Mina 3-16 thanks
Jim M 3-16 those handicapped spot looks hurt
Bonnie's 3-16 reply to Joy R's 3-15 those handicapped spots & more
Gus R's 3-16 reply to Mary Ann Miller's 3-15 loved the upbeat message & more
Joy R's 3-16 reply to Freddy's 3-15 seek e-mail address, good quote & more
Rick M 3-16 handicapped spot stares
Steve S' 3-16 reply to Milo's 3-12 EF, cough question, feeling better & more
Tom S 3-16 EF & more
Ben B 3-16 functional class question & more
Jon 3-16 functional class, stares, cough & more
Milo 3-16 diets, exercise & more
Milo 3-16 depression, exercise, worries & more
Jon's 3-16 reply to Milo's 3-16 depression, exercise & more
Steve's 3-16 reply to Mary Ann Miller's 3-15 phlebytis, smoking, ACE, thanks & more
Tom S 3-16 Jon & Milo, depression & anxiety
Roger H 3-16 handicapped spot stares
Joyce 3-17 questions about idiopathic cardiomyopathy
Virginia R 3-17 handicapped spot dilemma
Kim S 3-17 handicapped spot blues
Jon's 3-17 reply to Kim S' 3-17 handicapped spot looks
Kim S' 3-17 reply to Milo's 3-16 depression, anxiety, denial & CHF
Della's 3-17 reply to Milo's 3-16 & cough coming from meds?
Milo 3-17 end of life care
Jon's 3-17 reply to Milo's 3-17 end of life care
Candy's 3-17 reply to Kim S' 3-17 depression, stages of illness & more
Jon's 3-17 reply to Candy's 3-17 thanks, stages of illness & more
Ginger 3-17 EF values and what they mean
Jamie S' 3-17 reply to Kim S' 3-17 depression, illness, death, faith & more
Jon's 3-17 reply to Jamie's 3-17 often just keeping the purpose on track
Christine D 3-17 Linda O, Bill D, gene therapy questions & more
Robert Farish's 3-17 reply to Kathleen's 3-14 intro, docs, treatments, faith & more
Gatha E 3-17 questions about pnuemonia & more
Jay Q's 3-17 reply to Milo's 3-16 attitudes, guilt, coping & more
Tandy K's 3-17 reply to Milo's 3-17 putting them down
Bill D's 3-17 reply to Kim S' 3-17 handicapped spot stares
Bill D's 3-17 reply to Joyce's 3-17 welcome, info & more
Margie 3-17 anyone else have chemo-induced CHF?
Judy 3-17 intro, upcoming cath & more
Kim S' 3-17 reply to Jon's 3-17 faith, denial, illness & more
Ben B 3-17 death, depression, denial & more
Cindy 3-17 death, depression, faith & more
Candy's 3-18 reply to Cindy M's 3-17 hypocrisy & faith
Christine 3-18 illness, anxiety, depression, faith & more
Ruthie A 3-18 faith & inspiration, update, new clinic & more
Heather S 3-18 preparing children questions
Jon's 3-18 reply to Heather S' 3-18 preparing children & a question
Jon's 3-18 reply to Cindy M's 3-17 I am a little confused, can you help?
Tom S' 3-18 reply to Joyce's 3-17 idiopathic cardiomyopathy
Tom S' 3-18 reply to Cindy M's 3-17 life goes on & more
Joyce's 3-18 reply to Bill D's 3-17 thanks, suddenly ill is difficult & more
El R 3-18 intro, biopsy, doctors, location & more
Jon's 3-18 reply to El R's 3-18 welcome, treatment changes, biopsy
Joy S 3-18 intro, stress, meds & more
Jim H 3-18 why don't I feel sick? & more
Jim H 3-18 cough & meds
Jon 3-18 try to catch up tomorrow
Jamie S' 3-18 reply to Kim S' 3-17 attitude, religion, death & more
Jamie S' 3-18 reply to Jon's 3-17 faith vs religion, death & more
Jon's 3-18 reply to Jamie S' 3-18 why get upset?
Mike W 3-18 the long road of life & more
Pat L 3-18 depression, coping & more
Al M's 3-18 reply to Milo's 3-17 giving up, giving in & more
Jennifer B 3-18 death & dying, joy & life, & more
Jamie S' 3-19 reply Cindy's 3-17 death & dying
Milo 3-19 weight lifting & exercise
Claire F 3-19 handicapped parking problems
El R's 3-19 reply to Jon's 3-18 bad biopsy experience
Jon's 3-19 reply to El R's 3-19 not even typical, find out what happened
Jan P 3-19 depression & anxiety
Robin W's 3-19 reply to Margie's 3-17 chemo & CHF
Bill D's 3-19 reply to Cindy's 3-17 this forum & more
Jon 3-19 this forum & question for Bill D
Robin W 3-19 update, faith, depression & more
Bill D's 3-19 reply to Margie's 3-17 chemo & CHF, info & more
Tony P 3-19 Vo2max numbers question
Jon's 3-19 reply to Tony P's 3-19 Vo2max numbers
Kim S' 3-19 reply to Jamie S' 3-19 beliefs, coping & more
Mark S 3-19 living or dying
Jamie S' 3-19 reply to Jon's 3-19 trying to clarify
Jon's 3-19 reply to Jamie S' 3-19 I honestly don't understand
Brenda H 3-19 catching up, depression & PPCM question
Jay Q's 3-19 reply to Jim H's 3-18 asymptomatic CHF & more
Lynn D 3-19 when to call the doc?
Brenda H 3-19 stopping Coumadin for dentist & more
Doug K's 3-19 reply to Heather S' 3-18 Luc D
Ben B 3-19 experience with adversity
El R's 3-19 reply to Jon's 3-19 tests & doctors
Bev's 3-19 reply to Robert Farish's 3-17 drug trials
Jon 3-19 religious subjects going to e-mail for awhile
Jon 3-20 Gino may be at chat tonight (Saturday)
Harry Weem's 3-20 reply to Tom S' 3-19 like your post
Virginia P's 3-20 reply to Robin W's 3-19 questions about EF & transplant
Donna M's 3-20 reply to Bill D's 3-19 like this site, intro, meds, faith & more
Bill D's 3-20 reply to Joyce's 3-18 life style changes, info & more
Bill D's 3-20 reply to Joy S' 3-18 welcome, finding CHF info & more
Bill D's 3-20 reply to Jim H's 3-18 welcome & more
Margie F 3-20 shoulder injury, exercise & more
Jon's 3-20 reply to Margie F's 3-20 exercise & fatigue
Lori Wilson 3-20 seek mitral valve surgery experiences
Jon 3-20 Forms down again
Jon 3-22 forms back up, taking a break
Madelyn J 3-22 6 month recovery & PPCM
Jon's 3-22 reply to Madelyn J's 3-22 6 month recovery is for IDCM
Pete E's 3-22 reply to Lynn D's 3-19 see a doctor ASAP
Pete E's 3-22 reply to Tony P's 3-19 Vo2max & more
Pete E's 3-22 reply to Jim H's 3-18 statistics & more
Ginger 3-22 olive leaf herb question
Jamie S' 3-22 reply to Jon's 3-19 depression, adjustments, e-mails & more
Jon's 3-22 reply to Jamie S' 3-22 adjustments, e-mails, posts & more
Luc D 3-22 update, hello, to Heather & more
Janet 3-22 to Heather, chemo-induced cardiomyopathy
Cindy M's 3-22 reply to Tom S' 3-18 e-mail address, update, loved story
Robin W's 3-22 reply to Ben B's 3-19 thanks, playing the cards in your hand
Gwendolyn White 3-31 having digestive problems
Steve S 3-31 had cardioversion, no more cough & more
Brenda H 3-31 started Coreg, have PVCs & more
Andrew G 3-31 thank you
Sara ? 3-31 CHF mortality
Linda M 3-31 update, six month window
Lynn D's 3-31 reply to John Constant's 3-22 thanks, exertion & more
Audrey 3-31 intro, interested in correspondence
Kim ? 3-31 intro, trouble sleeping, need to talk
Sara S 3-31 anyone heard from Lorie? seek doc suggestions
Robert Farish 3-31 update, Robin W & more
Jon's 3-31 reply to Tony P's 3-19 Vo2max of healthy males
Milo 3-31 diabetes, humor
Milo 3-31 diabetes and CAD (coronary artery disease)
Jeremy Pearson 3-31 about Lori's surgery
Joy R's 3-31 reply to Gwendolyn's 3-31 upset stomach possibilities
Candy's 3-31 reply to Gwendolyn's 3-31 check meds, personality types & more
Ginger's 3-31 reply to Gwendolyn's 3-31 also to Audrey & Brenda
Pat L's 3-31 reply to Tony P's 3-19 Vo2max numbers
Roger H's 3-31 reply to Brenda H's 3-31 Coreg doses
Mina, March 16, 1999 - Hi, I just want to thank Jon and Ben B for their 3/13 responses to my 3/13 posting. Also, thanks to Chase for the e-mail. It feels real good to know there are CHFers out there with knowledge and who care. Thanks again. Mina. MinaKay@aol.com
Jim M, March 16, 1999 - Hi, I am 43 and with the exception of being overweight, I look like a very healthy person. My health goes up and down with the weather in NJ (hot and cold ). Some days I just don't feel right and hurt and get easily fatigued. When I use a handicapped spot, I feel guilty because of my appearance, then I turn my anger to myself and get depressed. Mental is sometimes worse than the physical for me. I see a therapist but the help I need, I think, is with those who can identify and talk with in the chat rooms. See you there. Jim.
Bonnie's March 16 reply to Joy R's March 15, 1999 - Hi, We've been facing the parking lot "demons" for several years now. I even had a police officer check our handicapped sticker to make sure we had one. Walmart is our favorite place to be lurked at. When you have a bad heart at 8 o'clock, some well meaning folks think you're just trying to get a good parking space. Try to shop for any length of time, especially now since she is too big for a stroller. I even had a woman in the line to greet Santa last year ask, "Isn't she just a little big for a stroller?" My reply, "Is Santa a little big for his sled?" Bonnie. firstname.lastname@example.org
Gus R's March 16 reply to Mary Ann Miller's March 15, 1999 - Hi Mary Ann, Congratulations on your great improvement. It is so nice to hear that sometimes a CHFer can win one! It sounds like you selected some good dox, had a little apprehension about their suggested treatment, but had the courage to follow through, and it all worked out very well. I am so happy for you, and want to thank you for sharing your success with us. I also enjoyed your statement that your new "EKG looked so smooth, it was just real pretty." I had never thought of a normal EKG as pretty before. I always thought they looked boring, but I think maybe you are right. :~) Gus R. email@example.com
Joy R's March 16 reply to Freddy's March 15, 1999 - Hi Freddy, I tried to e-mail you some information on IV heart drugs. You are the only person I heard from who may have to go on these drugs. Anyway, I must of written your address down wrong since it came right back. I have lots of input if you're interested. I have a good quote, "Lose everything but your faith in Jesus and you'll lose nothing. Lose your faith in Jesus and you'll lose everything!" Joy. Wapalaremi@aol.com
Rick M, March 16, 1999 - Hi, I was only 73 years old when I got my "Disabled Parking Permit" so I feel qualified to advise all the CHFers who suffer the slings and arrows of disapproving onlookers who don't feel that you are qualified to be using your permit because you "look so heathy." There are many ways to handle this, including:
Perhaps you have a solution to add to this list? firstname.lastname@example.org
Steve S' March 16 reply to Milo's March 12, 1999 - Hi Milo, I'm sure the doc said 5%. He said if my heart was a 6 cylinder engine, I'm running on only one. That was a month ago. I feel pretty good now and feel guilty about not doing anything. I started taking CoQ10 last week. I don't know if it's too early to feel any different yet or is it the meds, or just me hoping I'm getting better? I also started taking a mineral and a vitamin supplement. I now have a dry hacking cough that feels like a tickle in the back of my throat. From what I read this can be caused my the meds? I'm taking Captopril, Warfarin, Lanoxin, metoprolol, Potassium and furosemide. Can I substitute one for another kind or is this something I have to live with? I'm scheduled to have my heart zapped on March 25th to try to get it into a better beat. What does this involve and what is the success rate? The doc said it might work for a couple of minutes or a few years. Well, spring time is right around the corner and I hope getting outside will do me some good. God bless everyone and take care. Stdimhcs@aol.com
Tom S, March 16, 1999 - Hi, The EF discussion peaked my interest since I recently went through an echocardiogram to determine my general state of heart health, and when all was said and done, I got about three words of wondrous encouragement: "You're doing fine" for the $1,000 plus, it cost. I had to pop the EF question. The equally terse reply was "40" and I was relieved to know those 4 words and numerals only cost me a paltry $250 each. A few days later, feeling as though I were in a somnambulant haze, I reflected on the EF rating system and came to the conclusion, that like everything else human, it is a variable rather than a constant. Just as blood pressure can be raised or lowered by activity, emotion or chemicals, so also does the EF vary. I'm sure there is some brilliant cardiologist out there who would disagree. On those days when I'm flat on my back with barely the strength to lift my head, I am often comforted to know that for $250 a word, and numerals, I have an EF of 40.
Ben B, March 16, 1999 - Hi, I am curious if anybody has actually seen their functional classification (how they feel) improve over time or if everyone has gone downhill in this respect. I know people have EF improvements but what about quality of life? I'm not expecting anything, and would be happy to stay alive as I am but I was just curious. I know I improved in all aspects with my Zestril, but other than that, I have been about the same, which I know is a blessing in itself. Any comments? Plus, how's this for a fun time? I read in the paper now, that after changing PCPs 4 times, my physician's group - Medpartners of California, has gone belly up and is in Chapter 11. Wonderful. Even having insurance doesn't guarantee these knuckleheads will pay.
