The paperwork never ends The Archives
April 1-15, 2000 Archive Index CHFpatients.com

Aubrey 4-1     thanks & some questions
 
Bev K 4-2     update, can't lie down flat to sleep
 
Pat L's 4-2 reply to Billie Jo's 3-31     taking potassium on empty stomach
 
Ginger 4-3     update on Joy R
 
Carol W 4-3     exercise questions
 
Jon's 4-3 reply to Carol W's 4-3     exercise, family & attitudes
 
Terry 4-3     what if I just stop taking this stuff?
 
Jon's 4-3 reply to Terry's 4-3     well,...
 
Phyllis A 4-3     just saying hi
 
Gus R's 4-3 reply to Bev K's 4-2     coping with CHF, meds, sleeping & more
 
Helen O's 4-3 reply to Elaine's 3-29     qualifying for Social Security benefits
 
Roz W's 4-3 reply to Bev K's 4-2     trying to get to sleep
 
Cecil 4-3     night time leg cramps
 
Rieale 4-3     SSD is sticking it to me, seek advice
 
Jon's 4-3 reply to Rieale's 4-3     do you have an SSD attorney?
 
Rick M's 4-3 reply to Cecil's 4-3     my latest nutritional scoop (finding)
 
Henry T's 4-3 reply to Terry's 4-3     stopping beta-blockers, fantasies & more
 
Jon's 4-3 reply to Henry T's 4-3     thanks for the reminder!
 
Bev K's 4-3 reply to Roz W's 4-3     recliners & hubbies, foam wedge questions
 
Joe S' 4-4 reply to Carol W's 4-3     changing our ways & to Rieale
 
Pat L's 4-4 reply to Terry's 4-3     stopping meds experience, beta-blockers questions
 
Jon's 4-4 reply to Pat L's 4-4     beta-blocker comparisons
 
Rieale's 4-4 reply to Jon's 4-3     SSD lawyers & lawsuits
 
Jon's 4-4 reply to Rieale's 4-4     SSD lawyers & lawsuits
 
Rick M's 4-4 reply to Bev K's 4-3     foam wedge shopping
 
Carol S 4-4     glad to find you, scared
 
Heidi J 4-4     how do I move on?
 
Jurgen 4-4     seek CHF doc in Vancouver area
 
Carol W's 4-4 reply to Jon's 4-4     that's not an answer, exercise question again
 
Jon's 4-4 reply to Carol W's 4-4     oh well
 
Bev K's 4-4 reply to Rick M's 4-4     good advice about foam wedges for sleeping
 
Karen K's 4-4 reply to Heidi J's 4-4     coping with the first shock & more
 
Phyllis A's 4-4 reply to Heidi J's 4-4     coping & Jon - why do I feel so good?
 
Jon's 4-4 reply to Phyllis A's 4-4     enjoy
 
Joe S 4-5     salty foods
 
Joe S' 4-5 reply to Carol W's 4-4     exercise
 
Jennie O's 4-5 reply to Cecil's 4-4     night time banana munching
 
Jean C's 4-5 reply to Carol W's 4-4     budgeting energy & more
 
Phyllis A 4-5     right CHF doctor helps & more
 
Ginger's 4-5 reply to Carol W's 4-4     exercise
 
Brenda George 4-5     heart info from newspaper
 
Jon's 4-5 reply to Brenda George's 4-5     good info, more about it
 
Ruthie A 4-5     coping with CHF & life
 
Elaine's 4-5 reply to Rieale's 4-4     chest x-rays, moving on with life
 
Jon 4-5     those unnecessary tests
 
Billie Jo's 4-5 repy to Carol's 4-4     exercise & part-time work/SSD questions
 
Jon's 4-5 reply to Billie Jo's 4-5     exercise & more
 
Jamie S 4-5     Url on CHF & depression
 
Billie Jo's 4-5 reply to Jon's 4-5     exercise & a question
 
Rick M 4-5     pooters, doctors, exercise & more
 
Dee L 4-5     heart class question
 
Jon's 4-5 reply to Dee L's 4-5     heart class & EF
 
Renee M's 4-6 reply to Heidi J's 4-4     your old self & finding your self now
 
Renee M's 4-6 reply to Carol W's 4-4     adjusting to new circumstances
 
Sally's 4-6 reply to Billie Jo's 4-5     the health rider is great!
 
Renee M's 4-6 reply to Rieale's 4-4     SSD attorneys & misdiagnoses
 
Renee M's 4-6 reply to Terry's 4-4     the pill-taking grind
 
Randy B 4-6     heart transplant recipient intro
 
Joy S 4-6     questions about visits to the dentist
 
Jon's 4-6 reply to Joy S' 4-6     visits to the dentist
 
Barbara P J 4-6     questions about SSD "physical" & tests
 
Jennie O 4-6     questions about heat & humidity
 
Jana B's 4-7 reply to Joy S' 4-6     dental work & painkillers
 
Tammy 4-7     two cardiologists disagree, what to do?
 
Pam E 4-7     seek persantine stress test experiences
 
Sandy W 4-7     intro, questions on travel, diuretic, diet & more
 
Thelma C's 4-7 reply to Sandy W's 4-7     greetings, travel, diet & more
 
Bill D's 4-7 reply to Pam E's 4-7     persantine stress didn't bother me any
 
Jeanette's 4-7 reply to Joy S' 4-6     visits to the dentist
 
Joe S' 4-8 reply to Sandy W's 4-7     traveling
 
Marty's 4-8 reply to Jeanette's 4-7     teeth cleaning & antibiotics
 
Linda G's 4-8 reply to Joy S' 4-6     dental work & CHF
 
Billie Jo's 4-8 reply to Sandy W's 4-7     SSD, sodium restriction & more
 
Brenda G's 4-9 reply to Joy S' 4-6     dental work & antibiotics
 
Renee M's 4-9 reply to Barbara P J's 4-6     SSD physicals
 
Barbara ? 4-9     how do you handle this?
 
Madelyn J 4-9     symptoms & meds questions
 
Linda O's 4-9 reply to Sandy W's 4-7     traveling tips
 
Joy S 4-9     thanks for the tips
 
Jamie S' 4-10 reply to Barbara's 4-9     coping with doctors & family
 
Gus R's 4-10 reply to Madelyn J's 4-9     Toprol XL side effects
 
Jack 4-10     drug related Url
 
Billie Jo's 4-10 reply to Barbara's 4-9     dealing with the ignorance of others
 
Jeanette's 4-10 reply to Sandy W's 4-7     obtaining SSD & more
 
Jeanette's 4-10 reply to Marty's 4-6     dental work & antibiotics
 
Jon 4-10     don't forget the caregivers!
 
Jerry V 4-10     Toprol XL experience
 
Bev K's 4-11 reply to Gus R's 4-10     Toprol XL experience
 
Ginger 4-11     why to keep on truckin' & prayer request
 
Suzy B 4-11     how do others cope?
 
Jana B 4-11     site says not to take these together?
 
Jon's 4-11 reply to Jana B's 4-11     web sites & CHF guidelines
 
Tim B 4-11     prayer request, poetry & more
 
Barbara S' 4-11 reply to Tim B's 4-11     family, research & more
 
Rieale's 4-12 reply to Jana B's 4-11     using that Rx site & more
 
Billie Jo 4-12     SSD questions & hugely depressed
 
Pam P's 4-12 reply to Tim B's 4-11     I really enjoyed your poems
 
Ginger's 4-12 reply to Tim B's 4-11     coping, poetry & more
 
Jan 4-12     Url to check out, death & coping
 
Jon's 4-12 reply to Jan's 4-12     don't forget the families here!
 
Pat L's 4-12 reply to Jana B's 4-11     having digoxin (dig) levels checked
 
Pam E 4-12     persantine test experience not good
 
Tim B's 4-12 reply to Barbara's 4-11     medical options
 
Jon's 4-12 reply to Billie Jo's 4-12     SSD & pulling out of that nosedive
 
James' 4-12 reply to Suzy B's 4-11     dealing with doctors, illness & more
 
Jack 4-13     drug interaction site
 
Rick M's 4-13 reply to Rieale's 4-12     Accupril & Coreg together
 
Suzy B's 4-13 reply to James' 4-12     thx, EF update, meds & more
 
Kim's 4-13 reply to Jon's 4-12     EF, disability questions & concerns
 
Jon's 4-13 reply to Kim's 4-13     EF & Disability, work, tests & more
 
Kim's 4-13 reply to Sandy W's 4-7     traveling tips
 
Randy B's 4-13 reply to Tim's 4-12     and to James
 
Jan's 4-13 reply to Jon's 4-12     thanks
 
Ruth 4-13     can you recover from CHF?
 
Jon's 4-13 reply to Ruth's 4-13     recovering from CHF
 
Kim 4-13     what vitamins to take? & more
 
Cherita A 4-13     28 years old with CHF, have many questions & fears
 
Suzy B's 4-13 reply to Barbara's 4-9     dealing with doctors
 
Carol W's 4-14 reply to Jon's 4-12     thanks for the message
 
James D 4-14     Vo2max test questions
 
Royston 4-14     getting taller on Zocor - anyone else?
 
Rieale 4-14     medic alert bracelet questions
 
Jon's 4-14 reply to Rieale's 4-14     one version
 
Rieale's 4-14 reply to Cherita A's 4-13     coping with CHF, teaching, life & more
 
Pat D 4-14     my surgery went well! update
 
Christie M's 4-14 reply to Rieale's 4-14     Medic Alert site & info
 
Phyllis A 4-14     prayer request for my dad & to Pat
 
Eris 4-14     meds scheduling & more - questions
 
Judy Z' 4-15 reply to Tim B's 4-12     coping, growth, family & illness, & more
 
Pat L's 4-15 reply to Eris' 4-14     Coreg & digoxin, and digoxin blood level
 
Jill S' 4-15 reply to Jon's 4-14     digoxin isn't always used for CHF
 
Jon's 4-15 reply to Jill S' 4-15     I wonder why
 
Tim B 4-15     have a new e-mail address
 
Sarah F 4-15     lost a friend yesterday
 
Richard B 4-15     approved for SSD!


