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

Bill D's 3-1 reply to Kat's 2-29     getting info & support, & more
Clara K 3-1     Kirk has stomach cancer - prayer request
Lesa M's 3-2 reply to Gus R's 2-28     what is a-fib? & more
Kat 3-2     update
Lori W's 3-2 reply to Gail H's 2-24     you might try hospice
Sue 3-3     husband has damaged heart & I'm scared
Jon's 3-3 reply to Sue's 3-3     for what it's worth
Gus R's 3-3 reply to Lesa M's 3-2     a-fib & Websites
Lesa M's 3-4 reply to Gus R's 3-3     pics, update, a-fib, booze & CHF
Ruthie A 3-4     need advice about support group
Lesa M 3-5     what now? & prayer request
Jon's 3-5 reply to Lesa M's 3-5     alcohol, Coreg & more
Ben B's 3-5 reply to Lesa M's 3-5     heart failure & booze
Lesa M's 3-6 reply to Ben B's 3-5     heart failure, EF & booze
Kat's 3-6 reply to Ruthie A's 3-4     support groups
Karen P 3-6     husband's severe joint pain - questions
Lesa M's 3-7 reply to Sue's 3-3     coping, faith & more
Lesa M 3-7     brother's on the right track
Jon 3-11     made it back
Lesa M 3-11     medic alert IDs
Annie G 3-11     can my husband fly in commercial airliners?
Jon's 3-11 reply to Annie G's 3-11     flying
Sharon G 3-11     seek southern Oklahoma CHF doc & more
Ben B's 3-12 reply to Annie G's 3-11     commercial airplane flights
Rita's 3-12 reply to Sharon G's 3-11     Oklahoma City CHF doc
Theresa 3-13     how do I cope with dad & his illness?
Cheryl 3-13     which transplant center?
Jon's 3-13 reply to Cheryl's 3-13     transplant center?
Bill D's 3-13 reply to Theresa's 3-13     hospice & other points to ponder
Tara B 3-13     do mom's chest pains relate to CHF?
Darlene's 3-14 reply to Theresa's 3-13     possibilities, coping & more
Paul B's 3-14 reply to Theresa's 3-13     possibilities, coping & more
Theresa 3-14     more info
Bill D's 3-14 reply to Tara B's 3-13     that may be angina & more
Mike W's 3-15 reply to Theresa's 3-14     points to remember
Jon's 3-15 reply to Karen P's 3-6     joint pain
Bobbi Z 3-16     husband's tremors, sleep & other problems - help!
Jon's 3-16 reply to Bobbi Z's 3-16     some possibilities
Ann Marie K 3-16     questions about caregiving & Social Security
Darlene's 3-16 reply to Theresa's 3-14     caring for a dying parent
Clara 3-17     chemo, radiation with CHF questions
Pat 3-19     thank you for the site & more
Michelle 3-21     seek others with such an experience
Beth A 3-21     caring for weeping legs questions
Jack's 3-22 reply to Beth A's 3-21     please explain weeping legs
Linda 3-22     what does end-stage really mean?
Jon's 3-22 reply to Linda's 3-22     end-stage CHF
Trish 3-22     why is my dad spitting up blood?
Jon's 3-22 reply to Trish's 3-22     it probably isn't CHF related
Pat S' 3-22 reply to Trish's 3-22     in similar situation
Karen P 3-23     weeping legs & dialysis questions
Becky 3-24     gout, joint problems & pain - what to do?
Jon's 3-24 reply to Becky's 3-24     see a doctor as soon as possible
Shirley M's 3-24 reply to Karen P's 3-23     weeping legs & dialysis - what now?
Karen P's 3-25 reply to Becky's 3-24     joint pain & Vioxx
Brian 3-26     need info about heart failure
Gus R's 3-27 reply to Brian's 3-26     info about heart failure
Jean S 3-27     seek help for my mom
Jon's 3-27 reply to Jean S' 3-27     a start
Becky 3-28     not having much luck so far
Jo 3-28     is my mom's edema serious?
Patricia D 3-28     what is hypertensive heart disease?
Stacey 3-28     seek New Jersey CHF specialist -help!
Ben B's 3-28 reply to Patricia D's 3-28     hypertrophic cardiomyopathy maybe?
Pat S 3-29     seek New Orleans' CHF specialist
Cheryl 3-29     seek test info
Jon's 3-29 reply to Cheryl's 3-29     it's a TEE - has anyone had one?
Sue 3-29     Lasix dose, uncertainty, no motivation questions
Jon's 3-29 reply to Sue's 3-29     Lasix dose, uncertainty
Joe 3-29     smoking & the heart questions
Cheryl's 3-30 reply to Pat S' 3-29     New Orleans' CHF doctors
Nancy C 3-31     intro, need help fast
Jon's 3-31 reply to Nancy C's 3-31     some questions to ask
Kat 3-31     update, question about numbers

Bill D's March 1 reply to Kat's February 29, 2000 - Hey Kat, Is his cardiologist a heart failure specialist? I think he needs to fire that guy and get somebody else! You can see from the messages posted here that every time a cardiologist says we'll die, he's wrong! It's important for him to go to a CHF clinic where the doctors specialize. Mayo would be great. I wonder if the reason he can't sleep is because he can't breathe? Many of us use 3 pillows to get our chests up. Some sleep in a reclining chair.
     Welcome to Jon's Place! In addition to the forums, Jon has compiled over 300 pages and links to information you should know about CHF. On the top of this page click on CLICK HERE across from "Site Index." You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures, and how we try to cope with CHF. Bill D.

Clara K, March 1, 2000 - Hi, Please keep us in your prayers right now. Kirk's drop in blood count was from stomach cancer. He has surgery tomorrow. The doctors say it doesn't appear to have spread. I sure hope they're right! If they hadn't been checking his blood so often for the CHF meds, who knows when they would have found this, so I guess we were lucky in that respect. I know this isn't the subject here, but I feel like this place is full of friends, even if I don't really know any of you. Thanks again for being here.

Lesa M's March 2 reply to Gus R's February 28, 2000 - Hi Gus, Thank you so much for your reply. It is so nice to know someone else knows what we're going through. Disappearing conditions are freaky, to say the least. I had considered the technology factor regarding the valve. Forgive my ignorance, but I am uncertain as to the definition of a-fib. Lesa M.

Kat, March 2, 2000 - Hi, This is just an update on my friend. He saw the cardiologist - yes, the same one who gave him the deathly news. The cardiologist apologized many times for his abruptness and then proceeded to inform my friend that what he needs is another bypass. The only problem was that they were having trouble reading the films. So a lot of my companion's stress factor and worries have diminished but we still have a long way to go. He is still being treated with triple drug therapy and will now start using a treadmill at least once a week at a monitored heart care facility. We are at least a little more optimistic than 4 weeks ago. I will continue to keep you updated and thanks for all the advice. It has really helped. It is great to find a Website that is about heart failure "written" by people who are living it. Thanks again.

