 months is certainly not out of line. Jon.

Arline, October 5, 1999 - Hi everybody, My mom is 79 years old and has CHF along with diabetes and lots of other ailments. She needs a hip replacement as her current artificial hip is loose and very painful. She is scheduled for surgery on October 14. It will be a serious 3 hour surgery as they are implanting bone from a cadaver. Her internist watches her carefully, but I'm worried if she's strong enough for this ordeal. Do you have any words of wisdom for me? Thanks, Arline.

Suzanne D, October 5, 1999 - Hi, I would appreciate it if anyone has any insight into the problems that my husband, who was diagnosed with CHF over a year ago, is experiencing. He has an all-over body itch with episodes of what feels like severe biting. He says it feels like ants are biting him! His doctors have tried everything possible and can't figure out what is going on. They hospitalized him earlier this year, took him off his medications, gradually reintroduced them, believing some of his drugs were reacting against each other. For a time, the itching went away. Now, it's back.
     Among the doctors who have tried to unravel this mystery are a family doctor, cardiologist, several internists, kidney specialist and allergist. The next try is going to be a dermatologist. Although my husband's creatin levels are slightly elevated, they are not enough to cause this constant itching. Has anyone ever heard of a CHF patient who has had this experience? I work as a medical reporter for a daily newspaper and I've been unable to find anything on the web or in medical textbooks. Everyone is baffled. Does anyone have any insight. Thank you.

Jon's October 5 reply to Suzanne D's October 5, 1999 - Hiya Suzanne, This is just my own thought, but I would try a neurologist first. Jon.

Tandy K's October 5 reply to Carolyn B's October 4, 1999 - Hi Carolyn, My 20 month old, Brandt, takes 30mg Lasix daily (10mg 3 times a day) and the pediatric cardiologist he sees doesn't want blood drawn on a regular basis. If he gets sick (vomiting/diahrea) or if he is having blood drawn for another reason, then we have levels checked but otherwise we assume that he is okay. I have questioned him several times on this and he feels that if something is wrong I will notice. He has more confidence in me than I do. <g> Blood draws are a very big deal for an infant and that is also considered in his decision. The last one we had done was 2 sticks in the lab and then Mom says "no more chances - find someone who's not practicing" so they sent us back to the PC's office and he did the draw himself. It sends Brandt's heart rate over 200 for some time and literally wears him out, so I agree with the doctor on this one. Take care and God bless!

Kathryn C, October 5, 1999 - Hi Jon, I just wanted to share with everyone that my son and I attended the first session of a 6 week cardiac recovery support group last night. You should have seen the faces of everyone in the room when we went around to make introductions. Everyone was fully anticipating that I was the heart patient. I am 51. When my son said it was him, the expressions on the faces showed shock and disbelief. Everyone there was in their 60s and 70s. All in all though, it was a positive experience. My son got to speak out to others who understood his feelings and experiences like I cannot. I shared with others your Web site address, Jon. The nurse who leads the support group was very interested and hopefully spread the word through the medical community in Portland. Thank you again for this site. This is a lifeline for patients and their families. Kathryn in Portland.

Ann K, October 5, 1999 - Hi, To the friends I haven't met, my 85 year old diabetic, COPD, breast cancer survivor Mom has received another miracle. On September 8, she went into the hospital and immediately went into stage 4 CHF. They couldn't get the fluid off her with drugs anymore. The doctor told me she had weeks left and the next day she almost died. I had the minister and our dear friends there and she held on. Her kidneys have been borderline for months and finally after 3 weeks on dobutamine, the doctor decided now was the time to start dialysis. The dialysis has removed 5.5 liters of fluid and now with 3 times a week tuneups, she looks wonderful. Her appetite is coming back and she can breath without oxygen. Mom has lost 17lb in the last month and most of this was fluid. They are starting intensive physical therapy to get her walking and out of bed. I had been hesitant about dialysis and the doctor told me that they usually don't do dialysis to clear fluid because of the Medicare rules. I know that God and His angels are working with my mom and I. I am truly blessed. I hope you know that when things look the darkest, never lose faith and never give up. Blessings to all and this wonderful site.

Leslie M, October 6, 1999 - Hi, My husband has CHF due to cardiomyopathy. My dad, who is 61, smokes, drinks and is not the healthiest type of person called me last night and said he has gained about 50lbs in a month or less. It is fluid and he is having trouble breathing but feels ok otherwise. He has not gone to the doctor yet. Does this just happen with CHF or do other things cause this also? He is very far from me so I haven't seen him in about 5 months but I worry all the time.

Jon's October 6 reply to Leslie M's October 6, 1999 - Hi Leslie, Other things can cause a person to gain weight rapidly, fluid or not. None of them are very good, health-wise. Please urge your dad to see a doctor immediately. This kind of weight gain is nothing to play down. It indicates a health problem of some kind and places a large extra load on the heart whether it is caused by the heart or not. Jon.

Sylvia, October 6, 1999 - Hello, I am 24 years old and taking care of my mother at home, who suffers from CHF. She had cancer and pneumonia, and she suffers from arthritis. She was diagnosed with CHF 2 years ago and as days go by, I notice her slowing down more and more. She really gets depressed and sleeps a lot. It was a dramatic change in her life because she used to be so active. My mother is 63 years old and from what I've read in this Website, I think she's in the final stage. How long will she be in her final stage? I think she even had problems with her heart way before she was diagnosed. I am very concerned and would like to know as much as I can of this disease called CHF. Her doctor just prescribed a medication called Zaroxolyn at 2.5mg. Hopefully, it will make her feel better. How does it really all end? Thanks. Please reply.
Jon's Note: Hi Sylvia, Have you read The Manual yet?

Lori, October 8, 1999 - Hi, Can anyone help me out with an explanation on this problem? An older lady who was diagnosed with CHF in Febraury of 1999 is having trouble with her wrist swelling up. It is red and hot to the touch, and is excruciating painful. It looks to be spreading to the other wrist. A trip to the doctor today brought about a decision that it is cellulitis, then he decided it could be gout. The doctor also thought it was in her ankles because they are swollen up too. Her legs have edema. A blood test was taken but no report as of now.