Aubrey, April 1, 2000 - Hi, Thanks for the great welcome, everyone! About the sodium, it is interesting that you should mention it. I like my food fairly bland to begin with so I haven't worried about it that much. The first cardiologist I saw said absolutely nothing about diet and he's supposed to be the best in town. When I saw another, he mentioned keeping sodium down and keeping my fluid intake to about 2 litres a day. The next time I saw cardiologist #1 he said the above precautions were not necessary! My medication is presently keeping my lung congestion under control and I have no swelling in my lower extremities, so that is perhaps the reason for the lack of concern. I may not have congestion or swelling but I am concerned about the loss in heart output, which seems like it can only go so far. Any thoughts out there? Thanks again, Aubrey. aubrey.mutch@sk.sympatico.ca


Bev K, April 2, 2000 - Well, it has been almost a month since I posted here, right after my initial diagnosis of CHF. I have continued to read everything on this site and I read the message boards daily. I don't feel alone and scared like I did at first. The only real problem I am having is trying to lie down flat to sleep. It just doesn't work. I also am having swelling in my ankles and the doc just started me on a new diuretic so we will see if that helps. Well, I just wanted to check in and say hi. Thanks again Jon, for this place. Bev. Caprice58@aol.com
 
Jon's note: Be sure to read this page


Pat L's April 2 reply to Billie Jo's March 31, 2000 - Hi Billie Jo, One of the things I learned fast, the hard way, was not to take my potassium tablets on an empty stomach. The few times I did, I was really sick to my stomach within a short time. Pat L. patlat@yahoo.com


Ginger, April 3, 2000 - Hi, I just wanted to let everyone know that Joy R came through her surgery pretty well. It went well and she got out of ICU this morning. I'm not sure how long she will be in the hospital but they don't think it will be as long as expected. Yea, Joy! :-) Hugs, Ginger. mystery@laker.net


Carol W, April 3, 2000 - Hi, I have a question for all you exercisers. If I don't have enough energy to get from one end of the day to the other, and if I start an exercise program, how will I be able to do all the other things that need doing? I would like to put more energy into exercise, but I already need help with everyday things. If I exercise, will I need more help? It doesn't seem fair to ask my family to pick up more of my activities just because I went to exercise class. Will more exercise give me more energy? Thanks for any suggestions you can give. cabwojo@banet.net


Jon's April 3 reply to Carol W's April 3, 2000 - Hi Carol, Good questions. The real benefit from structured exercise is that you are able to know how much exercise you are really doing on any given day, keep it steady, and raise it in measurable amounts over time. This means that you can accurately raise your exercise level - slowly - to the best amount per day for you. That's why exercising on a treadmill that displays speed and time is good, or if mall-walking, you need to time your "circuits" around the mall and keep things on a schedule! It's that structure, with its ability to let you know what you have truly accomplished each day that is so important. Not only does it allow you to keep exertion level steady but it is encouraging to be able to see progress, especially if it comes in really small amounts, which is usually the case with us CHFers.
     Is it fair to your family? That has different perpectives, doesn't it? Is it fair for your family to deny you this structured exercise that may improve your condition (articles on my pages prove it) because they don't want to do more around the house? I'm not saying that is their attitude - I am trying to shake loose your attitude. :-) You are still looking at your own life the same exact way you always have, thinking that you are "responsible" for "taking care of" the family. Carol, Carol, Carol. <g> Families take care of each other! When a family member develops special needs, families don't try to force him into the same old patterns. If you change your outlook, you may find that they are more than willing to pick up the "slack."
     I am very grateful that my family instantly picked up almost all of my responsibilities when I got CHF. If I can't do something that is "my" chore (like yesterday), someone else just does it - no fuss, no questions asked, because they know that if I can do it, I will. Mind you, sometimes we disagree on how a chore should be done and it's always frustrating to see someone else doing something we think we could do better, but that's our problem, isn't it?! <lol> I used to do all the yard work, hold a job, do the menu, grocery shopping, all cooking and dishes, clean the bathrooms, do auto maintenance and home improvements (I am a journeyman cabinetmaker) and trade off other chores weekly with my wife. Now, I try to do the dishes and cook for myself. Period. I don't always manage even that. Should I feel guilty about it? I take the time and energy to exercise on the treadmill. Shouldn't I?
     I also take a lot of time to run this web site. That takes away from my family. Should I not be doing that? You need to really think hard about these issues in your life from all angles. Think it over and then ask some more questions here if you'd like. Priorities seem much more important when we lose our ability to do a lot of things every day. Somehow we have to decide what to do, how much, and why. Discuss this with your family. Be honest about your own feelings. But first read those articles about exercise! Jon.


Terry, April 3, 2000 - Hi, I'm just wondering what would happen if I stopped taking all these drugs I'm taking. I am getting tired of it all: Cordarone, Hydralazine, Digoxin, Ramipril, Coreg and Coumadin? tpuls@home.com


Jon's April 3 reply to Terry's April 3, 2000 - Hi Terry, It's tempting, isn't it? Well, here's the scenario I see headed your way if you do stop taking them all: For a week or so, you never felt better. What a relief! Then you start feeling not so good. You start to have trouble climbing stairs, you start feeling fat and a bit short of breath. In a few more days, your ankles get a bit swollen, then your belt is too tight for sure, and you don't want to eat because you always feel full. Man, you sure are tired. Sleep looks more and more attractive but is harder and harder to come by for some reason. Climbing stairs gets tougher every day.
     By the time you convince yourself of the sad truth that you really are back in heart failure, it will take more drugs than before to get you back to the same level of life quality, if indeed you can achieve the same plateau as before. So it goes,... I get just as tempted as anyone else to just blow it off, at least "for awhile." I know better but that doesn't stop the idea's appeal. <g> I won't do it because I don't think a few days of feeling better - not well, just better - are worth the increased struggle down the road; a road I would probably shorten considerably if I stopped my meds even for a while! Jon.


Phyllis A, April 3, 2000 - Hi Jon and friends, I have been very busy with my book and haven't posted lately, but I try to read the posts as often as possible, which is about 3 times a week. God bless and all take care. phylcasurv@msn.com


Gus R's April 3 reply to Bev K's April 2, 2000 - Hi Bev, It sounds to me like you are coping with your CHF very well. It took me much longer to accept it and move on. It also sounds like your doc is working to find a diuretic that will work for you and if he can do that, the swelling in your ankles and your sleep problem should improve. Don't let him give up. With a little luck there is a product and a dosage that will help. I don't know about diuretics but in other areas I've found meds that work well for a while and then the problem comes back. So if that happens to you, just start looking again and don't overlook any that didn't work in the past; they might work another time. See, I'm assuming you can overcome your present problems and I'm talking about the future because you do have a future, even with CHF.
     If you don't have any success with Jon's pillow pyramid, a recliner might work; it does for me. I've just admitted that my diuretic doesn't always work as well as it should. My occasional bad night is usually because I've done too much of something, but sometimes there doesn't seem to be a reason. It just happens. Best wishes, Gus R. gus13@net66.com


Helen O's April 3 reply to Elaine's March 29, 2000 - Hi Elaine, I understand the problem with SSD. I was diagnosed with IDCM and CHF when I was 24. I am now 26. I applied for SSD and SSI but did not have enough work credits for SSD. I did qualify for SSI, which helps greatly. I wish you luck in your quest. Helen O, age 26, EF 25-30%. haotis@juno.com


Roz W's April 3 reply to Bev K's April 2, 2000 - Hi Bev, I tried the foam wedge and pillows, and combining wedge and pillows, with no luck. I was really missing the joy of sleeping. Since I was having a tendency to fall asleep during the day in my recliner, a piece of furniture which I would love to own a Rottweiler to protect whenever it is vacant; although I wonder if even Jon's Alpha dog technique could keep the dog out of "my" chair, an inner voice spoke and said "You idiot. Try sleeping in the chair at night." Since then, bliss. It might work for you. If there is a husband in your recliner, write Jon again. Best wishes, Bev. Roz. RWarriston@aol.com


Cecil, April 3, 2000 - Hi, I have just recently been catching up on some of the posts and noticed that a number of you are having bad leg cramps at night. One solution I found that works almost immediately is to keep bananas by your bed and eat one immediately upon the pain. It is amazing how rapidly this removed my cramps. I hope it works for others out there. Cecil3744@aol.com


Rieale, April 3, 2000 - Hi, I received good news and bad news today and I'm not quite sure where to vent and celebrate, so I thought Jon's Place was as good as any. First the good: Well, I saw the Dean of my college today to find out how to finish up my degree. You see, I was in my final semester of college, about to do my 10 weeks of student teaching when I was hospitalized and sentenced with cardiomyopathy and severe CHF. My specialist has told me in no uncertain terms that teaching is out for me. It turns out that BGSU will allow me to do course work instead of student teaching and I can get a BS in English Ed in August without the teaching certification, which isn't a big deal since "teaching is out for me."
     My problem is that my case worker says that my attending summer school to graduate will most likely prevent me from receiving SSD. In other words, if I can sit in a class, I can work but without my degree I will never be able to do work outside of minimum wage work that my heart can't take. Being only 22 years old, I'm facing a life of staying on SSD, making $539 a month and never being independent; maybe never marrying because of insurance reasons - I was supposed to marry in 2 months - and definitely never having kids. It's either that or still living in poverty because the job I get may not accept my pre-existing condition so I'll be paying big bucks for testing, visits and pills. Ugh, talk about a rock and a hard place.
     Does anybody have any advice on what someone my age should do? Most likely, I'm going to say screw it to SSD and finish school and hope for the best. Thankfully, my parents are wonderful and are currently supporting me but I don't want to have to depend on them forever. Rieale@aol.com


Jon's April 3 reply to Rieale's April 3, 2000 - Hi Rieale, I try not to sound like a broken record but, have you got a SSD lawyer working for you on this? I suspect an experienced SSD lawyer could work wonders for someone in your current position. Jon.


Rick M's April 3 reply to Cecil's April 3, 2000 - Hi Cecil, I just wanted to share my latest nutritional finding. After all these years of hearing about CoQ10, I finally asked my doctor if it was ok (and checked in with Jack, my additive advisor). The pills came today and I took my first one with lunch and wow! What have I been missing?! I know I haven't had time for the pill to act but the peanut butter I took with it is is delicious! I haven't had any since my adult children were small. Any excuse for a small taste sensation. rearadml@iu.net


Henry T's April 3 reply to Terry's April 3, 2000 - Thanks for raising a question (fantasy) that I'm sure many of us think about. Sometimes I've even gone so far as to tell my docs that I'm cured! They just smile and put up with my foolishness. Seriously though, Jon has posted a study that deals with stopping beta-blockers and the results may keep you popping those pills a little longer. I think dealing with CHF can be as psychologically challenging as it is physically. Maybe we need a fantasy-of-the-week page. <lol> Henry. hrtick@aol.com


Jon's April 3 reply to Henry T's April 3, 2000 - Hi Henry, That entirely slipped my mind - so much does these days! Thanks for reminding us. Henry's right: if you have coronary artery disease, stopping beta-blockers suddenly can kill you, or put you in some serious pain. See this article. Jon.


Bev K's April 3 reply to Roz W's April 3, 2000 - Hi, There is a husband in my recliner and that is why we have 2 of them. <lol> Seriously, I do pretty well propped up on pillows. A couple of nights last week I was actually able to sleep flat. I don't know why, but it didn't last. I think I will see if I can find a foam wedge to try. I seem to try to suffocate myself with so many pillows. I go to sleep ok and wake up with part of them over my head. Does anyone know where to find the foam wedge? Bev. Caprice58@aol.com


Joe S' April 4 reply to Carol W's April 3, 2000 - Hi Carol W, Listen to Jon. You are apparently trying to keep doing things you used to do for everyone. There is no sin or crime in allowing others to help you. I used to be very upset when I had to have my wife lift anything, but I now do things she can't do. Regarding structured exercise, it is the only thing I know of which will help you almost much as the right diet. I believe stretching exercises are one of the best. It helps remove fluid from muscles.
     To Rieale, I have a web site which I keep updating with special lighting products. If it continues the way it has for a few months or so, I may have to give up my SSD. There are literally thousands of ways to make money on the Internet without leaving your chair. If you can get a degree, you can do it, honest. If I can, anyone can. Just use your imagination, but don't go into lighting. :-) Joe S. jes@stevensonlighting.com


Pat L's April 4 reply to Terry's April 3, 2000 - Hi Jon and everyone, Terry asked what would happen if all his meds were stopped. Last summer and fall I went through a lengthy meds reduction, specifically of Coreg. I went off it with my doctor's approval and supervision, completely. At first I had more energy and I felt great, then gradually I didn't feel so good, then I was very short of breath again. I had to go back on Coreg, and since then I have been switched to metoprolol, without regaining the improvements I had previously enjoyed. My EF is now a dismal 20% again, down from the 53% it peaked at after 2 years on Coreg (and a lot of other meds). After 6 months back on a beta-blocker, I am not regaining lost ground. Jon, one question I do have: Are there any studies or articles on whether metoprolol is as good or effective as Coreg; any articles on Toprol XL? Thanks, Pat. patlat@yahoo.com


Jon's April 4 reply to Pat L's April 4, 2000 - Hi Pat, See the Coreg page for info on both topics. Jon.