Jon, March 16, 1999 - Hi everyone, Actually, I leave my Rotties at home. <g> I like Romans 12:20, "Therefore if thine enemy hunger, feed him; if he thirst, give him drink: for in so doing thou shalt heap coals of fire on his head. Be not overcome of evil, but overcome evil with good." Thinking of it in these exact words helps me keep my temper in check. I know I'm right to use a handicapped spot. It's not until I truly accept that I am correct in doing so that I can deal with how others perceive me. Once I accept that appearance is unimportant, and that Jesus and I both know my behavior is proper, then and only then does it stop bothering me that others think differently. I have accepted this, and now, remembering this verse really helps. I am not what others think of me - I am what I am. My behavior is not what others perceive it to be - it is what it is - in this case, proper. I will heap coals of fire on their head by being way too nice to them. <g>
Ben, my functional class has varied a lot through my CHF. I have been as low as a Class 4 and am now a Class 2, ocassionally dipping into Class 3, so my quality of life is better than it has been in the past. I have to say that exercise on a regular basis is the single most important factor in my own post-CHF quality of life. When I am being a good lad and treadmilling 3-4 days a week, my ability to do everyday things is far better. Everyone should try it (make sure your doc okays it first), and don't give up because it's hard the first 3 weeks. Think about how hard it was to raise those kids - this is a piece of cake, huh?! Exercise will pay off.
Steve, to deal with the cough, ask your doc about moving from captopril (Capoten) to an ARB like losartan, irbesartan or candesartan. They are listed at the ACE Inhibitor page. If this does not help, you may be suffering from the dreaded CHF cough, for which there is no known cure. Most people, though, find this drug switch helpful. And of course, if you smoke, stop now. That stopped my cough. Jon.
Milo, March 16, 1999 - Hi all, Diets do not work. For example, let's take a popular diet. For breakfast drink a shake, for lunch drink a shake, and for supper eat a well-balanced meal. You set your goal, let's say lose 20lbs. After a while you lose the 20lbs and your goal is accomplished. How do you stay there and not gain it back? Simple - stay on your diet for the rest of your life, but now it is not a diet. It is a life style. I would guess after about 2 years of that shake and you would puke at the sight of the can. Now consider this: tell your doctor you are too fat and want to see a dietitian. She finds out your weight, age, build (small or large boned), and sex. She looks at a chart to find out what you should weigh, knowing the pertinent facts and decides on the calorie amount - 2000, 3000, 4000, etc. This is a well-balanced meal every meal but you must have the self-discipline and courage not to cheat. After a time, the intake of food levels off, and you stop losing weight and calories may be increased or decreased. Whatever the case might be, this is the only right way to handle weight. Please do not forget exercise. I walk 2 miles a day. If you do not walk or exercise, the calories will have to be decreased. Eat less. via email@example.com
Milo, March 16, 1999 - Hi, I have read in many of the posts about depression and anxiety. Those of us who do not have depression or anxiety have a much more serious problem. It's called denial. We who are faced with death should have depression and anxiety. There are plenty of good meds out there for both ailments. Exercise is also important in dealing with depression and anxiety. Both are forms of energy and can be released by exercise. If you have them when you awake, so what? You are faced with another day of misery. If you have them at night, it is probably because you have too much time to think about things. This is where positive thinking can do wonders, and do not forget your faith. These are the times to really use it. Live one day at a time. Take it all at once, and you will go nuts. Milo. via firstname.lastname@example.org
Jon's March 16 reply to Milo's March 16, 1999 - Hi Milo, I wholeheartedly disagree. There is no reason why a CHFer "should" have either depression or anxiety. To lack these problems in no way means a person is in denial. Am I in denial? I don't suffer from depression and I am not anxious. I only have one of the clinical signs of depression (difficulty getting to sleep) and this is insufficient clinical evidence to persuade any doctor that I am depressed. Besides, I enjoy life! Why not? My daughter last week described me as "jolly." I just hope that wasn't a jab at my weight - she says not. <g> I do agree to a point about living one day at a time. This doesn't exclude planning for the future but means to let go of tomorrow's worries. After all, their cause hasn't happened yet, so why jump the gun worrying about them?! I definitely agree about exercise being important. Still, we have a parting of the ways on this "we should be depressed" deal. By the way, welcome back. :-) Jon.
Steve's March 16 reply to Mary Ann Miller's March 15, 1999 - Hi Mary Ann, You mentioned that you had phlebytis in your right hand. While in the hospital, the vein that took the first IV got sore. It was hard (still is a little) and my bicep was red and tender to the touch. Would this be the same thing? I can't find any info on what you had. Jon, I quit smoking cold turkey (on my birthday) 10 years ago. I switched to tootsie pops and stopped them after a couple of months - best birthday present I ever gave myself. Anyway, thanks for the info on Ace inhibitors. I'm gonna call the doc tomorrow. While I'm at it, thanks to all involved with this site. It is wonderful to communicate with others with CHF. I'm now reading the Archives for more posts. God bless. Stdimhcs@aol.com
Tom S, March 16, 1999 - Hi, This is no way a stirring the pot message, but I am like Jon and feel neither anxiety nor depression. My teen years were full of depression and anxiety, which I learned to cope with after I discovered it was incurred primarily by others. I have spent the bulk of my adult life going with the flow, and up until I was delivered a nasty CHF blow, life was very sweet indeed. Now I have learned to relax more and still go with the flow, although the flow has somewhat slowed and changed direction. Milo, your constant harping on the anger, depression and anxiety we are all supposed to be feeling reminds me of the guy who keeps hitting himself on the head with a hammer because it feels so good when he stops. Stop passing around hammers and get a helmet instead. :-)
Roger H, March 16, 1999 - Hi all, If you get those people staring at you for using a handicapped spot, then tell them you are paying with your life for that spot. That should quiet them down a bit. <g> email@example.com
Joyce, March 17, 1999 - Hi, I just found this site and thought maybe someone here could explain to me more about idiopathic cardiomopathy. I am a 36 year old female. I was to have a hysterectomy last month, and during the regular pre-testing, they found that I had a problem with my heart. Before I knew what was happening, they did a stress test, echocardiogram and then a heart catheterization. I was told not to worry but that my EF is 35. I don't even know what questions to ask the doctor. He has me on 10mg of Vasotec. Is this something to be very concerned with or are there people with this that doesn't really interfere with their everyday lives. Thanks for any info. EFGuard@aol.com
Virginia R, March 17, 1999 - Well, after Jon's very correct response to the parking space dilemma, I feel rather guilty about submitting this post. On the other hand, I do like a good laugh once in a while. An article in a magazine stated that a young woman with a disabling health condition parked in a handicapped spot as she was entitled to. Another woman came running up to the young lady and abruptly yelled, "You don't look like you're handicapped!" The young lady quipped, "Well, you don't look ignorant, but I guess we're both mistaken." Have a nice day. :-) firstname.lastname@example.org
Kim S, March 17, 1999 - Hi, I'm glad to hear that I'm not the only one who gets the "why do you need that handicapped spot?" look! Because I'm 22, most people can't fathom that I do have a bad ticker due to peripartum cardiomyopathy and CHF. I also have 2 young daughters who tired me out quickly! Although at this point I am a functional class 1, I do have days when I'm plagued with fatigue and medication side effects and that placard sure does come in handy when I'm lugging the kids to the grocery store. Hey, I think I should get one of those t-shirts! LaLaKimmie@aol.com
Jon's March 17 reply to Kim S' March 17, 1999 - Hi Kim, I really do sympathize. When I first started using my handicapped parking permit, I was still packing around 15 years of lumber mill muscle and I really got the looks! It was probably made worse by the fact that I still had all my hair back then - in my 30s. <g> I got a bumper sticker from Steve as well as a couple of tee-shirts, and they really do help deter comments, if not the looks. By the way, Steve's wife is a CHFer. Jon. (Jon's Note: These tee-shirts and bumper stickers are no longer available since 2003)
Kim S' March 17 reply to Milo's March 16, 1999 - Sorry Milo but I must agree with Jon concerning CHFers and depression. I can honestly say that I do not and have not since diagnosis suffered from depression, anxiety or denial. I don't have the time nor the energy to worry about when and if I'm going to die. This may sound cruel but for awhile, I backed away from this site because everyone else's fears and worries about death and dying were really starting to bother me. I have a firm grip on my faith in the Lord and I quickly found a peace and comfort unlike any I have ever felt before. We all handle situations differently and I don't think its fair to say that any one of us is in denial. In the end, I believe that the Lord will take each of us when he is ready for us, not when our doctors determine it. Milo, I hope you too can find that peace and comfort soon. LaLaKimmie@aol.com
Della's March 17 reply to Milo's March 16, 1999 - Hi, I wanted to respond to you and then read that Jon did and he said all the things I feel and know to be true. Thanks, Jon. Two things, I don't have any trouble sleeping and am sorry to learn that some CHFers do suffer this problem. However, I do have a cough that is becoming a real annoyance to me. How do I know if it is the meds? It has been hanging on now for several months. email@example.com
Milo, March 17, 1999 - Hi, I asked my cardiologist if heart transplants require any pills. He said 24 anti-rejection pills a day. Considering that I would only gain 5 years from the transplant. All those side effects for 5 years. If I think quality of life on transplant, I would refuse the heart and take what life I could without a transplant. Living is one thing and how you live is another. We must be more humane to people than animals. When an animal is sick beyond cure, we put it away. When a person is sick and suffering without a cure, we let him lay there and suffer until he dies. Of course, we do have the hospice where you are so drugged for pain that one does not know who or where he is. This whole subject is one thought-provoking thing. via firstname.lastname@example.org
Jon's March 17 reply to Milo's March 17, 1999 - Hi Milo, There is a large end of life care trial underway right now that combines hospice and conventional treatment. Hospice care is offered at the beginning of treatment and added to aggressive medical therapy to see if quality of life is improved and if costs are equivalent or lower. This trial should produce interesting results one way or the other. Because of the large number of end-stage cancer patients in great pain who need pain killers during hospice care, this is the picture many people have of hospice. They do, however, provide care for all end-stage diseases, not just those involving great pain. Uh, personally speaking, I don't want to be shot in the head for going lame, like a horse. (even though I am definitely lame at times <g>) Jon.
Candy's March 17 reply to Kim S' March 17, 1999 - Hi, I am responding to Kim and Jon's viewpoint on depression, anxiety and denial. I also don't believe people should dwell on their illness as to do so only causes the depression, anxiety and denial. However, I do agree with Milo to a certain extent, although I don't think we should have the symptoms. I do think everyone of us had depression, anxiety, and denial at the onset of our illnesses. This is probably a perfectly normal reaction given the situation we were experiencing. Also it is probably a progression we go through in the mental and spiritual healing process. Some people take longer than others to accept changes and to respond to them. Some people never do and never find peace within themself. At any given time, posts will reflect persons in different stages of the healing process. I hope I can say that this site was developed to support and share our experiences and knowledge with others. The good thing about this site is it allows us to express ourselves. Thank you for this site, Jon. GrPota@aol.com
Jon's March 17 reply to Candy's March 17, 1999 - Hi Kim, Good point. I forgot to say that I spoke from the viewpoint of a person who has had CHF for quite a while. By the way, I sincerely appreciate all the thanks I receive and I thank everyone who encourages me this way. Just don't forget that it is you guys who make the site helpful to others, so pat yourselves on the back, too. Jon.
Ginger, March 17, 1999 - Hiya's, We are always talking about EF. Well, I saw this breakdown of EF at the Cleveland Clinic Forum and thought it was interesting and thought you all might think so too. It goes as follows: "Normal EF is in the 50-60% range. Values higher than this are termed 'hyperdynamic,' meaning that the heart is forcefully contracting. The lower the EF, the worse the heart function. A general breakdown of values is as follows: 40-50% = mild dysfunction, 25-39% = moderate dysfunction, less than 25% = severe dysfunction." Hugs, Ginger. email@example.com
Jamie S' March 17 reply to Kim S' March 17, 1999 - Hello Kim, Funny, I used to shy away from here because all the answers to questions of death or fear of dying either never came or were very dry and about faith. I am not downing faith, please don't anyone think that. I always thought the survivor stories of people with cancer or whatever were great. I always thought, let me be able to handle adversity with this strength. Well, when that adversity came, I wondered where the person was who could handle anything in time crisis? Why couldn't I pull up those boot straps? That is when I figured out I was done a disservice from those survivor stories. They show you this happy, strong, full of life, faith-filled person, but they don't show you or tell you about what I call the ugly time. The beginning. Nor do you know how long it took them to get to that point. So, not only do I feel sad and scared about being near death but now I felt bad because I wasn't handling it like Americans would.
I figured I was doomed because I wasn't facing this head on. So I had to do my own journey. It took months but it finally was ok. I dissected my fear of death and what all the components were that made it so overwhelming. I wasn't wallowing or hiding or other things some may say. Goodness, it takes a lot more to face the fear, dissect it and come to terms with it, than saying that we all die some day. That was too simple an answer for a complex situation for me. I could never understand religious faith. I always thought that was putting responsiblity on something else. To me that is a form of denial. It is like walking away from the situation. My husband always says "that is faith" whenever I tell him I don't understand how people can do that.
I know that that is going to be taken wrong, but it is my opinion and I can almost say for sure that there are others out there who were shying from posting on this site for the same reason. Death is not talked about here. Yes, I know it happens to everyone and some point, but that doesn't mean it can't be addressed to help people address that, so they can move past that. I don't agree fully with Milo and the "we should be depressed" but I also hate the idea that this society has regarding sickness and death. We all have different life experiences that helped or hindered our reaction and action towards the situation of our health so we all come to this table at different phases of recovery, mental and physical. That is how we help people. This wasn't meant to blast anyone. Take care of you, everyone. My MUGA scan is on April 1 - Ha! Jamie. JAMIEDAN@prodigy.net
Jon's March 17 reply to Jamie's March 17, 1999 - Hi Jamie, I don't think you are misunderstood by those who love Christ. We understand the "natural man" from several angles, including the teachings of Jesus. He goes into some detail about how others will perceive our faith and why. Don't forget that most of us (me included) were unbelievers ourselves - often for most of our lives - so we have a unique perspective on the subject of faith. We not only know the pro and con sides, we have been both the pro and con side.
I have always been a very logical person, so I find it sort of amusing that my own faith is perceived as a turning away from fact rather than an acceptance of truth. It was my faith that led me to start and maintain these pages, which doesn't seem like denial or walking away from the situation. This heart failure support site is actually the ministry Jesus gave me to do. I am honestly curious how that fits into your view of faith as denial. Feel free to e-mail me if you'd rather (or not - that's cool).