Lori W's March 2 reply to Gail H's February 24, 2000 - Hi, Try looking into Hospice care. My mother was taking care of my grandmother. Her brother arranged to have hospice come in a couple of times a week. It was a Godsend. Neither she nor I really knew up to that point how much she needed the support in taking care of my grandmother, and it sounds like you need some support as well. I do know that it is limited to those persons who have 6 months or less to live, and I don't know who makes that determination. The care can continue for longer if the individual survives past that point. They can pick up medications and assist with bathing, and will generally give you a chance to get out of the house. Because of the services they provide, they may even know of a doctor who would be willing to make house calls. If not, at the very least you could get some support. God bless.

Sue, March 3, 2000 - Hi, I am really confused at this point so I may not make much sense, but here goes. My husband had open heart surgery this year. After a few weeks he was doing fine but then we had a setback. The doctors said it was pneumonia. He just had a echocardiogram done today and the results were CHF. He only has 20% of his heart fuction left. It sounds so scary. He is 40 and I am 38, with 2 children ages 8 and 12. I care for his mother at home who suffers from Alzheimers. Please, any advice would be a blessing at this stage. God bless.

Jon's March 3 reply to Sue's March 3, 2000 - Hi Sue, I obviously can't make any promises about your husband's future, but consider this: When I was diagnosed, my EF was 13%. Here I sit more than 5 years later, typing this to you. ;-). Jon.

Gus R's March 3 reply to Lesa M's March 2, 2000 - Hi Lesa, A-Fib is short for Atrial Fibrillation, which is one of the many types of irregular heart rhythms. It is one of the less serious ones since it is not life threatening, but it can make one's life miserable at times. Jon's Medspeak page has the definitions of many terms like this one.
     I spent a few minutes at your Web site this morning and think it looks good. I'm sort of a private old geezer but am thinking about sending you a photo of my wife and our cat for your photo contest, if you allow cat photos. The last I knew Jon wouldn't allow any cats here, but that might have just been on one of his cranky/testy days. ;-) Best wishes, Gus R.

Lesa M's March 4 reply to Gus R's March 3, 2000 - Hi Gus, A picture of your wife and cat would be great! Any pet is fine. I sure am lacking in contestants. <lol> You may be a private person but I'm sure you're not an old geezer. I did some research on a-fib and included some info on a new page to my site. Since I didn't know what it was, I figured someone else might be as Medspeak-challenged as me. <g> I missed it here on Jon's site. I will have to surf it some more. By the way, about my brother, the doc now says his EF is up to 60%. he is pretty sure it's alcoholic cardiomyopathy. What kills me is that the doc told him he could drink again! After all this and him quitting cold turkey! Any clue on that? I'm sure scratchin'. Thanks for the ear, Lesa.
Jon's note: He needs a new doctor pronto! Alcohol is a cardiotoxin for those with weak hearts - that's straight from the Merck Manual - a premiere medical textbook!

Ruthie A, March 4, 2000 - Help! I have been asked to help our church's counselor to start a support group for those with chronic or terminal illness and their caregivers! I have no clue on how to begin, especially with the caregivers' side of it. Does anyone have any suggestions or ideas? Please e-mail me. Thanks, Ruthie A.

Lesa M, March 5, 2000 - Hi Jon, I agree but my brother and his wife seem to think this is ok. I'm scared. Apparently they are going to take him off Coreg also. What is gonna happen if they do this? I'm in need of some serious prayer.

Jon's March 5 reply to Lesa M's March 5, 2000 - Hi Lesa, He'll be ok coming off Coreg as long as it is done gradually and his CHF is truly non-ischemic (not from clogged arteries). About the booze, I quite bluntly question his doctor's competence. Like I said, I am not stating an opinion but a medically accepted fact - that alcoholic cardiomyopathy means no more booze - ever. Alcohol is considered a "cardiotoxin." That means that it can literally poison the heart. Pray hard, and in the meantime ease him into the notion of changing docs, although since he's hearing what he probably wants to hear, I doubt he will even consider it. For what it's worth, he should be kept on an ACE inhibitor indefinitely. Jon.

Ben B's March 5 reply to Lesa M's March 5, 2000 - Hi Lesa, This may sound strange but as a recovering alcoholic with 11 years sobriety and cardiomyopathy, I feel safe in saying it: as serious as heart disease is, it is not the most important reason for an alcoholic to quit drinking. Assuming your brother is an alcoholic, the booze will not only kill his heart, it will kill his brain and most importantly his soul. It will poison his family relationships. Why any person who has been able to quit would go back to drinking is beyond me.
     Also, although her condition is not from alcohol, read Pat L's post on the CHFers' side. Her EF went way up too and came down as well. A much improved EF can go back down in a big way. If a person continues to drink, they will most definitely suffer a relapse. The reason he and his wife both think it is okay is because they are codependent. This is real denial. Knowing alcoholics, I know there is not much you can do but pray, so good luck.

Lesa M's March 6 reply to Ben B's March 5, 2000 - Dear Ben, Unfortunately I have a lot of experience with alcoholism. Everyone in my family is or was addicted to the sauce. For some reason the Lord spared me. My first husband was alcoholic and abusive as well. I guess I kind of found a silver lining in my brothers DCM, since I thought that at least he quit drinking! That's something good from all this. Now, I'm back to searching for the silver lining again. I took your advice and read Pat's post. Since I have been coming to Jon's, I've realized that EFs are like yo-yos. My brother is running on false hope and denial. Without getting into it with them, I can't get my point across. Back to square one. Praying for all, Lesa.

Kat's March 6 reply to Ruthie A's March 4, 2000 - Hi Ruthie, I can't give you too much help right off hand but for about 3+ years I belonged to a group called "Guide for Living." It was designed by a priest named Ernie Larson, a recovering alcoholic. He started this group to help people deal with any number of things going on in their lives. My problem was an alcoholic husband at the time. Others were dealing with cancer, divorce, etc,... I hope this might help for a start.

Karen P, March 6, 2000 - Hi, My husband has CHF and an enlarged heart. Last summer, his EF was about 20%. I would guess him to be class 3. He really has no shortness of breath or congestion, but he is extremely weak and fatigued. I mean extremely. He is 59 years old. He is on the usual suspects: Lasix, Altace, Lanoxin, CoQ10 and Coreg. he was taken off Zocor last fall.
     He has excruciating joint pain in his knees, ankles and wrists and he is truly miserable. It's a vicious circle of course, since he doesn't exercise because of this but I suspect if he exercised, it might not be so bad. I am just wondering what is the cause of this awful joint pain, as it relates to CHF. Certainly, he has muscle wasting but the red flags we have been told to watch out for, such as SOB and congestion/edema are not giving him much problem at all. Still, he almost cannot get up out of a chair or walk due to the pain. I am so afraid he will lose the use of his legs. Why would this relate to CHF? Karen.

