Jon 1-1 here we go again
Tom S' 1-1 reply to David M's 12-31 impotence
Gerald F 1-1 my sternum won't heal - anyone else?
Susie O's 1-2 reply to Missy's 12-31 wallet cards & more
Ben B's 1-2 reply to Tom S' 1-1 impotence
Ginger 1-2 holiday wishes, Jesus & more
Tom S' 1-3 reply to Ben B's 1-2 impotence & more
David's 1-3 reply to Ben B's 1-2 impotence & more
Jon's 1-3 reply to David's 1-3 impotence, CHF sneaking up
Judy 1-3 thank you all & more
Joy R 1-3 update, faith & more
Peggy Carter 1-4 does anyone else have gout from Lasix?
Shirley G 1-4 shortness of breath question
Jack's 1-5 reply to Peggy's 1-4 gout possibilities
Roz S' 1-5 reply to Joy R's 1-3 you are an inspiration
Leland Y 1-5 update, baptism, plans & to Doug Knuth
Bill M's 1-5 reply to Peggy's 1-4 gout, update, SSD question & more
Ginger 1-5 Joy R went into the hospital
Jackie S 1-5 is anyone in the TNF/enbrel trial?
Timmy D 1-5 update - great news!
Dick T's 1-5 reply to Peggy's 1-4 gout, testing & allopurinol
Robin Lynn 1-6 to Barbara & David & more
Doug K's 1-6 reply to Leland Y's 1-5 myasthenia, HMOs & wedding cakes
Margie F 1-6 heart transplant questions
Bill D's 1-6 reply to Timmy D's 1-5 be sure to get a second opinion
Harriet 1-6 niacin, Niaspan, chromium, this site & more
Brian 1-6 is CoQ10 worth it?
Renee M's 1-7 reply to Peggy Carter's 1-4 gout control & colchicine
Barbara F's 1-7 reply to Brian's 1-6 CoQ10 & angina
Donna's 1-7 reply to Brian's 1-6 CoQ10 & a dose question
Roz Sanderson's 1-7 reply to Peggy Carter's 1-4 gout
Lydia Moore 1-7 e-mail address change
Jim 1-7 intro, this site & prayer request
Jon 1-7 bios
John Len's 1-7 reply to Bill M's 1-5 gout, heart disease
Helen Otis 1-7 update, now have pleurisy also
Helen Otis' 1-7 reply to Peggy Carter's 1-4 gout & eating cherries
Jay Q 1-7 exercise wasn't mentioned
Jon's 1-7 reply to Jay Q's 1-7 it just wasn't called exercise
Samantha 1-8 hey, all you old-timers!
Robin Lynn's 1-8 reply to Timmy's 1-5 getting over DCM
Jon 1-8 new chat room in testing
Bill D's 1-9 reply to Samantha's 1-8 CHF longevity, Regina & more
Tom S' 1-9 reply to Samantha's 1-8 CHF longevity
Jon's 1-9 reply to Samantha's 1-8 CHF longevity
Pat Y 1-9 Coreg-diabetes-glucose level question
Joe S' 1-9 reply to Samantha's 1-8 CHF longevity
Karen K's 1-9 reply to Samantha's 1-8 CHF longevity
Pat L's 1-9 reply to Samantha's 1-8 CHF longevity
Phyllis A's 1-9 reply to Joy R's 1-3 coping, hope, faith & best wishes
Phyllis A 1-9 my CoQ10 experience has been good
Lori P 1-9 update, depressed & don't know why
Jon's 1-9 reply to Lori P's 1-9 you're always welcome here
Lee R's 1-9 reply to Jon's 1-1 faith & holiday wishes
Maggie S' 1-10 reply to Samantha's 1-8 CHF longevity
Jana B's 1-10 reply to Samantha's 1-8 CHF longevity, transplant issues
Jon's 1-10 reply to Jana B's 1-10 transplant issues
MaryLou L's 1-10 reply to Lori P's 1-9 hang in there
Cindy M 1-10 hunting photo files
Jon 1-10 chat
Don J 1-10 intro, walking, jokes & more
Jill S' 1-10 reply to Lori P's 1-9 meds & depression, Coreg, Jill M questions
Tom S' 1-11 reply to Jana B's 1-10 heart transplant
Phyllis A 1-11 how is HCM different from restrictive CM?
Lori P 1-11 this site & those coming here
Jon's 1-11 reply to Phyllis A's 1-11 HCM vs restrictive CM
Donna's 1-11 reply to Jana B's 1-10 heart transplant
John Jett Jr 1-11 seeking others in the same boat
Frank N 1-11 intro, blood clot & Coumadin questions
Bobbe T 1-11 have arrhythmia and an ICD - what now?
Milt M's 1-11 reply to Pat Y's 1-9 diabetes & CHF
Jon 1-11 squeezed for time for a few days
Jon 1-12 geocities pulls an even bigger booboo
Taavi K 1-12 a different look at heart transplant
Peggy Carter 1-12 update, gout & meds, & more
Jon's 1-12 reply to Taavi K's 1-12 heart transplant
Lydia Moore 1-12 Vo2max results & questions
Jon's 1-12 reply to Lydia Moore's 1-12 Vo2 max
Eris 1-12 CoQ10 & meds taking questions
Joy R 1-12 facing tough decisions - prayer request
Lydia Moore's 1-12 reply to Jon's 1-12 thanks, exercise
Tom S' 1-12 reply to Taavi K's 1-12 transplant & Jon's site
Jon's 1-12 reply to Tom S' 1-12 I hold the sacred object!
Brian 1-13 Coreg dose, CoQ10 & more
Brian's 1-13 reply to Eris' 1-12 CoQ10
Phyllis A 1-13 I had a TIA - prayer request
Doug K's 1-13 reply to Frank N's 1-12 Coumadin & blood clots
Charles Doss' 1-13 reply to Samantha's 1-8 CHF longevity
Gus R's 1-13 reply to Frank N's 1-11 Coumadin & blood clots
Leland Y's 1-14 reply to David's 12-8-99 about those aches and pains
Phyllis A 1-14 thank you all
Bill D's 1-14 reply to Gus R's 1-13 Coumadin & clots
Barbara F's 1-14 reply to Samantha's 1-8 CHF longevity
Bill M 1-14 SSD approval & advice
Donna 1-14 update, improvement
Pat 1-14 hope everything is ok & more
Jill S' 1-14 reply to John Jett's 1-12 inhalers, CHF, kidney problems
Phyllis A's 1-14 reply to Donna's 1-14 seek dietary advice
Jon, January 1, 2000 - Howdy-doo to one and all, and so much for the Y2K bug, I'd say. The new year starts with more people than ever being diagnosed with CHF, more treatments for it, and less and less reliability in the media's reporting on CHF research. That adds up to more confusion for those just trying to get the straight scoop. I pray God keeps me on track as this site's maintenance man, so at least part of that straight scoop can be found here. You are the best possible resource - a legion of real people dealing with the real problems CHF tosses into our lives.
I want to thank everyone for their participation. I know it can be hard exposing oneself to possible criticism or embarrassment by speaking in a public forum. I also want to thank all of you who have donated time, money and hardware to keep me and my poor old pooter pooting. Those who donate their time have saved me countless hours doing research by sending me articles from a variety of sources that allow me to stay on top of things in the CHF world. Those who have donated money, software and hardware kept this site from folding last year. A special thanks to the reader who just donated a new pooter for use maintaining this site. I hope I beat the odds and live long enough to make that donation worthwhile! I won't be able to use it until I buy some software but as I mentioned late last year, God always provides; always has, always will. Thanks to Gino and Marc Silver, as well as my own CHF doc, for patiently answering so many of my questions so quickly. And thank you to all who simply come and read - you make it all worthwhile.
My biggest thanks goes to Jesus the Christ. Jesus has given me the patience and resources to do all this and has kept my spirit from flagging on days both bad and good. A dozen times last year alone, I looked at my computer monitor and said, "I quit. I give up. I can't do it again today and tomorrow and the next day." Each time, Jesus coaxed me out of myself and into His Spirit of service. As I look into this year I know that He will sustain me as long as He has useful work for me to do. Without Jesus, I am lost.
Honestly, to all of you who are not saved, I have no idea how you make it through earthly trials like heart failure. I hope the information you gather here helps you cope with your illness, but if I could pass on only one single sentence, I would make it, "Believe on Jesus Christ as your Savior and your Lord." The gospel is so simple many stumble over its very simplicity. That short sentence is it; all of it. You don't have to change your life, you don't have to give up old habits, you don't have to join a church, you just have to sincerely come to Jesus and say, "I believe."
As I answer posts and ask questions of my own this year, I'll inject my belief in Jesus as Lord into my messages. Deal with it. He is my life and in fact, He is the only reason this site exists. I don't preach around these parts though, mainly because I'm a lousy preacher! Can't carry a tune either, but that's another story. <g>
Setting the tone for my year to come:
Happy new year. Jon.