Talk of death is acceptable here, but obviously this forum is life-oriented. Maybe that's because I am life-oriented. The topic of impending physical death has also been used as a jump-off point for issues that I do discourage. The reason for discouraging some issues is simple; this place can easily lose its focus as a support and information resource and become just another place to bicker, like Usenet. For those topics, there are plenty of sites open to un-moderated discussion, and my e-mail door is always open. The Beat Goes On is just here to help people cope with heart failure, one way or another. Speaking of support groups, I found the motherload! I added it to the Links page under "Support/The motherload of all support group lists."
Anyway, feel free to discuss death here if you think it may be of benefit. I rarely think about it because I see it as a trivial event. My self doesn't die, only my body, and a new one awaits me. That leaves me looking naive to unbelievers but hey, maybe I know something they don't. After all, in a logical universe, the possibilities are endless. :-) Jon.
Christine D, March 17, 1999 - Hi all, Linda O, in regard to your question regarding chelation, yes I do feel good after each treatment but I just cannot explain it. It seems to remove the metals from your blood and it sure seems to get rid of the stress that has built up after a hectic work week. After an initial low immediately after the treatment, you may feel tired and want to sleep but I felt better when I got up and walked around and got rid of the stuff from my body. You are supposed to drink lots of water to get rid of it and it seems to make you go often. The dotors combine the chelation with a good dose of vitamins like the B's, C and magnesium, which seems to get washed out with each treatment. Do let them know if you cannot have any of the above. I could not take heavy doses of the B's as I was already taking them during the week. Thanks for the information. I have a Kaiser Plan through my husband and may just need to consult with another doctor about my condition. About driving after the treatment, yes you may but you have to be your own judge as to how you feel. You may feel a little weak or dizzy, especially the first time so don't just rush out the door. Sit for about 15 to 20 minutes, get your feelings together and then when you feel like it, get going. The recommendation is to have a driver. Since I don't drive, my husband takes and brings me back. If you have a friend or relative, you may consider asking them. Better still, ask the chelation doctor's office about this. Also take along a snack. Some people get a low sugar effect; maybe an apple or a small piece of low fat granola bar and a bottle of water.
Bill D, thanks for the information. I am glad to hear the news of the way your heart tries to work around the blockages - the art of survival. I will have to look into the venturi effect, I never heard of it. I was told at one time that I could have stents put in for the blockages but now I am told it could re-block and my arteries are too small, about 2cm compared to the normal 3cm. Does anyone have this problem and how has this been treated?
I was wanting to know if anyone has had the option of looking into gene therapy. Those in my position with no option for surgery have had this kind of surgery, I have heard on the news, and they feel much better and have returned to a normal life. Aloha and I will be looking forward to keeping in touch with you folks, from sunny Hawaii, Christine D. Chrisd1950@aol.com
Robert Farish's March 17 reply to Kathleen's March 14, 1999 - Hi, I'm 47, male, married, have one son and worked hard all of my life. Last July, I laid down and couldn't breathe because of fluid in my chest. I had to sit up to sleep. I started taking over the counter medication, thinking that I had a cold. It kept on so I went to my local doctor (Dr. Young, who is great) and we thought I had bronchitis. He prescribed antibiotics and that was okay for about a week. Then I went back and had a chest x-ray and found out that I had an enlarged heart. He called it "a cardiomyopathy or congestive heart failure." Dr. Young then sent me to the East Carolina School of Medicine and Dr. Orr put me on Zestril, Coreg, potassium and Lasix for fluid. I had always been in great health and had checkups recently for insurance. I had a treadmill and echo 2 years ago and passed with flying colors. I'm 6'3" and weigh 214lbs so I'm not overweight.
I don't smoke but drank a couple of beers or a couple of glasses of wine every night to "get the edge off." Dr. Orr stated that mine was idiopathic cardiomyopathy, which means that "they don't know really what caused my problem." My wife and I believe that of the 3 causes they said possible - heart attack, high blood pressure or viral - that mine had to be viral. I've been through echos where my ejection fraction was 15 last July. I've also had the cardiac catheterization, which I didn't know how that would be, but for anyone that hasn't had one, it's a breeze, just a piece of cake. By the way, my arteries are like a 20 year old's so no blockages. I've now gone to the University of North Carolina at Chapel Hill for another opinion and am seeing a Dr. Kirk Adams. I can't tell you enough about this man. He is the most sincere, caring, compassionate and on and on. My EF is now at 24 and he asked me if I wanted to enter a new study program for CHF patients and I wholeheartedly said yes. I begin March 25 for 12 weeks and he said that if this didn't improve me, he had other new drugs he wanted to try. This doctor is over the cardiology department and is in my opinion, the best. They are on the cutting edge of the latest treatments.
Currently, I am on 6.25mg Coreg twice a day, 20mg Zestril twice a day, 0.125mg Lanoxin once a day, 10meq potassium once a day, 20mg Lasix once a day and 20mg CoQ10 once a day. I also have 0.5mg Valiums and ibuprofin tablets for chest pains and back pains that occur during the day. As for parking passes and so forth, I also have one and people look at me and think to themselves, "Look at him, there's nothing wrong with him." Also, I'm not to lift anything at all, so you can imagine when my wife and son are lugging all of the bags at the airports that people are thinking, "Just look at that guy making his wife and son carry all the bags." I just went to the sign store and had a little plastic badge in red with white letters that I pin on my lapel that reads, "Cardiomyopathy Patient" with the wheelchair logo. I intend to wear it as there are a lot of sick people around and people just don't realize it.
I did ask Dr Adams about the average time that people with CHF usually have to have a transplant and he said 5-7 years, but he said that we had a lot of new things to try first. I'm very encouraged with him. I've got a great mental outlook and that's 75% of it. If I start to get down, I just start to count my blessings and always run this verse through my head, "Surely goodness and mercy shall follow me all the days of my life and I shall dwell in the house of the Lord forever." Everyone keep the faith, as CHF is not the end of life. It just makes you appreciate even the little things a little more these days. firstname.lastname@example.org
Gatha E, March 17, 1999 - Hi everyone here on Jon's Place, I really appreciate the prayers and thoughts that have been sent my way. As I wrote that I was getting better, that same day, I was back in the hospital with CHF problems and gram negative pneumonia. My question is, when there is fluid on the lungs, do you always come down with penumonia? I had had this kind of pneumonia 3 years ago and seemed to recover much much quicker than I have this time. The wheezing and coughing has just been much worse with 2 inhalers and breathing treatments every 4 hours. Can anyone tell me what to expect? Jell855859@aol.com
Jay Q's March 17 reply to Milo's March 16, 1999 - Hi Milo, Generally, your statement makes sense. However, one must be careful administering the positive thinking admonition to others because it represents a terrible oversimplification and it could have an undesirable flip side. Attitudes are complex and emotional. There may be exceptions but most people cannot simply switch them on and off, no matter how hard they try. Also, we want to avoid the cruel implication that "it's your fault you're not recovering because you aren't thinking positively." No need to add guilt to the already overwhelming burden of chronical illness. Cheers, Jay Q. email@example.com
Tandy K's March 17 reply to Milo's March 17, 1999 - Hi Milo, I have been a part of this group for a short period and usually post to the caregivers' forum, but I read here because the CHFer is my 13 month old son. To say that putting him down like an animal makes sense, is wrong. God is in charge of his life and has only put me here to take care of him until God calls him home, when He decides. Milo, have you checked out any of those antidepressants you were talking about earlier? <g> Also, where did you come up with 5 years? firstname.lastname@example.org
Bill D's March 17 reply to Kim S' March 17, 1999 - Hi Kim, Regarding the handicapped spots, I have a system. If I see someone is looking at me in that way, I go into my Sanford and Son act. "This is the big one!" I yell at Rosie while waving my hand in the air as I stagger along bumping into cars. The "lookers" can't seem to get away fast enough! <g> Bill. email@example.com
Bill D's March 17 reply to Joyce's March 17, 1999 - Hi Joyce, Welcome to Jon's Place. You have come to the right place to find all about your EF of 35. It's too soon to tell how big an impact it will be on your life. All the same, you had better get prepared. Click on Site Index at the top of this page. Start by reading The Manual. CHF is a bunch of symptoms that go with many of the diseases that affect the ability of your heart to pump your blood. Those symptoms include shortness of breath, edema (swelling) of the ankles and stomach, tiredness and exhaustion. How do you feel? Bill. firstname.lastname@example.org
Margie, March 17, 1999 - Hi, I have CHF and was told it was from the chemo I had 5 years ago. Is there anyone else out there with this problem? Thank you. email@example.com
Judy, March 17, 1999 - Hi, I am a 42 year old female who has had juvenile diabetes for 34 years, hypertension, hypothryoidism, retinopathy, and now CHF. I suffered a heart attack last November, had a heart cath and 6 bypasses. My meds are insulin, 20mg Accupril, 0.125mg Synthroid, 20mg Prozac, 10mg Lipitor and 12.5mg Coreg twice a day. I'm walking every day and feeling much better. During the last 2 weeks, I thought I noticed a slight shortness of breath on occasion. Last Friday I did a Thallium stress test and got the results today. The cardiologist thinks there may be one area of my heart that is not getting enough blood flow and I may need another heart cath. I am to see him tomorrow. I'm afraid I won't have my wits collected enough by tomorrow to ask the right questions. My husband is out of town and I don't have anyone to be my crutch right now. Sorry to ramble on. Anyone got any input? God bless you all. firstname.lastname@example.org
Kim S' March 17 reply to Jon's March 17, 1999 - Hi Jon, I couldn't agree with you more. I have been on both sides of believing and not believing. I certainly do not perceive my faith as denying my illness. My cardiomyopathy and CHF is not a roadblock in my life but instead a speed bump and a stepping stone to showing others exactly what faith is. This body is just temporary but my soul is eternal. I'm not posting this to push religion. I was just surprised to read that people think having faith and a positive attitude toward an illness is a form of denial. LaLaKimmie@aol.com
Ben B, March 17, 1999 - Hi, Just to add my own personal experience and 2 ¢ to the death and dying, denial, depression, anxiety discussion. When I was first diagnosed with CHF/DCM about two years ago, I felt terrible. My doctor gave me some Zestril and I felt better. He didn't tell me much so I looked it up in an old book and it said I had about a year to live. I didn't believe this at all, I felt fine. This was my denial year. I went back to work but never felt 100%. Still it was one of the best years of my life but since I wasn't getting better, I went back to the doc, found out this wouldn't go away and would shorten my life. I happened on this site, which at the time seemed to have a lot of death dirges going on.
After some hearty anger at my docs and myself, about two months on what I now call my "wake period" pre-mourning my own demise; depressed and nervous, crying, everything. Somehow I snapped out of it. I always had a strong faith, but it wasn't really that. I just got tired of being part of the living dead. I forced myself to do things. Now, the last 6 months have been six of my best. I know this can change but I'm better prepared. I also know I'm going to die sooner than I expected but I don't dwell on it 24/7. I also know anything can happen. I eventually re-investigated this site and it seemed a lot more positive but I knew it was really me that was a lot more positive. If you want to read denial, depression and anxiety read some of the loved one's posts - people who have loved ones who refuse to follow any doctor's orders. I swear we are a happier bunch over here.
Cindy, March 17, 1999 - Hi all, I'd like to add to the discusssion about the depression, faith, fear of dying and death thread. There's been some excellent points made by both "sides." As Jon has pointed out, this site is faith driven. I coped relatively well for the first 6 months of my CHF. I'm not anymore. I cry all the time, have increased shortness of breath and fatigue, and sleep is a joke. In my opinion, for me to suddenly find Jesus after a lifetime of non-believing would feel hypocritical. I speak only for myself. My sadness comes from the pain of leaving my children motherless. Sometimes this pain is unbearable. I do see a psychologist and am on feel-good meds. This sadness goes beyond that. I hope to get past this and feel better. I do believe that I have to work this through and that it's very important to respect each individual's way of coping. I appreciate the support that I've received here, and that I have not been condemned for my beliefs or lack thereof. Best, Cindy M. email@example.com
Candy's March 18 reply to Cindy M's March 17, 1999 - Hello Cindy, You sound exactly like I did in going through the healing process. I spent a month or two feeling great. Then all of a sudden I had all the symptoms you describe. I think that's part of the process we all go through with our condition. Also, I was an almost nonbeliever in Jesus. I don't know what turned it around for me but I do believe now. I don't think its hypocritical of me. I spent hours upon hours soul searching. I went over my whole life. I guess you could compare it to taking inventory of my deeds in life and found there are things I regret doing, things I don't regret doing and things I still want to do. One of those things I want to do is see my grandchildren grow up. I don't know if you ever heard of this prayer but it may help. God, grant me the serenity to change the things I can change, to accept the things I cannot change and the wisdom to know the difference. We cannot change that we have an illness but we can change the way we respond it. GrPota@aol.com
Christine, March 18, 1999 - Hi, This is Christine from Hawaii again. Just to touch briefly on the topic, I discovered I had heart problems (blockages) in 1995 when I had complained about chest pains and shortness of breath during aerobic exercises on the stepper. I could not complete the class. I was then sent for a angiogram which revealed the above and caused me a lot of sadness and depression. Let me tell you what has kept me going for the last five years, and today, is a scripture from the Bible that a friend quoted to me in Isaiah 41:10,13. Yes, we are told by our God not to be afraid, He is with us and he is the one "grasping our right hand and he is with us and will help us." These verses have given me the strength to go on even after my heart attack in December of 1998, and with a very poor outcome. I have a family: 3 wonderful kids and a husband who is supporting me. What more can I ask for? So take heart and live one day at a time, and make the best use of it. Christine D.