Lori L, October 8, 1999 - Hi, I called the doctor's office to see how the blood test came out checking for uremic acid level. They said it is normal. The doctor is gone for now, so I have no idea what my 91 year old Gram has wrong with her. Her other wrist is now hot, inflamed, and red also. She is in pain but getting no pain pills as of yet.

Paul B, October 9, 1999 - Hi all, Here's a tricky one. My mother in law, who suffers from CHF, is receiving hospice care for throat cancer. Her cancer was discovered about 3 weeks ago when she was in the hospital for a compression fracture of her back from osteoporosis. Because of bad knees, which couldn't be operated on because of a bleeding condition, she was pretty much confined to a wheelchair and couch following her brain surgery for an arterioveneous malformation 2½ years ago. She also suffers from emphysema and liver problems.
     Obviously, she has plenty of reasons to be depressed both physically and mentally. She is short of breath and her list of medications is longer than many menus. While in the hospital, they tried some rehabilitation that was geared to getting her on her feet and that, of course, failed. At the present time she is not receiving any physical therapy, although the doctor believes she may have 6 months to a year to live. For quality of life purposes both now and down the road, I suggested she start some of the basic cardiac rehab exercises: arm motions to start with and hopefully, leg movement when her back improves. I know the simple ability to move herself up in bed without assistance would boost her spirits and give her some independence.
     If anyone has experience with how the pain medication provided by hospice interacts with CHF drugs or has any suggestions, please pass them along. The purpose is not to fight what seems to be her fate but to give as much quality to her remaining days as possible. Peace to all of you and God bless you.

Bill D's October 9 reply to Lori's October 8, 1999 - Hi Lori, There are 100 types of arthritis, including gout. Get your friend to a rheumatologist as quickly as you can. She might have a dangerous form of arthritis. If it isn't attended to quickly, she could lose the ability to bend her wrists. The reason I'm so smart about this is I just took Rosie to the doctor's because her wrist had swollen up. Before I took her, I put "arthritis" in my search engine. There's more stuff about arthritis than CHF! (Well, almost) Bill.

Lori L, October 9, 1999 - Hi all, Jon, the doc prescribed prednisone for my Grandma's swollen wrists. I see you had written that CHFers should not be on prednisone. I asked the pharmicist about it. He said as long as it's not long term, it should be okay and that it should help. Her right wrist started out with it and now it has moved to her left wrist. The right wrist appeared today to be reducing, and didn't hurt as badly. We've just been putting cold rags on it till tonight when she got her first prednisone pill.

Jon's October 9 reply to Lori L's October 9, 1999 - Hi Lori, Don't get me wrong; prednisone is not going to do any severe damage to a CHFer. The main problem with it is that it encourages fluid retention, which is always unwelcome to a CHFer. If there are other anti-inflammatory drugs that may do the job, prednisone is to be avoided. The big problem is that many doctors immediately go to prednisone, never even thinking about its possible effect on a CHFer of making them bloat. Another drawback is that steroids like prednisone are often prescribed in a series, so you wind up taking them for a week or more rather than just a day or two. The new COX inhibitors - dubbed super aspirins by the press - may be one answer, especially if she's not on any blood thinners. Jon.

Janet's October 11 reply to Jon's September 21, 1999 - Dear Jon, Thank you so much for your reply. Sorry I haven't done it sooner, but I forgot to add you to my "Favorites" and really couldn't remember how I found your site. That won't happen again! <g> My husband was 59 when all this began. I guess what I'm really trying to cope with is self-blame. You see, for nearly 25 years I had worked with the admitting physician and had ultimate faith in him. His comments to me about my husband were: "right carotid artery noise, left side heart insuffiency, enlarged liver, edema, and lower lobe pneumonia." Knowing the written medication orders (I was working in the pharmacy at the time) to be only IV antibiotics, I didn't ask "Why no Lasix?!" The physician and I have had talks about the situation and the one thing that has kept me going is my faith, and the belief that what has happened, happened for a reason. God allowed my husband to live, for a reason that we as yet do not understand. This isn't what we had in mind for our retirement years, but we have a closer knit family than before and we enjoy life, as it is, probably more fully than we would have done otherwise.
     This probably is not making much sense. The feelings are hard to put into words. When I get tired and resentful, I pray that God will show me what to do next and He does. I'm certain that is how I first discovered this site, and rediscovered it tonight after receiving a very encouraging e-mail that I need to answer yet tonight. Thanks again. I'll try to give to this site as well as take. God bless you all! Janet.

Gerrie, October 11, 1999 - Hi, On April 14, 1999, my wife got a new aortic valve because of calcification. The new one is a half biological one, called Freestyle, caliber 23mm. Today 2 coronary arteries are blocked by connective tissue, so it is necessary to make 2 bypasses. Do you know this phenomenem? Is there any chance that after the second surgery, connective tissue will grow again? How can that be prevented?

Jon's October 11 reply to Gerrie's October 11, 1999 - Hi Gerrie, This is out of my "field" so to speak. You might have some luck getting an answer from a cardiologist at the Cleveland Clinic heart forum. See the list at this page. Jon.