Tom S' January 1, 2000 reply to David M's December 31, 1999 - Impotence! I think you have touched on a subject most men in this group want to maintain a hands off position on. All stupid puns aside, it is a delicate subject for a man to go into detail on a public forum, but I have suffered from a form of it since the onset of my CHF about 5 years ago. At one time I would have fit into one of those talk show topics about "sexual addiction" because of my overactive libido. In 2 marriages I have sired 15 children, nine of whom survived to full-term, and one who died in childhood, leaving a total of 8 surviving children. I must admit there are probably others that are not spoken about.
About 6 years ago at the tender age of 45, I noticed that my "desire" was waning and that I started getting to a point where it was not a terribly important aspect of my life; an almost take it or leave it proposition. I was concerned but never spoke to adoctor about it because I thought that was a normal progression of maturity. Within a year, certain physcial changes seemed to have taken place and now a very virile member of my anatomy - Mr. Happy - became very shy and was ultimately referred to as Mr. Turtle. I think you get the picture.
I've always felt that with the severity of my CHF, losing the desire and most of the ability at the same time, was a blessing in disguise. With a literal death sentence hanging over my head, it would be very foolish to chance the procreation of yet another child when we have serious problems dealing with the ones we already have, and the economic blow my CHF has dealt us. I haven't got a clue what your physical situation and level of CHF is, but perhaps your body is trying to tell you something and sex should be way down on the list of things to do in any one day. By the way, happy new year to all. email@example.com
Gerald F, January 1, 2000 - Hi, Am I the only one with a sternum that didn't heal after surgery? I had a bypass in '92 and wires were breaking within 2 months. I was rewired and hose clamps put on the bottom of my sternum and the top wires were breaking within 2 months. The top of my sternum scrapes when I turn over in bed or use my arms for lifting. They won't give me a brace or appliance. I hate to keep being cut on. firstname.lastname@example.org
Susie O's January 1, 2000 reply to Missy's December 31, 1999 - Hi Missy, I agree the wallet identification alert for medical reasons is very important. On the Website WebMD.com, you can enter your medical information & print out a wallet ID alert card. Also, more information is available to the hospital and doctors about you, with a Website they can go to and enter your personal access code. This seemed like a good idea to me when I saw they had this available; Just a thought for folks to consider. email@example.com
Ben B's January 2 reply to Tom S' January 1, 2000 - Hi Tom, Although in some cases it might be best just to accept this condition, we need to remember that although impotence may be acceptable to us, it may be quite unacceptable to some wives. I quote Dr. Marc Silver: "Poor blood flow to sexual organs and certain medications can result in impotence or a decrease in sexual pleasure. More often than not, though, the condition is psychological rather than physiological. It usually revolves around patients fears that sexual activity may lead to further damage to their heart, or do them some harm." He goes on to say that this should be discussed with one's doctor, and in may cases may be treatable. firstname.lastname@example.org
Ginger, January 2, 2000 - Happy New year all, I pray it is a good year for every one of us here. As for you interjecting Jesus into your messages Jon, I say all right. I wasn't always a great believer but that has changed in the last 6 months. The docs told us my sister would not be with us for Christmas and she is still here. I truly believe the only way she is here is due to Jesus, because certainly it is not due to doctors. Anyhow, I just wanted to wish everyone a good new year and thank you all for your continued support and prayers for Karen, my sister. Thanks. Cya's at chat when I get a chance! Hugs, Ginger. email@example.com
Tom S' January 3 reply to Ben B's January 2, 2000 - Hi Ben, Perhaps I have a wife who thinks beyond her physical needs and is happy I am still around for something other than bedroom gymnastics. I think any discussion about impotence includes the spouse, girlfriend or significant other. That goes without saying. I think I am therefore very fortunate indeed to be blessed with a wife (of over 20 years, I might add) who has found a deeper and more lasting meaning to our relationship other than the possibility of engaging in intercourse or sexual activity. There is also a question of energy and stamina when one talks about such activity. As we used to say in Latin class, "nihilo non donat nihilo non habat," or "one cannot give what one does not have." firstname.lastname@example.org
Jon's Note: Gee, I'm not impotent and my wife uses that saying on me! <g>
David's January 3 reply to Ben B's January 2, 2000 - Hi Ben, Thanks for the thought. I am concerned about my wife's satisfaction but I would like to be able to get it up occasionally, not necessarily every time. I have been through doctors, specialists and have tried injections. I couldn't hack those. My specialist agrees that since I never get an erection when dreaming or as I wake up, it is a physical problem.
I have no fear. I have learned to pace myself in all things and pretty well know what I can do and cannot do. I have never actually been in heart failure, but my DCM causes shortness of breath when I exercise, particularly in certain positions or uphill or carrying something. On the flat, I'm quite good. My EF is 25%. Has anyone actually found anything that helps? By the way, my wife is very understanding. exec55@AOL.com
Jon's January 3 reply to David's January 3, 2000 - Hi David, If you have no erection at night - ever - you have a purely physical problem. I assume you have had that verified by a sleep lab. Because of that, I think you should quit focusing so much on your desire for sex and pursue physical solutions to your impotence. I assume this is a process of trying treatments in succession looking for one that may work, which requires patience. I'm fairly certain that dwelling on it too much only makes it worse.
As for not being in heart failure, that "extra" breathlessness with exertion is the first sign. I remember many moons before my CHF diagnosis, working out began to get difficult for me. Looking back, I think the very first sign of my enlarged heart was an overpowering inability to catch my breath, that I had never before experienced, after doing my serious hak-squats at the gym. About 7 months later, CHF almost killed me. If only I knew then what I know now. <g> I think it's great that you got treatment before coming to a grinding halt, as happens to so many. Jon.
Judy, January 3, 2000 - Hi, I have never posted before and I have never participated in a chat room, but at least I am conquering the first fear now. Finding this Web site was the best thing that happened to me since I was diagnosed with dilated cardiomyopathy, congestive heart failure and v-tach. Jon, thanks for all the help and inspiration you have given me. Because of you and the other participants at this Web site, I now know that I am not alone and there is always someone out there I can turn to for inspiration and assistance. My family doesn't seem to want to recognize the seriousness of my illness and would much prefer to ignore it. They rarely call to even see how I am doing and I have felt so very alone. My prayers go out to all. Best wishes for a great new year filled with health, love and peace. email@example.com
Joy R, January 3, 2000 - Hi, I wanted to thank Jon for the wonderful New Year's Day message. One of the biggest things that keeps me going in life is knowing the best is yet to come. I am not afraid to die, and I think those of us who believe in Jesus feel the same. Right now the doctors are deciding whether to put me back in the hospital. I have not been doing as well as I was. I am trying to stay home but they are discussing what to do with me and who will be the admitting physician, the cardiologist or the GI doctor. It seems my body just wants to quit working. It is very hard for me to type this message but I wanted my friends to know where I may be. Since I have all my IVs at home, I'm hoping that is where I will stay. I hope everyone has a healthful and happy new year, and God bless all. Joy. firstname.lastname@example.org
Peggy Carter, January 4, 2000 - Hi, Happy new year to one and all. I hope you had a good Christmas. I have a new side effect you can get from being on Lasix. That is gout. If there is anything more painful, I do not know what it is. Anyway, my doctor said it was from the Lasix. Do any of you have this? God bless and keep you in the new year. email@example.com
Shirley G, January 4, 2000 - Happy new year to all, I have a question for all of you who are such a wonderful wealth of information. I'm 53, have DCM as a result of high-dose chemo treatment, and my EF is around 35-40. My doctor has been finding it difficult to find the right dosage of Coreg and Cozaar for me because my blood pressure falls too low. It's been as low as 66/48, which makes me feel pretty blah. My question is about shortness of breath. I have experienced the difficulty with breathing that comes with exercise, but recently have been experiencing a sensation of "not enough air in the room." I don't know any other way to describe the feeling. I get this even when not doing anything particularly exertional. Is that just another part of the "shortness of breath" aspect of DCM? Shirley G. firstname.lastname@example.org
Jack's January 5 reply to Peggy's January 4, 2000 - Hi Peggy, If he knows it's gout, then he should be able to prescribe you some colchicine to help you out with it. It changes the PH so crystals don't form in your joints. Jack. email@example.com
Roz S' January 5 reply to Joy R's January 3, 2000 - Dear Joy, I think I write for a great many who have been inspired by your posts on Jon's Place, and of whose gratitude you are unaware. Your note, which you must have written with difficulty, has again illustrated your indomitable courage and shared your cheerful spirit with us all. I hope by the time you are reading this, you are more comfortable, and most of all, at home. I have no idea if it helps or not, but please know that you are in my thoughts and my heart is saying "get well soon." Much love, Roz. RWarriston@aol.com
Leland Y, January 5, 2000 - Heathy new year to everyone, I continue to be amazed at my HMO (Kaiser). The CHF team called me up personally to ask about my progress. They reviewed my diet, meds, side effects, weight and sleep. They emphasized the emergency phone if I should ever need to call for help. They scheduled me for a cholesterol management class also. Good things are happening with our lives. A highlight of our life occurred on December 19, 1999 - Lily and I were baptized at the Cornerstone UMC. I can definitely say that CHF has not been a deterent in my life. Right now the "Big Guy in the sky" has shown us that we needed to renew our vows with Him, so on May 20, 2000, we are renewing our wedding vows at a church. All in all, I can definitely say that if and when the time comes, I shall be ready, with no complaints and no regrets. I really feel at peace with myself and CHF. To Doug Knuth - I hope your doctor has misdiagnosed your myasthenia gravis. We pray for you. Leland. LLYee@surfside.net
Bill M's January 5 reply to Peggy's January 4, 2000 - Hi Peggy, I've also had bouts with gout, even before my current medical conditions. I had an attack in both big toes at same time. I swear if there's an equivalent to child birth pain, gout is it! <lol> By the way, I got my first letter from Social Security. It said I was medically disabled. Then it said it must now determine if I meet the non-medical requirements? They included a second page with all the doctors and such from which they decided the disability part.