PS. To all you good folks and for Jon who is doing a great job of creating this site, so we can get together with our happy and not so happy times, aloha! Chrisd1950aol.com
Ruthie A, March 18, 1999 - Hi all, As is everyone else, I have something to say about faith and denial. When I first found out I had CHF, I cried. Not because I was going to die, I don't worry about that. After all, I will get a decent heart and a gorgeous body. ;-) I cried because my husband and son would be sad and lonely without me. After a while I realized that if my death was part of God's plan for my family, He would take care of them in their grief. So I left it in God's lap to worry about. I have enough with homeschooling and running a household and coping with CHF! As for the faith part of all this, I have been surprised when people have come to me or written me to say that my faith in the circumstances of my life has been an inspiration to them and has encouraged them to get to know God better. If that's the result of dealing with CHF and trusting God, then I am glad to be sick! It is worth it. Our life, our faith, our death do not just affect us; they have an impact on every person who comes near us. I could not be depressed if I tried. What an opportunity to help others! Nor am I in denial. I know I will die. Everyone will. In some ways, I look forward to death because that is when life will really begin.
On a different note but good news, I finally got into the heart failure program at Vanderbilt here in Nashville. The screening process is pretty extensive and many people are denied but I made it and see my new cardiologist next week. I have been making do for over a year now and though I still don't have insurance, I just decided that enough was enough. Somehow the money will come in to pay for the added expenses but I think it will be in my best interests in the long run. I am expecially looking forward to the evaluation in the first appointment as I am experiencing more and more chest pain and shortness of breath. Hopefully a good juggling of my meds will do the trick. Ruthie. firstname.lastname@example.org
Heather S, March 18, 1999 - Hello family, My affectionate greetings to you all from down under. I just wanted to ask if Martin L could mail me again, as all my mails to him at Emilrod@aol.com are returned by some fierce sounding server called Thundercloud. Also Luc has not posted for some time and I wondered if anyone knew how he was? On the perennial topics of life and death, my daughter was casually reading out snippets from her Atlas. I was amazed to hear that right now, in 1999, the normal average life expectancy in many many countries of the world is still in the low forties. Under those circumstances, old chooks like me who've slipped past that half a century landmark, could well take the attitude that we've had a reasonable number of innings. Whoever is qualified to pass judgement on the feelings and beliefs of others, anyway? My biggest worry about death is how to prepare those you will be leaving, especially children. I would love to hear personally from any of you who have given this serious thought. I'm always home. God bless you one and all. email@example.com
Jon's March 18 reply to Heather S' March 18, 1999 - Hi Heather, I think a lot of us have given serious thought to these matters. I am preparing my daughter by showing her how I cope with life in the face of my own impending death. What better way to teach than by example? I confess to some confusion though. Do you consider discussing differences of opinion the same as passing judgment on the person who holds that opinion? Jon.
Jon's March 18 reply to Cindy M's March 17, 1999 - Hi Cindy, I have been trying to sort out your statement. Can a person know how changing will feel before they make the change that causes the feelings? Would your theory apply to changing your mind about any other issue? I am having difficulty understanding what you said. Can you re-phrase it maybe, to help me out? Thanks.
For what it's worth, I didn't find Jesus suddenly. It happened for me after a long and intense period of study. In my own case, my daughter told me afterward that she was thrilled I had found Christ because she was very worried about my soul when I first got sick and didn't believe in Jesus. She was 13 at the time, and wiser than me. Jon.
Tom S' March 18 reply to Joyce's March 17, 1999 - Hi Joyce, Look in The Archives at the post: Tom S' March 14 reply to Jeanette Walberger's March 11, 1999, concerning your questions about idiopathic cardiomyopathy.
Tom S' March 18 reply to Cindy M's March 17, 1999 - Hi, I've read a lot of posts about individuals who are concerned about the quality of life, the duration of life, and just coping with this thing called CHF. Most of those posts were egocentric, or involved revelations of personal divine intervention, and other coping mechanisms, but this really is the first post I can identify with on a personal level. The only time I have had a serious bout of depression or anxiety during the entire 5 years, including onset and finally a full blown CHF crisis, was when I thought of my 8 children. How are they going to manage without me? While I was bathing my face with tears, the answer came very swiftly when my 7 year old daughter noticed and asked, "Daddy, why are you crying?" I very solemnly replied because daddy's very sick and is worried about you. By that time 4 of my 8 were looking moon-eyed at a father they had never seen crying before and Marcella Marie, my 8 year old daughter, piped up, "Mommy says you are gonna die." I replied yes, that may happen. I could see the light bulbs popping on in each child's head. Jamie Lee broke what seemed to have become an extremely pregnant pause and asked, "Daddy when you die, can I have your computer?" A fusilade of, "Daddy, when you die can I have,...," ensued and the tears in my eyes were soon dried by the laughter that filled the house. We have all survived catastrophic events and deaths in our lives and the bottom line is that life will go on without us. We are conceived in a blink of an eye and ultimately, death is equally swift. Life is the stuff that goes on between conception and death, and I believe living that stuff to its fullest is our mission, particularly for the children we have brought into this wonderful circle of life.
Joyce's March 18 reply to Bill D's March 17, 1999 - Hi, Thanks for welcoming me to Jon's place. I am feeling fine. I do get tired. They say that I may have had this problem for a long time, just didn't know that I had it. When I think back, I've always been a little tired. I do have 2 boys that keep me busy, so to me, I have a good reason to get tired. I am in the process of quitting smoking, which seems to be ok. I will have my hysterectomy on the 30th of this month, so I am a little worried about that. The doctor assures me that I should be fine during the surgery. I will be glad when it is over and I know that I am ok. This was such a big surprise to me. I always thought I was a pretty healthy person. I am not overweight and have no other health concerns other than mitral valve prolapse. I have always had an irregular heartbeat and have told doctors for years that I was a little concerned. I sometimes find it hard to sleep because it doesn't seem right to me. I also seem to have a cough, mostly at night. In the past, when I would be checked, they said that I was fine; Now all of a sudden, this. I hope to find out more after surgery of what I should expect, or should I just forget about it and live life as I have always done? Thanks again for you concern. EFGuard@aol.com
El R, March 18, 1999 - Hi, I am a 47 year old female with idiopathic cardiomyopathy, class 2 CHF, complete LBBB, and a couple of funky valves, with accompanying murmurs. My EF was 25 based on the angiogram done in 1995 and has varied from 20-35 with yearly echos. I have been a patient at the UCLA cardiomyopathy center since soon after diagnosis in 1994. I have felt very secure in the care there. However, I don't live in LA and the 6 hour car trips 4 times a year have become something I am not sure I can afford, at least not unless or until the SS comes through, if it does. Today I see a new doctor here in Las Vegas, a cardiologist, not a cardiomyopathy specialist. I am hoping I will feel comforatble with him as I would like to alleviate the trips to LA, unless or until I have changes or begin to deteriorate. I have been stable for about 3 years before that steady deterioration, then it just stopped and I hope it stays this way. On the other hand, I feel bad giving up my doc down there and his staff. I knew everything they said or did was to benefit my health.
In Las Vegas, everything is about money. We have many sleazy doctors who are only interested in making as much as they can as quickly as they can, so they can retire and get out of medicine. I have had many negative expereinces here, thus my apprehension. My husband works in the OR, so I hear many tales of the disgusting attitudes of the surgeons. Sad to say, I am very cynical when it comes to medical care here. They almost killed me here doing a heart biopsy. My heart stopped 5 times. My chart says I tolerated the procedure without any difficulty. Ha! Afterwards I found out they had never done a biopsy on a patient who still had their own heart. It hurt when they started taking bites.
After reading this page and the stressed point of finding a specialist, I am even more concerned. A lot will depend on whether this new doctor can respect my feelings for the care I have been getting. I don't want any changes, as I have been doing relatively well on the regimen that Dr. Fonarow has me on. I will check back on this board and let you know how it goes and also maybe get a clearer sense of what this is I am living with. Honestly, there is much I learned from this board already, just reading; stuff I didn't know, maybe didn't even want to, but should know. Thanks in advance for the info and for the info already read. El. firstname.lastname@example.org
Jon's March 18 reply to El R's March 18, 1999 - Hi El, Welcome to Jon's Place. I have to go get some proper food cooking for dinner so I must be brief. I am very surprised that you felt anything at all, much less pain, when your heart biopsy was done. This is the first time I have ever heard of that. Was there some additional problem during the cath? I felt nothing when they snipped me and I had taken no drugs at all to relax me. Please remember as you talk with your new doctor that CHF treatment changes so fast these days, it's almost impossible to keep track of it. Try to be open to changes in your own treatment. It doesn't mean your last doctor was wrong, just that your new doctor wants to help you and has some different ideas. Maybe some of those ideas will be good and make you feel better. Stay loose. <g> Jon.
Joy S, March 18, 1999 - Hi, I was recently diagnosed with CHF. I have no idea what I'm in for. I really enjoy this site however, it is very informational. I'm a 38 year old black female from Dallas, Texas. I work a full time job and am the mother 3 daughters, who I'm raising alone. Life is stressful and until this happened I thought I handled things well. I feel so much better now that I am on medication: Lotensin, Lanoxin, furesemide, K-Dur, warfarin, and a host of asthma medications. I choose to believe I am what God says I am. I choose to speak things that aren't as though they were. email@example.com
Jim H, March 18, 1999 - Hello fellow CHFers, My name is Jim and I am glad I found this site. I am 46 years old and was diagnosed with DCM and a-fib 2 years ago. I was wondering if anyone else is as confused about this disease as I am? I was told my EF was 16% 2 years ago and the last test I had, my EF was 32%. What I am confused about is that I have never felt better in my life. I have never felt bad and to this day, if someone told me I am dying, I would say that they are crazy. Does everyone on this site feel bad or am I just lucky? Also, I am wondering what the average life span is for people with CHF? I was told by my doctor that 50% of the people diagnosed with DCM will be dead in 5 years. It just seems strange that a disease with a mortality rate as high as that has no symptoms or at least any that I can tell I have. I am taking 25mg Coreg twice a day, 80mg Diovan daily, Lanoxin,and warafin. Well, once again let me say that I am glad I found this site and will return often. I hope everyone at this site feels better and to keep your spirits up because there is very good research going on for this insidious disease. JHall58317@aol.com
Jim H, March 18, 1999 - Hi, To all of you who are having that persistent cough, I had that too when I was taking Captopril but my doc prescribed Diovan for me and the cough went away immediately. Maybe you could ask your doc if they could prescribe Diovan for you. It works as well as the Captopril and you won't have that annoying cough all the time. I hope this might help some of you. JHall58317@aol.com
Jon, March 18, 1999 - Hi everybody, Tonight our pooter was our teenager's Term Paper Central! I had no time to use it but I'll post a few and try to catch up tomorrow. If yours isn't here yet, hopefully, it will be soon. Jon.
Jamie S' March 18 reply to Kim S' March 17, 1999 - Hi Kim, I don't think that having faith and a positive attitude towards illness is a form of denial in all people. Just like drugs, sex and my personal favorite, food, religion can be a vice. Do you think people are negative because they think of death? It's not negativity, it's reality. Do people who don't have religious faith have a poor attitude? I am not negative and I don't have a poor attitude. Young Hearts was created by me so I could help others deal with heart disease and the possiblity of dying young. I don't see how addressing death negative.
You mention that you used to be a non-believer. What has been the difference between the both for you? I think that what you said about CHF not being a road block but a speed bump is great and it's good advice. How long did it take you to get to that point? The answer you give is also important advice because it lets people know that it wasn't an hour after becoming sick. I want to let people know that it takes time. Destroy the media creation of the strong sick person, look at her go. It disgusts me and I think that it needs to change. People are doing a disservice by doing that but then saying that one is scared, depressed, nervous would be un-American. I knew what I said in the earlier post would be taken wrong. Jamie. JAMIEDAN@prodigy.net
Jamie S' March 18 reply to Jon's March 17, 1999 - Hi Jon, Faith is not exclusive to religion nor is spirit. As you can tell I question God and the Bible. I always have. I feel happy for anyone who is happy with their chosen belief system. I am glad you started this site. If it is Jesus working through you, great. I think it is funny that someone can have so much faith in religion but still take medicine. Isn't that not being totally faithful? It seems hypocritical - best of both worlds. I like this site I always have it was there when I needed information. I have made some great friends, I hope I keep them since this is coming out. I don't want this to be about who is right and who is wrong. I just think that support can sort of be one-sided. I also just want to know that I can help a person on all levels whether it's getting them through fear of dying or possible recovery.
I e-mailed various women and I think because I didn't get lofty with survival they didn't want to continue talking with me. When I first got here, I am sure I felt the same. I read a lot of sad stats and I didn't want to come here anymore or have to deal with possibility of death. I just don't want you or anyone else to think I am disrespecting their beliefs. I just was saying what I saw and what I see is people not expressing their whole feelings. Jon, I'd love to say what I feel about religion but I'll e-mail you I don't want to chase everyone away at once.
What is so wrong with mourning the loss of yourself to illness? If someone you loved became ill or died, you'd mourn. Once again the American way is not to have love for yourself and to be so important to ourself that we have to put on brave face for those who will be left behind. It is how long you stay in that mourning that is the difference. Jamie. JamieDan@prodigy.net
Jon's March 18 reply to Jamie S' March 18, 1999 - Hi Jamie, I'm alive. My death will only happen once, and I cannot predict or control any aspect of it, no matter how much I think about it. It honestly doesn't seem worth much discussion to me, so I never bring it up. My thinking on death really is that simple. I guess I'd make a lousy philosopher. <>
I don't pay a lot of attention to the media but I haven't noticed sick people being glamorized. I see individual cases applauded but that's about it. One could say you are one of them - you got sick and started a support group to help people. That's pretty heroic in its own fashion. Different people react differently. That's cool. They are them and I am me.
I have no idea why taking meds conflicts with faith in Jesus Christ. God provides me with all that I need. Should I not eat or drink because God would keep me alive regardless? Not breathe? What is the difference between that and taking medicine when I am sick? Where is the line I shouldn't cross because of my faith? I missed your point on that, I think. I can't really discuss organized religion because I don't know that much about it. I would be happy to discuss the Bible and my faith in Jesus Christ. Be sure to read my "Faith Ain't Blind" page first - it's the fast track to what I think about the Bible. :-)
You say you lost yourself to this illness, therefore you mourn. How did you lose yourself when you got sick? I was Jon before I got sick and am still Jon afterward. I am still useful, both to myself and others. I was a father, a husband, a friend, a son. I am still all of those things, sick or not. My strength is in my mind, my spirit and my willingness to reach out, not in my body. Perhaps I do not mourn the way you do because I did not lose as much. I just don't know.