Lesa M's March 7 reply to Sue's March 3, 2000 - Dear Sue, I'm sorry to hear of your difficult situation. You seem to have your hands very full. I'm not an expert but I can tell you this from reading posts here at Jon's Place: situations that look bleak often turn around. Things can change so quickly. Prayer and faith help so much. Sometimes we just need to give our worries to God and let go. I have experienced several miracles and have been through so many difficult situations where the Lord was my only lifeline to sanity.
     I almost lost my mother 2 years ago this June, on my birthday. She overdosed and cut her wrists and throat. She lay in the tub overnight. She had severe liver damage and should have died. We prayed hard and the Lord saw fit to give us a miracle. She is alive and well today, and functions normally, with only a few restrictions from liver damage. From my past experiences, I might suggest that you take some time off to yourself; A simple walk or a candle-lit bath with soft music, if you can't get away. It truly helps. I will be praying for you and your loved ones. Lesa.

Lesa M, March 7, 2000 - Hi, Just a note - a happy one! My brother has decided not to start drinking again! Yahoo!

Jon, March 11, 2000 - Hi everyone, Well, my new pooter is now officially pooting, so here we go again! Sorry for the delay. Jon.

Lesa M, March 11, 2000 - Hi everyone, I hope you are all well. I wanted to pass on a site I found for my brother: It's an online site for ordering Medical Alert Identification bracelets and necklaces. I am persistant in getting my brother one. I think it's very important. I have not tried this site yet but they are a member of the BBB-online. The regular "Medic Alert" toll free phone number is 1-800-432-5378; this is the company that keeps your emergency info on file (it costs more than the American Medical brand). I hope it helps someone.

Annie G, March 11, 2000 - Hi Are there any things that need to be done differently if flying? Does my husband need to restrict his liquids the morning we fly? Will he need to extra diuretic that evening? I'm asking because my mom's ankles used to swell really badly when she flew. She didn't have CHF but I wondered if flying and pressure changes affect the fluid balance in the body. Thanks.

Jon's March 11 reply to Annie G's March 11, 2000 - Hi Annie, You can find some "official" information here. I hope others can relate their personal experiences. I can only say that if a person is "in" heart failure at the time, they probably shouldn't fly. Jon.

Sharon G, March 11, 2000 - Hi Jon, I hate to bother you but do you know of any CHF specialist in the southern Oklahoma area, probably be in Oklahoma City, I guess. I have finally convinced my mom to go to one instead of the doctors here. They say she is in class 4 CHF and there is nothing they can do. They don't seem to want to even try. My mom is 71. She went to her doctor yesterday and they did x-rays and said everything looked better than expected. Her heart may have gotten a little smaller and there was no congestion. She has a really bad urinary tract infection though and they put her on an antibody that cannot be taken with her magnesium oxide. Hopefully, she will be ok for a few days without it. They cut her Lasix to one tablet per day but said nothing about rechecking her blood for potassium level. At least this doctor (her regular GP) did a blood test yesterday. That is more than the heart doc did 2 weeks ago, and then didn't have her come back for 3 months, with no mention of blood tests or anything. Anyway, I finally convinced her to see a specialist if I can locate one. Thanks for all your patience and support. I hope that you are feeling okay.

Ben B's March 12 reply to Annie G's March 11, 2000 - Hi, I'm going to preface this by saying you should always check with your doctor. Planes are pressurized, and the information seems to indicate that this pressurization puts the plane's atmosphere at a level similar to 1500 meters to 2400 meters. This is about the altitude of Denver, and I don't see any studies saying people should move out of Denver if they have heart problems. I have flown to Europe and Asia with my CHF (EF 25%). Just a couple months ago I flew to the Pacific Northwest. All these trips were wonderful and well worth the risk to me. If you tend to retain fluids in your legs this may be a problem, but I don't so I can't address this.

Rita's March 12 reply to Sharon G's March 11, 2000 - Hi Sharon, We saw your post. There is a CHF specialist in Oklahoma City named Dr. Phil Adamson at University Hospital. I sent you an e-mail with additional info. Let us know how you feel about Dr. Adamson if your mother goes to see him. Rita.

Theresa, March 13, 2000 - Hi Everyone, I just found this site and it's a relief to find somewhere to vent and ask questions. My father suffered a series of heart attacks over the last 10 years, the latest being just before Christmas, 1999. He was treated in the hospital and released after 6 days with a lot of heart medication. A week later he was advised that he also had inoperable lung cancer. Although Dad remained on his heart medication, his breathing got progressively worse, to the stage where every breath was a gasp. Upon changing doctors, his medication was changed, with some minor improvement in the breathing department.
     He is completely bedridden and lacks the energy to even eat. He has lost over half his body weight and the nurses and doctors tell me that I can't do more than offer him food, as his intake is sufficient for his bodily needs at the moment. He complains that he can't swallow food, and I have to vitamise everything for him. His medications are being changed weekly, which results in bad weeks and very bad weeks. He has loads of chest pain. He also passes out very frequently.
     He refuses to sit up at all and will not "prop" on pillows, but lays flat on his side. He even eats and drinks in this position, as he complains of dizziness if sitting. He won't wash and refuses to let anyone wash him. He is smoking like a chimney, and also uses Ventolin. He lives with me (naturally), but I'm at a total loss as to how to manage or help him. He does try to get out of bed occassionally, but usually ends up in an intidy heap on the floor. He always does this when I leave the room for a moment.
     My Dad believes that the medication he is on will eventually give him back his energy but with the wastage in his muscles - his legs are thinner than my arms - I have serious doubts. Can anyone advise me how to cope with this condition? It is a difficult and demanding time, and I really want to help Dad improve his quality of life; I just don't know how. I live in Australia.

Cheryl, March 13, 2000 - Hi, I have a question for Jon. What are the best hospitals in the US for heart transplants? I've been trying to find this information on the Web but so far, no luck. My husband has been referred to the Ochsner transplant team in New Orleans, Louisiana. They've done over 500 transplants, but is that enough?

Jon's March 13 reply to Cheryl's March 13, 2000 - Hi Cheryl, It's simply impossible to nail down the "best" place for any given person to get a heart transplant done. More of the outcome depends on the organ/tissue match than perhaps any other factor and the center cannot control that factor to any appreciable extent in a heart or liver transplant. Oschner has a good reputation as far as I know. I would choose my local center over a larger and busier center in another city. After all, the surgery itself is perhaps the smallest part of the transplant process. It is less technically demanding than bypass surgery. It is the degree of personalized and knowledgable care after surgery that makes the difference, in my opinion. This is not like angioplasty or bypass surgery, where surgical technique and speed aid a recovery which is complete in a couple of months. This is life-long ongoing care, so the process should be viewed differently. Jon.