Part of me wants to go yaaa hooooooo, because this was my first application, but the other part of me is saying, "Just what are nonmedical requirments?!" Does anyone know? I called and they said they were checking to see if I had 10 years work experience. I hope that's all it means.
I can offer one piece of advice that I got from one of Jon's links - squeak, squeak, squeak until they are tired of hearing from you, and always talk to a supervisor. Well, here's hoping all are doing well and had a happy Christmas and new year. Bill M. firstname.lastname@example.org
Ginger, January 5, 2000 - Hi, For all who want to know, Joy R did go into the hospital. I am sure she can use our prayers. Thanks and hugs, Ginger. email@example.com
Jackie S, January 5, 2000 - Hi, I haven't written in ages. I recognize a few names though many are new. I don't often get on the computer as I am still working outside the house and have 2 kids. Somehow that seems to absorb most of my available energy. My doctor has asked me to participate in the TNF/enbrel research study. I am wondering if any of you are participating in the study and would be willing to share your experience to date. I must confess the idea of 3 shots a week and the possiblity of getting a placebo are not thrilling, but there seems to be a lot of excitement about the drug's possiblities. I can't thank Jon enough for providing this place, it is wonderful. Wishing all of you a blessed and peaceful new year. Jackie. Oakleaf999@aol.com
Timmy D, January 5, 2000 - Hi, I have been reading these posts since July, 1998, when I was diagnosed with DCM, EF of 20% and arrhythmia. I am a 41 year old man and I want to let Jon know how much this site has helped me. January 3, I went to my cardiologist. He looked over my recent echo and pulmonary test results. To my amazement, he told me my heart is now normal and I don't need to be on any medication. Thanks for everything! Tim. TIMNAN0726@aol.com
Dick T's January 5 reply to Peggy's January 4, 2000 - Hi, There is a simple blood test for uric acid that can confirm if you have the gout. I take Lasix also and have an elevated uric acid level that can lead to gout if left untreated. I've never had the gout and take allopurinol as a precaution. Dick T. firstname.lastname@example.org
Robin Lynn, January 6, 2000 - Hello everyone, First of all, happy new year! Barbara, I went on a very low dose of CoQ10 and noticed that I was having problems with my heart palpitations, PVCs and chest pain. It took about 5 days to figure out that I was doing something different and stopped the new supplement. Everything went back to normal when I stopped. I also started a multivitamin called Theragran Heart Smart and was in real trouble, with my heart rate dropping into the 40s. I don't know what it is, but I just cannot tolorate some things.
I would like to say that it is refreshing to see men opening up on this site. There may be wives out there who just don't know what it is like for men in this situation. I want to give a woman's point of view, if I am allowed. To David and all the others in his situation, I would like to tell you all that the most important things in a realationship go far beyond sex. Your wives and girlfriends need attention from you aside from sex. There's not a thing wrong with my husband but without the proper affection and loving attention, it means nothing. My final word to all you men is to be the leader of your family's faith and love of the Lord, and your whole family will follow. As I heard a preacher once say, "I have never seen a family that when the husband/father loves the Lord that the family didn't follow, but have seen many woman love the Lord without their husbands."
God bless you all in 2000. Thanx Jon, for being a "rock" for so many, and I look forward to seeing more messages on your site. In Christ, Robin Lynn, DCM, CHF, EF 46%, coronary spasms. Heartful99@hotmail.com
Doug K's January 6 reply to Leland Y's January 5, 2000 - Hi Leland, Thank you for your thoughts and prayers, Leland. I should get the test results from the doctor on the 19th pertaining to the possibility of having myasthenia. Your HMO is doing what all these doctor's offices should be doing. They know they will save money in the long run if they can keep people educated, and out of the hospital! While HMOs have been accused (and I think rightfully so) of putting profit above people's treatments, the idea of preventive health care is still a good idea. Good luck, and send me a piece of virtual wedding cake, eh? ;-). email@example.com
Margie F, January 6, 2000 - Hi, I've been feeling a little better the last few weeks. I have a few questions about heart transplantation. Would someone who has been been through it, mind answering? How sick were you and how long did you have to wait since being put on the list? How did the anti-rejection medicine affect you, such as stomach problems or bloating from the predizone? Any information someone could pass along would be greatly appreciated - please answer by e-mail. I wish you all at Jon's a very happy new year. Margie F. MFisher firstname.lastname@example.org
Bill D's January 6 reply to Timmy D's January 5, 2000 - Hi Timmy, We're amazed too! I think you should get a second opinion and double check whose tests your doctor was looking at. I wouldn't stop your meds 'til you do. I've never heard of anybody who "got over" CHF after they had it for 18 months. I hate to rain on your parade but I'd be careful if I was you! Bill D. email@example.com
Harriet, January 6, 2000 - Hi all, Happy new year! About 3 months ago my cardiologist put me on Niaspan for cholesterol control. I had my blood test recently and the results are very disappointing to me. My levels were up from total 139 to 212. Good cholesterol was down 2 points and my lipids went from 397 to 598. Also, the flushing from the Niaspan is horrible. I don't know what we are going to do from here, but I wanted to let you know in case your doc is thinking about this therapy.
Also, I asked my primary care doctor if I could take chromium to see if it would help my diabetes. I believe it is, although all the personal, emotional problems for the past 5 months have kept me spiking, with the neuropathy following suit. Even so, my showing was 6.2 and that is controlled!
Jon, I know you just get all red when we all thank you for the site and all that other stuff concerning our souls and Jesus Christ, but at the risk of sounding redundant, I am addicted to all of you. You all give me the hugs I need on a daily basis, the understanding that I desperately crave when things are almost unbearable, the unconditional love that I have seldom felt in this life. The warm, cuddly feeling stays with me until I get back here and read and feel and love. Thank all of you! firstname.lastname@example.org
Jon's Note: Aw shucks!
Renee M's January 7 reply to Peggy Carter's January 4, 2000 - Hi Peggy, My dad, who has severe heart failure, has had many problems over the years with gout. He had it before the CHF and after. He took allopurinol for years to control it. When his Lasix dose was increased, he continued to get gout regularly. Any medication he took shut down his kidneys. His doctor finally gave him 0.6mg colchicine twice a day and now the gout stays under control. He has recently been hospitalized, had to take a lot of diuretics, and had a gout flare-up. The doctor just increased the colchicine to clear it up and then he went back on his regular dose. This has worked the best of anything without affecting his kidneys. When he has a flare-up, he can just increase the colchicine without having to go to the doctor each time. I hope this helps. Renee M. AUNTONAY@prodigy.net
Barbara F's January 7 reply to Brian's January 6, 2000 - Hi Brian, I started CoQ10 about a month ago and after reading the posts on Jon's site one day, it suddenly occurred to me that I was having more angina than in the past and that just maybe it was the CoQ10. That was the only thing I was doing differently, so I am stopping it today and shall see what the results are. I know there are many people at this site who swear by it, but it is possible that some people just may not be able to take it. I am hoping that is what has happened to me. EF 20%. bFletch@ivic.net
Donna's January 7 reply to Brian's January 6, 2000 - Hi Brian, I am taking 150mg of CoQ10 once a day. It seems to help me not feel so tired from the Coreg. I felt like a truck had run me over from the 50mg Coreg I take every day. Now I can't say for sure if my body just got used to Coreg or if it was the CoQ10, but I'm not feeling as tired as I was. Can anyone tell me what is the usual dose for their CoQ10? I also split up my Coreg; I take 12.5mg in the AM and 12.5mg at lunch, then 25mg at dinner. I will say that after dinner I still get very tired from that dose. email@example.com
Roz Sanderson's January 7 reply to Peggy Carter's January 4, 2000 - Dear Peggy, Gout? Ouch! Tests continue to show that I have "the gout of acute arthritis." That's what they called it, honestly. I have found enormous relief physically from injections of cortisone into the joint and sleeping always with my feet cooly outside the covers. I mention physical relief since psychologically I now see myself as a Victorian cartoon, one of those rich over-alcoholed, over-fed gentlemen with his foot on a stool. Actually, I am still a very lady-like CHFer who prefers bare feet! Best wishes, Roz. RWArriston@aol.com
Lydia Moore, January 7, 2000 - Hi Jon, I hope all is well with you and your family, and I hope 2000 has many miracles in store for us all. I have a new server and therefore a new e-mail address. I hope you get it as I have really benefited from all the update mail you have sent me on heart-related problems and research. It has been very appreciated. My new address is Flanders66288@cs.com
Jim, January 7, 2000 - Hi everyone, I just wanted to say, Jon, this has been a very helpful site with excellent information and support. I'm a newly diagnosed CHFer with 20% EF. I was class 4 when I was put in the hospital 9/99 with kidney and liver failure. My mother bought me CoQ10 and I started taking it while I was in the hospital. Please keep my family - wife and 3 little ones: 11 months, 7 year old girl, and a 4 year old boy - in your prayers. My EF is up to 25%. My doc said he is suprised at how well I'm tolerating the meds. Keep up the hope, and ask your doc before taking anything. Mine said the only thing I would hurt taking CoQ10 is my pocketbook (its not cheap), but the other doc in his office group said definitely to take it!