Virginia R, October 12, 1999 - Hello, and thank you to everyone who has written and prayed for my Dad and me. A special thanks to Barb, who through her own grief, reached out to offer support. Dad was just released last Friday, after having had an amputation of his great toe and metatarsal (joint under the toe). There was a good deal of necrotic flesh. He received hyperbaric treatments and IV antibiotics. Currently, he is receiving Home Health and is scheduled to return to the surgeon tomorrow. Staph was in the bone. Of course, I am praying that the staph will be eradicated and that Dad's foot will heal. It must heal from the inside out. His stay in the hospital was a nightmare! The first hospital was good, but the subacute long-term care hospital was extremely negligent. From dropped IVs, rewrapping his foot with a dirty bandage and - get this - changing his Coreg dose because the contract "nurse" looked up the standard dose in his PDR!
     Of course, the Health Department was called and my father made good use of his time by documenting all that went wrong so he could tell the doctors and administrator. They tried to chart that he was belligerent for refusing his meds, when he just refused inaccurate doses. He also didn't get a bath or his rehab equipment for 4 days! At least at home he feels loved. I am just concerned that he was discharged because he became too troublesome for their tastes. At any rate, we will have to take him to his CHF clinic to see what they think after they played with his diuretics.
     I was glad I had learned so much through this forum about sticking up for your rights and reading your chart periodically. This certainly helped us through a grueling 3 weeks. We'll see what the days ahead have in store for us, but as a neighbor stated, "We don't always know why things are like they are in the midst of trouble, but when we look back we can almost always see that God was in control." I needed to hear those words that day. Thank you all. I think of you all often and wish wellness for your family and loved ones.

Wendy, October 13, 1999 - Hi, I looked over the very informative section on Nutrient Stew however I'm wondering how many mg of magnesium my husband should take a day? He has arrhythmia with DCM. He is currently on 3.125mg Coreg twice daily, 100mg CoQ10, 40mg Zestril and 25mg spironolactone twice daily and one aspirin. He also takes an antioxidant supplement, but I notice it contains manganese, not magnesium. Can anyone tell me what is suggested? Thanks and my prayers are with all of you! Wendy.
Jon's Note: 400mg to start, then 800mg daily if tolerated

Vikki, October 13, 1999 - Hi, I have never posted a message on any board before. Today however, I was looking for info on CHF, found this page, and was moved by the support and stories. My mother was recently diagnosed with CHF. She also has diabetes and mononeuropathy. She has been very depressed about her deteriorating health and the impact it has had on her lifestyle. My mother has always been a fighter but is very frightened right now. I am wondering if anyone knows of any good books that I could get for her to educate her and help her realize that her life may be different but she still has good times ahead of her. She is not a religious woman, so, she would not be able to relate to anything that comes from that perspective. I would appreciate any suggestions. Thank you.

Beth T, October 13, 1999 - Hi, This is my first time on this Web site and I am totally moved by what I have read. My prayers are with each and every one of you. My Dad was just diagnosed with CHF yesterday so I am in the digesting stage. He had his first heart attack in early August followed by bypass surgery (5 arteries). Unfortunately, he had a lot of complications and spent 21 days in ICU with kidney failure, respiratory failure and cardiac arrest. Finally, he was taken off the ventilator and moved into a rehab unit for 2 weeks. From there, he went home and has been home for 3 weeks. The first 1½ weeks he was making steady progress but recently he was getting tired and chilled. Yesterday he started experiencing double-vision so his doctor had him come in. So, he has CHF and now we are all trying to learn as much as we can so that we can help support him and my Mom. Please share some Web sites where I can access info regarding CHF. I truly believe that education can help all of us cope with CHF. Thanks.
Jon's Note: Have you looked through the Site Index?

Jill, October 13, 1999 - Hi, My dad is in the final stages of CHF and I have a few questions. The swelling in his legs is very bad - any suggestions? Also, he has such a hard time sleeping. Any advice or suggestions from anyone who has experienced the final stages of CHF with a loved one would be very much apppreciated. Thanks.

Janie, October 13, 1999 - Hi to everyone, I'm writing to ask if there is anyone who could answer a question for me. My mom , age 76, has CHF. She is on Coumadin, 80mg Lasix daily and diabetes meds. They recently stopped her 2.5mg Vasotec and lowered her Lasix from 160mg to 80mg, and totally removed the 2.5mg zaroxolyn every other day. The reason for the change is that her creatine was 3 times higher than the norm and her BP was 90/60. Now they want to do a transfusion because her blood count is low. What does this mean? She is so depressed, her appetite is poor and her energy level is weak. If anybody could shed some light on any of this, I would truly appreciate it. Thanks and prayers to all, Janie.

Jon's October 13 reply to Janie's October 13, 1999 - Hi Janie, Welcome to Jon's Place. Is your mom being treated by a CHF specialist? Jon.

Mark Saari, October 14, 1999 - Hi, My father has CHF from an inoperable bad valve and is dying from it. His EF is less then 15%. After his last doctor's appointment, the doctor sent a letter saying a probable ventricle aneurysm. What is it and is this common? I would assume if it bursts, it would result in death.

Paul B, October 14, 1999 - Hi, I don't know if anyone else caught this, but his agent says Wilt Chamberlain died from CHF. According to the story, Wilt had 30 to 40lbs of fluid drained within the last few weeks and he had been in really tough shape after some dental work recently and had gone downhill very quickly. There were also reports that he recently ran a marathon in Hawaii and was involved in a 50 mile race of some sort in Canada. I would guess there are a lot of folks visiting this site that are just curious about CHF. Running a marathon and dying from CHF in the same year, I guess I'm a little curious, too. Jon, any thoughts?

Jon's October 14 reply to Paul B's October 14, 1999 - Hi, It's all pretty vague. Dental work is well known for causing serious heart inflammation if you have a faulty valve. Bacteria is knocked loose from your mouth in unusually large amounts, which - dumped all at once into your system - can really cause serious heart infections. It could have come on very suddenly, causing CHF, after he had run races in fine health just a few weeks earlier. Jon.

David's October 14 reply to Carolyn B's October 4, 1999 - Hi Carolyn, My 9 year old son has RCM, Restrictive Cardiomyopathy, and has been taking 30mg of Lasix for over 2 years now. He also takes CoQ10 (thanks to Jon) and one aspirin a day. His condition has been stable and has not changed, and we only see the doctor every 6 months now. We've been to Stanford and UCSF and have had a second heart cath about 9 months ago. At this point we are comfortable with this level of testing. Hang in there and God bless your son and your family. Dave H.