Rieale's April 4 reply to Jon's April 3, 2000 - Hi, My parents thought it would be best if we tried it without an SSD attorney first. As it turns out we may have a lawsuit on our hands too against a previous doctor of mine. Recently when I went to Cleveland, they told me that they received my records and x-ray from a doctor I went to last March. Apparently my heart was enlarged last year and he said nothing, did nothing. In his notes he stated that it was probably because of me being overweight and he didn't think I needed any further testing. I mean I know misdiagnosis is common, but this is a whole new angle. Rieale@aol.com


Jon's March 4 reply to Rieale's April 4, 2000 - Hi Rieale, I disagree. You should have an SSD lawyer from the word go. See my SSD page. I also disagree with a decision to start a lawsuit against a doctor, although obviously anyone can pursue such an angle if they think it will improve their situation, spiritually and physically. You would be amazed at just how common this precise sort of mistake is. My own doctor sent me to an unnecessary surgery without a chest x-ray when my heart was extremely enlarged. In effect, he almost killed me. I have learned enough about the entire situation of doctors, patients, medical training, CHF, the USA health care system and my own mind to just forgive him, change doctors, and move on with my life. My spirit is much healthier for it. I don't care about my wallet. I was 36 when it happened and had been sick with what was obviously severe CHF for almost a year previous.
     It boils down to a doctor using poor judgment, which is not the same as malpractice. I was young, fit and muscular, so my doctor never considered heart failure, assuming it was gallstones. You were young and overweight, so your doctor asumed your heart was strained by your extra pounds and the stress they placed on your heart. Were they wrong? Yes. Did they commit a crime? No, I don't think so. They just proved that they aren't very perceptive doctors. Unfortunately, thousands of people each year see this exact mistake invade their lives and must deal with it. It's a done deal and nothing will bring back treatment possibilities long since lost. I don't see a new angle, just an all too common mistake that is very hard to accept at first, especially when you are young. Jon.


Rick M's March 4 reply to Bev K's April 3, 2000 - Hi, If you look in the Yellow Pages under various headings (here in Florida, it's under "Boat Cushions"), you will find foam suppliers who can cut the foam to your specs. Foam comes in many densities. The firmer the foam, the higher the cost. Let your fingers do the walking and find the best price and fastest service before you go to order it. Many upholstery shops can help you out. rearadml@iu.net


Carol S, April 4, 2000 - Hi, I just found out this week I have heart failure. I know nothing about anything, except as I read your pages a lot, too much applies to me. I'm scared and I'm going to try to learn from you. I'm glad you are here. Carol S, age 56. cssalome@yahoo.com


Heidi J, April 4, 2000 - Hi, After reading everyone's messages, I'm feeling overwhelmed but needed to reach out for support and some comfort. I will be 36 at the end of April. During December, 1999, I was diagnosed with CHF and cardiomyopathy (I'm not sure if the two are the same). As a result, I left my work position and I'm in the process of applying for SSI. I'm on several medications and at times feel embarrassed to admit that I am.
     For the last 1 1/2 years I worked as a service coordinator (same as case manager) for one of the area agencies in my state. Currently, I serve on a board of directors for an adult day habilitation program. I'm grateful we only meet occasionally because of my health issues. After working in the human service field, I never expected to be on this side. I closely supported my father during his heart transplant and never expected to be in a similar situation. He has lived with his new heart for approximately 9 years and recently has experienced bad health complications.
     I've hit an emotional rut and feel a loss now that I stay home. I've never been fond of being a domestic chief and have pursued my career for more then 10 years. Don't be mistaken, I appreciate what I have, which is being alive, family, home and friends. I do miss the daily contact with people and sharing myself with others. There are days I only have enough energy (and desire) to make my bed. I've taken my diagnosis very seriously and have watch my salt and fluid intake. In addition, I have established a good weight (prior to this I was full-figured) and a good relationship with my cardiologist. Now I need to find my happy old self and move forward. hbezanson@mediaone.net


Jurgen, April 4, 2000 - Hi, Are there any CHF cardiologists in the Greater Vancouver/Canada area? If so, please e-mail me his name and contact information. Thanks, Jurgen. jhesse@telus.net


Carol W's April 4 reply to Jon's April 4, 2000 - Hi Jon, I read some of the articles. What I have found is that energy is like money. If you have $10 to spend every day, when it is gone it is gone no matter what you spent it on. So if I walk on a treadmill, there goes my exercise. One buck or 10, it's gone. And what is wrong with doing what I can to "care for my family?" I enjoy caring for my family, it is what I have done for 30 years and want to do what I can for many more. I would rather spend my $10 worth of exercise on them than on a treadmill if there is no gain in interest (more energy) in using the treadmill.
     As for family help, they help as much as they can. Perhaps you are lucky enough to be the only one with health problems in your home. They are here for everything and do things for me sometimes before I know the thing needs doing. I have found that having a housekeeper come and take care of things is a great help. So, I guess the question for anyone who has an answer is, Should I use my energy doing things I enjoy or walking on a treadmill? cabwojo@banet.net


Jon's April 4 reply to Carol W's April 4, 2000 - Hi Carol, My wife has a serious electrical problem with her heart and only medication allows her to safely do everyday things like drive a car. She struggles to hold down a difficult job (she just inherited a 2-person/2-location job - literally) and care for a teenage daughter who cannot drive, as well as caring for me. Unfortunately, Linda's medication has fatigue as a side effect and that doesn't help. My daughter has a serious chronic illness that initially threatened her life and now requires multiple medications. Everyone around here has a serious health problem, come to think about it. Even one of my dogs has a serious health problem! <lol> That's just life and we deal with it okay as far as I can tell, with lots of laughter and time spent together.
     About the rest, please re-read my post. I'll not get into another "explaining my post" ordeal. It's just advice to seek a new approach for new circumstances and I'm sorry if it upset you in any way. Jon.


Bev K's April 4 reply to Rick M's April 4, 2000 - Hi, Thanks for the advice on foam wedges, Rick. I hadn't thought of having one specially made to fit me. That might work out much better. I wouldn't think "one size fits all" in this case. Bev. Caprice58@aol.com


Karen K's April 4 reply to Heidi J's April 4, 2000 - Hi Heidi, I read your recent post and easily identified with it. I was diagnosed with cardiomyopathy at the age of 44, what I felt was the prime of my life, and a job I loved. When I decided to stay home I also found I (thought) I had lost my identity. I was depressed for quite a period of time.
     I don't know if you're up to this or not but one thing I found once I decided to end my pity party was to get involved in volunteering. Volunteers are needed in so many areas and since you are volunteering, if you have to cancel out even on short notice, it's fairly well tolerated. I've recently returned to work part-time with very flexible hours which allow for my daily exercise, and found I once again had to give up something. I gave up my volunteer work and am just now after over 6 months discovering ways to allow some time for volunteering, which I've found extremely rewarding, that doesn't totally exhaust me.
     Hang in there. I'm sure your outlook will improve. There certainly is a period of adjustment when you are initially diagnosed. Feel free to e-mail me if you like. Karen. karenk@muscanet.com


Phyllis A's April 4 reply to Heidi J's April 4, 2000 - Hi Jon, Have all your medications finally kicked in? Do you feel pretty good most days? I have no severe fatigue, can now walk for exercise, and even dropped some weight since walking. I was put on metoprolol and added spironolactone to my Lasix. With all this, I feel like I no longer have CHF. is this fooling myself? Do the meds just mask the symptoms? Please explain.
     To Carol and Heidi, this is the best site to calm all your fears. Trust me, I also once was feeling lost but Jon's site has changed that. You can go on with your life. God bless us all. phylcasurv@msn.com


Jon's April 4 reply to Phyllis A's April 4, 2000 - Hi Phyllis, I'm glad to hear you are doing so well! No need for a recitation of Jon's symptoms. <lol> Ideally, in a perfect world, proper meds would make us all feel like we no longer have CHF. The world isn't perfect and as we all know, few doctors and even fewer drugs are ideal, so not many of us make it to that point. Some people do though and I'm glad to hear that you are one. I would say to enjoy, with caution; meaning don't get silly and go off your low sodium diet or quit exercising (walking is great!) and for sure don't stop taking any meds. Other than that, enjoy yourself while the sun shines.
     Results of CHF treatment depend on so many factors it's hard to say anything with precision about anyone's particular case. It may depend on your individual body's responses, your doctor's skill, how soon your CHF was diagnosed, what the cause of your cardiomyopathy was, diet, compliance, attitude, climate, prayer, pets, and who knows what else! :-) Jon.


Joe S, April 5, 2000 - Hi, As a former addict to pastrami, corned beef and anything else with tons of salt, I'm telling you my salt craving is constant. Did you people know that many bacons now have less sodium in them then say a bowl of cereal or cottage cheese? Several years ago many of the major meat packers took MSG out and this cut the sodium down tons. Hey, a properly made ham truly has very little sodium. Of course, you can't find them anymore. :-) Joe S. jes@stevensonlighting.com


Joe S' April 5 reply to Carol W's April 4, 2000 - Hi Carol, No one is saying you should give up caring for your family. The reason why walking on a treadmill or other strenuous exercise is good is that after a little while you start feeling better and better; Honest. Doing chores which do not get your heart racing are of no benefit, and if you do strenuous exercise, within a week or so the chores will be easier and the fatigue will lessen. Carol, I've been bugged by a bad heart for over 56 years now. Read my bio. After hard manual labor my heart problem even went away for 20 years. Joe S. jes@stevensonlighting.com


Jennie O's April 5 reply to Cecil's April 4, 2000 - Hello, I was troubled by leg cramps, used quinine successfully, but off and on. I have had problems coming to terms with taking tablets on an ongoing basis, you all know about that one. I have always had digestive problems, so I never take salt, coffee, nothing orginally from a cow, no pork, non-organic colouring or preservatives, wind inducing vegetables like peas or broccoli but this is cool. I can break out if I want, eat a raspberry pavlova by myself in bed once or twice a year, and it's just a problem for me for a few days. I was anorexic as a teenager, but then we called it fussy feeder. I weighed between 94lb and 140lb until I was 25 and got married. At the start of this year, I was 224lb. I am 5'9" tall. Now I am just over 200lb. I can't exercise because I fall over. The completely disinterested medics are no help but they did say that because my potassium levels were so low, I should eat lots of bananas. See, there is a point to all this. I do eat loads and keep them by my bed to stave off the night-time munchies. True enough, I haven't had a twinge of cramp except when I've run out for a couple of days and I have continued to slowly lose weight without feeling deprived. I sleep much better too. So I'm with you, Cecil. Best wishes Jennie O. jenniehodhod@aol.com