It's nice to hear all the positive talk and encouraging words. Jim. "I can do all things through Christ which strengtheth me" Philippians 4:13 firstname.lastname@example.org
Jon, January 7, 2000 - Hi everyone, If you have sent me a bio and it isn't up yet, please be patient. I got accustomed to letting them stack up on me in threes, and then doing them 3 or so at a time to save me effort. They are few and far between these days, so when I only have one in line to be done, it often gets forgotten for a while. If you want your bio on Who's Who, just e-mail me what you want put up with any picture files you'd like included. It's a very popular stop for visitors to Jon's Place! Jon.
John Len's January 7 reply to Bill M's January 5, 2000 - Hi Bill, I agree with you on gout. I had it so bad in an ankle one time I had to get a prescription for pain medication before I could bear the trip to the doctor's office. It was after that, that I was diagnosed with diabetes and heart disease; A connection? John. email@example.com
Helen Otis, January 7, 2000 - Hi all, I hope everyone survived the lunancy of the new year, brought on by people, not the Y2K bug. For me it was very quiet. The reason for this is my boyfried and I went to his parents', who live in the middle of the desert. We had a campfire and let my boyfriend's niece and nephew light sparklers. Not to worry; my boyfriend's dad has been in the Boy Scouts for a long time, and he is now on the board and gets to make decisions.
However, Christmas was not so good, even though my boyfriend and I went to his brother's home. The reason is that on 12/22 I was taken to the ER, spent the whole day there, and was told I had pleurisy. I have never had so much pain in my life. The pain was centered directly under my sternum and spread outward. They gave me painkillers and told me to go home, take the pills and sleep. I have decided that nothing hurts worse than this did. Helen, age 25, EF 25-30%. firstname.lastname@example.org
Helen Otis' January 7 reply to Peggy Carter's January 4, 2000 - Hi Peggy, My boyfriend developed gout last year. For him, when he has a flare-up, he eats some cherries. They can be fresh or jarred, but not canned. Let me know if this helps. Helen, age 25, EF 25-30%. email@example.com
Jay Q, January 7, 2000 - Hi Jon, Yesterday's mailing list article on heart failure therapy was informative but I wonder why regular exercise was not mentioned as a basic. Cheers, Jay Q. firstname.lastname@example.org
Jon's January 7 reply to Jay Q's January 7, 2000 - Hi Jay, It was mentioned, just not in those exact words. <g> He referrred to it as "rehab," meaning cardiac rehab, or a structured, regular exercise regimen. We all know doctors are poor communicators, as proven in another article at Heartbytes. Here's a quote from the mailing list article:
5) Basic number five is changing life style. Patients will stop smoking and limit salt, water, and eating excesses with supportive counseling and education. Convincing data now support the idea that patients who go through rehab improve significantly. Although no convincing data exist to show that rehab prolongs life, there is no question that quality of life improves.
Brian, January 6, 2000 - Hi, Do many of you take CoQ10? Is it worth it? BPGruber@yahoo.com
Samantha, January 8, 2000 - Hi, I am just curious who has lived with CHF the longest. I know there are probably some great success stories out there! I was diagnosed in 9/96, and I know there are many people that have lived years and years with CHF. We need to celebrate their success. email@example.com
Robin Lynn's January 8 reply toTimmy's January 5, 2000 - Hi Timmy, Congrats on the great news about your condition! The down part of it is that you still do have a condition. From all the research that I and many others on this site have done, DCM doesn't "go away" although it is something that can and sometimes does improve with meds. I have read too many stories of people improving and being taken off their meds only to end up right where they started. Please talk to your doc about it or get a second opinion. Some meds are important to maintain your wellness. Good luck and God bless you. Robin Lynn. firstname.lastname@example.org
Jon, January 8, 2000 - Hi everyone, I have placed a new chat room applet on the chat page. I will try to attend the upcoming chat times listed on that page for awhile to see how this applet works. Anyone using Webtv, please let me know how it works for you. Thanks, Jon.
Bill D's January 9 reply to Samantha's January 8, 2000 - Hi Samantha, I haven't had CHF the longest but I was Jon's first "customer." I have had CHF lo these 7 years. I made a grave mistake in telling a neighbor that I really didn't care what he did because I was dying. Now he looks at me with what seems impatience! <g> He sort of makes me feel guilty because it's taking so long! Do any of you remember Regina? She used to post here. We found she often visits my little town in Forida. Yesterday she e-mailed me and today we went out for lunch! She was delightful, about 20 years younger than me. She showed me her ICD scar. (No Jon, it wasn't all that far down. Bill D. email@example.com
Jon's Note: You'd think a man with an e-mail address of billdog would be kept on a very short leash by his wife! She lets you go out? <lol>
Tom S' January 9 reply to Samantha's January 8, 2000 - Hi Samantha, I was hospitalized January 8, 1995 with an EF of 15, recommended for heart transplant, following a heart cath; refused same, thus far surviving on medical treatment only and have not returned to a hospital since 1995. Onset of CHF first noted 3 years before actual diagnosis. firstname.lastname@example.org
Jon's January 9 reply to Samantha's January 8, 2000 - Howdy-doo Samantha, There are people here who have lived with CHF 4-5 times longer than I have, but I have been blessed with this illness for just over 5 years. <g> My doc kept misdiagnosing me and finally decided I needed my gallbladder removed. The surgery just about did me in and I landed right back in the hospital with an EF of 13, with a very strong recommendation to have transplant. Like Tom, I said no and here I am, still tooling along. Jon.
Pat Y, January 9, 2000 - Hi, I have been reading posts for several months but have not participated. I have a question that I don't remember being addressed. I know that insulin has to be monitored closely if you are diabetic when you go on Coreg. After being on Coreg for 2 months, my blood tests indicate glucose high enough to have a glucose tolerance test. Has anyone else had normal glucose that became elevated shortly after going on Coreg? Can there be a correlation? Pat Y, DCM, CHF since 12/25/94. PTYoumans@aol.com
Joe S' January 9 reply to Samantha's January 8, 2000 - Hi Samantha, I don't know if I qualify for the longest with CHF, but I have had serious heart problems now for 56 years. They didn't call it CHF but I sure led a restricted life style, which I definitely think was wrong. By the way, every time I went to a doctor, and it was a lot back then, they told me I had gout and swelling of the ankles. I never had any pain though, and no one did anything about the swelling or even connected it to my heart. Joe S. email@example.com
Karen K's January 9 reply to Samantha's January 8, 2000 - Hi Samantha, My CHF was diagnosed just about 9 years ago, when I was hospitalized with an EF of 19%. At the time I was told within one year I would start going downhill and within 5 years require a heart transplant. By October of 1991, my EF has increased to 38% and this past year it was measured at 34%. At that time, a doctor told me not to gauge everything based on the EF measurement.