Janie's October 15 reply to Jon's October 13, 1999 - Hi Jon, My mom has an excellent cardio doc but because of her insurance she must first be seen by her primary care doc. I've asked her primary to explain to me but he never returns my calls he insists on speaking to my mom and she just isn't remembering too well. Do you know anything about low blood count? Could it possibly be caused by her Coumadin? Thanks so much for responding so quickly. Janie.

Jon's October 15 reply to Janie's October 15, 1999 - Hi Janie, I'm certainly no expert, but do you have any more information? Is her white cell count low, her red cell count, her actual blood volume (the amount of blood circulating through her whole body)? Maybe you should ask your mom to call her cardiologist and try to be on the other line to ask questions when she talks to him. I know that would be hard to arrange but it's worth a try. Maybe he can answer your questions over the phone and at least you get the added benefit of making him aware of her current problems, in case her primary care doc isn't keeping him up to date. If you can get me some more details, I can ask a very good CHF doc what he thinks but he's going to need a bit more to go on, I think. Sorry. Also, I hate to beat this topic to death but not all cardiologists are CHF specialists and a CHF specialist is the way to go. Do you know if her heart doctor specializes in heart failure patients? Jon.

Virginia R, October 16, 1999 - Hi, For those of you who are trying to learn more about CHF and what this means for their family members, I would emphasize how important it is to find a congestive heart failure specialist. Even when I used those terms in questioning clinics, I was shocked to hear the nurses or receptionists say, "Well, he's a cardiologist and they specialize in all aspects of heart problems." Let me tell you, that is not the same as a CHF specialist. After 10 months of poor care, I finally got on the Internet and looked up congestive heart failure clinics in Texas. I called a few, until I found one who "listened." Let me tell you, it has made a huge difference in my father's quality of life and my siblings' peace of mind.
     For Beth T, read The Archives here. This is a great site with many caring people. My father has been in heart failure for over a year. He has had cardiomyopathy since October, 1990. There are times when I know he wanted to give up. This whole experience is such a roller coaster, but Jon's Place has been a blessing. Hang in there, everyone.

Beth L, October 16, 1999 - Hi, I have heard conflicting views on whether or not individuals with CHF should get flu shots. Can anyone shed some light on the pros and cons?

Jon's October 16 reply to Beth L's October 16, 1999 - Hi Beth, Yes, they should get one. Always ask the patient's CHF specialist first, of course, but the general rule is absolutely, every CHFer should get a flu shot unless they currently have the flu. I can't list the pros and cons because I am unaware of any cons. Jon.

Jon's October 16 reply to Mark Saari's October 14, 1999 - Hi Mark, I received this reply from a well known CHF specialist to whom I posed your concerns: "An aneurysm is just an area of thinning or out-pouching of the wall of the heart. In this case, it is probably an area of scar tissue that is weak, perhaps from a previous heart attack. Interesting, however, is the combination of the leaking valve (and I'll presume it is the mitral for now), the weak heart (EF 15%), and the aneurysm. Nowadays, some centers (Cleveland Clinic, Texas Heart, Christ, etc) are going after the valve and the weak heart, and using an LVAD - ventricular assist device - as a temporary bridge with very good recovery and big improvements in functional capacity."
     I hope this helps. Jon.

Annie G, October 17, 1999 - Hi everyone, I keep reading but haven't posted for awhile. I'm trying to find out ratings for transplant programs in Michigan and Ohio. We aren't in need of one right away but we know that my husband has no disqualifying problems currently and want to check out options before they are needed. He was evaluated at University of London Hospital in Ontario in December of 1998.He is not curently listed for a transplant as he is not maxed out on his medication and quality of life is still fairly good.
     London does not list you until you are expected to survive only 1-2 more years and there are no other options regarding medications. We live in a border town to Michigan and I work in Michigan, so we wanted to check both areas out. Thanks for any help you can give. Anyone replying by e-mail, please put "Annie" in the subject line, since our family of 5 has only one address. Thanks.

Suzy, October 17, 1999 - Hi, I am the daughter of a wonderful father with CHF. He is one of the most caring and loving fathers in the entire world. For 2 years I have watched while he is slowly becoming an invalid. He is so depressed that it is almost unreal but to tell the truth, so am I. He has been in the hospital a week. He is getting weaker day by day. His voice is weak and it sounds as if it hurts him to talk. The doctors say he is better but I am so scared that he will die.
     The reason I am writing to you is that I have nowhere else to turn. My dad is experiencing severe pain in his ankles. Why? His right arm is swollen terribly, while no other parts of his body are involved. The doctors do not know why. More tests. They make him so weak. Can someone give me some hope, or answers?

Karen Edge, October 17, 1999 - Hi, I'm new to a site like this. My dad had a heart attack at Easter. In the middle of May, he had a cardiolyte test performed. Since that time, he has complained of breathing difficulty. These episodes come on after exertion and he complains that he is not able to get his breath back the way he did before. He's 65 and he looks to me for most answers about these types of things, but I am at a total loss as to where to even look for help. His doctor upped his Accupril to 20mg a day but Dad says that doesn't seem to be helping. Sometimes he says he is feeling like he did before they found the first blockage but his heart has a regular rate and rhythm, and his pulses are strong and equal bilaterally. His color is good and he says he feels fine except for not being able to catch his breath after exertion. Does anybody out there have any ideas? Thanks, Karen.

Deb K, October 17, 1999 - Hi Everyone, Thanks Jon, for your info. I'm sorry I haven't checked in sooner. I am still adjusting. My husband and I very much want to hook up with a heart failure specialist. Although we are very satisfied with our present cardiologist, we agree a "super specialist" is warranted. So far all medical personnel we've talked to don't know of such a person. We are within driving distance of Oregon Heath Sciences University, University of Washington Medical Center (Seattle) and Sacred Heart Medical Center (Spokane). If you don't have a referral, how do you get in the system and become a patient of a heart failure specialist?