Jean C's April 5 reply to Carol W's April 4, 2000 - Hi, I loved the way you you spend your limited energy like limited money ($10 a day). I told myself that I could do one project a day - a project being a trip to the grocery store or running the vacuum. Have finally gotten my meds somewhat stabilized, although I still have spells when I want to chuck it all and ignore the CHF, kind of out of sight, out of mind. I have an easy, part-time job but even so when I come home at night, I start with angina pains and breathlessness unless I take those pesky meds. I take all my one-a-dayers at one time in the morning and often have a dizzy spell about ½ hour later that can last up to an hour; Downright inconvenient. I love you all and love reading the posts. Your family are wonderful, Jon. I live alone and not very close to my children but have a neighbor who mother hens me and does things like take out my trash. The world is full of wonderful people. Happy Spring to all. ojean@oz.sunflower.org


Phyllis A, April 5, 2000 - Dear Jon, I forgot to say that I changed my cardiologist twice at your suggestion and this one has hit the mark. I'm on lots of meds but feel good. This the exercise has helped a lot. I try to walk at least 4 to 4 days a week, and sometimes I walk five. Before, I could not walk because of shortness of breath, and I could not lose weight but now it is all coming together. I still take 360mg Verapamil twice a day, 20mg K-dur twice a day, aspirin, 160mg Lasix in the morning and 80mg in the evening, 25mg metoprolol twice a day, 25mg spironolactone, and vitamin C, E, and garlic. I don't even take CoQ10 anymore. It has been months. So I'll enjoy it for as long as it lasts. God bless. phylcasurv@msn.com


Ginger's April 5 reply to Carol W's April 4, 2000 - Hi Carol, I just want to say something here. Exercise, even just a little bit every day if you are able, will help give you more energy. Most times after a little while you will find you can do a little more then you thought. I am not saying go out and exhaust yourself, I am saying ya try just a little and see if you can handle it and work up to more. Exercise is important in heart health. And if you don't try, how will know if you can gain anything from it?
     In the beginning of my illness, I thought the same way; if I go walk on that treadmill I am going to be too tired to cook dinner. Well at first that was true but after a while I found I was able to do both. Then I found myself in a situation where I had to give up the exercise for awhile and I definitely felt the difference. I am now back to starting out real slow and building back up and as I do, I feel better and have more energy. I hope this helps you in some way. I also want to welcome all the newbies to Jon's. Stay well ya'll. Hugs, Ginger. mystery@laker.net


Brenda George, April 5, 2000 - Hi everyone, I am writing about an article in my local newspaper, The Press Christchurch New Zealand. The heading is "Hormone hope for heart patients." The article goes on to say,

     "Christchurch researchers have developed a groundbreaking technique for monitoring heart patients, using a cardiac hormone, that could mean fewer deaths and reduced hospital stays. The research descibed by the Lancet as a milestone, indicates that the rate of deterioration in patients with heart failure could be halved using the hormone to monitor their conditions. ,..., The hormone, discovered by the Christchurch School of Medicine researchers, named N-BNP, is produced by the heart in response to stress. By measuring the levels of hormone in the blood, doctors are able more accurately to assess a patients heart condition an treat it. Cardiologist Professor Mark Richards said that until now doctors did not have an objective test to monitor the effectiveness of patients treatment. 'We tended to have to wait until peole got to a fairly dangerous state before we could be clear they actually had the condition and were deteriorating,' said Professor Ricahards. 'Now this blood test gives us an opportunity to see whether they are likely to remain stable or not before it becomes dangerously obvious.' He said reducing the number of heart events had huge implications for improveing patients' quality of life and lifespan."

     I thought that this was an exciting article. To read the complete article, The Press New Zealand has a web site. b.e.george@inet.net.nz


Jon's April 5 reply to Brenda George's April 5, 2000 - Hi Brenda, That is interesting. It especially caught my eye when the FDA recently turned down a blood test for diagnosing CHF based on this hormone. I though it was going to be approved. You can read a somewhat older article on the same hormone and its use in treating CHFers in a practical fashion here. Jon.


Ruthie A, April 5, 2000 - Hi to all, I congratulate those of you who are doing so well in coping with CHF. It demonstrates how far technology has gone in the last few years to allow people to live longer and more productive lives than they thought possible. I also concur with you Jon, that CHF is an individual condition depending on myriad factors. No 2 patients are alike nor are 2 treatments for the same condition alike. In my case, I never have had the great news that I am improving. On the contrary, each time I see my CHF specialist I have gone downhill another step. No matter what new med we try or what new theory we test, it is not enough. So enjoy your "freedom" days and live life to the best of your ability. They are precious and not to be taken for granted.
     To those of you newbies who are still reeling from your diagnosis or have hit what you think is the bottom with depression, relax. These are normal responses to being told that you are sick and that your expected long life span has been shortened. Give yourself time to adjust, learn how to care for yourself, get a CHF specialist, and then live. Life is short no matter what your circumstances. The only way to handle it is to give it all you have. You only have one shot at it. I am not sure why I am writing all of this. I guess I was just moved by the latest message threads. :-) Ruthie A. rlaba@mindspring.com


Elaine's April 5 reply to Rieale's April 4, 2000 - Hi everyone, I had a chance to get a head start on my DCM and CHF too. In March, 1998, I had back surgery for a ruptured disc but went through the whole procedure without a chest x-ray. I had noticed my legs hurting with exertion, being out of breath and just feeling weak for several months before all my back stuff, but just thought that at age 42, having had 3 babies in the past few years and being a stay at home Mom, I was just out of shape. So the following September when I went to my doctor with what I knew was pulmonary edema, the doctor sent me directly - do not pass Go - to a cardiologist and to have an echo.
     The doctor gave me the shock of my life, started talking heart transplant, and said I was in the patient-for-the-rest-of-my-life club. I used to be an x-ray technologist and when I was working, people didn't do anything in a hospital without getting a chest film first. It really does feel like I was cheated somewhat, but then I think maybe I should have paid closer attention to my own body too. It just scares me to think of going through the surgery with my heart in the shape it was. But I do agree with Jon, just move on and use your energy to produce positive results and don't waste time and money on negative things You'll have enough down days as it is without thinking about some dumb doctor. At this point I'm just glad I do have a good doctor. My meds seem to be doing their thing, and while I certainly have my bad days, things seem to be going pretty well as far as my DCM and CHF go. Just hang in there Rieale. Finish school and move forward. Elaine. heartfelt16@netscape.net


Jon, April 5, 2000 - Hi everyone, Just to elaborate a bit on Elaine's comment about chest films being done routinely in the past, she's right. Managed care, capitation, and the fact that doctors, hospitals and other providers are no longer reimbursed in full for such things as "unnecessary" chest x-rays, have sent the "routine" chest film into the dumpster. If my surgery had been scheduled for the old fashioned method of cracking me wide open, I would have had a chest x-ray first. Because it was to be a laparoscopic cholecystectomy, no chest x-ray was considered necessary and so the surgery was done even though it was both unneeded and dangerous. Such is our economics-driven health care system. The next time someone says that lots of tests are unnecessary and just drive up costs, remember our stories here and think how much money and misery can be saved through a cheap and simple x-ray. Jon.


Billie Jo's April 5 reply to Carol W's April 5, 2000 - Hi Carol, I am also a little confused on the exercise issue. My doctor wants me to do a regular routine of walking every day, which I try to do, but with 3 little ones and a house to take care of, sometimes there's just not enough hours in the day or enough energy to fit it in. My region is also very rainy and the closest mall is an hour's drive away and I can't afford a treadmill. So is there really a big difference between walking on a treadmill or the mall and walking around the house dusting, sweeping, and doing windows? If so, does anyone have any insight on how to go about aquiring a treadmill for little to no money? Can your doctor prescribe one and have insurance pick up the tab? Is there some way to sign up for one to be donated? If this form of walking really is the ticket, a treadmill is the only way I can do it consistently. I just can't drag 3 little ones with me to go for a walk.
     While I'm here, one more question: I've just been offered a good paying census job that I think I can handle physically, but it only lasts 4-6 weeks. I was denied once by SSD and am waiting on an appeals meeting with an attorney on April 11. By accepting this job, am I endangering my chances to get approved by SSD? This job really would be a great help. I'm starting to be afraid to answer my phone for fear that it's another creditor wanting their money but I don't want to screw up my chances with SSD for a temporary fix. Any advice? Sincerely, Billie Jo. billiejoconley@aol.com


Jon's April 5 reply to Billie Jo's April 5, 2000 - Hi, About exercise in general: We benefit for the same reasons that healthy people benefit. Oxygen sustains us. The more fit our bodies are, the more effective our body's use of oxygen. It really is that simple in principle but seems difficult to understand because of the complex way our bodies consume and use energy.
     By "budgeting" your energy, you never actually improve your body's ability to use the oxygen it can get and so you never feel better. In fact, fitness is one area where no one "sustains." You either are always improving a bit, or you're backsliding. Conserve your energy too much and you're moving backwards and will only get more tired more often as the days roll by. Budgeting life is a bad idea unless you are literally end-stage. It's not good for the body and it's not good for the mind.
     About type of exercise, yes it matters but maybe not the way you think. <g> Joe hit on this earlier. There are several important things to remember about exercising with CHF:

Billie Jo, the thing about housework as exercise is that few people ever manage to sustain a certain level of activity throughout their chores. If you can consciously do so, chores will do almost as well as walking. Keep track of how long it takes you to do specific chores and do them in the same amount of time during each exercise session. Over time, you will need to do them faster or add another chore in the same amount of time so that you are increasing your exercise intensity. On day one of the week do the same chores, on day two do the same chores, etc. That way, you are being consistent. Arrange chores so that you exert yourself roughly the same amount each day of the week. I think you start to see why walking is considered so much easier as exercise. :-) Do not rest between chores during your "exercise" session each day. Ignore distractions as much as possible during the session.
     One reason walking is preferred is that the human heel (as in foot) has a pumping mechanism built into it that helps return blood to the heart from the feet and legs. It can take over as much as 40% of the returning blood job while walking normally. So, yes, walking is "better" but chores can be made into exercise if you have the will to do it right.
     As for obtaining a treadmill, have you checked into local YMCA/YWCAs? Local churches that help the disabled with their needs? State, county and local charitable organizations? Kiwanas, Elks, Shriners, etc? If you want to receive, you have to ask. <g>
     At the risk of being repetitious, setting priorities is the important thing in CHF life. If you want to take care of your house, that's cool. If you want to conserve your energy, that's cool. If you want to strike out in new directions, that's cool too. BUT sit down with your family, be honest and set your priorities as well as theirs so everyone knows where everyone else is coming from, and how they really feel about it. No one reads minds but most of us somehow expect our family to do so. That doesn't work. Talk about it. I know I just said this yesterday but it bears repeating. New circumstances call for new approaches.
     Billie Jo, I would ask your SSD attorney about the census job. No one else will have a more valuable (accurate) opinion on this subject. About exercise, I realize that my posts will not answer everyone's questions in full but I must assume that people know what a reasonable exercise program is like. If not, ask your doctor to set you up in cardiac rehab, which is usually covered by insurance these days even for us CHFers. They will get you into a structured and intelligent exercise plan tailored for you, which you can then continue at home. Jon.