I started taking Coreg very soon after it was approved for CHF treatment by the FDA. I also now take 150mg of CoQ10 daily. I also use a face cream with CoQ10 as an ingredient - does this count too? <G>
I no longer take 2 of the heart meds I was orginally prescribed: Propanalol and Lasix. I stopped the Lasix over a year ago and have no problem with fluid retention but I watch my salt intake religiously, although I must say I do occasionally eat pizza and some of the foods that are quite high in salt. I had my first bratwurst in close to 9 years this past summer and noticed no swelling. Perhaps I am just lucky, as my weight stays around 122-125lbs all the time. I exercise regularly and have recently gone back to work part-time but it is a very low-stress job and quite flexible. I'm working as our church's secretary. Karen K. firstname.lastname@example.org
Pat L's January 9 reply to Samantha's January 8, 2000 - Hi Samantha, When I was diagnosed with CHF in March of 1995, my EF was considerably "below 20" per the doctor. I anticipated from what I read at the time that I would be lucky (or maybe unlucky) to live 18 months. I was evaluated for a heart transplant in February of 1997, because my Vo2max was 5.9 and I decided, no thanks. Soon after that, I went into the Coreg drug trial. My EF eventually went up to 53 and my heart reduced to normal size, then my EF went back down to 25 and my heart enlarged again. The point is that in March it will be 5 years, my heart is still working and while I have had to make many changes, like give up my job, I'm still here. Pat. email@example.com
Phyllis A's January 9 reply to Joy R's January 3, 2000 - Dear Joy, I mean this from the bottom of my heart: Your attitude about your health is amazing and I look to you and Jon, and I only hope I am as strong as you two. Please keep your faith and most of all hope. I believe you already have them both. May Jesus continue to envelop you with His love. firstname.lastname@example.org
Phyllis A, January 9, 2000 - Hi all, I have been diagnosed with HCM and CHF since 1997, after treatment for breast cancer with chemo and radiation. When I started coming to this site, I knew nothing about CoQ but I know that before I was told about it I could hardly get out of bed, let alone walk or do minor chores. I thought I would spend my time till good Lord called me home in bed. It has worked fantastically for me and I take 30mg 3 times a day. Once when I ran out for a week or so, I could definitely tell the difference so I try not to be without it anymore. Different doses for different people! I started out low and have remained there. I hope this helps. email@example.com
Lori P, January 9, 2000 - Hi everyone, I haven't written in awhile but just wanted to touch base. It's been 9 months since my heart surgery and lately I've been feeling extremely down. I can't imagine it being post-surgery depression still, can it? Nothing in particular is bothering me, I just feel blah and depressed. Enough with that; sorry to carry on. I hope you all are doing well and keeping well. Take care of yourselves. firstname.lastname@example.org
Jon's January 9 reply to Lori P's January 9, 2000 - Hiya Lori, It's good to hear from you! You can carry on around here all you want. I have no idea if you are suffering from post-surgery depression or not, but I do know that you can be pulled up and we'll try to do the pulling, right everyone? ;-) Jon.
Lee R's January 9 reply to Jon's January 1, 2000 - Dear Jon, Your millennium message was wonderful to read. I don't think it would be desirable or possible to not incorporate your belief and acceptance of Jesus into your site. It has helped so many of us. Happy new year to all here at The Beat Goes On. Love, Lee. (PS. My ICD is behaving itself!) LeeRoush@aol.com
Maggie S' January 10 reply to Samantha's January 8, 2000 - Hi Samantha, I was diagnosed 7 years ago in l992, with DCMand CHF. I have been on Coreg since last March, reaching the full dose 5 months ago. My last echo hasn't shown any improvement with an EF of 20-25. I'm still hoping that eventually it will go up. We just invested in a treadmill, so I plan on doing better with exercise. I had an ICD implanted this past September. Fortunately, it hasn't gone off yet and I seem to be doing ok. Happy new year to everyone. Maggie S. email@example.com
Jana B's January 10 reply to Samantha's January 8, 2000 - Hi, I was surprised and pleased to see how many of us said no to a transplant. I haven't said no yet, but I just don't feel that bad yet. My family and doctors are really coming down on me for considering no for an answer. They act as though I am killing myself and maybe I am, but I am not ready for a transplant. The doctors act as if there is no alternative. As a matter of fact, they have said that! My family has called "family meetings" trying to convince me that I am being selfish. I am tired of them hounding me. It is my life!
I would have the transplant in a heart beat (<lol> no pun intended) if I felt I needed it. I am asymptomatic now and have been for a few months. I don't know what my EF is now but it improved from 21% to 30% in the last year. I am doing well and until something changes, I don't want a transplant. Jana. JByers4u@aol.com
Jon's January 10 reply to Jana B's January 10, 2000 - Howdy-doo Jana, Some doctors - my own included - are more enthusiastic about giving CHFers new hearts than they should be. Transplant has a huge impact on real, live people and it can be for the better or for the worse. It will be for the better if: A CHFers' current heart health problems and the resulting poor quality of life must be currently worse than the problems a heart transplant will cause. Second, a transplanted organ must be a good match.
Transplant is a life-saver. That's a fact. Also a fact is that many post-transplant problems come with that donor heart, like it or not. These problems will be with you the rest of your life. Most transplant doctors will tell you the very same thing. If they don't, they are looking at the process through rose-tinted glasses, if you get my drift. After all, they don't have to live with a donor heart - you do. That's why it is your decision. Jana, maybe if you collect info on the potential problems and present it to them in detail (in person), they will begin to realize that you put a lot of thought into this decision that will affect you every minute of the rest of your life.
For information about those potential problems and about ways they are being beaten or reduced, you can see Transplant Update as well as my heart transplant page. E-mail me if you need more info. I hope to have a new heart transplant section up soon, with personal experiences and contact info to real -life recipients. I decide whether to add sections to the site on reader response, and the "ask the doctor to explain this" section idea was a flop. I only got a grand total of 5 questions to ask the 2 doctors who volunteered. <g> If you have had a heart transplant and would like to participate in the new section, please let me know. Jon.
MaryLou L's January 10 reply to Lori P's January 9, 2000 - Hi Lori, I just want to let you know that I am pulling for you. My God is changeless in His love for me and He will come and help you too. Mary Lou. Keep on smilin' MLBinks@aol.com
Cindy M, January 10, 2000 - Hi Everyone, Several months ago, I wrote in asking if there was anyone who could scan my family photographs and send them along to Jon for inclusion with my updated bio, since I don't have access to a scanner. Jon's done a wonderful job of updating my bio, but thus far has not received the scanned photos. Here's my dilemma. There were so many of you out there generous enough to offer to help me out, that I can't remember to whom I sent my photos. Complicating things was the destruction of my hard drive just after I corresponded with everyone, so I lost the e-mail addresses. So, would whomever has my photos, please go ahead and scan them to Jon, or if you are no longer able to do so, please return them to me. Thank you very much! Cindy M. firstname.lastname@example.org
Jon's Note: Someone may have sent them to me and I lost them. I didn't get that misterbooboo name for nothing!
Jon, January 10, 2000 - Hi everyone, We had a nice chat session today. I hope to have the font size bigger next time, which will be 6 PM Thursday evening, Central Standard Time. I hope to see you there! Jon.
Don J, January 10, 2000 - Hi, I have just been officially diagnosed with CHF since Thanksgiving so I have by no means leveled off. I have lost better than 20lbs of fluid and this is helping very much. I find that I can now sleep better. At least I can now sleep in a bed (sometimes). The big thing is that this has helped my walking like mad. My legs at least, feel 100% better and I can walk a lot further without stopping. I certainly will say that there are good days and bad days. I have the feeling that a lot of the bad days are caused by medicine, but I don't know. We are changing my medicines around during the day to see the results. I try to get out walking most every day because I have believed in walking for years as a way to go. Incidentally Jon, in your story about the dead dog and the cat scan you can add the vet examining the Labrador Retreiver and then charging the man for a Lab test! email@example.com
Jill S' January 10 reply to Lori P's January 9, 2000 - Hi Lori, Check the side effects of any medications you are taking; beta-blockers are notorious for causing depression! I am having a spell of the "tired of being tired" blues, I know you all know what I mean. Due to a couple of spells where I felt like I was going to end up on the floor, my cardiologist has decreased my Coreg down to 3.25mg a day, from 6.5mg. I must say I do feel a lot better, tons better. We will probably try to go back on it again or maybe try another beta-blocker, I'm not sure. I haven't had any of these spells since I stopped, so I am not sure what avenue we will take. It is odd but my normally very low BP was actually higher on higher Coreg doses; for me, that's 6.5mg vs 3.25mg. Go figure.
Has anyone heard from the other Jill - Jil M from South Africa? I thought she was coming to the States for an extended stay. If you're out there Jill, let me know! firstname.lastname@example.org
Tom S' January 11 reply to Jana B's January 10, 2000 - Hi, I have to echo Jon's sentiments concerning transplantation and add that I was told right up front it was a "treatment" not a cure. Keep that in mind. email@example.com
Phyllis A, January 11, 2000 - Hi, I came across an article about restrictive cardiomyopathy. It is disease of the heart muscle, which gets stiffer and it said it is caused by radiation to the chest during cancer treatment, which I had. I was diagnosed with HCM. What is difference between the two? firstname.lastname@example.org
Lori P, January 11, 2000 - Hi everyone, I have received so many beautiful, encouraging, uplifting messages in the past couple of days from folks here at the heart forum. I think I've replied to everyone (I hope!). As I said in all my replies, last night my 16 year old niece fell and bumped her head on the bathtub, and was unconscious for over 30 minutes. After spending most of the night at the hospital with her, I came home way too wound up to sleep so I got online and found so many encouraging e-mails and posts! You are all so wonderful and very, very special. I loved all the words of prayer and support. I know that I will get through this.