Jon's October 17 reply to Deb K's October 17, 1999 - Hi Deb, I recommend going through the phone book and calling individual cardiologist's offices, asking a list of questions designed to be sure that cardiologist is in fact a CHF specialist. One interesting post on the subject can be found here (let it fully load and it will go to the exact post). I am including a couple of messages I have written to others on the subject in the hopes that the information will help somebody, if not you. <g>

     "You're not facing just a question of 'What is a specialist?' You're facing, 'Which specialist is right for me?' Consider it point by point: If he intimidates you, you will hesitate to ask questions. This is bad. If he misses a pre-existing condition, especially a documented one, he may prescribe the wrong drug or treatment - especially in an emergency - or misdiagnose the patient. This is bad. If he does not explain the condition or disease, its causes, treatments, symptoms and how to deal with it, then he is actually treating a chart or a number or a condition - not a person. This is bad. If he is in a hurry, well, it goes without saying that this is bad.
     What I am trying to say is that he may have all the technical know-how and education in the world but that in no way makes him either a good doctor or the right doctor for you. He may be a better administrator than doctor, and that accounts for his position, or more likely, once he got a 'name,' he got too busy and forgot the humane and subtle requirements of treating 'people' rather than diseases. It happens. I don't give a rat's behind what a guy's reputation is when my life is at stake. If he's in a hurry, thinks he is infallible, misses parts of my problem, or isn't willing to take sufficient time to explain his expertise in plain English to all those concerned - he's doing me no good at all.
     Getting a CHF specialist isn't the key, really. The key is getting one who treats you, not the illness, and one who is willing to take time to make himself and his knowledge accessible to those he serves. Doctors work for us! They're not in charge of us, we are in charge of them. We pay them for specialized knowledge and to a large degree, judgment. If they aren't paying attention to you as a person - your background, all existing conditions, your fears, and anything else important to you, their judgment is suspect in your case.
     My CHF cardiologist comes in, sits down, asks about my daughter, my wife, my Website, church, hobbies, and then asks, 'How do you feel?' He then questions me at length about just that - how I feel. Then a physical exam (very thorough), discussion of symptoms, tests results, upcoming tests, supplements, drugs, treatments, possibilities, and finally, a question and answer session. Is this how the doc treated you and your husband? If not, compare the two approaches and decide which suits you better. That's the kind of doc you're looking for and if you have to do some serious looking, it will probably be worth it. For what it's worth, I never feel any question I ask my doc is a dumb question. That's not because they aren't - many are <g> - but because he takes them all quite seriously, just because his patient asked them. That makes it easy for me to ask every question I have without hesitation and this is good."
     "Unfortunately, I can't recommend doctors I haven't met personally, or at least discussed CHF with. Your best bets are to post to the heart forum (right here, in this case) and ask anyone happy with their doctor who lives in your general area to contact you by e-mail or also use the doctor finders at the Links page and then phone the ones you pick, asking (you may need to ask for the nurses' station or for a call-back from a doctor) these questions:
  1. does their clinic provide for intravenous inotropic therapy like dobutamine or dopamine?
    answer should be yes
  2. is that inotropic therapy ever provided on an outpatient basis?
    answer should be yes
  3. do they participate in current trials of new CHF drugs, like TNF-blockers or endothelin (ETA) blockers?
    answer should be yes
  4. do they recommend a 3 or a 4 drug regimen for "average" CHF?
    should be 4 if the patient is stable: ACE inhibitor, digoxin, diuretic and beta-blocker
  5. do they recommend Aldactone for patients with severe CHF?
    answer should be yes - 25mg a day
  6. do they believe in online (WWW) resources for patients?
    answer should be yes
  7. how often do they think blood should be drawn and tested in patients on diuretics or ACE inhibitors
    answer should be every 3 months or more, and more often when adjusting dose
  8. do they routinely send copies of all test results and office visits/examinations to your primary care physician?
    answer should be yes
  9. does their clinic have their own echo equipment or do they use hospital equipment nearby?
    yes is ideal
  10. does the clinic have ties to, and doctors on staff at, a heart transplant hospital?
    yes is ideal
  11. will I see the same doctor on each office visit?
    answer should be yes
  12. is there an electrophysiologist on staff?
    answer should be yes"

     I hope this helps. Jon.

Gus R's October 17 reply to Beth L's October 16, 1999 - Hi Beth, I am a CHFer and would like to add to Jon's reply to your flu shot question. My dox strongly recommend that everyone else in my household get the flu shots too. They have all agreed with Jon's statement that there are no cons to this arguement, just pros. Best wishes, Gus R.

Lucy M, October 17, 1999 - Hi all, I read all the time and try to keep up with all of you. You have been a great comfort to me. I have a question about Vasotec. My husband was hospitalized in May with CHF. They took 20lbs of fluid off him. When he came home, they added captopril. They took him off that and added Vasotec on top of Norvasc. Since that time, he has complained of severe pain in his back. Nothing helped. Pain meds, muscle relaxers, nitrostat, nothing helped. Now he has been losing his blood pressure and the doc said to take him off all meds until after the arteriogram on Monday. The last 3 days he has not had the pain. Has anyone had this kind of pain? Is it possible it is the Vasotec? I had to put him back on the Norvasc because his pressure went up too high. He still has no pain in his back and feels better than he has since May.