Jamie S, April 5, 2000 - Hi, I found this article regarding depression and CHF. I'll just post the Url to save Jon excess work. www.pslgroup.com:80/dg/18f17e.htm. I hope some will find it helpful. Keep up the good work everyone. Jamie. JamieDan@prodigy.net


Billie Jo's April 5 reply to Jon's April 5, 2000 - Hi Jon, Thank you. I think it finally makes sense to me now. Looking back to before I was sick, at first exercise made me tired but then after sticking with it, I felt great and had more energy. I guess it shouldn't be much different now except I'll have to tone it down from Tai'Bo to power walking and listen to my body closer. I do have a Health Rider out in the garage. Could this be an appropriate alternative in the meantime while I try to figure out a way to get me a treadmill? I guess I just have to buck up and stop dwelling on the "I can't" and concentrate on the "I can." Thanks again. Billie Jo. billiejoconley@aol.com


Rick M, April 5, 2000 - First of all, I think I speak for all when I say that Jon's new computer must be a whiz because his answers and comments are getting better and better. I've been printing them out to give to my cardio doc when I see him next. On exercise, I first met my doctor at the fitness center where we were both working out. This was long before I had CHF and I actually didn't know what kind of a doctor he was, just that he was a very intelligent man. After he became my cardiologist he told me to keep up my weight training but did not encourage any treadmill work as my energy level was not high. The weights that I do are to maintain my shoulder and neck strength and do not include any lifting; I pull down, not lift up. The funny thing is that after all these years, I am doing the same weights and the same reps as before my CHF, whereas I would have expected that I would be tapering off as I reached age 75. I go 3 days a week and never miss a day, but I don't spend a lot of time hanging around the locker room like some of the old duffers do. It's amusing to observe the patterns of use: Monday, everybody's there; Wednesday, not as many; Friday, hello? rearadml@iu.net


Dee L, April 5, 2000 - Dear Jon, I just got my results from the Heart Failure Center at CPMC. My MUGA showed an EF of 36, my 6-minute walk test was 3.11 and my cardiopulmonary test was 16. In June of 1998, I had a heart attack caused by CAD and the EF from my first stress test was 31. Then an echo in June, 1999, showed my EF to be 35 and a dual thallium stress test in November of 1999 showed my EF to be 41. Obviously I have not done as well as last November. I have just begun yo-yoing in weight anywhere from 6-10 lbs. The docs are talking about switching my diuretic from furosemide to Demadex. My question for you is, "What NY Heart Association Classification do you think I am at this point?" Last year I was reclassified from class 3 to class 2. deedurham@webtv.net


Jon's April 5 reply to Dee L's April 5, 2000 - Hi Dee, There are 2 kinds of heart class. One is "clinical" and is rarely mentioned here because frankly, it has little use for patients. The other is functional class, which is described in The Manual. Because of the classification system's nature, I can't tell you what heart class you are. Functional heart class is based on what you can or cannot do as far as everyday activities go and your resulting symptoms, not on test results. :-)
     As for the slip in EF from November to now, it's well within the margin of error for echocardiograms, so your EF may not have changed at all. Besides, the numbers aren't that important when the difference is that small. See this page for more. Jon.


Renee M's April 6 reply to Heidi J's April 4, 2000 - Hi Heidi, I went through a similar time after I got myself adjusted to my heart condition. At first I was so sick I didn't care about anything. It took me a long time to feel better. Then I was ready to find my old self. I had a really great job that I loved. They would have bent over backwards to keep me but it wasn't in the cards. I had also been working for 25 years. It took me a while to realize that I identified with my job and it gave me my sense of self-esteem. Now I didn't have that and I was a little lost and depressed. I kept going from one thing to another, thinking, "Now I've found my old self." All of the things I did helped me but I never seemed to get back to my old self. Then I realized that my old self wasn't coming back. I had to find a new purpose that suited me now.
     I started keeping a journal to see what I was doing and found I was doing a lot more than I realized. Everything that now gave me sense of satisfaction was something that put my problems aside and focused on someone else. No, I didn't do any physical work but I listened to others' problems, I made cards for sick children, I did crafts, I called bingo at a home for senior citizens, and I took care of my Mom and Dad. These are no earth-shattering things or super accomplishments, but they were very important to the people I did them for and they really appreciated it. I now realize that I have a new self and I am happy with it. It may take you some time, but you will find yourself again. Don't be afraid to try new and different things. You may surprise yourself. Good luck. Renee M. Auntonay@prodigy.net


Renee M's April 6 reply to Carol W's April 4, 2000 - Hi Carol, Why do you feel that you have to choose between caring for your family and caring for yourself? Things will definitely change for you and your family. You may not be able to do the same things the same way you used to. It takes time to get yourself to the best you can be with your condition. Exercise that is suited for you personally will help you. At first it may only be walking one block, not an hour on the treadmill or walking at the mall. You will build up that exercise slowly and find what works best for you. You will also need some time to readjust your ways of doing things for your family. You may not be able to cook a great dinner every night, but they will appreciate it just as much when you can. As the caregivers in the family, it is very hard for us to give up some of that caring, even when we have no choice. Asking for help does not come easy for us.
     I have found that balancing my needs with my family's has worked for me. Sometimes they come first, sometimes I come first. We all just have to understand that things can't be the way they used to be, no matter how much we want it. Remember it takes time to make these changes. It doesn't happen magically or overnight. I made a lot of mistakes before coming to a situation that worked for me. You will also find your own solution to your situation. Hang in there. Renee M. Auntonay@prodigy.net


Sally's April 6 reply to Billie Jo's April 5, 2000 - Hi Billie Jo, Yes! Use the health rider. Stationary cycles were the first thing everyone in my cardiac rehab classes had to get on. Then we "graduated" to the treadmills. I try to use mine daily for at least 5 miles. I had to build up to that. I had actually begun using it prior to my CHF/cardiomyopathy incident last fall. I do feel more energy since using it on a regular routine. My EF by cath was 15% at diagnosis. With meds, diet, and exercise, my EF has come up to 40% by echocardiogram in February. I have to remind myself that there is "something wrong" with me and for that I am thankful. At least with the health rider, you can be in the room with your children. Try having them watch a video while you pedal away. I like indoor cycling since I am in an area with no sidewalks and it gets extremely humid here, and I am afraid of dogs even though I have 2 that live with me. I have a wonderful mutt named Curly and a Pug named Otis. They "ride" with me on the couch while I pedal, and follow me around while I do a little walk about the house for cool down. Best wishes to all, and thanks to Jon for such a great site! FunnyFarm50@hotmail.com
 
Jon's note: I wondered what a "Health Rider" was!


Renee M's April 6 reply to Rieale's April 4, 2000 - Hi Rieale, Jon is right about getting a lawyer for SSD. I tried to get it by myself at first and was rejected twice. I found a lawyer who was very knowledgable. He handled my case and I got my SSD after the hearing. With so many people trying to get SSD who really don't need it, it makes it almost impossible for those of us who really need it to get it without a lawyer. As for suing your doctor, you may have a really hard time. I have a wonderful, well respected and caring cardiologist that I had been seeing for 6 years before I found out I had cardiomyopathy. I had a left bundle branch block and tachycardia. I developed hypertension. At that time I had a complete cardiac work-up as well as renal tests. Everything came back normal. I was put on meds and it was another 6 years before the cardiomyopathy showed up on tests. My doctor didn't do anything wrong and I wasn't exactly misdiagnosed, but I still had the condition. Sometimes, you just have to do what you can in a given situation and move forward. Good luck. Renee M. Auntonay@prodigy.net


Renee M's April 6 reply to Terry's April 4, 2000 - Hi Terry, As I read your post, it reminded me of just how many times in the last 6 years I have wanted to stop taking all these pills (about a million times!). I used to work in a hospital doing tests on heart patients and I saw the results of what not taking those meds would do. Jon is absolutely right about what will happen. I have just resigned myself that I'm taking those pills no matter what I feel like. I have come to think of them as my "jump-start" for the day. If I don't take them, pretty soon I don't start very well and then, I may not start at all! <g> Hang in there and keep taking your meds. Good luck. Renee M. Auntonay@prodigy.net


Randy B, April 6, 2000 - Hi, I'm new here. I've been looking for a good message board for transplant recipients. I've had a heart transplant for 10 years (I was 21 years old at the time) and I'm due for a heart cath and biopsy in 2 weeks. I feel nervous about it although I haven't been in for a long time. I've been on Immuran for 10 years and just recently got switched to Cellcept a month ago. I was sick for the last 2 years with anemia caused by my Immuran. It took 2 years for the docs to figure this out. I was vomiting every day and lost a lot of weight too. Now I've gained 30 lbs back and have a voracous appetite. I'm concerned my biopsy might be elevated due to the switch in immunosuppressants, or that I might have some coronary artery disease, although I've never had any in the past. It's been two years since my last cath, and a year since my last biopsy. I have a feeling I'm going to be more sore in the groin than usual. Last time I bled so badly I ended up staying the night till they got the artery to clot.
     Anyway, I hope to meet some friends on this board and look foward to conversation. I also write a transplant newsletter for my hospital's heart transplant support group, called NuHeart News. I'm always looking for interesting news on the transplant front and good stories for my newsletter, so feel free to share any interesting experiences with me. Good health to all. Randy, #6 at Sutter Memorial Hospital, Sacramento, California, USA. buffhooxem@buffingtoneyecare.com


Joy S, April 6, 2000 - Hi, What should heart patients know before going to the dentist? What precautions should we take? Are there dentists who specialize in treating heart patients? Are we more likely to have general anesthesia for major treatment? Sorry to ramble but I'm gonna go to the dentist soon and I want to make sure he knows what he's doing as far as my condition is concerned. Any advice would be greatly appreciated. God bless, Joy.


Jon's April 6 reply to Joy S' April 6, 2000 - Hi Joy, I'm sure others can fill in what I miss on this one but here's what I know: If you have any valve backwash (regurgitation, leakage, etc), you should take a large dose of antibiotics just before and after a tooth cleaning or other dental work that may dislodge mouth bacteria, which then travels into your system via your throat. Talk to your cardiologist about getting a prescription for the antibiotics and instructions on when to take them. Recently the guidelines were changed and now, if you do not have valve problems at all, you usually do not get the antibiotics (unless you insist). Since most CHFers have some degree of valve dysfunction due to the stretching out of our hearts before diagnosis and treatment, most of us will get the antibiotics.
     On the comfort issue, I ask for "mouth blocks" during procedures like teeth cleaning, so I don't have to hold my jaws open so long, which really wears me out. These are just plasticky blocks that fit in the back of your mouth and "prop" your mouth open with no effort on your part. Other than these issues, I'm not aware of any special needs for regular dental work. If you are going to have more involved dental work done like tooth pulling or oral surgery, both you and the orthodontist should consult with your CHF specialist about special requirements. Jon.