Bill D's March 13 reply to Theresa's March 13, 2000 - Hi Theresa, You certainly have your hands full! Your Dad must smell pretty bad by now. Do you suppose he's embarrassed to be washed by you? Maybe if you let him wash his own "privates" he'd agree? Is there anyone else, preferably a nurse, who could come in to do it? How old is your Dad? Have the doctors given you their prognosis as to how long he might live? The reason I ask is that here in the States, we have hospice outfits. If a patient is pronounced "terminal" in the next 6 months, they will come to our houses or take him into their facilities and provide palliative services. They will give him pain medicine and wash him and keep him comfortable to the end. I think you have Hospices too. Let us know what the doctor's say. Bill D.

Tara B, March 13, 2000 - Hi, Thank you so much for this site. My mom has just been diagnosed with CHF. She has been complaining of pains in her chest for at least a month. Her heart doctor says it is her hiatal hernia. Her family doctor is treating her, but the medicine (Prilosec) doesn't help. She says that she is fine when she wakes up, but it starts to hurt a little after taking a shower, a little more if she goes up and down the stairs, and by lunch it hurts a lot. Some nights she can't sleep because it hurts so much. I didn't see anything about chest pains with CHF. Is it a symptom of CHF? Thanks!

Darlene B's March 14 reply to Theresa's March 13, 2000 - Hi Theresa, I am pretty familiar with what you are going through. My mother had lung and brain cancer about a year ago. Her prognosis was weeks to months. She made it 7 weeks. We took care of her the best we could, with the help of a hospice group. It's very hard both physically and mentally to deal with, watching your parent lose everything. Just remember that he also knows what is going on and it must be humiliating to him in ways we can barely imagine. My dad was recently diagnosed with CHF along with other problems. He was also just sitting around, complaining of dizziness. We finally found out the medicines had made his potassium go up so high it was causing him the dizziness. I believe it will also make them pass out. Have they done blood work recently to check all levels?
     My dad was also dehydrated because of the meds, and was drinking from a straw. he was barely eating because it was difficult to swallow. I don't know if they are the same reasons here, but it's always worth a phone call to the doc. Check and see also if you have some type of program like hospice. The hospital that diagnosed my mom helped us set up everything and that was a wonderful help. They helped with medication, nurse visits, etc,... She was a very happy lady when she went, being at home and being able to spend her last time with her family. I hope this helps. By the way, after my dad was admitted and they got the extra potassium out, he is up and about and working. I just hope he doesn't overdo it now! Darlene.

Paul B's March 14 reply to Theresa's March 13, 2000 - Hi Theresa, I'm sorry to hear things are so rough. I lost my dad to CHF in 1998 and my mother in law to CHF and throat cancer 4 months ago, so maybe some of this will help. If your dad won't eat because of discomfort, you may want to try giving him Ensure. As far as his breathing, it's probably pretty obvious the smoking is not helping it. Is he on oxygen? Certainly care has to be taken to keep the oxygen away while he's smoking, but he may find the pleasure of breathing easier more necessary than the need for nicotine. With CHF and lung cancer, his oxygen level may be too low.
     Since he's be lying down so long, he's probably going to get dizzy with any change of position initially. You may want to check into some home physical therapy. Even some arm swirls and leg lifts while he's laying flat will help the circulation a bit. With regard to him trying to get up while you're not there, that's something I saw with my father. These men have been self-sufficient all their lives and now this - it's hard to take. Combine that with a low oxygen level and he may be trying to show you that he can fend for himself, and the next thing he's on the floor. My prayers to you and your father.

Theresa, March 14, 2000 - Hi, Thanks to everyone who answered my original post on my father. To clarify a few things, we do have a visiting nursing service that comes in once a week. Dad's illness is terminal but we don't have a prognosis on time. He won't let the nurses help him wash and he refuses to even sponge himself although he is capable of this. He never was a great one for washing so perhaps he really doesn't mind not smelling too good.
     I have spoken to his current and former doctors, and they both refuse to give any idea on prognosis and the future. One tells me that it's only a matter of a short time and there's nothing more to do while the current one just says to take it all one day at a time and see what happens. Dad knows that his condition is terminal and his only hope is to recover enough energy to be a little self sufficient. He hopes the pills will allow this but the doctors won't commit themselves on it.
     I have discussed palliative care with Dad but he refuses to have "strangers" look after him. He says he'd sooner be alone as "strangers" tire him. He was always a hard working man (bricklayer and builder) and now he is unable to move from his bed. He hates the fact of losing his independence. I understand this but I'm terrified he's going to seriously hurt himself in one of his falls. We have discussed hospital care, which he refuses. He wants to stay at home and I accept this, as I don't want to send him to strangers at the end of his life. I really want this time with him. I know that's selfish but there's so little time left.
     The doctors can't explain the swallowing problem and I don't know the cause. Dad's had full blood work-ups and the doctors have not mentioned anything unusual in them. I don't know what to do to make him more comfortable and the nurses have no real suggestions. I suppose I'm just hoping for a miracle. I just want him to be better. It's just so hard to see a strong, determined and independent man turn into such a sad, weak person. It's a cruel fate for anyone. I really do appreciate all your thoughts and suggestions, and I really appreciate this forum. Please - all of you - accept my prayers for each and every one of you in your time of hardship, and accept my thanks for just being here for me. Hugs, Theresa.

Bill D's March 14 reply to Tara B's March 13, 2000 - Hi Tara, What you describe sounds more like angina that a hiatal hernia. Is her heart doctor a cardiologist? Does he specialize in CHF patients? Did they run a black hose up her nose and down to her esophagus? That's the only way to "see" a hiatal hernia. Angina goes along with CHF, particularly if she has Coronary Artery Disease. Welcome to Jon's Place! If you are only reading the messages posted on the forums, you are missing the most valuable part of Jon's Place. At the top of each Heart Forum page, click on the words CLICK HERE across from Site Index. You'll find Jon has a gold mine of answers to your questions. Start by reading The Manual. Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate her doctor, questions to ask him and all sorts of things you and your Mom should know! Bill D.