I also loved the advice and ideas from everyone. One nice lady said the most incredible thing: "I thank God that we are created in such a way that we can love and care about someone we've never met." I never thought of that until now. The people here really depend on the support of one another. This forum is almost addicting; it's a safe haven for us to come and vent, cry, complain, share our pains and happiness, etc. That's such a nice feeling. I think I speak for everyone here when I say Jon, thank you for creating this site. It's wonderful and the people who contribute are wonderful. People with their own problems (personal, health, etc) take the time to sit and write to someone else whom they've never met, and you know what? It makes all the difference in the world. email@example.com
Jon's Note: On behalf of the guy responsible, I thank you for the kind words
Jon's January 11 reply to Phyllis A's January 11, 2000 - Hi Phyllis, Here we go! <G>
HCM is usually primary (idiopathic), which means that no one really knows what causes it. Since it is often inherited, being highly prone to it is probably genetic. HCM patients have a better chance of stabilizing and not progressing to end-stage disease nearly so fast as those with restrictive cardiomyopathy. Dilated and restrictive cardiomyopathy may be caused by any of the above. That's why having a CHF specialist is so important - it is a very individual disease, requiring knowledge of all possible causes and treatments to manage effectively.
Well, I have probably muddied the water thoroughly by now, but maybe somewhere in there, I managed to answer your questions. Radiation may have caused your heart disease. Be sure to discuss this with your doctor in case it has a bearing on your treatment, although I don't think it does. Then again, there ain't no med school diploma hangin' on my wall. <g> Jon.
Donna's January 11 reply to Jana B's January 10, 2000 - Hi Jana, I totally agree with you. I currently see a transplant specialist and her feeling is that as long as the meds are working, why do a transplant? The statistics are not very different: 75% of people live 5 years or more on meds vs 70% living 5 years or more with a transplant, so why do the transplant unless meds quit working? Like you, if push came to shove, I'd also get a transplant in a second if I needed it. I guess I'm lucky. My doctor is very conservative in her thinking, and only does transplants if necessary. firstname.lastname@example.org
John Jett Jr, January 11, 2000 - Hi, I was diagnosed a diabetic in 1975 and went on insulin at that time. In 1980 I was diagnosed as having peripheral neuropathy, from which I have suffered until 3 years ago when I was prescribed Ultram and Neurontin in combination. This gave me the first relief (almost no pain) since it all started. I used codeine for 13 years without significant relief. Last year, I was in the emergency room 3 times with severe breathing problems. The diagnosis was onset of emphasema or asthma, but neither developed. On 12/13/99 I had a heart attack caused by CHF. I had an angiogram which confirmed it and prior damage from a silent MI. I suspect the emergency room visits were actually undiagnosed heart attacks, since I am one of the 20% of diabetics who experience no chest pain and I found that in the absence of that pain, they don't think that you are having a heart attack.
I suspect the CHF has its cause from chronic edema which involves diabetes and or kidney function. My last kidney test was 41. I am currently on 2 diuretics and from what I've read I am developing gout, a blood pressure pill, and vascular dilators including nitroglycerin. I understand digitalis might be of help. If anyone is in the same fix I am (I'm 66 and have been in relatively decent health until now), would you let me know what you are taking for what, and how it has or has not helped you?
I am currently having breathing difficulties during the middle of the night or upon awaking. I use an inhaler to eliminate some of the fluid in my lungs, but it does not get it all. I take 100mg of Lasix twice a day plus potassium. I look forward to hearing from anyone similarly afflicted. John Jett, Chula Vista, California. email@example.com
Jon's Note: John, what kind of kidney function test came up 41?
Frank N, January 11, 2000 - Hi, I am a 45 year young male new to this site, but who's been reading everybody's posts almost daily since being diagnosed with CHF and viral DCM last Father's Day (1999), a very healthy young man otherwise! For the last 6 months I have been almost without CHF symptoms as well having no reactions as to the medications: 50mg Coreg, 25mg Captopril, 40mg furosemde, 75mg Dipyridanole, 0.25mg Lanoxin, 8mEq Klor-Con, and 325mg Ecotrin. Aside from having very bad mood swings and running out of energy without doing much, I have been ok. I have been able to walk daily from 1-1½ hours but still have not been able to lose much weight. I am 6'5" and 300 pounds.
Like most of you, I was told I would not live to be 50 years old but changed from that cardiologist to a CHF specialist who has been very optimistic ever since my very first visit. In a way, that is exactly what bothered me. Yesterday he read the results from my 6 month echocardiogram and my EF went from 15 to 35, which is good. My heart has shrunk quite a bit but still is enlarged, and it is pumping a lot better than it did 6 months ago, which is also good, but it revealed left ventricular thrombosis; a blood cloth inside the left heart chamber, which is not good as far as I could tell from the doctor's facial expression. He mentioned he was not exactly sure if it was really a blood clot because sometimes an echo might show something resembling a blood clot, when in reality there is no blood clot there.
To be in the safe side, he told me to stop taking Ecotrin and prescribed Coumadin instead at a minimal dose. I have read The Manual, most of the related sites, and this is where I have been able to educate myself about my condition. I would like to express my most sincere gratitude to Jon. I know I am a potential candidate for a stroke if this little tiny particle decides to loosen up and travel around my body. My question for you is, would Coumadin act to disintegrate or dissolve the blood clot or is its purpose just to act as a blood thinner to avoid the blood clot from disengaging? Should I run and go out of control because there's nothing I can do? I have been in God's hands ever since the beginning and I have faith and trust in Him no matter what. Your response will be greatly appreciated. Fmni92@aol.com
Bobbe T, January 11, 2000 - Hi, I'm not sure this is where I belong. I've been diagnosed with ventricular fibrillation and already have a device implanted. However, I am on no medications such as Coreg at this time. My doctor isn't sure I can handle them. What do I do now? Barmtim@aol.com
Milt M's January 11 reply to Pat Y's January 9, 2000 - Hi Pat, I have been on Coreg at 25mg twice a day for a year now. Three months ago, I was diagnosed as a diabetic. I believe that many symptoms of the diabetes were defined as CHF, adjusting to my meds, etc... Everything was blamed on my existing illness. I am now on 2 meds for diabetes; One is glucatrol and the other is the dreaded Rezulin. Peace and love to all. Milt. Spaz_1@msn.com
Jon, January 11, 2000 - Hi everyone, Due to my daughter having finals this week at school, I am short on computer time. I have enough time to put up all the posts you send, but I may not have time to answer them for a few days. I'll try to back track first chance I get and catch up, though. Jon.
Jon, January 12, 2000 - Hi everyone, Geocities has my account and my site hopelessly screwed up. I am locked out of my own pages for now. I am continuing to update posts as if I could upload them to avoid a bigger backlog than necessary. I'll upload first chance I get. Jon.
Taavi K, January 12, 2000 - Hi, With all the posts about turning down transplants, I'd like to slip in a few positive words. For those who need them, they are the difference between life and death. No, people that don't need them should not get them. The difficulty is in making that differentiation. You may feel fine now with all the great meds, but what will the future bring?
While going through transplant evaluation, I sat down and did an evaluation based on my medical history and everything I'd managed to read on cardiomyopathy, and concluded that I'd be dead within 2 years. This made the descision fairly easy! As it happened, they managed to keep me around for the almost 3½ years it took. Had I not meet with several transplant recipients and seen how well they looked and were doing, it would have been more difficult. Yes, there are adjustments you have to make, you are more prone to various ailments, but I have not regretted the transplant once.
To quote Dr. Spencer Kubo, the cardiologist who saved my life, "Transplant is not a walk in the park. It is more like a walk in Central Park. With caution and planning, it can be sucessfully done." For an interesting first person (biblical) account by one of my fellow transplant recipients from the University of Minnesota, see http://Doug.BassGuitar.com/hrtstry.htm. firstname.lastname@example.org
Peggy Carter, January 12, 2000 - Hi Jon, Thanks again for your site and thanks to everyone who responded to my question about gout, and for all the e-mail. You are all great! My doctor put me on 50mg Indomethacin 3 times a day for the swelling and pain, and on 300mg allopurinol once a day for the uric acid crystal build-up. It almost goes away, then it comes back. Oh well, just one more thing to put up with. Helen and Tom, I am trying the cherry juice. Right now I will try anything. Thanks again to you all. God bless, Peggy C. email@example.com
Jon's January 12 reply to Taavi K's January 12, 2000 - Hiya Taavi, Looking back, the heart transplant thread could seem negative to a reader! I don't think any of us meant it that way though, so I'd better be more specific, just in case. I doubt that many - if any - of us have any objection to transplant at all. We do object to the way that doctors seem to push it at us before they even try managing us on medical therapy or with devices first. This pushing is most apparent right after we are first diagnosed, which is the worst possible time for a doctor to do so. We are uninformed about our illness itself, rarely brought up to speed on all of our other options, and we are in the hospital surrounded by worried family members. Then doctors, start saying "Transplant!" like it is the only way to keep us alive another second. This knee-jerk reaction by doctors is ignorant at best and unethical at worst.