Jon's October 17 reply to Lucy M's October 17, 1999 - Hi Lucy, About Vasotec, it is possible that it caused your husband's (you did not give a name) back pain. There are plenty of other drugs (ACE inhibitors and ACE 2 blockers) that can take its place so avoiding it should not be a problem.
     I want to caution everyone reading this about something that can very easily give a false impression to CHFers and their families. When we go on drugs to prolong our lives and ease our ailing hearts - beta-blockers and ACE inhibitors especially - they actually slow down our body in general. This is because those drugs intentionally block natural responses to "speed" us up. If those responses - mainly hormonal - were not blocked or inhibited, our hearts would work themselves to death trying to pump more times per minute to make up for the lesser amount of blood they are able to pump per beat in their weakened state. Please, please, take the time to Read The Manual if you haven't already.
     When we have to go off those meds for some reason, we feel great, compared to how we felt before. We have a great deal more energy and motivation. That's because our hearts are now free to work like mad trying to make up for that lessened blood-moving-per-beat capacity. Unfortunately, we wouldn't feel great all that long, because we would die a whole lot faster! So, please avoid the idea that not taking meds might be a good move.
     I am not suggesting that you or your husband had considered him staying off heart meds. I just thought this was a good opportunity to bring up the topic. I also like to hear myself talk! <g> Jon.

John Len, October 17, 1999 - Hi, My brother in law wanted to know how long a replacement heart valve (pig valve) will last before needing another replacement. He has had his about 5 years and he is 71 years old. John.

Jon's October 17 reply to Annie G's October 17, 1999 - Hiya Annie, The Department of Health and Human Resources just announced a report listing the exact info you need. Unfortunately, I can't find it online yet. Still, UNOS recently listed a data section for patients that, although a bit hard to figure out - will really help you. Dave's Transplant Page also has transplant center data available. I hope this helps. Jon.

Nicole Pintal, October 18, 1999 - Hi, My mom had bypass surgery almost 2 years ago. After the surgery, she had a heart attack in her doctor's office and they then decided to put a pacemaker in to help her out. Since then, her kidneys have failed and she has dialysis 3 times a week. She eats a tomato a day and that is it. The second week in October, she went into the hospital because she had pneumonia. While she was there, the doctors thought they would feed her through a tube in her nose but she vomited it out later the same day. She is not a transplant candidate because of her kidney failure and because 20 years ago, she had a blood transfusion because she had cancer. Now, according to all the tests, her body would reject the new organ. I need help. There is much more to this story, but I need some ideas on what is going on, what we can ask the doctors to look for, what we will have to face in the near future. Please help me get through this. Thanks. Nicole Pintal.

Wendy K, October 22, 1999 - Hi Jon, I appreciate all the work you have done with this and I have read The Manual. My mother was diagnosed with Congestive Heart Failure 20 months ago. Her cardiologist put her on a variety of medicines and told her to immediately cut back at her job, quit smoking and drinking, and she might make it 5 more years. In the meantime, her hip has gone out on her due to a fall 7+ years ago. She went to the orthopedist to have it looked at and he recommended hip replacement surgery after he received the OK from her cardiologist. Her cardiologist sent her in for an electrocardiogram and gave her these results on Tuesday.
      First, no hip replacement surgery; Second, her valves are now leaking moderately (prior to this there was very, very minimal leaking) and her EF is less than 20%. Did I mention she is almost 59? She is meeting with her cardiologist November 3 and I am driving to her town to go with her to discuss options. I am not a very patient person (to wait on the conversation with her doctor) and just want to know what to expect from her regarding her emotional and physical health. Also, what are some good questions that I could and should ask her doctor? I also read the info on SSD and will ask for that specific letter. Any words of wisdom will be greatly appreciated. Thank you in advance to your help. Wendy K.

Karen Edge, October 23, 1999 - Hi, I just opened my e-mail and it's hard to type through the tears. Everyone's comments have been so encouraging and it does my heart wonders to know all these prayers are going up all over the country. Being a hard-hearted court reporter who has heard almost everything, I am touched beyond expression. Please continue your prayers for us. All of you are in ours, even the ones we don't know by name. With all His love, Karen.

Jon's October 23 reply to Nicole Pintal's October 18, 1999 - Hi Nicole, I am sorry for the delay in my response but I am really unsure what to say. I have packed pretty much all my knowledge about CHF and its treatment into these Web pages and I can only say, "Read, read, read!" Then maybe you can ask us more specific questions. General questions are very, very tough to answer because we have so little information to go on. Did her cancer treatment have anything to do with her heart failure?
     Why is she not eating? Is it physical, meaning that she gets nauseated after eating, or she throws up if she eats? If so, have you tried liquid supplements to help her stay at a sensible weight? Is it mental or emotional, meaning does she want to die or is she having no appetite because she is just so miserable? Have her meds been checked over by a qualified pharmacist? Sometimes drug conflicts are the root of a patient's problems and only a pharmacist experienced in analyzing drug regimens can untangle the mess. Is she being treated by a CHF specialist for her heart failure? Is she being treated by her regular doctor for her other health problems, and if so, are they communicating well and quickly to prevent possible treatment conflicts? Is a specialist treating her for her kidney failure, or consulting with her other doctors about it? If so, what does he say? Is she retaining fluid? If so, how are her doctors treating that, in the face of her kidney failure? Unfortunately, I have lots of questions and no answers. Get back to us, please, with some more information or more specific questions and we'll answer as best we can. Jon.

Jon, October 25, 1999 - Hi. FormMailer has shut down their free forms server/script service without notice. That means my forms won't work. I had no say in this and certainly did not contribute to the Internet spam that caused them to close down. This is a direct result of spammers abusing free servers. Sorry, but until I discover a new free forms server with script, this forum is closed. I am just too tired from my heart failure to run it purely through e-mail. Let me know if you find such a service and please check back regularly to see if The Beat Goes On does indeed go on. It is a true shame to close the message boards after a 4 year run of great success helping people but until I find technical support, I must do so. Bye for now - all other pages will continue to be updated and the mailing lists will continue. Jon.

Jon, October 26, 1999 - Hi, Me again already. I am trying a new script and server to see what happens before tackling the other side of the forum. Drop me a line through this form if you don't mind - stating whether to post it or if it is just to help me test the thang. Thanks, Jon.