I know that when I am down, it is invariably for one reason, no matter how I try to rationalize. It is because I have become introspective, thinking only of myself and shutting out what other people say, replacing it with what I want to hear. It's a bad habit of mine, although it has improved with time. When I realize I am turning inward, that's when I start reaching out again to other people, taking an active interest in their lives, their problems, their feelings. That's when I stop being down and start feeling really good again; something to think about. We should continue discussion about faith via e-mail so as not to hog the forum. I'd be happy to talk about what we lost when we got CHF. It might be a good starting point for discussion.
I lost my 10 year hobby and investment of time and money in weightlifting. I lost the feeling of physical power it gave me. I lost my job. I lost the pride I took in the craftmanship turned out by my hands and the benefits of extra money to spend on doo-dads and junk food. Oh yeah, I lost junk food too. That one hurts. <g> I lost my freedom to indulge whatever whim I felt at the time. I lost my ability to chase my dogs around the yard willy-nilly, and the ability to tickle my oh-so-ticklish daughter. I lost my off-road play time with my 4-wheel drive pick-em-up truck (a bright red Dodge, baby!), and beer busts after work. I lost the energy to do custom woodwork, which I went to night school for 4 years to learn. I lost the use of the wood shop in my garage - filled with expensive and well used tools along with the sad waste of thousands of dollars of lovingly stored, hand picked hardwoods I had envisioned turning into gifts for the ones I love. Did you know I hand-made all my daughter's presents and many of her toys before she went to school? She was the envy of her boy cousins. I lost my ability to memorize things. Yeah, I lost a few things.
Did I gain anything? You, Bill, Jills, Judies, Als, Rob, Grantley, and all the people here. I started learning patience for the first time in 36 years. Strangely, although my time on earth may be cut short, that is what I gained the most of - time. I now take the time to talk to my wife, constantly, about everything, with complete honesty. I take the time to talk with my daughter about things I would never have considered important before but which mean the world to her. I take the time to stroke my Rottie's big beautiful head, to walk out in the yard like I did yesterday in bright spring sun (sneezing), and just look up and stare at the red buds shooting out all over the big tree in the corner of the yard. Did you know that weeds have beautiful, tiny flowers on them? I take the time to say thank you where before I hurried away. I take the time to be happy and to revel in the fact that I can be. Well, that's a start, and I don't even know if you're interested. But there it is. Nothing fake, and if it sounds corny, it is also true. Let me know what you lost. I'm interested. As a young mother, your list is probably a lot longer than mine, but I have the time to listen. <g> Jon.
Mike W, March 18, 1999 - Hi, We're all on the same road, believers, atheists, heaven, the void; but the trip is different for each of us. I'm glad that the thread has not degenerated into a who knows better how life and everything works, those who are Christians and those who are not. I suspect that Jon might have something to do with this. :-) Peace to all, Michael, diagnosed CHF 11/97, EF 25-30 and not doing too bad. firstname.lastname@example.org
Pat L, March 18, 1999 - Hi everyone, When first diagnosed with DCM and CHF in March of 1995, I was told my EF was below 20. With appropriate medications, watching my sodium and losing weight, it was 27 in June of 1995. I went back to work at a stressful job and by November of 1995, I was in bad shape. I went on Disability in December of 1995. At this point, depression set in. I had so much of my self-worth tied up in my career, I felt lost. My doctor prescribed anti-depressants, but I decided not to take them. I went to a psychologist weekly for 6 months (all the HMO would allow!) and she said it was normal for me to feel depressed at this time. The main focus of discussion with the psychologist was a drastic change in my one daughter's attitude toward me since I got sick. I haven't seen her now since November of 1996 by her choice. I had to come to terms with this, which I couldn't have done on anti-depressants.
By January of 1997, I was pretty sick. A VO2 test result was 5.9, with an immediate referral for heart transplant evaluation. A second VO2 test came back 12.9 and I was told a heart transplant would be down the road. In May of 1997, I went into the carvedilol (Coreg) drug trial. I have had some rough times tolerating it but my EF was 49 in September of 1998, and 40 in February of this year. I don't feel a whole lot better all the time but I know my heart is working better. My heart has decreased from the 7.2 enlargement to 5.6, which is "high normal." Having CHF has caused me to re-evaluate my values, change my priorities, take better care of myself, and has added a new spiritual dimension to my life that was not there before CHF. I do not take this lightly but see myself as living with, rather than dying of, a serious illness. Pat L. email@example.com
Al M's March 18 reply to Milo's March 17, 1999 - Hi, Not to beat a dying horse, no pun intended, but Milo, unless you know something nobody else does, from the day one is born, technically, one is dying. I have come to realize that I have some control over what I worry about. I like to pick my targets, not randomly worry about what ifs all the time. I sure don't feel compelled to be depressed or anxious just because I have CHF. I've felt bad in the past when I double bogeyed a hole in golf. Even trying to ignore all those dumb, trite sayings about worry about what you can fix, don't about, etc, if you can do something that works - do it. If it doesn't work, do something else. If all else fails, move on to another topic with promise. I'm only 55, I sure didn't think anything like this was going to happen to me but it did. I just don't see it as productive to counsel depression or to spend time saying oh poor me. I'm sorry other folks have problems. Everyone has ways of handling adversity in life. Some just do it better than others. That doesn't mean they can't unlearn or learn something different. Just don't give up or give in, couldn't hurt. Al M. firstname.lastname@example.org
Jennifer B, March 18, 1999 - Hi All, I haven't written in a while but I've been reading. As I review the last couple of weeks' worth of posts, I cannot help but want to encourage all those who have been focusing on death to focus on living. Yes, I too, have in prior posts shared my fears and anxieties about dying. Things have changed. The answer I give to the question "Are you dying?" is "I am living." It's a mental attitude. Please, if there is anyone out there who is resigned to the belief that this disease is definitely going to kill them, don't. Don't go there. Instead, make a list of the things they would like to do and then do them. One at a time, check them off the list and if you by any chance run out of things, make a new list. Sure, it helps to be practical and even plan out your funeral if it gives you some sense of preparedness. I planned mine, complete with clowns and crazy songs and balloons being released. I used to believe that I had to dwell on it and move on but no more. Why? What is the point? Even my children are encouraged by the difference in me. I am living life to the fullest!! I want them to remember me laughing, singing, being silly, loving them completely and unconditionally, not lying around waiting or feeling sorry for myself or complaining like I used to do. I am not accusing anyone of these things, maybe I was alone. Tom S, I have 6 children and I know how you feel. It is wonderful that such a serious conversation turned into something lighthearted and memorable. Life is good! Life is short! Make it count. Sign me Pollyanna. email@example.com
Jamie S' March 19 reply to Cindy's March 17, 1999 - Hello Cindy, So much of my sadness was the thought of not being here with my children. After a few months I started really breaking that apart by thinking of the specifics; I can't protect them, they wouldn't know me either as a mom or a person, how will they be raised, does my husband know what I'd like to teach them and how I'd like to go about it. So the things on this list that I have control over I did something about. Them not knowing me or childhood stories; I made an autobiography and with whatever momentos I have, I retold the story. So problem one solved. I started talking to my husband Dan about specifics. At first, I cried a lot, but he was very supportive and understanding so after a bit of that, I can't remember how long but it was another fear sold. So I was feeling better. My fears were classified and clarified and put in order. I started living again and adopted the life of what can I do today to impact my kids? Jamie. JamieDan@prodigy.net
Milo, March 19, 1999 - Hi, I have been reading about lifting weights. When I was in cardiac rehab, not much time was spent on the rowing machine. Mostly, we used the treadmill and stationery bike. When asked about this, I was told to knock off the arm stuff. The arms are too close to the heart; hence, use your legs and you will be better off. Also jogging is not as beneficial as walking for the heart. firstname.lastname@example.org
Claire F, March 19, 1999 - Hi, I am 43 and diagnosed with DCM 6 years ago. It is familial. I have posted recently but I guess my computer illiteracy caused it to be wiped out. When I was initially diagnosed, I refused to get a handicapped placard. It was only after some episodes with my newborn son that I realized it was not reasonable to expect to act as if nothing was wrong. Over the years, I have found that the more slovenly I am dressed, the less problems I encounter. What does that say about the public's view of the disabled? However, I get comments and stares if I am dressed for business; suit and heels. I would really like to pull off Jon's solution but somehow being only five foot three, the effect would not be the same. I do exit my car at a slow rate. I do this intentionally. It looks like I am more decrepit. It also makes me relax so that I do not go ballistic should someone comment or stare. I can relate to LeeAnn and the day care situation. There's nothing like picking up your children after a busy, exhausting day and dealing with other exhausted parents. I once asked a parent who was not supposed to be in the spot for disabled, where her placard was. She offered all kinds of excuses. I was appalled to later discover she was in a superior position where I work.
El R's March 19 reply to Jon's March 18, 1999 - Hi Jon, Wow, I can't believe you didn't feel it! Do you have your own heart? The minute the catheter touched the inside of my heart it went in spasm before they even took a bite. The first touch to the inside was the worst of the spasms as I lost consciousness. Then, they just told me to cough; "cough when we say or we're going to hit you with the paddles" because it would start to spasm again. My heart muscle was punctured and I bled into the sac around it. It didn't feel good either and I was scared to go to sleep that night. My chest hurt. I thought all of this was because I was not post-transplant. I don't think I am a big ninny either. I have tolerated many procedures and surgeries. I don't like pain meds. So I am amazed and really wondering what went wrong? I have been a little suspicious all along that things did not go as planned. They planned to take 6 bites and took only 4, because they were scared of what was happening each time. Do you think that is not the norm? I was told that I had the scarring from a heart attack. They felt it had happened during the biopsy. I certainly don't recall ever having thought I'd had one before. <g> Per my visit today, it was miserable. I am very disappointed. I will find a way to continue to go back and forth.
Jon's March 19 reply to El R's March 19, 1999 - Your biopsy was not normal; not even close. Something went terribly wrong and if the doctors who did the procedure did not explain to you precisely what went wrong, I would be doing some digging to find out. I was wide awake, watching the monitors and felt absolutely nothing when they took the 4 snips off my heart, and this was obviously what they expected me to feel - nothing. The only place I felt anything at all was in my neck where they actually inserted the catheter for the right heart cath and they quickly used local at the insertion site to remove even that feeling. I never even felt the catheter in my groin, much less my heart. No one is suggesting you are a ninny or anything else, El. <g> What I am suggesting is that something went wrong during your biopsy and you should find out what. Jon.
Jan P, March 19, 1999 - Hello everyone, I haven't posted in at least a year. I guess they call me a lurker because I read the posts every day. I can't resist responding to the depression and anxiety thread. I am an eternal optimist and have had a positive attitude through my 2 years of cardiomyopathy. I have a large family to finish rearing and and promised myself I would not spend the time I have left depressed. The past 2 months, I have experienced anxiety over I don't know what. I haven't had this experience before, but I am a psychotherapist and have worked with many people who have chemical imbalances and experience depression or anxiety. People who experience these problems should not feel guilty, weak or as though they don't have faith. Those who don't have these problems need to knock on wood, no one is beyond this struggle. Life is a challange for all of us. I appreciate the support of all of you fine people. I am especially grateful for the posts that came across the board today. Bye, Jan. email@example.com
Robin W's March 19 reply to Margie's March 17, 1999 - Hi Margie, I tried to e-mail you but the address in your post kept coming back invalid. You can e-mail me if you like. Robin W, EF 8%, age 31. firstname.lastname@example.org
Bill D's March 19 reply to Cindy's March 17, 1999 - Hi Cindy, Don't feel your alone in here! Jon welcomes all us agnostics and atheists to the support his forum gives. After all, if this is a ministry, there better be us heathens for him to convert. Otherwise, he'd just be preaching to the choir. <g> I envy the folks out there who can, despite the calamity, believe it's all in God's great plan. It must be comforting. I'm suspicious though, when it takes facing death for so many of us to suddenly decide we believe something we never believed before. email@example.com
Jon, March 19, 1999 - Hi everyone, I'll pipe up briefly about my site. This forum is a support and information resource for anyone suffering from heart failure - period. I will, of course, speak freely about my own faith, since it is the center of my life. I do not just stand up and preach, nor will I. I'm a lousy preacher. Neither do I try to separate my faith in Christ from this site. That would be silly. What I am good at is gathering and organizing information and presenting it in a readable fashion. That is in fact the "ministry" Bill speaks of, although even he probably doesn't realize it. My ministry is helping people, not converting them.
How can I help people cope with a serious life changing illness? Mainly through education, and a sense that we are none of us alone in this. Somewhere, someone has been there, done that. To be able to hear straight from them is an enormous benefit when we try to cope with that same situation - thus, the forum. So don't get frantic about how this thread will never end. They all do, sooner or later. The subject of faith will continue to come up but it isn't and will not be the "meat" of this page. I actually started out to make my whole site completely Bible oriented and Jesus turned me away from that course and steered me straight into the heart forum idea. Who am I to argue?
On another topic, I want to be sure that everyone understands I am not addressing the subject of depression and whether it is "okay" or not. I am discussing death, obsession with death, why it rarely becomes the focus of discussion around here, and why I believe focusing on life to be the key to coping with CHF and perhaps, life itself. People get depressed. Throw enough weight on anyone's shoulders and they start to sag. Been there, done that. <g>
Straight to Bill D, do you never then believe anything new? Why is it so weird to believe in God later in life but not at all strange to believe in new scientific advances, new treatments for your illness and new philosophies and social concepts? Just what is the difference and why do you perceive this to be strange? If the truth reaches up and slaps you in the face, should you deny it and walk away? If something new to your thinking presents itself, should you immediately throw it out without giving it serious consideration? If, after serious consideration, it makes excellent sense and benefits you personally, is it then proper to ignore it or throw it away, just because it is new? Please explain. I am very interested in this theory, which I never heard before yesterday, that it is wrong - or "fishy" - to change one's belief system after you become an adult. What is the cut-off age after which we should remain set in our ways, no matter what? Being sick doesn't even seem to come into the equation since so many people are saved as adults without ever suffering a serious illness. Jon.