On the other hand, CHF specialists are in a bind about when to suggest heart transplant for those of us who have lived with our illness awhile. We have educated ourselves and have a handle on our other options. Still, the doc doesn't want to wait too long because it could kill us. We can deteriorate fast and he knows that the wait time for a heart is highly variable, but can be quite long, well over a year for many patients.
This leaves us largely uncertain about what our own decision should be. One of the cons in making a transplant decision is rarely mentioned: that we never get to talk to transplant recipients who got a "bad match" or who were unhappy with their transplants. Why not? Because almost all of them are dead and the rest are too sick to be making Web pages, answering mail, or going to support group meetings! So we only get the good side of the story, so to speak. I base this on talks I have had with very responsible and skilled cardiac care nurses, whom I have known very well (in person - not online) over a period of years.They deal with such patients every day and verify that few people - in the media or elsewhere - ever hear these stories.
I am not putting down the people who are happy with their transplants and want to share the good news. They should! In fact, I am (if I survive the current crisis with geocities) looking forward to the new transplant section on which I am working. I just think that we all get a lot of one-sided information. That's very frustrating for those who face the transplant decision and it's probably why we sound negative.
That's why I don't look at the numbers about how long I might live without a heart transplant, Taavi. They don't tell the whole story by a long way. The numbers are out of date and don't reflect current advances in medical therapy, much less device therapy. Those of us who stay on top of things, and on top of our doctors <g> also get better treatment than the majority of people in those "numbers" so we are likely to have better quality of life longer. That gives us a different perspective than the newly diagnosed, or those who are told that "the numbers" are accurate.
My point is simply that like you Taavi, I thnk heart transplant is good idea - when it's time. We certainly agree on that. I would put off saying that it is time, longer than you, that's all. I want to point out to everyone reading that Taavi is helping me with that new transplant section, so he is one of those people helping everyone get a fuller understanding of what transplant is really like. If any of you out there have had a heart transplant and want to help me with this new section, please e-mail me at firstname.lastname@example.org. Jon.
Lydia Moore, January 12, 2000 - Hi everyone, I just had a Vo2 test and the results were not anything to brag about. My number was 13. I am not sure about what this test concludes, but my doctor said that if I was telling him I felt really bad, he would consider a heart transplant. I have had CHF since May of 1999 and my EF is 21. Jon, could you please shed some light on this for me? Am I in big trouble or should I keep trucking? I am on Coreg, which he is increasing, and I hear that this drug takes awhile to show improvement. I would appreciate the input as I appreciate all you do for everyone. Thanks and a great big Jesus hug to all of you, Lydia Moore. Flanders66288@cs.com
Jon's January 12 reply to Lydia Moore's January 12, 2000 - Hi Lydia, I had a Vo2max result of 13.5% last March, and here I am, so you can draw your own conclusions <g>. The reason your doc mentioned transplant to you is the same reason mine mentioned it to me - 14% is usually the cut-off. That means if your Vo2max is over 14%, they do not want to place you on the transplant waiting list. Honestly, if you are able to exercise - no matter how mildly - you can pull that score up some just be exercising regularly. That increases your muscle tone and helps your body make better use of whatever oxygen it gets. I'd say that unless you have increasing symptoms like SOB, fatigue or swelling, keep on trucking, but try to do a smart, regular exercise program! Jon.
Eris, January 12, 2000 - Hi, I was diagnosed with CHF in December, 1996. I have done relatively well after treatment. I would say I am usually somewhere between class 2 and class 3. Recently though, my energy has been at a low ebb, although I have not had any med changes for 2 months or so. I gather from some of the posts that the time of day you take medicine may affect how much energy one has, and would like to know about others' experience in this regard. I take:
I also take a precribed sleeping aid and a low dose of Setralene for depression. I have been taking this amount of Coreg for over 6 months. Also, I have read many posts about increased energy in those who take Co-enzyme Q10, but other entries from people who feel they have been harmed by it. I have been afraid to add one more thing (that my doctors know little about), but would like some feedback from others about this as well. Thanks for your valuable site. email@example.com
Joy R, January 12, 2000 - Hi, I really feel that I should post after my last message, which said I was going into the hospital again on Jan 4. I got out of the hospital yesterday after a very difficult time and I am not able to sit up long. I have to make a decision whether to have surgery or keep going as I am, which isn't good either. The problem is that the surgery may not work and then I'll be worse off than I am now. Then again, it may work and I'll get better. I may have to go to Gainsville, Florida to get more opinions before I decide but anything is better than what I have been through.
It seems my GI tract has competely shut down and I couldn't take my heart meds and then my heart started protesting. The surgery will be an illeostomy and also a stomach tube to drain, since my stomach won't contract, and I have no peristalsis. My colon has also quit. So if I agree, it will mean all those tubes out of my body. I thought a Hickman (catheter) was bad enough, but after a week of NG tubes and being suctioned out, I think anything would be better. It's just that the surgery may make things worse. Fortunately I am being hydrated by home IVs and am still on dobutamine. At this time I am able to take my heart meds with a sip of water but that is all I can handle.
Please pray that I make the right decision. It is hard enough to live with a bad heart but this is almost more than I can handle. So I am living hour by hour with a very distended abdomen and a bad heart. I will have to have a Swanz (Swan-Ganz catheter - in lower neck) if I have surgery which is a catheter inserted in the neck to measure heart pressures and the doctor said it may be risky but it seems you have to have a GI tract as well as a heart. Joy. firstname.lastname@example.org
Lydia Moore's January 12 reply to Joy R's January 12, 2000 - Hi again Jon, Thank you for your quick response. I felt better and less afraid after hearing from you. They did mention exercise for the first time, so I will start a regular routine. Since I have no bike for now, the pavement will have to do. Besides, I can take in all of God's beauty. Please tell your wife how much your time means to us and that we appreciate her patience with us all. It must take away from your time with her and the family. May God bless your family, Lydia. Flanders6628@cs.com
Jon's Note: I'll pass that on to Linda and Linz. Linda is the jewel in my crown!
Tom S' January 12 reply to Taavi K's January 12, 2000 - Hi, That was quite a disappearing act you pulled, Jon. It's unusual to see the magician pulled out of the hat, but I guess that is what happened with you and geocities.Again I have to echo your sentiments to Taavi about heart (or any organ for that matter) transplantation and agree with you that I felt bullied by the lead doctor of the transplant team. I basically told the doctor that ultimately I - not him or any group of people - decides whether I get a transplant or not. Of course when they discovered I did not have adequate insurance, guess who suddenly didn't need a transplant so bad? Ironically, the very day my full Medicare coverage was to kick in, I was asked by my doc if I wanted a transplant. Go figure. I do want to add congratulations to you, Taavi, for being one out of the few each year who benefit from transplant and I do wish you continued success with it. email@example.com
Jon's January 12 reply to Tom S' January 12, 2000 - Hi Tom, Believe it or not, I have become the holder of the most treasured item on geocities, which so few even know exist - their tech support phone number! <lol> I didn't think they had phone tech support! I can't tell you how I got it or they'll send someone to kill me <g> They were nice, but puzzled because my whole site kept disappearing before their very eyes and then reappearing. At least, it seems ok now. Jon.