Anita S' October 26 reply to Jon's October 26, 1999 - Hi Jon, We sure hope that you can keep the forum going. It's the highlight of our day sometimes. If you can't keep it going, we understand, but please remember that we will miss you a lot. My husband, Gene, had what we thought was a pulmonary function test at the VA hospital in Cincinnati, but he didn't have to do the treadmill part. He did the breathing part. Is this still considered what you described as the pulmonary function test and will this give him an idea of what his VO2 is? He is unable to do the walking for a treadmill test because of his arthritis so maybe that is why he only did part of the test. He won't get to see his primary care doctor until the end of November so he has no idea how he did. He left a message with the office to let him know the results, but no one has called back yet. He has a lot of trouble breathing and they may give him oxygen if his test shows that he needs it. Thanks for your help.

Jon's October 26 reply to Anita S' October 26, 1999 - Hi Everyone, People really hooked me up with more free servers than I thought existed, all within a few minutes of my post. I was a bit overwhelmed - sometimes I forget how many people read these pages, or it just doesn't really sink in, you know? Anyway, this script seems to be cranking along fine and dandy for now. Even though it's a bit inconvenient, it works and that's what counts. A huge thank you to everyone who posted test messages for me! There are too many of you for me to write individually, but thank you, each and every one.
     Anita, I'm really not sure. They can get some useful lung function information from the breathing only tests but I don't know if a chemically induced stress test yields the same information that a true Vo2max stress test on the treadmill does. I am going to write a cardiologist friend and ask, and I will post his reply. Jon.

Jim Spraker, October 26, 1999 - Hi, Does anyone know of a competent CHF specialist or an endocrinologist in the Wytheville, Virginia, area?

Karen Edge's October 26 reply to Jon's October 26, 1999 - Hey Jon, So glad to hear from you so soon. Have you ever heard of an allergic reaction to Zocor? The doctor told him to discontinue it Friday and when I spoke to him this morning, he said he thought he was feeling better. The last few days, his shortness of breath has been better when I've been there. Again, I'm glad you're back! Karen.

Jon's October 26 reply to Karen Edge's October 26, 1999 - Hi Karen, I haven't heard of such a reaction but with any drug, a bad reaction or an interaction with another drug can certainly occur. Remember that in CHFers, our condition often goes up and down without rhyme or reason. It becomes very easy to tie any given up or down with an outside event - like starting or changing a dose of a drug, starting or ending an exercise program, making supplement or diet changes and so on. In fact, such a cause and effect tie needs to be duplicated before we can assume it is valid. Just food for thought. I'm struggling with 2 doctors who insist an effect is caused by certain meds, when I think it's not. Associations are easy to fall into and difficult to shake off once we make them in our mind. Stay frosty - open to facts rather than feelings - while never denying the feelings. Jon.

Lucy M, October 26, 1999 - Hi all, My husband Bobby had an arteriogram on the 18th. They found one of his bypasses blocked. They did a balloon angioplasty and then found another block after the first one. It is amazing the difference in his blood flow. He still has no back pain. They did not put him back on Vasotec but we see the doc for follow-up tomorrow. Thank you all for the help over the last 6 months. I wish I had been able to access a group like this 6 years ago when everything fell apart. You all are a blessing.

Janie G, October 28, 1999 - Hi Jon, I hope all is well. I'm sorry it has taken me so long to return your post but I've been spending most of my days in the hospital with my mom. She was admitted because her hemoglobin was low (7.6) on her cbc blood test. When tested again, her count was 10, so they didn't do a transfusion. I brought her home this past Saturday and she was still in very bad shape. Her breathing was extremely heavy, with her chest rapidly going up and down, she had no appetite and was very, very weak. We bypassed her primary care physician and called her cardiologist, called an ambulance and she returned to the hospital Monday evening. They began oxygen in the ambulance and this made her a little more comfortable. Tuesday she was quite excitable, trying to pull out her oxygen and the needle they were using to infuse Lasix. This morning, Wednesday, she was feeling much more comfortable, eating some and able to sleep for 3 hours straight.
     My question to you and anyone else who can help is, what questions should we be asking? Is it possible for her face to be swollen because of CHF? How close to the end could this be? Our family is spread widely around the country and it is so hard to be there all the time. By the way, her blood pressure is good, there is no swelling in her legs, ankles or feet. She was recently taken off Vasotec because her BP became too low. I know I am rambling but this is a terrible way for her to live. There is no quality, just discomfort and sadness. If anyone knows what we should be ready for next, I'd appreciate any input. God bless and take care, Janie.

Karl, October 28, 1999 - Hi Folks, I have a darling 96 year old widowed aunt who has always been fiercely independent and self-reliant. She is physically trim, real sharp mentally, emotionally stable, and loves to walk and care and cook for herself but she is legally blind and lives alone, with daily assistance from a lady friend. Recently she developed shortness of breath and swollen legs. Her doctor diagnosed CHF, put her on oxygen "for the rest of her life" and told her to elevate her legs several hour a day and sent her home with little explanation and no medicine. She may have a good deal of quality time left but I worry that they think she's on her last leg. What can a loving and loyal nephew do to make sure she is getting the best maintenance regimen?

Jon's October 28 reply to Karl's October 28, 1999 - Hi Karl, I hesitate to go into detail on this subject again so soon. In short - get her away from her doctor and into the hands of a CHF specialist who will treat her as a person with a life, not as a worn-out chart number. Soon. Jon.

Karen Deitemeyer's October 28 reply to Karen Edge's October 26, 1999 - Hi Karen, You didn't say what kind of an allergic reaction your dad had to Zocor, but my husband cannot take it, Lescol or Lipitor because in each instance he has had extreme deep muscle aches and pains. If your dad had a similar reaction, you might want to talk to his doctors about trying a non-statin based cholesterol drug. I hope your dad's breathing has continued to improve. Karen Deitemeyer.