Mike W's March 15 reply to Theresa's March 14, 2000 - Hi Theresa, Selfish for wanting to spend time with your Dad at end of his life? Hardly; that is being a loving daughter. There are many people who would run from this situation, Dad or not. Give yourself credit and kindness for being in the second most painful position in human life (your dad being in the most painful place one can be). My dad died of lung cancer and has a similar background to your dad. He was a hard working laborer his whole life and like your Dad, he is now watching himself literally disappear. I think he's real scared (obviously) but also real angry. You just try to be with him the best you can and remember that you now need some TLC yourself. Don't minimize how much this hurts you! I wish I could relieve your suffering but all I can do is say I understand how hard this time is and wish you some semblance of peace. Love and peace, Mike Wafkowski.

Jon's March 15 reply to Karen P's March 6, 2000 - Hi Karen, Joint pain of the magnitude you describe is not usually associated with heart failure. However, it could be. An inflammatory problem is more likely. Of course, CHFers do get a lot of unexplained pain due to lack of proper oxygen supply to all the parts of our bodies. Blockages of peripheral arteries causes leg pain, and is known as PAD or peripheral arterial disease, but this doesn't normally affect joints, but rather the whole leg. He should probably see a primary care doctor for this, who can refer him to an appropriate specialist if necessary. Jon.

Bobbi Z, March 16, 2000 - Hi Jon and everyone, It's been awhile since I posted. My husband Steve, seems to have become progressivly worse. The problems he is having now is with tremors in his arms, feet and legs. It started with the small "jolts" we've all experienced but now have longer duration and happen when he is awake, not just sleeping or relaxing. Our GP doc said it wasn't associated with CHF and ran blood tests for other diseases with came up zip. I'm wondering if nerve damage occurred from lack of oxygen to his extremities. He was ordered to be on 24 hour oxygen several months ago but uses it only when he feels out of breath. His breathing is labored and has been for months. He has not had a good day since before the holidays. He does not sleep. The Ambien makes him weird, up at night walking around doing things like talking to the coffee pot and drinking steak sauce from the refrigerator. I'm not joking!
     A year ago last November he was given 6 months to live. Because he was considered terminal, he was given morphine. He outlived the prognosis so the doc took him off and Steve went through more than 2 months of withdrawal. We wondered if the jerking had come from the withdrawal, but enough time has now elapsed that it shouldn't be the cause. So if anyone out there has experienced these tremors, please contact me. Our next stop will be a neurologist but we would like to avoid that if possible. Steve is so sick of doctors, it's hard to get him to his cardiologist any more.
     His meds are Aldactone, Lasix, Coumadin, Monopril, Mirapex, Prozac, Ambien. The doc tried him on Deseryl and Ativan, which he couldn't handle. They made him feel too weird. This has gone beyond what we thought was RLS. Steve has right-sided heart failure. Any input will be appreciated. Thanks and God bless us all. Bobbi Z.

Jon's March 16 to Bobbi Z's March 16, 2000 - Hi Bobbi, First, I would say that he needs to talk to his doctor about getting off Ambien, but quick. I speak from personal experience on this. He is suffering from actual blackouts similar to those alcoholics have when he does those weird things. I had the same problem, actually walking around talking to my wife and not even realizing I was awake. Ambien is a great sleeping pill but it is only meant for short-term use! Extended use has very bad effects on a person.
     I'm not sure what health problems your husband has but what you describe sounds like a dopamine problem similar to Parkinson's or Restless Legs Syndrome. I doubt that it's due to oxygen deprivation but he should go ahead and see a specialist as soon as possible to prevent it from getting worse. I think most of us CHFers share his distaste for doctor visits. I know I do. Still, when a symptom may point to a serious underlying condition as his tremors might, we just have to bite down hard and go see the goobers anyway. <g>
     I would also consider talking to his doc about withdrawing the Prozac. Recent animal studies indicate that SSRI-type antidepressants may alter the shape of nerve receptors on brain cells, with unknown consequences. I want to stress that he needs to see a psychiatrist for this since few MDs and no psychologists are up to speed on both chronic illness and such drugs, and do not really understand either the benefits or the risks involved.
     Finally, I have to say that sometimes less is more. Perhaps he needs to clear some of the current drugs out of system for a few months to see what his real health problems are, and what is being caused by the drugs themselves. I am in this process myself and have had some symptoms just completely go away once the drugs cleared my system. It sure was hard doing it at first, though. Be sure to do this in cooperation with his doctors though. Never just stop taking drugs you've been on for awhile. It can hurt you and possibly even kill you to do so. Jon.

Ann Marie K, March 16, 2000 - Hi, My Mom, who is almost 86 and has CHF, diabetes and a few age-related problems, is doing very well considering the year she had last year. I quit my job and am taking care of her in her home. I was recently informed that I may be able to be paid for this by Soical Security. Does anyone know anything about this? My Mom is probably between class 3-4 CHF. I am going to contact a social worker, but would like some personal experience input if possible. Thank you Jon, for this wonderful site. I know that the past year would have been more stressful if I didn't have such wonderful information. God bless.

Darlene's March 16 reply to Theresa's March 14, 2000 - Hi Theresa, I completely agree with Mike's reply. This is going to be a very hard time for you and your father but there will be a lot of very joyful memories that come out of it too, even though you may not think that now. I could hardly bear watching it happen to my mom, but taking care of her and spending as much time as I could with her was wonderful. I have some really great memories. It's a rough situation for all involved. If you ever just want to talk, feel free to e-mail me. Take care of yourself too. You need to stay healthy for him and yourself!

Clara, March 17, 2000 - Hi, Has anyone here had experience with chemo and radiation for stomach cancer, along with CHF? Kirk is going to have to start treatments soon and I'm really worried, since his EF is only 27% and he's still losing weight after his surgery even with j-tube feedings 12 hours a day. Is there anything I need to be aware of or should I just trust that the doctors know what they're doing? His cardiologist said he should be able to tolerate treatment but the oncologist said to expect 3 months of nightmare. Any info would be appreciated. Thanks again Jon, for this site. I don't know what I would do without it and all of you wonderful people.

Pat, March 17, 2000 - Hi, This is my first time to post. My husband was told 5 years ago he had class 4 CHF. He has an EF of 12%. Some of his days are diamonds and some days are coal, but he is alive. He is pretty active. The doctor says let him do what he can. He also has Rheumatoid Arthritis and pseudomonus of the lungs. He has to be in the hospital a lot for pnuemonia. and has had radiation for prostate cancer. The point is that God is so good: my husband is still alive. Jon, I have been going to your site for a year and have known what questions to ask our doctors about meds and test because of it. Thank you all for being here.

Michelle, March 21, 2000 - Hello, My father had a heart transplant on January 3,1999 and is doing great. He hasn't had to check back into the hospital for any complications since then, until this past weekend. He was complaining of stomach pains and after 3 days of testing, they told him today that his gallbladder is enlarged and they also saw some gall stones. Because his gallbladder is enlarged, they are going to treat him first with antibiotics and then try to drain out some to relieve the pressure. The next step is to perform surgery if they can relieve some of the pressure. Has anyone had any experience with this after a transplant? If so, please let me know. I would like to know some of the risks, more questions I should be asking, etc,... Also, I am always happy to answer or tell you of our experience with my father's transplant. Feel free to e-mail me. Thanks!