Brian, January 13, 2000 - Hi, Thank you for your sharing your experience. I just got my Coreg upped to 6.25mg twice a day, starting Monday might. My cardiologist says the goal is 25mg per day. Fifty sure sounds high to me. I don't feel really bad, mostly tired in the early morning and at night. When I was on the ACE inhibitor, I really felt bad but the ARB wasn't. By the way, mycardiologist thought Coenzyme Q10 was a waste of money since what he considers the most comprehensive clincial trail did not show any improvement. Jon, your site is a true blessing, and the info most helpful. I got the Success With Heart Failure book and find it very interesting. Thank you! Brian. BPGruber@yahoo.com
Brian's January 13 reply to Eris' January 12, 2000 - Hi, Regarding the CoenzymeQ10; I asked my cardiologist and he said some studies show no harm from it or benefit, from studies he trusts, but if I didn't mind wasting the money, it was ok with him. I started taking it last Tuesday. Decide and good luck. Everyone is a little different! BPGruber@yahoo.com
Phyllis A, January 13, 2000 - Hi Jon and everyone, The pressure of my dad being sick for 3 months, and running to the hospital and taking care of him and my mom has taken its toll. Monday night I awoke to chest discomfort and no feeling in my right arm. I thought I had slept on it. That was about 3-4 AM. Around 6 AM I was awakened again with complete numbness in my arm and more chest discomfort with a little blurred vision. I thought something was in my eye earlier that night and had hubby rinse it for me. I took an aspirin and called doc. I had a TIA (mini-stroke). I'm ok. I had a CAT scan of my brain done. The doc said the aspirin saved me from having a more serious stroke but I have to have more tests done. My EKG also changed, showing my heart a little worse. I will be getting an echo and carotid test done. I know I should have taken it easy but my parents did so much for us coming up, giving us a good home and private school education. I know the good Lord kept me here to take care of them now, and the Lord will see me through. firstname.lastname@example.org
Doug K's January 13 reply to Frank N's January 12, 2000 - Hello Frank, From my reading on Coumadin (I take it to), it prevents clots from forming but doesn't dissolve clots that have already been created. Good luck. email@example.com
Charles Doss' January 13 reply to Samantha's January 8, 2000 - Hi, After lurking here for a couple of years, I thought I should let people know that the old (5 years) number is definitely out of date. I was diagnosed with CHF 10 years ago, in January, 1990. Interestingly, at least to me, I did not receive Lanoxin until January of 1996. I was a subject in the DIG study from 1990-1995 and continued to work full-time. In January of 1996, I had a "crash" and the seal on the study was broken; I had been on a placebo for the entire 5 years. My CHF is still stable. It is COPD which has sidelined me. Best wishes to all. firstname.lastname@example.org
Gus R's January 13 reply to Frank N's January 11, 2000 - Hi Frank, Your question about how Coumadin works was very educational for me. I thought Coumadin slowly dissolved existing clots but apparently I was wrong again. :-) I went to DuPont's Web site before writing what I thought, and found this:"Anticoagulants have no direct effect on an established thrombus, nor do they reverse ischemic tissue damage. However, once a thrombus has occurred, the goal of anticoagulant treatment is to prevent further extension of the formed clot and prevent secondary thromboembolic complications which may result in serious and possibly fatal sequelae." I had to look up "thrombus" which means, "An aggregation of blood factors, primarily platelets and fibrin with entrapment of cellular elements, frequently causing vascular obstruction at the point of its formation" and "Ischemic" which means, "A low oxygen state usually due to obstruction of the arterial blood supply or inadequate blood flow leading to hypoxia in the tissue." The definitions I quoted are from the "The On-line Medical Dictionary" which I found here. For what it's worth to you, I have been taking Coumadin for over 7 years with no serious side effects. Best wishes, Gus R. email@example.com
Jon's Note: Hey Gus, you'll find the definitions bit easier to take at Medspeak ;-)
Leland Y's January 14, 2000 reply to David's December 8, 1999 - Hi David, This is in reply to your December 8, 1999 post at The Beat Goes On. I'm sorry to be so late. I am really behind on my readings. I save everything and then read at the first chance. Like you, I came down with CHF March 10, 1999. Similarly, I was emotionally and psychologically shocked. We all are and it's a life-long recovery process, which each and every person handles differently.
However, recovery takes a little longer when there are other circumstances, such as your body aches with no diagnoses yet from any doc. Right? I do not know about the oxygen deprivation but do separate it from CHF. Your body aches are real not from CHF. There are a couple of terms you may or may not have heard: Fibromyalgia (FBM) and Polymyalgia (PMR). You can read a lot about FBM on the Internet just by searching for that word. PMR is also on the Internet, but is not as common. Both medical conditions give body aches big time, tiredness, depression, pain in the muscles (not joints), sleeplessness, loss of appetite and headaches.
The difference is that prednisone (cortisone) relieves PMR, but does not relieve FBM. The medical profession is very reluctant to name PMR, and it is diagnosed very easily with symptoms and a blood test called sedimentation rate (ESR). However, even if the ESR is not real high, your body language indicates PMR, in my opinion. Once you realize that someone believes in you, the condition remedies slightly (probably emotional). Other methods are warm packs or heating pad at night under your most painful areas. Practice isometric exercises. They really relieve painful muscle aches. Try to get in more exercises such as more walking. In the summer you will find that ice packs are very accommodating. When aches and pains are unbearable, usually Tylenol with codeine or Vicodin (both are narcotics) are very, very helpful. As a last resort, the docs might consider a low dose of prednisone for you. My wife Lily, and I pray for your continuing improvement in health, physically and emotionally. Please let us know how you make out with your next visit at the doctors'. Leland. LLYee@surfside.net
Phyllis A, January 14, 2000 - Hi, Thanks to Jon and friends, I am taking it easy and getting plenty of rest. Thanks for all your e-mails and messages of love. Jon, thank your dear wife Linda for taking the time to e-mail me with best wishes. May the Lord bless us all. firstname.lastname@example.org
Bill D's January14 reply to Gus R's January 13, 2000 - Hi Gus, Here I wrote Frank N that, "The Coumadin is probably dissolving the clot as we speak!" Talk about being a dumbbell! What dissolves clots anyway? Signed Dumbo. email@example.com
Barbara F's January14 reply to Samantha's January 8, 2000 - Hi Samantha, I was told in June of 1993 that I was in CHF and probably only had 5 years. My doctors sent me to Loma Linda Heart Clinic where I was started on Coreg and it took some time, like over a year, to get to 65mg daily, but it has been a blessing for me. I walk daily at least a mile and hope to up that to at least 35 minutes a day soon. Medicine has really improved for CHFers. BFletch@ivic.net
Bill M, January 14, 2000 - Hi, Well today I received my award letter. I received a letter last week saying I was medically disabled, but had to wait for non-medical disability determination. It was the best letter in a long while I had received. Of course, they say I will have a review in December 2000, a year from now. It says they think I'll get better by then. <lol> I'll tell my cardiologist he's on a time limit with the CHF, since they figure he should have me cured in a year.
Of course they don't pay the first 5 months. That's called your waiting period. I figured they were waiting for me to keel over - fooled them! Because my birthday is on the 29th and the check you get is for the past month, my check for January will be mailed on the fourth Wednesday of February. I also qualified for SSI for all the waiting period months, whoooo-hooooo, so I will receive a check for payment from 8-1-99 through 2-1-2000 for $4109. Of course, the SSI also ends in February, as my SSD starts to finally pay me in late February or early March for January.
Wow, got it done on the first application with no lawyer and enough stress to take 4 more years off my life, squeaking like an ungreased bearing staying on top of them. One bit of advice: apply for every SS program they have - SSI, SSD, SS, survivor benefits, railroad retirements - if they have an application for it, fill it out and apply because they won't tell you. Read every one of Jon's links to SSA - all of them. For one thing it passes time, and another, it will empower you to converse from an educated point of view. Thanks Jon, I credit your page on SS, this forum for strength, and the good Lord for guiding the hand of those who make SSD decisions. He certainly was thinking about me. Bill M. firstname.lastname@example.org
Donna, January 14, 2000 - Hi, I just had a check-up with my cardiologist transplant doctor. She could not believe how much better I'm doing; No more third heartbeat, no more murmur and 50lbs lighter. I can stop Lasix and K-Dur, but weigh myself every day and if I should gain weight, I'll go back on them. Also, she has decided to do a stress test and new echo to see where I stand. When I was first diagnosed, my EF was 20%. I asked how much exercise she wanted me to do and she said walking a mile a day would be good. Well I'm walking 3 miles a day at a clip with no problem. There is hope out there for all of us. She still considers me a class 2. Jon, I have to say my dogs have helped me improve. When I don't feel like walking, they still make sure I do it. My boy Ben will not take no for a answer. Wishing you all good health. email@example.com
Pat, January 14, 2000 - Dear Jon, I am just checking in. I show your last update was on 1/11/2000. I hope everything is fine. I don't post very often but read every day. It's funny, but when you read the posts every day, the people become a part of your life. You have my deepest respect as do others on this forum who continue to amaze me as they learn how to "bloom where they're planted." You have all been a great help to me. As the Bible says, "I can do everything through Christ who gives me strength." firstname.lastname@example.org
Jill S' January 14 reply to John Jett's January 12, 2000 - Hi John, Most inhalers are for asthma, not CHF. They won't remove fluids. Is it your sodium count that is 41? With all the kidney problems, have you seen a nephrologist? email@example.com
Phyllis A's January 14 reply to Donna's January 14, 2000 - Hi Donna, What did you do to lose 50lbs? I'm on 160mg of Lasix in the morning and 80mg in the evening, and I still retain fluid in my legs and belly. I haven't shaken salt on my food since being diagnosed and I use herbs for seasoning. What did you do? Thanks. firstname.lastname@example.org
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.