Robin W, March 19, 1999 - Hi all, I haven't written in awhile but I've been reading. All the talk about depression, death, and faith makes me want to throw in my 2 ¢ worth. I think all of us have had days when we were depressed and thinking about death. Fortunately for most of us, these days are few and far between. Aat least, I hope that's true. I like to think we are living with CHF, not dying from CHF. As far as faith goes, sometimes it takes terrible circumstances for one to realize the extent of your faith. I do find my faith comforting when I'm feeling down. Anyway, just my thoughts. I do have a definite hospitalization date for transplant finally of April 28th. I will have a laptop, so I'll be able to communicate with everybody. Thanks Jon, for the site. I have a feeling I'll be a more frequent poster come 4/28. My thoughts and prayers are with everyone. Robin W, age 31, EF 8%. firstname.lastname@example.org
Bill D's March 19 reply to Margie's March 17, 1999 - Hi Margie, Welcome to Jon's Place. Yes, we have lots of folks whose hearts were damaged from radiation. I had a friend who had lymphoma. The last time he was treated with radiation, they told him it might damage some of his organs but there wasn't any other choice. Be sure to look under Jon's "Site Index" at the top of the page. You can find out lots of information about your CHF! Bill. email@example.com
Tony P, March 19, 1999 - Hi guys, I hope everyone is doing well. I have a question for Jon. I have just taken a treadmill test. My Vo2 was 23.7%. Jon, can you tell me what normal is please? I also wanted to know why you won't do any workout exercies that you must bend over for. I also want to wish you luck with your new drug trail. May God bless you and your family.
Jon's March 19 reply to Tony P's March 19, 1999 - Hi Tony, I flunked out of the drug trial. My EF was too high. <g> I don't bend over because I still get what is called mild postural hypotension. That means I get dizzy when I stand up fast or bend over and straighten up repeatedly. It's from the Monopril as much as from my heart problem. I called a nurse I trust at my CHF clinic and she said that off-hand, she thinks a normal Vo2max for someone in their 40s who is healthy and in reasonably good shape is in the mid-20s, but she is going to check and get back to to me with a number she is sure of, so hold off on any celebrating until I hear from her with a definite answer. <g> That will probably be Monday. 13-14% is where transplant comes into consideration and I honestly never researched normal, figuring I would never get back to it. Ooops. Jon.
Kim S' March 19 reply to Jamie S' March 18, 1999 - Hi Jamie, I can honestly say that my positive attitude did not come to me an hour after being diagnosed! I spent a week in the hospital. Most of the time I cried and thought I was dying but I spent that time in prayer also. It was when I came home and realized that my 2 little girls are just beginning their lives and need me, that I put all my worries and fears behind me. I trust the Lord with my life. He is in control. Not only did I need help at that time but the rest of my family did too, including my husband. I have my bad days like everyone else with CHF. I do what I need to do to get past that and move on. I certainly don't think that thinking of death is considered having a negative attitude. You are right about death, it is reality but I can't let that hold me back and hold me down. I believe that any of us could die at any minute, whether it be from our conditions or whether we're in a car accident. That may sound like a lame example but it's my faith that keeps me from going insane. I do not put down anyone's beliefs. I'm just saying that this works for me. LaLaKimmie@aol.com
Mark S, March 19, 1999 - Hi, Six months before being diagnosed with CHF, I had a bad wreck on my motorcycle. The day after I got my check from my insurance company, I went to my dealer and bought another one. My wife freaked out and asked me if I wasn't afraid of dying. I told her how I felt; I'm not afraid of dying as much as I am of not living. That's pretty much how I have tried to live my life. Why stop now?
Jamie S' March 19 reply to Jon's March 19, 1999 - Good morning Jon, I know no one can predict or control death but there are things that can be taken care of that can help people reduce their fear and anxiety about dying. I think when people say, "I am afraid of dying" they are afraid for their loved ones left behind. Here are some examples of what I mean by taken care of things. If you have a child(ren) that you are don't close to, who you feel don't know you or what you have been through, if it is causing you hurt and sadness now and you think it may affect them in the event of you dying, then you should make peace with yourself and them if it is possible. If you have smaller children and it makes you sad to think of them missing out on stories from when you were growing up, make a journal of your life in letters and include the present time of family going-ons. I did the above and after a few entries on tear soaked paper, I wasn't sad anymore. I was taking my fear of them not knowing me and I was making a document that would ensure they would have the next best thing to me. I was sad and depressed about some stuff, so I did things, pro-activly, and now I am not depressed. I am not wallowing. I am very much in the land of the living. Starting a support group was no big deal, it seemed like a natural progression. It took till after the holidays, but people are showing up and calling.
Frankly, I didn't lose much after the diagnosis. Of course, if you asked me that within the first 3 months, I would have said I lost everything. I lost the ability to trust my body. It felt like it betrayed me. I gained a lot of writing material for my poetry, I gained some medical knowledge, if you will. I gained the ability to take the mystery out of death by watching medical shows that included people dying. I started watching all types of surgeries, except eye surgery. I still can't deal with that but doing that also made the physical aspect of death a little less scary. I took the fear of not being able to protect my children should I die. I started supporting Missing Children Organizations and Victims of Crimes by letter writing to those "important" people in Wahington. It doesn't guarantee that my children will be safe but at least I turned my fear into a positive thing.
I gained Pam E as a wonderful support person and a friend. That alone was worth 72+ hours of v-tach pepper with an episode of v-fib, not to mention other smart, funny, bright and wonderful people here. The fact that I have helped people is wonderful. It is something I never thought I'd be able to do and my children will know that I helped others and that it is a wonderful feeling and then maybe they will help people in their lives. All weeds are flowers in my book. All the things you said are great, especially the Rottie and talking to Liz. That is what I do, except I hold our 25 pound Maine coon cat, Bruno, and give him a massage till he smiles, then I go take an allergy pill because Bruno's dander stuffs me up. I hope that it is a little clearer that I am not stuck in death. Have a nice day. I read Scattered Petals by Liz, She should try to sent it to a magazine or the newspapers. Jamie. JamieDan@prodigy.net
Jon's March 19 reply to Jamie S' March 19, 1999 - Hi Jamie, My daughter is Linz, short for Linz. Ya lost me. You said you lost yourself to this illness - a powerful statement - then you say you lost very little. You relate healing relationships to fear of impending death. You are disgusted (your word) with the media portrayal of "heroic" sufferers, yet you reacted the same way by starting a support group to help others, and shrug it off as somehow different, yet very few people go to such lengths. You remove the mystery of death by watching it on television. You associate supporting organizations financially with protecting your children. I don't understand these things. We must be on different wavelengths. I agree with some of what you say completely but I can't follow the discussion. I wish you happiness and success with your support group. :-) Jon.
Brenda H, March 19, 1999 - Hi all, Well I guess I have alot of catching up to do, since my Internet server was stuck at March 7! I think it's ok to have pity parties once in a while, as long as we have the good days too! Keep the faith! Can any of you other gals with PPCM tell me why doctors are so stuck on 6 months being the recovery time when I have heard of being able to recover up to 1½ years later? Thanks for your support. Brenda, EF 25%. firstname.lastname@example.org
Jay Q's March 19 reply to Jim H's March 18, 1999 - Hi Jim, I too am one of the lucky ones with asymptomatic CHF and low EF (12%). See my bio. Both my wife and I have been on Zestril and have mild coughs. I understand Zestril is noted for this. Despite the cough, my cardiologist prefers Zestril over Diovan because the experience with Zestril has been longer. Cheers, Jay Q. email@example.com
Lynn D, March 19, 1999 - Hi, everyone. I have a question. Yesterday my college age son was helping me clear out the huge amount of junk and toys from his room. I heard the garbage truck and hurried out with a couple of bags of papers. I was already tired but then I started to get super dizzy and almost couldn't walk. My heart beat hard until late last night. When do you call the doc? Do I call the cardiologist or internist? I was alone for the evening and got pretty scared. I am never sure how to make a decision on these events. Today I am very tired but better. Send any ideas or comments. Thanks all. EF 25%, age firstname.lastname@example.org
Brenda H, March 19, 1999 - Hi, I have to go to the dentist, which means stopping my Coumadin for 4 days. Has anyone else had to do this? I'm a little worried. I do have faith in my doctor, though. Oh and Kim, you go girl. <lol> How are you? I haven't talked to ya in a while! Brenda. email@example.com
Doug K's March 19 reply to Heather S' March 18, 1999 - Hello Heather, You asked about Luc. He is holding his own. I heard from him a day or so ago. He and I have gotten to be good friends the last couple of years. He gets bad chest pains that constantly hurt him and fatigue that really brings him down but he is quite a fellow. He hangs in there despite not having a great deal of support from the doctors in Belgium. He loves getting e-mail, and his e-mail address is firstname.lastname@example.org> I hope he also answers your post. email@example.com
Ben B, March 19, 1999 - Hi, If I was going to listen to anybody talk about dealing with depression and fear of dying, it would be someone like Robin W, who is only 31 and has had to deal with cancer, CHF, and now transplant. I don't know if I could handle all that but she always seems so cheerful. It is pretty inspirational.
El R's march 19 reply to Jon's March 19, 1999 - Oh my. Something did go very wrong then, as I had suspected. I do not think it is possible to get any info from the doctors that performed the biopsy. They closed ranks that day and were not receptive when I called that night, scared and having chest pain. It is just another reason to find a way to continue going down to Cal. I talked to one of the staff there who relayed info to my doctor who was out of town and she called me back the next morning with his answer. This is the kind of treatment I am used to. I'd be foolish to give it up. Did I tell you that the local doctor did not know what a CPX test was? Then when I explained, he dismissed the need for testing the O2 comsumption. He doesn't have the equipment so he doesn't do them. He can't personally make money from doing them. He was pretty dismissive all the way around but most of his patients are much older and have CAD. He didn't like that I was knowledgable. Am I feel lucky to have had a doctor that makes sure I understand stuff? This has been very informative for me. Thanks, El.
Jon's Note: FWIW, You have the right to a full copy of your own medical records
Bev's March 19 reply to Robert Farish's March 17, 1999 - Hi Robert, Just a word of caution about participating in clinical trials. Make sure the doctors give you all of the details of the drugs they are going to use and check them out yourself. Remember, they are trying to determine what the drugs will do and some of them can do more harm than good. If you are doing well on your regimen of drugs, personally, I'd pass! Good luck. Bev. Mtnmama008@aol.com
Jon, March 19, 1999 - Hi everyone, The faith topic in messages not yet posted has veered away from faith as it relates to illness and into spirituality alone, so they remain in my Inbox. The original subject was death, depression and anxiety - feel free to post about your beliefs as they relate to those specific subjects or to our illness in some other way. To those who want to discuss my faith in Christ with me personally, let fly. I will answer posts directed to me at my first opportunity. To those who are steering toward discussion of organized religion though, you are out of luck. I don't do organized religion because I am uneducated in that area. Honestly, I don't have the time and energy to carry 3 forums, which is what tonight's batch is turning this into. :-) Jon.
Jon, March 20, 1999 - Hi all, Luigi Tarantini wrote me that he may be able to attend tonight's chat. Keep an eye out for our Italian cardiologist friend! Jon.
Harry Weems' March 20 reply to Tom S' March 19, 1999 - Hi Tom, What a magnificant letter! firstname.lastname@example.org
Virginia P's March 20 reply to Robin W's March 19, 1999 - Hi Robin, I just wanted to ask you a couple of questions about your post. I do not understand your EF of 8% and you not being in the hospital. When mine went down to 15%, they put me in intensive care. I wasn't able to stand up, much less feel like posting on any site. The second comment I don't understand is the fact that you have a date for transplant of April 28. Do you mean to be evaluated for a transplant? Thanks for any information you can give me regarding the above. I am confused. Virginia P. email@example.com
Jon's Note: I was trimming trees with an EF of 13 <g>
Donna M's March 20 reply to Bill D's March 19, 1999 - Hi, I have been sitting here reading all this posts for almost a week now. I know at least one person in the world who believed in Jesus before the life threatening incident happened. I have actively believed since I was 5 years old. Eleven years ago, I was diagnosed with system lupus with CNS involvement. My faith helped me then, even when I felt that God had left me. Thankfully the lupus is in natural remission and I don't have too much permanent brain damage. Then I was diagnosed with CHF in January and my cardiologist hasn't told me any details (I'm looking for another) and it was tough at first but I know that my life is in the hands of God and I have realized, and held on to that more and more as the days go by.