Beth A, March 21, 2000 - Hi, My Father has "weeping" legs and shallow ulcers due to fluid retention from CHF. We have tried hydrosorb dressing, Kalstat (seaweed) and now we are using Polymem to promote healing. He is still retaining some fluid in his legs. He cannot tolerate Ted hose or any type of tube dressings on his legs for any length of time. Does anyone have any suggestions on how to promote healing and cope with dry cracking skin mixed with weeping? Thank you. I hope to get him to join the message board for support.

Jack's March 22 reply to Beth A's March 21, 2000 - Hi, Some people read the headlines and some people are taken in by them; like me. So tell us about those weeping legs in the headlines, okay?

Linda, March 22, 2000 - Hi, My husband is in his fourth year with CHF. However, now we're calling it severe end-stage heart failure. How "end" is end-stage? It sounds awful to me. Believe me, I've read and read and researched and talked to doctors, and he's had excellent care. I just never asked that question, but always wanted to.

Jon's March 22 reply to Linda's March 22, 2000 - Hi Linda, It depends on who is saying it. It's subjective, not used according to any set guideline. It should mean that his CHF is class 4 and drugs no longer relieve his symptoms at rest, with no help in sight except an LVAD for short term relief and a heart transplant for long-term relief. Jon.

Trish, March 22, 2000 - Hi, My Dad has CHF. He is on oxygen all the time. He also experiences occasional bouts of spitting up blood and he then takes Prednisone, which stops it. I haven't seen anything about this in The Manual. He is 85 and otherwise does pretty well. He tires easily and often has trouble sleeping but still gets to church, out to eat once in awhile, to the bank and the store. However, one outing tires him out for a day or two afterward. All in all he seems to be doing pretty well and has been like this for 3 years. He is concerned about the blood and can't understand why he gets it. I think this is a great site, so I am glad to have found something like this. He sees a cardiologist and a pulmonary specialist and is taking a multitude of drugs. I printed out The Manual and also the New Drugs page for my mother to review. Thanks again for the site and for any information on blood spit-ups.

Jon's March 22 reply to Trish's March 22, 2000 - Hi Trish, As far as I know, spitting up blood is not caused by CHF, no matter how severe it gets. I also don't understand why prednisone would stop it. He needs to be thoroughly examined by an internist to see what other health problems he may have causing this. Jon.

Pat S' March 22 reply to Trish's March 22, 2000 - Hi Trish, My husband is 67 years old with end-stage CHF. He spits up blood too. He has Rheumatoid Arthritis and takes Prednisone for it. I've never noticed it helping his spiiting up blood, though. He has Psuedmonus of the lungs and the cardiologist believes this is causing the bleeding. He is now in his fifth year of end-stage CHF. Give him lots of love and laugh a lot with him. Sometimes that works as good as the meds. My husband is to get his LVAD next week for short-term help. Stay with this web site and you will learn the right things to ask your doctor.

Karen P, March 23, 2000 - Hi, Regarding weeping, last spring my husband accumulated about 25 lbs of water and eventually his lower legs started weeping. They were similar to a sieve. After his shower and getting dry, little drops of water would start to appear on his lower legs. I guess just too much edema and it finally has to go somewhere. I would put lotion on his legs to help the dryness, then put those little spot bandaids on each leak. We used a liner knee-high stocking and then a thigh-high compression stocking, but throughout the day certainly the weeping continued despite the bandages. Ultimately, adding zaroxolyn to his Lasix got the water off until just recently. The doctor would not admit him to drain it or IV him at that time. So that was what the weeping was.
     It is very difficult to manage since the bodily fluids continually and slowly "weep" out through the skin. A secondary issue is that my husband cannot seem to keep a balance between taking sufficient diuretics to keep the water off and preventing his kidneys from going bad. He has been asked to see a renal specialist regarding dialysis. Can anyone enlighten us or advise what this may entail, or what questions to ask? An acquaintance who was an ICU nurse for many years says do not begin dialysis, just let nature take its course and that it is a horrible experience. I know very little about dialysis but cannot at this time concur with her. He still has no SOB or congestion but his kidneys cannot handle much Lasix and the water is starting to build again. His last EF last summer was about 20. Thanks and good wishes to all. Karen.

Becky, March 24, 2000 - Hi, My husband Elton has CHF. For 8-9 months, his EF has been at 15-17%. In January he started the profiling of a gazillion doctor visits and a gazillion tests to determine if he was a good candidate for a heart transplant. The echocardiogram done then showed his EF had risen to 21%, with 20 being the cut-off for a heart transplant. That's ok right now since he didn't think he wanted to do that anyway.
     A problem that keeps resurfacing however, seems to be gout or joint pain. The first time it happened, before Christmas, our primary care physician wasn't convinced it was related to his CHF. The second time it happened, in January, it took 4-6 weeks for him to fully recover. All those transplant people told him to see his primary care physician as soon as he recovered and that he couldn't begin allopurinol while he still had the symptoms. So he waited, recovered, didn't go immediately, and now has something; is it the same thing? The other times, his gout was in a foot. This time he's had excruciating pain in his right knee. He's iced it, kicked himself (not literally) for not having made it to the doctor before more joint pain came and he's carried on uncomplainingly.
     Only someone who's had this could understand. To just watch him try to get his foot into a car is painful. He has to pull that leg up with all the strength he can put into his hands, as they grasp a pant leg. After 2-3 days, his ankle started swelling on the same leg. He's iced it, taken ibuprofen for the pain, naproxen for anti-inflammatory purposes, and he's struggled to carry on. Then after another day or two, his left wrist started swelling. We called the doctor today. He couldn't work Elton in but he called in a prescription for allopurinol, which Elton started today. Does he need to see a doctor or not? We've noticed today that his shin, from the painful knee to the painful ankle, is red streaked. Is this anything abnormal? Do we just need to be more patient? Please answer soon. Becky.

Jon's March 24 reply to Becky's March 24, 2000 - Hi Becky, Yes, you should see a doctor immediately. No, you should not be more patient. Get him examined by a doctor face-to-face as soon as humanly possible, even if it means an emergency room visit. It may be gout; then again, what if it's a viral or bacterial blood infection? Do not pass go, get to that doctor. Jon.