Barbara P J, April 6, 2000 - Hi all, I've been responding privately to some of the posts and now have a question of my own. I applied for SSD last August, never hearing a word till a phone call about 3 1/2 weeks ago, with them needing to know if I had received any other treatment. I returned the call, giving them the name and address where I'm receiving rehab. Today I received a letter saying they have scheduled a "physical and tests" with their doctor for the 25th of this month. What kind of tests can they give for cardiomyopathy that have not already been done, and would they risk a treadmill stress test when my own docs don't do it that way? Thanks for any input and I would like to add that this site has been such an eye-opener for many people, myself included. I feel it and the people on it are one reason I'm doing as well as I am. Barbara P J. bpjohns@accessatc.net


Jennie O, April 6, 2000 - Hi everyone, You are doing a great job of reassuring me. I have my echocardiogram on April 12. When I know my status, I want to go home to my husband and business in Egypt. I'm English and now i the UK. I was drinking at least 5 litres a day before I read on this page about restricting fluid intake. This has helped a lot, but Upper Egypt is up to 120° in summer, it very rarely rains, the humidity is between 17 and 45, usually around 30. My husband just installed air conditioning in my new house, in the bedroom and my office only. Last year my bedroom did not go below 100° day or night for months. What do you advise? Jennie O. jenniehodhod@aol.com


Jana B's April 7 reply to Joy S' April 6, 2000 - Hi, Because some painkillers the dentists use cause your heart rate to go up, my dentist can't use certain painkillers on me. I don't know what he is allowed to use. My MD faxed the dentist which drugs to omit. I would put a call into the doctor's office before the treatment. JByers4u@aol.com


Tammy, April 7, 2000 - Hi, I have had recently have had 2 different diagnoses come back from 2 different cardiologists reading my echo. One said I had biventricular dysfunction suggestive of cardiomyopathy. Another read it and said that I have a normal echo reading in her opinion. My EF was 48% and the second cardiologist said that for me this could be a normal range. How can 2 certified cardiologists have different readings and is there any test I can request that can positively tell me what is going on with my heart? I have no symptoms of pulmonary problems or shortness of breath or swelling, and have normal blood pressure readings. What do I do? 4tlc2@excite.com


Pam E, April 7, 2000 - Hi all, I am going to have a repeat sestamibi scan (stress test). Has anyone had such a test with the injection of dyprid (persantine)? If so, how did it make you feel? Stressed out, Pam. gpcs@fastlink.com.au


Sandy W, April 7, 2000 - Hi, I'm 54 years old, a registered nurse with my specialty in the Operating Room, and newly diagnosed with cardiomyopathy. I've been seeing my 2 cardiologists and was fortunate to have met and be treated by a young doctor named Eric Pena. I am just so happy to have found this support group since I have trouble accepting my diagnosis and really do need help. I have not been compliant with fluid restriction or a low sodium diet but yesterday I got a 2 liter empty bottle and started filling it with equal amounts of the fluid I was taking. To my surprise, I had about 8-12 oz left in the bottle.
     Sodium is my biggest problem. Up till now I've basically been cooking without salt and throwing the salt shaker out the window. I know that is not enough but I am a person who salted my food before tasting it so I am reluctant and strong-willed about it. Just hearing different testimonials from this group makes me want to change my bad habits. I have been in CHF twice, mostly when I was diagnosed with myocarditis, an acute illness. I take Demadex, Accupril, Lanoxin, an aspirin and Aldactone. My doctor told me to file for SSD and I've been told that my claim will be denied the first time. Does anyone know if this is true?
     I should probably tell you I have mitral and tricuspid valve regurgitation and a chronic Left Bundle Branch Block. My doctor has suggested that I have an ICD but I am reluctant to do that. I am planning a road trip from Las Vegas (where I live) to Kansas City, Missouri, where I am originally from. My sister will fly out here and help me drive to Kansas City. Does anyone see a problem with that? The 2 times I have been acutely ill to the point that I welcomed death was when I had myocarditis. Both times I had traveled via airline. I welcome any suggestions from any of my soulmates. I'm departing April 19 from Las Vegas. I was diagnosed with Cardiomyopathy January 20, 2000. Another problem I have regarding medication is the diuretic. Lasix did not work for me and the Demadex is not a whole lot better. I tend to have ascites instead of lower extremity edema. Please help! I have been told not to exercise. Sandy W. SSWVEGAS@aol.com


Thelma C's April 7 reply to Sandy W's April 7, 2000 - Hi Sandy, Welcome to the boards from a fellow RN. My specialty is NICU and Peds. I was diagnosed this past summer with IDCM just prior to a big move from Arizona to Nebraska. After I was DC'd from the hospital in Arizona, I stayed at a friend's house for 2 weeks until my aunt flew in to help me and my dog drive to Omaha, where I now live with my father. With the ok of my cardiologist, I drove back with my aunt and didn't have any problems. We did avoid the mountains and took our time. I drove some of the way and did ok. My suggestion is to have your sister lug all the luggage in and out of the car to the motels. You shouldn't do any heavy lifting. Take your time and don't push for 18 hour days, etc. The secret is to pace yourself.
     As far as the low sodium diet, it will always remain a challenge to me since I'm used to eating fast food. You can get a lot of info by reading all Jon has to offer on this site. As far as exercise, I can't stress enough the importance of a cardiac rehab program. They will guide you into the appropriate exercise and monitor you for any problems. As many people on this board can attest to, exercise makes them feel so much better. Talk this over with you physician. Like you, I'm also supposed to look into an ICD. I'm not sure what I'm going to decide. Good luck to you. Thelma. tcull@prodigy.net


Bill D's April 7 reply to Pam E's April 7, 2000 - Hi Pam, Whenever I get a nuclear test, I get Persantine. It's because I am on a beta-blocker and there is no way for me to get my heart rate up to where they want it for the second round of pictures. I like persantine! <g> It's better than running on the treadmill and not getting anywhere. I never notice any effects from the drug. Don't be stressed, there's nothing to it! Bill D. billdog@gate.net


Jeanette's April 7 reply to Joy S' April 6, 2000 - Hi Joy, I just had an experience with going to the dentist. The first thing to do is make sure they know your condition! I have DCM and have to be on antibiotics for 3 days before any kind of dental work or cleaning is done. Make sure that you get a dentist who cares about you and won't make you feel like a number! It is very important they understand that you could get an infection. I just had 2 teeth pulled Monday and was awake; I didn't take any chances. I told them what meds I was on and the dosage. Most dentists will be alright about your condition, but there are some out there who just don't care who you are or what you have. I fell into a great one at my local hospital, believe it or not. I didn't even feel a thing, which is very important to me cuz I'm a coward! <g> Ask questions; don't just let them take over and make you feel you aren't even in the room. You are in charge, not the dentist. By all means, if you have any pain, let them know immediately, for your own safety and comfort. Take care and good luck. I'm praying for ya. If you have any more questions, e-mail me and I will be glad to help. Jeanette. jeanette@93qmail.com


Joe S' April 8 reply to Sandy W's April 7, 2000 - Hi Sandy, Thelma's answer about traveling covers almost everything. There are 2 more things that might help. Visit a chiropractor and buy one of their special back supports. They sure make long trips a lot more bearable. Second, take frequent rest breaks and walk around. If you keep your back in alingnment, everything will go better. Joe S. jes@stevensonlighting.com


Marty's April 8 reply to Jeanette's April 7, 2000 - Hi Jeanette, I was interested when I read your post on denistry and DCM. I have had DCM, CHF and a-fib for 2½ years and my doctor told me I do not need pre-medication prior to teeth cleanings. I have had my teeth cleaned at least 4 times since my illness. I am wondering what is the correct view? Should DCM patients be premedicated prior to dental work? I wonder what anyone else out there on Jon's Place has been told about this subject as I am sure we all care for our teeth. Thanks! Marty. MartinBK@aol.com


Linda G's April 8 reply to Joy S' April 6, 2000 - Dear Joy, Jon is right that if you have any kind of valve problem (regurgitation, replacement, etc) you must take antibiotics before any dental treatment. This includes even a simple cleaning. Having an infected valve is very serious and a person would have to be on intravenous antibiotics for at least 6 weeks in the hospital for one. Make sure the dentist does not use epinephrine or caffeine in the local anesthetic. They are stimulants that speed up the heart. There are painkillers like Tylenol with codeine that do not have caffeine in them. You specifically have to ask for the no-caffeine Tylenol because most doctors routinely prescribe the type with caffeine. An oral surgeon is a safe place to have dental work because they have oxygen, heart defibrillator cart, and other life saving equipment for those at high risk for complications, like those with CHF. It's comforting to know this equipment is available if needed. Best of health to you. Sincerly, Linda G. a3a65689@telus.net


Billie Jo's April 8 reply to Sandy W's April 7, 2000 - Welcome Sandy, You've come to the right place for straight answers, advice and support. About the travel, I personally don't know. Maybe someone else will. You should definitely first check with your doctor. About SSD, read Jon's SSD page. It's very informative. Also see The Archives from March 1-15 about "the disability process." I found that to be very true but it does depend on where you live. I've found the most important thing is the way your letter from your doctor is written (explained on Jon's SSD page). I was denied my first time around and am currently waiting on appeals, and hiring an attorney. If I had known at first what I know now, I might not have been denied for I would have had my doctor write his letter the correct, indisputable way. He is behind me 100% and said he'd even go to court for me if it came to that!
     About the sodium, don't lose heart. Check out Kitchen Corner and really do write it down! I did very good at first, but then got lazy about it and thought I was doing good, but after checking it out (after the fact), I was way over my sodium count. Like you, I used to salt everything and still after 5 months crave salty foods but you learn how to satisfy your cravings with low sodium substitutes. Take care, Billie Jo. billiejoconley@aol.com


Brenda G's April 9 reply to Joy S' April 6, 2000 - Hi Joy, I have recently been to my dentist and found that the guidelines had been changed, like Jon said. The National Heart Foundation of New Zealand had upgraded the listing and anyone with valve replacements, which I have, are classed as high risk. I therefore needed to get an antibiotic by injection or IV one hour before any work was done. I needed to have my teeth cleaned but still needed the antibiotic. Previously I would have had a high dose of antibiotic orally one hour prior and also 4 hours later. The dentist explained to me the upgrading of the guidelines and showed me the pamphlet. The upgrades of who needed antibiotic treatment and how they were administered were made in June, 1999. I spoke with my GP and my dentist before my treatment and they were both helpful. It was a learning curve for all of us, but we all had my best interest at heart when making decisions to use antibiotic. b.e.george@inet.net.nz


Renee M's April 9 reply to Barbara P J's April 6, 2000 - Hi Barbara, I received my SSD after much to-do and 2 years of waiting. My 3 year re-evaluation arrived before I knew it. I also received a letter informing me that I was to have a physical and tests from their physician. My doctor did not want me to go, but Social Security wouldn't budge. I was worried about it. Since I had no choice, I resigned myself to it. The doctor they wanted me to see was not even a cardiologist! All the visit involved was a general physical and a breathing test. He asked me a lot of questions and that's it. In 2 weeks time, I got a letter continuing my SSD. Go to their doctor and be cooperative. Say whatever you need to say that explains your situation. Even if you're feeling good that day, give them information like it's your worst day because that's what you have to deal with. If the SSD doctor would want you to have any kind of stress test, check with your cardiologist first. That way you can feel more comfortable with it. I hope this helps you out. Let me know how it goes. I'll be thinking of you and saying a few prayers too. Renee M. AUNTONAY@prodigy.net


Barbara ?, April 9, 2000 - Hi, I am writing for the first time to ask how everyone copes with the ignorance of people in how they talk to you about congestive heart problems. I am tired of how ignorant people are in the medical profession, treating me as if I have had a heart attack. My nerves takes a beating by keeping quiet, because I know that they don't have the least idea what we go through and what we have to do for our care. Does anyone else experience this type of problem? I just had to sound off about this, because it gets on my nerves! Thank you. chnabby@aol.com