I'm blessed to be feeling well and functioning now, but it did take some time to get here. I'm on Metoprolol XL, Lasix and Zestril, plus 1/4 aspirin, vitamins and some ibuprofen for arthritis. I learned about this site from the book, "Success with Heart Failure" by Marc A. Silver, MD, where the site is listed as a good one to find more information about CHF. I agree with Dr. Silver and really enjoy reading these posts and replies. firstname.lastname@example.org
Bill D's March 20 reply to Joyce's March 18, 1999 - Hi Joyce, You asked if you should forget about it and live life as you have always done. I know of a doctor who made that very same choice. I guess he didn't think life was worth living with all the sacrifices he'd have to make, such as a tasteless diet, no booze, no cigarettes. His family and friends were devastated because after years of counseling his patients how to live longer, he wouldn't take his own advice. He died within the same year. Over on the "Loved Ones" side of the forum, occasionally we see men and women who won't stop smoking or drinking. Those who love them are frantic. It would seem those patients are incapable of seeing the grief they are bestowing on people who love them. I don't think you're that kind of person, Joyce. I want you here bailing with the rest of us! <g> Bill. email@example.com
Bill D's March 20 reply to Joy S' March 18, 1999 - Hi Joy, Welcome to Jon's Place! His site is much larger than you think. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on Site Index at the top of this page. Start by reading The Manual. It will give you an idea of what you're in for. The more you know, the faster you'll be able to start dealing effectively with CHF. You will learn what questions to ask your doctor. He'll know he's dealing with somebody who's well informed and be more forthcoming with you. Bill. firstname.lastname@example.org
Bill D's March 20 reply to Jim H's March 18, 1999 - Hi Jim, You are one lucky son of a gun! Here the rest of us are commiserating with each other and comparing symptomatic catastrophes and you come along, telling us you never felt better! I'm beginning to feel like a hypochondriac. The last time they counted noses back in 1994, sure enough, half of us died in five years after diagnosis. Since then, they have increased the dose of our Ace inhibitor and added Coreg to our arsenal of meds. We believe the next time they count they'll find the average bear with CHF is living 10-15 years. Thanks for jumping right in with a good suggestion! Bill. email@example.com
Margie F, March 20, 1999 - Hi, Sometimes I think my friends must think I'm a hypocondriac. I'm forever going to doctors. Well, since last month, I've been having pain in my shoulder. I did something to it in my sleep. I was hoping it would get better by itself but the pain was getting so bad I made an appointment with an orthopedic doctor. It turns out I damaged my rotator cuff in my shoulder. The doctor is first going to try medicine for inflammation and I will have to have my coumadin levels checked now. If that doesn't work, then surgery. My husband thinks I'm an accident waiting to happen. I'm running out of body parts to ruin. <G> The doctor took an x-ray of the shoulder, my AICD is huge with so many wires running everywhere. He said I look like a car engine was in there! Also Jon, I started cardiac rehab last week. I tried it twice and was so exhausted I could hardly sit up. Do you know if a person with an EF of 20 can get over that wiped out feeling with exercise? Or is it something you have to tolerate to make your heart stronger? I've done everything the doctors have asked me to do but I'm not sure if I can do this. Take care. Margie F, EF 20, HCM, CHF, AICD, age 52. MFisher238@aol.com
Jon's March 20 reply to Margie F's March 20, 1999 - Hi Margie, I am also having problems recovering from the exercise program my doc just put me on. It's a very individual thing, I think. I am giving it about 8 weeks to start boosting my energy rather then lowering it. If I am still dragging just as badly then, I will call my doc. We need to give exercise time to tone our weak bodies but we also have to be aware that we may be over-doing it and that cutting back (but still exercising) may be needed. Play it by ear and don't run yourself into total exhaustion before talking to your doctor. It's that initial period that is so very hard. Jon.
Lori Wilson, March 20, 1999 - Hi, I'm hoping to find out more regarding personal experiences with mitral valve replacement surgery. I understand the procedure but I want to know how others have done with it in recovery, etc. Do you feel a big difference afterward? How long did it take before you were able to get around, etc? I'm having my surgery early next week. I am told that it is a very common and one of the easier open-heart surgeries, but I'm still extremely nervous. Thanks a bunch. Lori, age 24.
Jon, March 20, 1999 - Hi everyone, FormMailer's server has gone down again, so my forms are broken. I'll switch to the backup tomorrow if it is still down then. Until then, I'll read a bit - a luxury! <g> Jon.
Jon, March 22, 1999 - Hi everyone, I confess; I just let the forms stay down until the server staff got them fixed. I went to the library with my family, checked out some books and thoroughly enjoyed some reading. I have contacted my forms server to see if they foresee any future weekend-long problems, since this is the second out of three weekends they have gone down. If they do, I will look for another server.
Due to the new exercise program I am on and my compliance with my doctor's wishes that I try to be more active, I am totally exhausted. I need to take a look at my current priorities and be sure I am spending my energy in the right places and ways. I am taking a week off after posting today's posts and will try to be back Tuesday, March 30, 1999. Otherwise, I am gonna give out completely, which won't help anybody. The faster walking pace has been especially hard on me. Hopefully, the next week will see me start to gain some muscle tone, which will reduce my fatigue. At least, that's the plan. <g>
I encourage everyone to use the site search engine located at my Site Index page, The Archives page and the Medspeak page. It searches the whole site, and works very well for a free search engine. When it takes you to a particular Archived page of the forum, you can use the descriptive headers at the top of the page to see which message(s) might apply. It works for me. Jon.
Madelyn J, March 22, 1999 - Hi everyone, I appreciate all the recent posts on personal thoughts of death and depression. I believe the fears we bear from all the uncertainties of our conditions need to be laid out in detail and attacked with our collective strength, like daylight hitting a vampire! On the depression topic, I feel my deepest sadness over leaving my kids early cannot be dismissed or solved by time (yet), or by working on leaving a legacy. It is the thought of not being there for the simplest daily interactions that gets to me. No written message, video or other person can be "me" talking, listening and touching them as I would. That gets down to my basic value as a human being, and I feel I have the right to be lost in the sadness now and then, without being deemed unappreciative for the gift of life.
On the 6-month recovery window, I have no idea why that statistic has been so popularly quoted. I myself saw a doctor who was an OB and cardiologist at Northwestern, who said her patients took up to 18 months to recover. She mentioned hormonal readjustment, workload and general health factors that can be different for every patient during the first year postpartum, as possible influences on recovery rate. I've heard that the some PPCM patients who fully recover within six months are those who needed little help from modern medicines. In the old days, they would have had nothing but bedrest and still recovered. How can a 6 month window be applied to any cardiomyopathy patient? There is so much medication to try, and your recovery may take a jump forward, as mine did, if you find the most helpful ones after the 6 months. I think the 6-month statistic has become over-simplified from overuse. Madelyn J, age 39, PPCM/CHF, EF 45%.
Jon's March 22 reply to Madelyn J's March 22, 1999 - Hi Madelyn, The 6 month window is valid for idiopathic dilated cardiomyopathy patients in particular. Doctors have probably transposed it onto PPCM patients but whether that is valid or not, I have absolutely no idea. There is a definite lack of detailed information on peri-partum cardiomyopathy on the web. For IDCM, the 6 month window is used for possible complete or very-near-complete recovery of heart function and functional heart class, meaning that if you are going to get back to "normal," it will probably happen within 6 months. I agree with you about many people gaining a lot of heart function back over a long period of time. It took me 4 1/2 years to go from a 13% to a 45% EF, but my functional class only went from a 3 to 4 to a 2 to 3 in that period. You may be right that those patients would recover regardless. I just don't know. :-). Jon.
Pete E's March 22 reply to Lynn D's March 20, 1999 - Hi, Call the doctor or go to the emergency room. We could be talking about your life. Peiden@skypoint.com
Pete E's March 22 reply to Tony P's March 19, 1999 - Hi Tony, A normal Vo2 for a man of my age and weight is in the high 30s. Mine is 20.9. The normal varies by your age and weight, based on a chart of averages. There are a lot of variences in what healthy people have for Vo2 measurments. I am in better shape now than I was 10-12 years ago when all I did is sit, drink, and eat. My docs think that some people can improve their Vo2 even when suffering from heart problems by walking or biking. Of course, you need to talk to your own doctor about that. Pete E. Peiden@skypoint.com
Pete E's March 22 reply to Jim H's March 18, 1999 - Hi Jim, There are a couple of things to keep in mind about the survival statistics. First, they include all patients, young and old. Many older people may have other health problems that complicate their CHF and reduce their longevity. The other thing is that the new advances in treatments are not always reflected in the statistics for a number of years. With all of the advances in treatments for CHF and it's underlyng causes the last few years, these statistics will most likely change. As you read on these pages a balance must be stuck between feelings of life and inpending death. I just would not sell all of your stuff at 4.9 years into your illness. To add to your statistics, 80% die in 6 years. I hope you are in the 20% that recover and never are bogged down with the symptoms most people have. For me, they come and go year by year. If you would like to read about my last 4 year trip, you can see in the Pete's Story section at http://www.healthyheartmarket.com/. Pete.
Ginger, March 22, 1999 - Hi, Has anyone ever heard of olive leaf extract? It is supposed to be good for heart. Hugs, Ginger. firstname.lastname@example.org
Jon's Note: See this post (let it load) and this section of the Links page.
Joy S' March 22 reply to Bill D's March 20, 1999 - Hi, how right you are, Bill. ;-) I have a list of questions to ask my doctor now that I've found this site. When I was in the hospital, I couldn't think of anything to ask because I didn't know anything about heart failure. I am a little surprised at how much energy I have. I've redone the kitchen floor this past week. I've just got back from the mall where I did both levels with no problem. Except for the extra heart beats I've had this week, I haven't felt this good in a long time. I don't know if I should take it easy or keep going at this pace. I am thankful to God that my primary care physician referred me immediately to a cardiologist. Lots of times, women are told there's nothing wrong with them or they're going through "the change." Oh yeah, I'm 39 not 38 (I forgot how old I am). I have every intention of raising all my girls to adulthood and spending time with my yet to be born grandchildren. I'm speaking healing into my life. God bless you all.
Jamie S' March 22 reply to Jon's March 19, 1999 - Hi, Hi, Sorry I misspelled your daughter's name. It is not the "heroic" survivor that bothers me in the least. It just seems one never hears the beginning of the story. The shock, sadness, anger and the plethora of feelings that people go through when diagnosed with an illness. Whether it is the interpreter who decides that people don't need to hear that part or it is the survivor's decision, they are doing a disservice to the people they are trying to reach out to. Newly diagnosed people want to hear that it is okay to feel any and all of those feelings as well as how to start coming out of them. That is what happened to me. I wasn't supposed to feel anything, just get over it. I think that is why I was more depressed then maybe I would have been had someone said they felt like jello for a month or two and it was ok. I was lost in my illness for about 3 months. I found it hard to be happy. Recovery seemed unlikely and I was depressed. I was lost in me and my feelings. I am not lost anymore and when I look back, hey, it was only 3 months.
I am not financially supporting anyone, except maybe my journals and reviews of poetry by purchasing them. I write letters to congress, local and state politicians to make or change laws so that children are protected and perpetrators are punished. I write to parole boards to say that I oppose the release of dangerous predators.
You are so right, we are on different wavelengths. You have gone outside of yourself by creating this informative site. I went outside of myself and created a support group that felt good so I decided to take that great feeling of helping and direct it towards other causes that mean a lot to me. It helps me feel less out of control. You have made some assumptions, so let me make some. You seem to think since I have identified what scares me and am pro-actively doing something, therefore I must still be scared. I am not. If I was doing nothing, then I'd most likely be scared. JamieDan@prodigy.net
Jon's March 22 reply to Jamie S' March 22, 1999 - Hi Jamie, Difficulty in adjusting right after diagnosis has been discussed here, from many angles. For some people, self-educating and discovering they are not alone is what starts the coping process. A renewal of faith in Christ does it for others. The realization that you have to play the hand you've been dealt does it for others, and so on. It can happen instantly or in a year. Not everyone gets depressed. In the past 3 years, I have been amazed at the wide range of reactions to CHF at all its stages.
Support groups deal with different groups of people, who have certain things in common, like an illness. There are other factors at play, different from group to group. That's the beauty of having different groups - you can find one that works for you. For instance, besides heart failure, everyone here has an Internet connection and the time to use it for message board participation. That affects how they view support groups in general and much more. Lots of things affect where each subset of CHFers will gather, something my cardiologist was quick to point out to me when I mentioned a "trend." What works in one place may not work in another, or it may work, but no better. Do all newly diagnosed people need to hear one thing or be treated one way? Doubtful. Please don't assume that because I do things differently from you, that my methods do a "disservice" to people I reach out to. My approach to coping with illness will certainly not be for everyone, but that doesn't mean it isn't precisely what a lot of people respond to.
I am having a hard time sorting out issues here (my lone brain cell is tired) but it seems you think that I do not allow posts on death and depression. Your posts went up. Why would I do that but not put up others? Please consider that I might just be posting what comes in. When subjects you think are pertinent don't show up, it may be because no one has recently posted about them. Free speech forums? One word - Usenet. Spend a week there and you'll know why I edit posts here. <g> I do refuse posts pushing suicide as a panacea. I have noticed that people often assume I refused a post I never received. The web is not foolproof yet, especially when you run a site on the cheap.
I almost always combine financial support with letter writing support, so I transposed my own habits on you there. Oops! (I don't write a lot of letters)
Did someone really tell you to "just get over it" when you were depressed? Did someone really tell you to "not feel anything?" That would have upset me, too. :-( When I am upset, I usually read things into what people say to me. People read things into my messages that I didn't put there. I have read things into messages people sent me that they never put there. Is it possible you misinterpreted an attempt to cheer you up or "move you on" as a command not to be depressed? I am just observing that miscommunications are far from uncommon, especially when we are not at our best. It happens much easier in text than in verbal communication. Once I perceive something to have been said in a certain fashion, it takes a crowbar and 3 men to pry me away my precious but incorrect idea. <g>
I know that a feeling of losing control over life can be very real. I tell believers to give control of their lives to Christ. I tell unbelievers to take control, and I e-mail them a list of steps that will help them do so (regarding CHF). A struggle to get Disability often makes this an even bigger issue - it was a much bigger struggle for me than coping with my illness. I have been on both sides of the fence so I understand both "faith in Christ" and "no faith in Christ" dealing-with-life-after-CHF-perspectives to at least some extent. I hope your activities help you cope. If you don't mind, you should also post the location of your support group, so people here who may live in that area can contact you. Jon.