Shirley M's March 24 reply to Karen P's March 23, 2000 - Hi Karen, I read about the weeping your husband is experiencing. My Mom is 80 and has CHF. She is currently in a rehab hospital. It's been a struggle to get over her breathing problems but she has had no SOB for over a week. She has been retaining so much fluid (over 30 lbs) the past few days, that it's coming out of her legs. There are huge blister-like places full of fluid on her legs. A kidney specialist talked to her yesterday and is running some tests. She refuses to go on dialysis. My Dad was a diabetic and on dialysis for 7 years. He passed away 3 weeks ago. Mom is so depressed right now because of the weeping and kidney problems. She was finally able to breathe easier and was feeling better overall when the kidney stuff happened. I've run out of ways to cheer her up. Any suggestions?

Karen P's March 25 reply to Becky's March 24, 2000 - Hi, Regarding your husband's joint pain, it sounds almost exactly like what my husband has been having for some time now. He is 59 years old with an EF of about 20%. He has CHF with an enlarged heart. He finally saw the doctor on Wednesday and she suspects something called pseudo-gout and ordered up a blood test and also x-rays, but she sent him home with a prescription for Vioxx, which he began yesterday. In a matter of hours, literally, he was dramatically better. We could not believe it. However, at bed time it appeared as though he was really retaining water. This morning he had gained a couple of pounds at least. So we wait for the test results and he took the Vioxx again this morning to continue to try it. We don't know yet if he will be able to continue it, but we hope he can because it improved his very painful condition so very much. He had the same problem getting into a car, getting up from a chair, even walking. Everything was so painful for him and he was simply miserable. I hope he can keep on it. Karen.

Brian, March 26, 2000 - Hi, My grandmother was taken into the hospital yesterday due to shortness of breath and she was diagnosed with CHF. I am very uninformed about this problem and would like to ask someone to brief me on this disease and to please give me any suggestions on how to deal with the situation. Anything would be appreciated. Thank you.

Gus R's March 27 reply to Brian's March 26, 2000 - Hi Brian, If you go to the top of this page you'll see a link called "The Manual." Click on it and you'll learn more about CHF than I could ever tell you. The Site Index will also take you to lots of information. Then if you have any specific questions, give us some details and ask away.
     The short version of my reply to "brief me on this disease" is: Some people who are diagnosed as having CHF are gone within days, but others, with the proper dox, meds, and lifestyle changes, are soon living a better and healthier life than before the diagnosis. Most of us fall somewhere in between those examples. Most of us also live longer than the dox initially predict, but that may be partly due to the fact that the others don't post here. <g> Best wishes, Gus R.

Jean S, March 27, 2000 - Hi Jon, My Mom is 83 and has been diagnosed with CHF. She has only seen her primary care doctor. He has her on so many meds: Predinisone, Allopurinol, Verapamil, Lanoxin, furosemide, calicum and potassium. She is not feeling any better for all this. I have tried with no success to get her to go to another doctor but we live in a rural area and I would have to take her to Oklahoma City, which I would be very willing to do. These meds are affecting her vision and her memory. I need to know what to ask the doctor about alternative methods of dealing with this. I would like for her to feel better for the time she has left. She is all the family I have left. Any help is appreciated.

Jon's March 27 reply to Jean S' March 27, 2000 - Hi Jean, Here are some things to consider. First, print out some of the info on this site and read it to your mom. It will really help her cope with her physical problems. Start with The Manual. Next, read the Official ACC guidelines for treating CHF here. You will see that drugs like verapamil - calcium channel blockers - should not be used in people with CHF! This is your mom's doctor's ignorance of current CHF treatment facts showing up and possibly harming your mother. Then, read my FAQ page on why CHFers need CHF specialists. By this point, you will be realizing that you should probably take some time to go through the Site Index and really bone up on CHF info. Please do, and ask any questions you have along the way right here. I strongly recommend that you print out everything relating to questions you want to ask the doc so he can se it in black and white. Virtually all my info comes from respected medical journals so he will find it very tough to argue against. Keep in mind that prednisone is a drug that is considered unwise for CHFers to take. It causes a great deal of fluid retention, which is precisely what the furosemide is fighting - fluid retention. It should probably be stopped and replaced with something else if at all possible. Jon.

Becky, March 28, 2000 - Thank you Jon, for your response. We have seen a doctor face to face, and blood has been drawn. We don't know the results on it right now. The doctor really believes it is gout. He prescribed Colchicine and a different anti-inflammatory drug. Supposedly, Elton's pain is supposed to be gone after taking a colchicine pill once an hour for 10 straight hours. Well, he's taken 9 and he can't tell any difference yet. I'm hopeful he will be miraculously healed by morning. Karen, thank you for letting me know we're not the only ones who've faced such an ordeal. Thanks Jon and folks, for providing a place to turn when we feel we're "out of our league" in CHF problems. Becky.

Jo, March 28, 2000 - Hi, My mother had valve replacement and bypass surgery. She also had the laser punches done to her heart in February. She is now experiencing edema in both her legs and feet. Her doctor has increased her diuretic and water intake but that was more than a week ago, and she has not improved. She also does not have much energy, which I assumed is par for the course. I have put calls in to her cardiologist to try and find out if the condition is more serious than my mom seems to think, but he has not called me back. I thought maybe someone out there could help me.

Patricia D, March 28, 2000 - Hi, My sister died suddenly January 25. She was feeling ill for a couple of days and then died at work. We finally received the medical examiner's report yesterday. He says she died of hypertensive heart disease caused by her being overweight. What is hypertensive heart disease? I would really like to know. She was only 42 and it is hard losing her.

Stacey, March 28, 2000 - Hi, My name is Stacey. I am a 30 year old baby. I say that because I cry night and day over my father's battle with CHF. He is 63. I love him. We live in central New Jersey and I am trying to find a CHF specialist or at least a cardiologist who has some bedside manner and makes me and my family feel as though he really knows what he is doing. My father's doctor always makes us feel like we are bothering him. I can't take it.
     Is there anyone out there who has a CHF doctor they would recommend or a fantastic cardiologist in the New Jersey area? Please help. Dad's CHF episodes are occurring more frequently. Stacey.

Ben B's March 28 reply to Patricia D's March 28, 2000 - Hi Patricia, I'm very sorry for your loss. Of course I'm not sure, but I think that hypertension, which is obviously bad all the way round, can cause hypertrophic cardiomyopathy or a thickening of the walls of the heart chamber and this is a big cause of sudden cardiac death. Maybe somebody with HCM will comment.

Pat S, March 29, 2000 - Hi, My husband Cole fired his cardiologist. Does anyone know of a CHF specialist in or around New Orleans? We need one that doesn't treat him like he's already dead. He has an EF of 12%. We need some help. Thanks.

Cheryl, March 29, 2000 - Hi, My husband saw the Ochsner transplant doctor today in New Orleans. He's ordered more tests. One is some kind of echocardiogram where they insert something through my husband's mouth. It's supposed to be more accurate. I don't see anything about it on the site, and I can't remember the official name. I found the rest of the test descriptions. Can anyone help by telling us about the test? They said he'll have to be sedated.