Madelyn J, April 9, 2000 - Hi, Long time, no write. I have gotten too busy in the last 6 months with volunteer work and a new part-time job. Also, I have had many problems with sleepiness from Coreg and worse effects from trying to replace it with Toprol (metaprolol). Has anyone else had problems with chest pain when they tried Toprol? It felt like the blood flow in my heart was being clenched off - no sudden pain, just a steady pressure.
     Also, through the last 6 months, I've had trouble with annoying weakness and heaviness in my upper arms. I am not retaining any extra fluid according to the scale but now I fear my annual echo next week. I guess any feeling of weakness scares us about our hearts degrading. Well, I hope more outdoor activities in the warming weather will ease some of this. I appreciate any comments on these symptoms. madelyn29@juno.com


Linda O's April 9 reply to Sandy W's April 7, 2000 - Hi Sandy, I think you have been advised of most of the important tips when traveling. My cardiologist did suggest that I stay in bigger cities at night when I traveled. You are coming at a pretty time of year and hopefully will not have to worry about snow and ice; that is always stressful for me. I admit, I am a weather wimp. Have a great time. Linda O. norvalo@clarinda.heartland.net


Joy S, April 9, 2000 - Hi, Thanks for all the responses regarding a dental visit. Some of these things never would have occured to me. Thanks and take care, Joy. enjoy2@yahoo.com


Jamie S' April 10 reply to Barbara's April 9, 2000 - Hi Barbara, Educate yourself, then fire the information at the doctor with both barrels; then get another doc. When I had to get a new primary doctor, so that he could write my prescriptions for Coumadin and Coreg, he was so ignorant. He was really resistant to me knowing more then him so I left him. If you can't up and find another doctor, then stand tall, proud and steady with the information that you know about your body and your condition. If you feel that you like the doctor for the most part but he isn't doing well in the talking department, then maybe try to talk with the nurse or find other support so you can let off steam. Post here more often. :-)
     I had to deal with friends and family thinking that it was something I did that was totally preventable. With my family, I took into consideration what sort of communication they were receptive to and I slowly educated them. It was more effective then my first attempt of telling them as I sat in the hospital. Sometimes it takes awhile to sink in. I think I have just crossed the line to babbling. Be well everyone. Jamie. JamieDan@prodigy.net


Gus R's April 10 reply to Madelyn J's April 9, 2000 - Hi Madelyn, As you know, we are all different and one should not make any alterations in their meds without the approval of their dox. That said, I would like to say that Toprol XL caused me more problems than it solved. I took it for 16 months and those months were among the worst I've had with CHF. Being the nutty old grump that I am, I never did stay long enough at the dose the doc wanted, to be sure if that would work but I was firmly convinced that the recommended dose would have killed me. Like you, I had chest pains (more and worse than usual) but my biggest complaint was palpitations. About an hour after taking the med, each heart beat would make me feel from the top of my head to my belt line, like a big kettledrum being banged with a cave man's club. At times I swear my whole body would jump in time with the heart beats. I'm now nuttier, grumpier, and much shorter-fused, so the last med that didn't agree with me was history at the end of week one. I'm not suggesting that you become nutty and grumpy like me, but a good old chinwag with your dox about Toprol does sound like a good idea. Best wishes, Gus R. gus13@net66.com


Jack, April 10, 2000 - Hey guys, You need this web site. You plug in all your meds and it tells you about any problems you might have taking them together: http://www.ditonline.com/. It only works with drugs. It doesn't lay out any of the many problems that can occur when you take herbs. Jack. maddjak@hotmail.com


Billie Jo's April 10 reply to Barbara's April 9, 2000 - Hi Barbara, Yes! I know how you feel about the ignorance of others. It's not just in the medical field. I have to deal with it in my own home! My father treats me like a rare delicate porcelain vase or something. He won't let me lift a finger when he's around. My husband refuses to treat me as if I'm sick at all and actually gets annoyed when I prepare a separate low sodium meal for myself or take my meds at the dinner table. he says I am being fanatical about the "no salt" and that it's not going to kill me to eat like I used to eat. Then he tells me to take it easy if he notices me trying to do something I shouldn't! I think denial must be his way of coping. Some of his friends have actually tried to set him up on blind dates so he'll have a replacement for me when I die! I believe all people who have any contact with heart patients should visit this site and become enlightened on what we really go through. I think that would erase a lot of the ignorance on other people's part. I'm sorry everyone, but this hits a raw nerve with me and I had to sound off! Be patient Barbara, and try to find forgiveness in your heart. That's what I do. Billie Jo. billiejoconley@aol.com


Jeanette's April 10 reply to Sandy W's April 7, 2000 - Hi Sandy, I fortunately didn't get denied the first time on SSD or SSI. Some do get denied, but you should keep working at it until you get it. I have CHF and DCM and only had to wait the initial 6 month waiting period and my check was out to me immediately. I have been on it since October of 1998 and what a blessing it has been. I don't know why I was so fortunate but I thank God every day for it. I can't work or do anything because of this nasty disease but I make every day count as if it were my last. If you are having trouble with SSA, contact a lawyer who specializes in this type of work and go after them. Also, Jon has a page that you need to read. It gives you more information than I could ever write. Jon, could also give you more info on this if you ask him and may point something out I missed. Good luck and I am praying for you. We are all family here; welcome to the family. I don't know what I would have done if I hadn't found this site. Jeanette. jeanette@93qmail.com


Jeanette's April 10 reply to Marty's April 6, 2000 - Hi Marty, That is a very good question to ask. I have spoken to my CHF specialist and cardiologist who feels that by me being on antibiotics a few days before dental work of any kind is a precaution. Your cardiologist should be aware of your visiting the dentist before you go, so you can talk with him about what you are having done and what would be good for you. If I were to get an infection, I would be in serious trouble. My EF is only 20% and I am not able to fight off infections like a normal person would. It is generally up to the cardiologist and CHF specialist but my doc tells me that all his patients get meds before dental work and feel all of the rest of their colleagues should take that precaution. It's my view that an ounce of prevention is worth a pound of cure. Thanks for asking, Jeanette. jeanette@93qmail.com


Jon, April 10, 2000 - Hi everyone, Please don't forget to check the Loved Ones' message board and respond to anyone who needs info or help there. It's really important! Thanks, Jon.


Jerry V, April 10, 2000 - Hi, One thing nice about this forum is the diversity of the information you get. I was on Coreg for 19 months and experienced real problems sleeping. After switching to Toprol XL I am now sleeping like a baby, have more energy, am less depressed, and am not tired all the time. I'm sorry to hear others had trouble switching to Toprol but apparently it doesn't have a negative effect on everyone. jerry@pcisys.net


Bev K's April 11 reply to Gus R's April 10, 2000 - Hi Gus, I'm sorry to hear of those of you who are having such a rough time with your medications. I guess I am one of the lucky ones. I have been taking Toprol XL since last September and haven't had any problems with it at all. My doc increased my dose of Imdur a while back and it caused problems for a couple of days but it is ok now. I sure hope he doesn't decide that I need to take anything else. I feel like a walking pharmacy now! Caprice58@aol.com


Ginger, April 11, 2000 - Hi guys, I got this e-mail and wanted to share it with all those who are linked to me and to whom I am linked. I thought the e-mail was cool. More and more work and care is being put into CHF patients and it's about time, huh?!

     "Dear Ginger, I am a pharmacy student working toward my doctorate degree. Some classmates and myself will be making a presentation to our class about CHF. Because our school is so technology-orientated we are going to provide web sites students can give to their patients with CHF. I wanted you to know that yours is the one I chose for a patient-related site. You have great links! Keep up the great work. Marisa."

     A few weeks ago I told Jon I sometimes have trouble finding reasons to get up in the morning and keep on going after what my family has, and is again, going through. I guess my reason is to be able to help people. Jon basically told me that himself, and that God would help me. Well maybe this was the push I needed to get off my pity party and back to working on my web site, huh?! Anyhow, thanks for letting me share and ramble on, guys. I love you all. Stay well. :-) Hugs, Ginger.
PS. Please keep my brother Jack in your prayers. His surgery is the 24th. mystery@laker.net


Suzy B, April 11, 2000 - Hi, I just found this link browsing other links this morning. I am a 46 year old married mother of one grown son. I have been sick most of my life with heart problems: a-fib, dilated cardiomyopathy, sudden death syndrome, and CHF. I just had my third pacemaker implanted February of this year. I have complete heart block and other health problems too. My doctor said I need a heart transplant but I am not "sick enough" to get on list yet. My EF is less than 50% at last testing in August of 1999. I am scheduled to be tested again in July. I have had 2 previous heart attacks. I am interested in knowing how others cope with similar problems. lookn4aheart@yahoo.com


Jana B, April 11, 2000 - Hi, I went to the site Jack recommended. It said I shouldn't be taking Coreg with Lanoxin, but didn't say why. Any suggestions? JByers4u@aol.com


Jon's April 11 reply to Jana B's April 11, 2000 - Hi Jana, I didn't check out the web site mentioned but the official CHF treatment guidelines say that you should be taking these 2 drugs, as well as an ACE inhibitor and diuretic. I quote: "Digoxin should be used together with diuretics, ACE inhibitors, and beta-blockers." Jon.


Tim B, April 11, 2000 - Hi, I need your prayers. Last Tuesday my doctor told me and my wife that with the way things are looking I may have 3 to 6 months to live. Last week I swelled up to a whopping 345lbs. Five days with IV meds got me down to 295 lbs. So here I am at 305 lbs and swelling again. I watch my intake but the doctor said that my heart is so weak that it cannot do it's job, therefore shutting down my kidneys. Spiritually I am ready to go but it's hard to see your family grieve at your loss already. I know what they are going through and it makes me feel like I'm the cause. I don't like the feeling. I need some feedback so I can try to get an understanding in and on what is right.
     I love to write poetry. If anyone would like to read some, please e-mail me and let me know. God bless us all. Love In Christ, Tim B. b072248@wctc.net


Barbara S' April 11 reply to Tim B's April 11, 2000 - Hi Tim, I would make a choice to fight back. Use as much energy on the computer to research where you could get help with an artificial heart. I know there is research in places that might be willing to help you. It would make you feel better knowing that you have tried everything you could. As far as what the family goes through, I feel that they will benefit from knowing you. You sound like a good person. How fortunate they are. Hopefully I do not sound like a know it all, but it is amazing to me how God can provide us with the tools to pass along good vibes on the family. Love is the most powerful emotion in the world. Thank you for being a good person. Chnabby@aol.com


Rieale's April 12 reply to Jana B's April 11, 2000 - Hi Jana, I also checked out that site and my results from it were scary enough for me to phone my pharmacist. I take K-dur, Lanoxin, Accupril, Lasix, Coreg, Aldactone and Coumadin. He said that the only worry is between Coreg and Accupril, which I already knew. Those two should not be taken near each other. I'm sure that site can be a lifesaver, but they may not be up-to-date on CHF meds specifically. The best advice can only come from your doctor and pharmacist. Rieale@aol.com