Bill D's October 28 reply to Karen Edge's October 26, 1999 - Hi Karen, Both Zocor and Lipitor made me nauseous after a few weeks. One was a trial and I had to drop out. Yesterday I received the results of a blood test. My cholesterol is 240 and LDL 170! They told me I wasn't the only patient who had problems with the statin drugs. They wanted me to try a new one by Bayer called Baycol. It's cheaper than the others and has fewer side effects, they say. It's about $1.25 a pill compared to $1.85 and $2.40. Be still my heart! I started it yesterday night. Bill D.

Lucy M, October 28, 1999 - Hi Jon, It's me the pest again. I still cannot read the CHF posts. I figured out that I can CCP them to myself and read but it does take a lot longer. You asked what my browser was. The webtv newsgroup said we have a Mozilla 3.0, whatever that is. They said it is compatible with Internet 2.0. That means nothing to me. I guess nobody else is having a problem. I'm so glad we're back.

Jon's October 28 reply to Lucy M's October 28, 1999 - Hi Lucy, About 80 to 90% of all technical problems with my site come from Webtv users, for what it's worth. My site is very plain. I use HTML 3.2, an older version than the current version 4.0, so that shouldn't be a problem, unless by version 2, they mean HTML version 2. That's ridiculous though, since no one has used version 2 in a couple of years and version 4 is the current version. I do not use any javascript or ActiveX, no server side includes, no perl, no cgi generated or dynamic pages, no sounds (1), no videos (1), nothing but a few standard Java applets like the chat room and the navigation applet (GoUrl) at the bottom of most of my pages. I do use style sheets but only for margins and font-families. You can disable them in a version 3 browser like yours in "Options." You might try that and see if your problems clear up. Otherwise, I can only suggest pushing the Webtv tech support really, really hard to get things running properly for you again. I run my pages through validators and Al H doublechecks them for me, so the HTML should be fine. Let me know if the Webtv people come up with anything. Feel free to give them my Urls or e-mail address if they have any questions about my pages' construction. You might even forward them this post for starters. Jon.

Gail, October 28, 1999 - Hi, My Mom has CHF. Two and a half years ago, she had open heart surgery to repair a mitral valve that was leaking. The surgery was unsuccessful and she barely survived. For the last 2 weeks she has been experiencing heart pains that according to her description are not too sharp but last a minute or so. She just sits down and waits for them to stop. Sometimes this happens once or twice a day. I've asked her to go to the doctor but she doesn't feel it would do any good right now and if she feels worse, she will. I am worried this is a prelude to a major heart attack. She is definitely slowing down. She has a bottle of nitro by the bed and in the living room. She has no swelling of the ankles but a bit in her hands. Can anyone shed some light on this? Thanks. Gail.

Ann Marie K, October 29, 1999 - Hi, Just an update on my 85 year old Mother with CHF, diabetes and COPD. My mom is coming home from the hospital today after being there almost 8 weeks. She slipped into end-stage CHF and nearly died 7 weeks ago. I am happy to report that after 5 dialysis treatments she no longer needs them. Her eating is great. She didn't hardly eat for about 6 weeks due to the heart and kidney failure. She was completely bedridden and now can get around with a walker. I know that the power of prayer and a wonderful doctor has made this possible. I know that miracles happen. God bless to all.

Darren B, October 30, 1999 - Hi, My Grandad has severe CHF and has lost his apetite and most of his energy. He has real bad problems breathing and having general energy to live life to the fullest. He is 74 years old and has always been very fit and well. The doctors have put him on a drug called furosemide and aspirin also a vasodilator. He also has real bad problems with fluid on the lungs. Please help. I know he is old but he is my grandfather and I love him dearly. I need some information as it feels like the doctors are just letting him slip away! I thank you for any help anybody can give me. Darren from the UK.
Jon's Note: Hiya Darren. Have you read The Manual yet?

Ellen, October 31, 1999 - Hi everyone, I haven't posted in a while, but I do look at the postings on a regular basis. Jon, I am sure glad you were able to find another server. This forum helps more people than you could possibly know.
     I have a question regarding K-dur. My husband, who is 47 years old, has CHF. He takes 20mg Vasotec twice a day, 20mg Prilosec, 0.25mg Lanoxin, one mg folic acid, 20mg Zocor, 120mg Lasix twice a day, 4mg Coumadin, 500mg magnesium, a B-complex vitamin, 2.5mg zaroxolyn twice a week, and 20meq K-dur. He was taking K-dur twice a day, but 3 weeks ago was cut back to once a day. Since then, he has been feeling really lousy and very short of breath. I know people who have CHF can go up and down, but was wondering if them cutting his potassium in half may be why he is feeling so bad. He does see a CHF specialist, and did try to get in to see someone yesterday, but they were all booked up. He told the receptionist what he wanted to see the doctor for but was told they were not available. His next clinic visit isn't until December 5.

Jon's October 31 reply to Ellen's October 31, 1999 - Hi Ellen, His K-dur dose should be based purely on his blood test results. I assume he is having his serum (blood) potassium levels checked at least every 3 months, and that his K-dur dose was changed right after one of these blood tests, right? You can read up on potassium problems at Nutrient Stew and at Medspeak. At Medspeak, look under the terms "hyperkalemia" and "hypokalemia."
     Unfortunately, our ups and downs are incredibly hard to figure out a cause for sometimes. It could be that his cardiac output is falling and he needs a higher ACE inhibitor (Vasotec) dose. Maybe he should start a beta-blocker. His diuretics could be throwing his potassium or magnesium levels out of whack. He could be dehydrated - don't forget that possibility. Start by checking for potassium and magnesium level problems with a blood test, and in the meantime be sure he isn't dehydrated by having his doc ok a cutback in his Lasix dose for a few days. Then, take it from there.
     His doctors should always be available, if only by phone. That's a must for a CHF doctor. If you can't get his CHF doc on the phone, well, I suggest a talk with that doc about priorities, and if he isn't likely to make himself available from now on, fire his sorry self and get another doctor. He works for you, not vice versa. This is your husband's life we're talking about here, not some theoretical "case" or "chart." 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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