Jon's March 29 reply to Cheryl's March 29, 2000 - Hi Cheryl, It's called a TEE for Trans-Esophageal Echocardiogram. I did not include it on my tests pages because I did not get enough personal experiences sent to me to allow an accurate description. That may be partly because the patient is indeed sedated to prevent any choking sensations when the echo transducer is placed down the throat. Think of it as an internally done echo. The results are very specific since the sound waves used in all echos do not have to go through so much tissue to get to the body parts the doctor wants imaged with a TEE. I hope some people will write you with their experience of this test since there is no substitute for someone who's been there, done that. Jon.

Sue, March 29, 2000 - Hello everyone, I posted a short message in February about my husband, who has CHF. He seems to be doing fine going to rehab 3 times a week and to the gym the rest of the days. My concerns are that he does not have any motivation to do anything. Once the exercise is done daily, he just sits around doing nothing. Is this normal? He was medically retired from the military due to having a tumor which covered 3 chambers of his heart. We were sent to Utah, where they managed to remove what they could and then the CHF happened about 4 weeks after surgery. He has high blood pressure too, so he is on a fairly large amount of meds, including 80mg Lasix daily. Does this seem like a large amount? When he was in Utah, they had him on 40mg daily and at that time he was retaining fluid. I know I am rambling on but I've got thousands of questions but cannot seem to get them together. I know in my heart that things will turn out ok but I get so depressed not knowing what our future is going to be like. Any advice would make me feel better. I often come onto this site and just read but this time I felt the need to get some questions off my chest. God bless you all. Sue T.

Jon's March 29 reply to Sue's March 29, 2000 - Hi Sue, It's easy to forget the plain truth that none of us know what is in our future. Try to remember that and perhaps then maybe it won't seem that you have lost anything, since you didn't have that certainty to start with. His Lasix dose is moderate at 80mg per day and nothing to worry about. I take 120mg a day and my doctor says that is a moderately high dose, and that 160mg per day and up is industrial strength. <g> However, many people end up on 300mg per day or so before switching to a more powerful diuretic like Demadex or Bumex. Be sure he has his blood tested at least every 3 months for potassium levels and more, since his meds can really throw those levels out of whack.

Joe, March 29, 2000 - Hello, My mother has CHF. The other day we had to pick topics in health and my topic is the effect of smoking on the heart. Can smoking cause CHF? If not, does smoking have any affect on the heart at all? Any help would be appreciated. I may not be able to check into this forum too often. Thanks! Joe.

Cheryl's March 30 reply to Pat S' March 29, 2000 - Hi, My husband sees Dr. M. Parikh in Covington and Dr. Mandeep Mehra at the Ochsner Hospital in New Orleans. I hope this information helps.

Nancy C, March 31, 2000 - Hi, My name is Nancy. This will be a long post since it is the first one. I am 42 and my husband Mark is 43. We have 4 children: Brandon, age 13; Evan, age 10; Melissa, age 8; and Patrick, age 6. Mark has been very physical his entire life. He had a massive heart attack in April, 1999. He then had a minor one in July, 1999, and another massive one in August, 1999. He has since gone into CHF. We thought he had pneumonia, after seeing an internist. He was basically drowning, since he was forcing liquids secondary to the diagnosis. He has been told he needs a heart transplant and is now in the hospital with CHF.
     They put him on a medicine that must be given by IV and he is on telemetry. The 100mg Demadex was not ridding him of excess fluid. He took 280mg on the day he was admitted. He had gained weight and had trouble breathing. Now the problem is that he is in the system for a heart transplant but not on a list. He has an ejection fraction of 20%. He is now on Disability and cannot even get the mail at the end of the short driveway. The doctor is now talking about an experimental pacemaker. It is not really a pacemaker but would save his life if he went into arrhythmia. Well, arrhythmia has never been mentioned before. This time, his doctor said that if anything would kill him, it would be arrhythmia. He has had 2 angioplasties with stents, one on each side. There seems to be no need for bypass, what is left is open.
     This operation is experimental, costs $30,000, but is free because it is experimental. My thoughts are: if it is not detrimental, maybe it could save his life. Does anyone know anything about it? As I said, I am new here. I am feeling very frustrated. Thank you, Nancy.

Jon's March 31 reply to Nancy C's March 31, 2000 - Hi Nancy, You are being asked to make important decisions based on far too little information, which is common practice among American cardiologists, who often have a hurry up and do what I say attitude. You need to sit the doctor down in your husband's room and ask questions and get plain English answers so you can understand. Here are some example questions:

  1. What type of arrhythmia does Mark have? How is this different from other types of arrhythmia?
  2. What is his specific risk for what type of events? Is sudden cardiac death a worry, chest pain, palpitations, higher risk of death down the road or right away, etc,..?
  3. What other treatment options are available - anti-arrhythmia drugs, RFA, MAZE procedure, ICD, etc,...?
  4. What are the success rates for, and risks of, the other options?
  5. Will he need combination therapy, even with the device? In other words, will he still have to take anti-arrhythmia drugs anyway or blood thinners?
  6. What is the name of the device being offered and the manufacturer: InSynch by Medtronic, Contak CD by Guidant, etc,...?
  7. Are company reps available to discuss these devices with you before entering this experimental trial?
  8. Why is he not on the transplant list now? If he is an inpatient on IV drugs for his heart, he should qualify as a status one patient on the list
  9. What other medicines is he on now? What does each one do? Would raising the doses of these drugs decrease his risk for arrhythmia? Would it improve him to the point of not needing a transplant?
  10. Why hasn't Bumex been tried if demadex is not getting the job done? Why not try combination diuretics (more than just one at a time)?

     Well, I guess you get the idea. <g> Ask, ask, ask! You really need to understand what is going on, what all the options are and why, and what the risks and benefits of each option may be before you decide on a course of action. These questions and many more can be answered in plain English by any doctor who knows his stuff and considers you important as a human being - important enough to spend a little time on. Give it a shot and please get back to us as soon as possible. Also, please print out The Manual and give it a read immediately. Jon.

Kat, March 31, 2000 - Hi, I haven't checked in for awhile. My significant other is doing a lot better since the initial diagnosis. The doctors are now saying that they are going the course of the "triple therapy" of medications. He has also started a regimen of supervised exercise for 12 weeks. He seems to be 90% of the man that was. His panic and claustrophobia attacks have stopped, thanks to some of the medication. The one thing that is puzzling us is that a cardiology nurse keeps talking about his heart being a 43 and a normal heart is 62. Does anyone know what they are talking about? I don't think it is EF. Thanks, and have a wonderful weekend. Kat.

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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