Luc D, March 22, 1999 - Dear friends, I just want to say hello to all my friends here! I have seen that some of you are better and other people are feeling worse. I hope all may work out good. Oh yes, about me now, it's all the same here. I still have these chest pains. Sometimes they go away for one or two hours but that is about all. The rest of the days, I have chest pains but what can I do about it? I don't know. Heather, I am here if you want to talk, ok? We have to keep this site going for us and other heart patients. All the best from your Belgian friend, Luc. luc.Deseins@ping.be
Janet, March 22, 1999 - Hi all, Margie, I also have chemo-induced cardiomyopathy. I have tried to e-mail you a few times but they keep coming back to me. Please write to me directly if you see this. Janet, EF 25%. email@example.com
Cindy M's March 22 reply to Tom S' March 18, 1999 - Dear Tom, I would have sent this to you days ago privately, but the e-mail address that you have listed in your bio doesn't work. I wanted to thank you for the heartwarming and funny story you told of how your children reacted when you told them you were dying. I shared the story with my husband and we both had a good laugh. By the way, the depression seems to have lifted. I still have the fatigue, which I attribute to the titrating up of Coreg. Best to you and your loved ones. Cindy M. firstname.lastname@example.org
Robin W's March 22 reply to Ben B's March 19, 1999 - Hi Ben, Thanks, you really made my day with your post. I'm sure you've also been through a lot with CHF and there are many people on this forum who have it much worse than I. Whenever someone says to one of us, "I don't know how you do it," they don't realize there really is not always that much thought that goes into what we do and how we react. The reality is, "You do what you have to do." Robin W, age 31, EF 8%. email@example.com
Gwendolyn White, March 31, 1999 - Hi, I am scared to death. Does anyone have serious digestive problems? If so what can I do? What did you to solve the problems? Could it be nerves? JOIE6800@aol.com
Steve S, March 31, 1999 - Hi everyone, I had a cardioversion (my heart zapped) done on the 25th and that was interesting. It was successful and still is. From the marks it left, it looks like my wife chased me around with a hot iron. I also asked my doctor to change my medication from Captopril to something else because of the cough. He changed it to Atacand and the cough was gone the next day. What a difference! He was hesitant but I argued (this web site being the reason I knew about it) and it worked. I go back April 16th for an echocardiogram and an EKG to see if I improved. I feel better but my legs get tired, especially my left one. We'll see how it goes. God bless you all. Stdimhcs@aol.com
Brenda H, March 31, 1999 - Hi, I finally started Coreg. My mind is saying yippee and my body oh no! <lol> We'll see how it goes. I was trying to find a site that listed the side effects, but haven't found any. He started me at half the 3.125mg dose twice a day. I heard you all say that it gets worse before better, thoough. I haven't really felt anything yet, so this is good. My cardioliogist did another EKG and saw that I have PCVs, a skipped beat and 2 double beats. Everyone that has this raise your hand (just kidding). Thank you all for your support. Brenda H, age 31, EF 25%. Hansonfoxi@aol.com
Andrew G, March 31, 1999 - Hi I just want to thank everyone for their prayers for my friend Mike. He is feeling better and beginning to adjust to life with CHF. He still has times when he can not believe it, because he feels fine. His doctors have him in cardiac rehab and walking every day. I gave him the info on Coreg, but his doctors said it is too soon to start on it. He is worried because his doctors are not very positive. They quote him the standards statistics that I am sure we have all heard, and tell him they cannot say why some get better, some worse, and the rest stay the same. On the down side, his medical insurance is owned by one of the large hospital chains in Pittsburgh, so he is tied to that network, and they do transplants. They seem to be preparing him to mentally accept the fact that he, most likely will need a transplant someday. I love positive thinking.
With the weather improving, we are planning to get in some walks and compare notes. He told me the other day, that after listening to my story, it was like he was looking in a mirror. I hope to get him online with this group sometime soon. I will update you as things progress. Again, thanks for all the prayers. firstname.lastname@example.org
Sara ?, March 31, 1999 - Hi everyone, What a wonderful site. I don't understand the dying part. My doctors haven't made me feel that I have a fatal illness. I have had cardiomyopathy with irregular heart beats, had cardiac arrest, mild congestive heart failure and ejection fraction in the 40s. This was in the past 30 years. Now I am in heart failure, with an enlarged heart and ejection fraction of 25%. They will not give me a prognosis and put me on Lasix, Zestril and Cordarone. I am zapped of energy, more now than in the past 30 years. I was told that if the meds take hold and control the fluids that I could go like this for years, yet they never say it will get better. Every time I ask if my heart will get stronger, it's, "Maybe a little bit." This is all new to me, especially after reading all your messages from all the wonderful people suffering with this disease, that it is fatal what I mean is fatal in such a short time (5-6 years). email@example.com
Linda M, March 31, 1999 - Hi, I haven't written in a while but wanted to update all the wonderful people I've met since first writing back in September of 1998. I was first diagnosed in August of 1998 with DCM and an EF of 19%. By October, that was 42%. Well, the 6 month window of opportunity certainly seemed to hold true for me. In March, my EF was in the high 50s and my heart class had gone from 3-4 to 1. My heart reduced in size from 6.4cm to 5.1cm. I'm feeling wonderful! Life has certainly taken on new meaning and appreciation. I exercise and walk daily. some days more then others. I credit God, Coreg and my doctors. My cardiologist told me that with all the new meds, many more of us will find our quality of life improve and that life expectancy will continue to increase. Good luck and God bless all of you. Linda. LMcAuliffe@aol.com
Lynn D's March 31 reply to John Constant's March 22, 1999 - Hi, Thanks for answering my March 19 question about when to call the doc. My e-mail reply to you came back. Why don't you load your garbage into the trunk of the car and drive to the end of your driveway? Save yourself all the exertion. I don't chase garbage trucks anymore! firstname.lastname@example.org
Audrey, March 31, 1999 - Hi, I have been reading all of your posts and they have been very inspirational for me. I have had 2 surgeries for mitral stenosis, 5 cardiac caths, gallbladder surgery, asthma, COPD, and umpteen other tests. Here I am, still hanging in and glad to be. Also, I have a-fib which refused to be converted either medically or cardioverted. I am now taking Lopressor to slow my heart rate, and my doctor wants to start me on cardiac rehab, so I will give that a try. I also take Lanoxin, furosemide, Coumadin, K-Dur, hydrochlorothiazide, Midamor, Allegra and Cardiazem. I would enjoy hearing from anyone interested in discussing exercise, medications, etc. email@example.com
Kim ?, March 31, 1999 - Hi, After going to bed tonight, I realized I wouldn't be able to sleep, again. Last night, I tossed and turned 4 hours before finally dozing off. I seem to be spending a lot of time feeling lousy (and sorry for myself I guess, too). In January, I was diagnosed with pneumonia. A chest x-ray showed an enlarged heart. After a month of being on inhalers, antibiotics and prednisone, I still had shortness of breath (that I had been complaining about for well over 2 years). I had another chest x-ray, an EKG and an Echo, and was diagnosed with CHF. My cardiologist put me on Prinivil, furosemide, Lanoxin, & Potassium. I have felt miserable since the day after Christmas. I'm tired all the time, fight nausea, suffer with horrendous heartburn, etc. On the bright side, my shortness of breath is much improved and I can actually walk around a little without feeling like I'm gonna die. I have been so very worried about so many things and have felt kind of "alone." Finding this site and reading through some of the posts here has helped me so much tonight. When I was young, I watched my stepfather (who I loved with all my heart) suffer from a heart attack and die before my eyes. I worry about going through what he did. It scares me. I haven't felt able to really discuss anything with anyone because I don't want to worry my family. I don't want to whine about it. There's so much I need to learn! Again, thank you.
Sara S, March 31, 1999 - Hi everyone, I hope this morning finds everyone doing well. Has anyone heard how Lorie did with her valve replacement? Also, is anyone from Maryland, around Rock, Silver Springs area? Can you recommend a heart failure doctor? I will be changing from the doctor I have been seeing. Thanks for any info. I wish all of you the best. Keep focused on today. Sara S.
Robert Farish, March 31, 1999 - Hello everyone, I want to thank everyone who e-mailed me with their sharing of thoughts, encouragement, suggestions and questions. I also wanted to mention that I e-mailed Robin recently and told her that her bravery gave us all the strength to endure and carry on. Again Robin, thank you for that. I went to Chapel Hill UNC School of Medicine to see Dr Kirk Adams. I expected to start a 12 week study program to try some new drugs they are working on. After checking me, I was very pleasantly surprised to first learn that I was doing a little better, and that they didn't have a study program that fit my criteria. I'm now on 6 months in between visits unless my condition changes and I expect that sometime in the future, I may go into one of their studies.
Nonetheless, I'm walking a mile every day and I am going to start riding a bicycle. I sleep at night with no wheezing with one pillow now and no fluid buildup. I'm taking all of the medicines that I reported on March 17 and am also taking loads of vitamins. I am feeling a little better about myself for now. The one thing that still puts congestion in my chest is stress so I'm trying my best to stay away or keep it in check if I can. Good luck and best wishes to Robin. We are thinking about you and are looking forward to your messages from your laptop from the hospital. firstname.lastname@example.org
Jon's March 31 reply to Tony P's March 19, 1999 - Hi Tony, I apologise for my delay in getting back to you. The pulmonology department at my Clinic tells me that a healthy man in his 40s will have a "normal" Vo2max of anywhere from 25-35%, depending on his fitness level. The more sedentary you are, the lower it will be, even if you are healthy. The more fit you are, the higher your Vo2max should be, with a marathon runner being around 60. Jon.
Milo, March 31, 1999 - Hi, This is mainly for diabetics. We are living in a wonderful age. Before insulin, the cure for diabetes was starve or eat yourself to death. Someone got the idea that diabetics had an evil spirit in them. The patient was beaten badly in the hopes that the body was so uncomfortable that the evil spirit would come out. Then the art of bloodletting started. If the diabetic was bled enough, the evil spirit would come out with the blood. This is all true of early medical practice, and all true for the diabetics of long ago. Now, I ask you, are we not very lucky to be born in this age?
Brain: an apparatus with which we think, we think. Now comes the time to cheer some people up again, maybe. I know that some of you are down today, some downright depressed, so here goes:
John Fetterman, rector of Grace Episcopal Church, told of an elderly women who died. Having never married, she requested no male pallbearers. In her handwritten instructions for her memorial service she wrote, "They wouldn't take me out while I was alive; I don't want them to take me out when I'm dead."
When my great niece was 5, she asked her grandmother, "Grandma, are you rotten on the inside?" "No sweetheart, why?" Grandma answered with some surprise. "Because when apples are all wrinkled on the outside, they are rotten on the inside."
Just one more if you can stand it: A group of senior citizens were lounging on the patio of their retirement community. One looked up as a large flock of birds flew overhead. He nudged a companion who had dozed off. "Frank, you'd better move around a little bit. It looks like those buzzards are closing in on us."
That's all. Now, if you didn't at least smile a little bit at those, I have failed and am depressed. Milo. via email@example.com
Milo, March 31, 1999 - Hi, From ADA book "Diabetes" by Dorothea F. Sims, page 66:
In diabetes of long standing, the large blood vessesl that serves the heart, the legs and the feet may become clogged with blood fats so that the vessel walls become weak and scarred. When these blood vessels are damaged, the heart must work harder to pump the blood. Blood pressure rises, the heart is stressed, and circulation is less effective in bringing nutrients to all part of the body and removing waste products. If the capillaries are also damaged, they can contribute to the damage to the large blood vessels. They bridge the gap between the big arteries carrying blood to the various part of the body and the big veins that carry the blood back to the heart. Coronary artery disease is a result of the heart's arteries themselves being damaged.
The feet and legs are particularly at risk because they are farthest from the heart's action. When circulation of the blood is inefficient, injuries and infections may not heal, normal tissues break down, and amputations may become necessary. Peripheral vascular disease is the name of this complication of diabetes. When it is combined with neuropathy, or damage to the nerves that send messages about pain and discomfort resulting from injury or infection, the risks increase.
People with diabetes have a greater incidence of coronary artery disease. This is somewhat like "which came first, the chicken or the egg?" There probably are exceptions to what the books say but the bottom line is that diabetes and CHF do not get along and present problems considering mortality. If you have both illnesses, your life will be shorter than if you had only one of them. The length of our lives depends on how we manage our diabetes - weight, testing, exercise and diet. Milo. via firstname.lastname@example.org
Jeremy Pearson, March 31, 1999 - Hello, My fiancée, Lori Wilson, is a regular reader of everyone's posts at this forum. She has told me many times how useful she has found the site to be, and how it helps to have other people to talk to with the same
problems. Anyway, I just wanted to let everyone know that she is having her mitral valve replacement surgery Thursday, April 1st, and will hopefully only be in the hospital a few days. She is extremely nervous.
Please keep her in your thoughts. I'm writing from her e-mail account at email@example.com. Thank you, Jeremy Pearson.
PS. Our wedding is still going as planned for April 17th!
Joy R's March 31 reply to Gwendolyn's March 31, 1999 - Hi Gwendolyn, I have all kinds of digestive problems supposely from poor perfusion and malnutrition, have gastric paresis and colonic inertia. I never had a problem until cardiomyopathy. My doc thinks a virus got into my heart and intestines. What kinds of problems are you having? You may e-mail me if you want. Bye, Joy R. firstname.lastname@example.org
Candy's March 31 reply to Gwendolyn's March 31, 1999 - Hi, I have digestive problems because of some medications I take. I also have the personality type to get ulcers. Check if any of your medication have digestive problems as a side effect. I don't what do about a nervous stomache. GrPota@aol.com
Ginger's March 31 reply to Gwendolyn's March 31, 1999 - Hi Gwen, I had digestive problems for a year. That is sort of what started my finding out about my cardiomyopathy. The pain went up into my chest from it. I am on Prilosec and it does help. I was also on Librax. Talk to your doctor.
Brenda, I have those little skipped beats that are PVC's and am sure a lot of people here do, too. They are annoying, I know. Hugs, Ginger. email@example.com
Pat L's March 31 reply to Tony P's March 31, 1999 - Hi Tony, I asked questions about Vo2max numbers at the Cleveland Clinic's Medhelp International site a while back and they gave me a lot of figures based on age and gender. For example: for a male aged 30-39, a low Vo2max would be anything below 26.25, fair would be 26.25 to 35, average would be 35 to 43.75, good 43.75 to 56, and high 56+. On my first Vo2max test in January of 1997, I scored a mindboggling 5.9, which isn't even on the chart! If you want a breakdown for a different age group, just drop me an e-mail and I'll get it back to you by return mail. Pat. firstname.lastname@example.org
Roger H's March 31 reply to Brenda H's March 31, 1999 - Hi Brenda, I never had any problems with increasing Coreg. I am now at 25mg twice a day. When I reached 12.5mg twice a day, my blood pressure went up instead of down. That made the doc think. Also, my heart rate went up but after another week, it came down and they put me up to 25mg twice a week. Sometimes my heartrate is still high and other times it goes down. I still feel the fatigue a lot but other than that, I had no serious side effects. So don't worry and just go for it but get checked weekly by your doc. Good luck. email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.