Billie Jo, April 12, 2000 - Hi everyone, I'm still fighting for SSD. I met with a lawyer yesterday and actually feel more confused now than before. He feels that I have a strong case but since I was denied once, will most likely be denied again in appeals; therefore it would be best to hurry through that stage to get to our day in court! I thought that's why I was hiring him so it wouldn't go that far. He also read me the standard written in the "law" books. Any such person having cardiomyopathy with an ejection fraction of 30% or less automatically qualifies! Mine was only 10% when I applied but is now up to 30%, so I am really curious why I was denied.
     He also said that there are automatically no benefits for the first 5 months of a Disability. I was under the immpression that I would be paid back pay from the moment I became sick and applied for SSD. So I've been expecting to be paid back from December of 1999 when I was first sick up to the present, but the lawyer said no. Even if approved right away, my first check doesn't come till 5 months into my disability. Is this true?
     Also, I've been offered a census job and thought about trying it out and seeing if I could do it. I asked the lawyer if it would endanger my chances at SSD. He spoke harshly to me and asked what I was doing in his office fighting for SSD if I felt well enough to even consider doing any sort of work at all! Has anyone else had similar experiences with attorneys? He did take my case and explained exactly how to fill out the appeals form and is writing to my doctor to explain how to word his letter. I am not a very trusting person. Am I being silly or just cautious?
     I am feeling discouraged and need some kind of money coming in soon or we're gonna lose all we've fought for. Creditors are bugging me on a daily basis. Some days I feel as if my life is pointless now that I'm not a breadwinner any more, I don't have the energy left to keep the house spotless and be the perfect mommy and homemaker, so what am I besides a burden to my family. How do I get out of this deep blue funk? Billie Jo. billiejoconley@aol.com


Pam P's April 12 reply to Tim B's April 11, 2000 - Hi Tim, The poems you've sent are beautiful. They've blessed me tremendously. Please continue to write and send them. Our prayers are with you and your family as you try to deal with the information your doctor has just given you. Again, thanks for the beautiful, uplifting poems and continue to do the things you love. PammyPanda33@aol.com


Ginger's April 12 reply to Tim B's April 11, 2000 - Hi Tim, You don't ask easy things <g> but Barbara is right: fight back! Find out where and how about the artificial heart thing also what about the new left ventricular assist device they are having some luck with on patients waiting for transplants? What your family feels is helplessness. Let them help you look into some of these options. Even if they don't workout, at least they have the feeling of having helped to do something. I say this from what I felt with what I went through recently. I bet one of the places to look for some of these up to date things, Jon could help tell ya where. I know false hope is not a good thing but neither is the feeling of doing nothing. As far as your poetry, I would love to read some, so e-mail away! :-) Tim, if any of us here can help in any way, we would be glad to help. Just know that. Hugs, Ginger. mystery@laker.net


Jan, April 12, 2000 - Hi, We talk a lot on this web site about coping with our CHF and other heart ailments, but not too much about how we and our families are coping and preparing for dying. I just want to reccomend a web site I found on improving the care of dying in America and about a 4-night program that will be on many PBS TV channels this September 10-13. The programs will be moderated by Bill Moyer and is on Dying in America. The web site is here. The "on our own terms" stands for people being able to express what is important to them and their family when dealing with life threatening illness and issues of dying. The site has a leadership guide to help people work together in their communities on improving end of life care. This document includes a lot of reference sites for organizations and programs that deal with life threatening illness and support for those affected.
     I think the attitudes shared here about being an educated patient and speaking up to your doctor, and how we help one another by sharing our successes and difficulties would be helpful additions to the discussion. I encourage others to visit the site and share with me and others how you feel about it. My diagnosis is CHF, A-fib, RFA and pulmonary, restrictive-obstructive disease, I'm 55 and on SSD, my body gets tired a lot but my mind keeps racing. Jan S. geschuppja@aol.com


Jon's April 12 reply to Jan's April 12, 2000 - Hi Jan, It's easy to forget but this web site includes a page dedicated to caregivers, families and how they cope with the illness of a loved one. For some reason, very few CHFers ever become regulars there; something to think about, especially since the people who post there have a unique perspective to offer us which we do not have ourselves. Jon.


Pat L's April 12 reply to Jana B's April 11, 2000 - Hi Jana, When I was initially on Coreg and increasing the dose, I started having side effects like extreme tiredness, to the point of falling asleep sitting up. I also had headaches. After a few months my digoxin level was measured and found to be way too high. The nurse said Coreg increased the intensity of digoxin in my system, so my digoxin dose was cut to 75% of the initial dose. Has your digoxin level been checked? Pat L. patlat@yahoo.com


Pam E, April 12, 2000 - Hi All, For those who go through persantine testing and come out fine, I congratulate you. I will never go back again. The headache was nothing; the chest pain was crushing and continual. The general feeling of doom was overwhelming. They had to reverse it prior to the scan and they repeated this again later in the evening. It was the first time I have been told to drink Coke or coffee and I drank 2 pints to no avail. Sorry to sound so down but this was a horrible experience for me. Pam E. gpcs@fastlink.com.au
 
Jon's note: Pam, we need as many sides to every story as possible!


Tim B's April 12 reply to Barbara's April 11, 2000 - Dear Barbara, Thank you for those kind word. You also sound like a very nice person and well, you are, because Barbara is my beautiful wife's of 33 years name also. You asked about a transplant for my heart. I was on the list at Rochester, Minnesota, for about a year. During this time I developed diabetes very badly and I take 2 shots per day. They took me off the list after their yearly stats came in and I was released because of the diabetes. They said I would probably never heal back up, would be infection prone, and that after I had my third by-pass surgery, I did not heal up from the scar on the chest for 7 months and 3 skin grafts on the bend of my leg. They finally healed in 13 months. I have too much scar tissue. So you see, I have pretty much ran the gambit on what is left and there's only one answer, God. All good things come in God's own time, and He will never give you more than you can handle. Jesus is my peace, forever. God bless everyone and their families who come here. Love In Christ, Tim Brownie. b072248@wctc.net


Jon's April 12 reply to Billie Jo's April 12, 2000 - Hi Billie Jo, About SSD, you should give the SSD page a read. Then, you should fire your attorney and get another one. <g> I want to state some general truths as I understand them about SSD. If anyone can point me to materials that show these things to be wrong, I would really appreciate it, since I don't have enough time to research everything I would like to know about.

  1. Laws and Disability "standards" vary from state to state. What is true in my own state is not true at all for SSD in a state only 20 minutes away. That's why if you want to say that something is a standard for Disability, you need to say what state it applies in!
  2. EF is not always a magic key to unlock the SSD door. In my own state, EF has no bearing whatsoever on your qualification for Disability. My doctors told their CHF patients - including me - that an EF of 30% or less qualified us automatically for SSD but they were wrong! So please do not trust your doctors about these "standards." Doctors are not lawyers and they do not take the time to be accurate in everything they say. Often, they are plain wrong. Be sure your attorney shows you your state's standards, like Billie Jo's lawyer did
  3. I was turned down with an EF of 13%. According to my attorney, my state has an unwritten policy of turning down all applicants for Disability the first time. Period. The first application rejection rate in my state is 96%, so I believe him. Remember that you are dealing with a government bureaucracy. They may technically work for the taxpayer but they don't care. They will do whatever their superiors tell them to do because that is how bureaucracies function - slowly and inefficiently. It's the nature of the beast. Besides, they see so many lazy, nasty free-ride seekers that it would make cynics of anyone in their shoes, I expect. So do not expect to be treated fairly. It could happen but don't count on it.
  4. Benefit checks are withheld for the first 6 months after you "became" disabled. Your first 6 months are withheld so that they can be paid to you if you ever go back to work: to tide you over in your return to the workplace. Of course, the real reason is to discourage fakers, but this is the official line. <g> It often takes a year or two to get Disability so you do usually get a big first check. Your first check will be for the period from the day you became disabled to the day you were approved for Disability minus 6 months withheld. If it took you 18 months to get your SSD approved, you would get one year of "back pay" on your first check. If it took you 2 months to get approved, you would have to wait 4 months to get your first check, which would be for one month's Disability benefits.

     So there are benefits from the first day you become disabled; you just cannot collect the first 6 months worth unless you go off Disability. I hope this helps. Feel free to correct me or ask more questions. Just remember that I didn't make the system, I just try to explain it! As for attorneys, Billie Jo, yours has a bad attitude. Lose him today. Quick. No kidding. Get yourself another one before this one does enough work to claim you owe him money even if you fire him.
     As for your depression, I have few questions for you, Billie Jo. First, are you always called Billie Jo, or is it ever just Billie, or Jo? Are y'all from the deeeep South? I thought your name was supposed to be Bobby Sue and your husband's name was supposed to be Billie Jo. <g> If you tell me your husband's name is Billy Bob, I'm gonna lose it! :-) Oh well, I like your name, but back to the topic at hand.
     Who are you? That's a question we all have to face when our lives drastically change. Are you your job? Are you your family? Are you your physical abilities? Work skills? Hobbies? Are you what your friends think you are? What your pastor thinks you are? What your family thinks you are? I think we are all of these things but they are all only bits and pieces of who we really are. We are quite capable of rearranging pieces and losing a few here and there, maybe replacing them with new pieces, maybe rediscovering old pieces, whatever. We are more than the sum of our parts. We have spirit and a soul, so losing physical bits and pieces or occupational or emotional or other bits and pieces does not reduce us to nothing. We can survive even drastic changes in our lives and in our families and in our world. The trick is to have something to base it all on: a foundation. With a sure foundation, one can build any structure from a mud hut to a castle, depending only on what we wish to build. Do you have a foundation? Mine is Jesus Christ; you must choose yours. What do you want to build, Billie Jo? Look forward, not back. Forward is where your life is. Jon.


James' April 12 reply to Suzy B's April 11, 2000 - Dear Suzy, I also have had at least 2 verified heart attacks. I have had bypass once. I have been told I need a heart transplant also. I expect to be put on the list in a week or less. My EF is 23%, so I am unable to do much physically any more. You've got to hang in there and listen to the doctors but you've also got to read up on CHF and the meds. Don't be afraid to tell the doctor how you feel, even if you think it's insignificant to them. Sometimes I even make suggestions and they usually go for it; at least for awhile. I'm not trying to push religion on you but please pray every day. Others out here will pray for you also. I know that prayer works. Otherwise, I don't think I'd still be here a lot of times. This is a good place to post questions. I've found answers here that nobody else could answer. If you're like me, I have questions on my mind when I go to the doctor, then I usually get some bad news and totally forget to ask my questions. God bless you, James. driver@azone.net


Jack, April 13, 2000 - Hi, The drug interaction site only recommends you talk to your doctor before mixing specific drugs. In most cases your doctor already knows what the interactions are and most likely has those effects in mind when he prescribes the meds. This site is pretty much for those "self-medicators" and the ones who neglect to inform a "different" doctor about the meds they are already taking. If you are on a specific regimen, then you are on that regimen for a reason. So the site really serves to point out that a little knowledge in the wrong hands can be dangerous. Jack. maddjak@hotmail.com


Rick M's April 13 reply to Rieale's April 12, 2000 - Hi Rieale, I want to second your advice on not taking Coreg and Accupril together, or even near in time. After a severe bout of low blood pressure, I started taking my first Accupril at 6:00 AM, my first Coreg at lunch, my second Accupril at dinner, and my last Coreg at midnight with a bran muffin. This has worked like a charm for me and it certainly keeps me on my toes. rearadml@iu.net


Suzy B's April 13 reply to James' April 12, 2000 - Hi James, Thank you for responding. I had an emergency visit yesterday to my CHF clinic and it turns out I have an upper respiratory infection on top of everything. I also found out that I was given the wrong EF numbers. It seems I am at an EF of 30%, not 50% as I thought. Unfortunately someone didn't read far enough in records to give me the correct answer. So now I am depressed because I thought, gee, 50% isn't that bad. Oh well, anyway, I tend to talk to God more now just asking for strength to get through every day, thanking Him again every day that I wake up. I am on Coreg, Zestril, Lanoxin, warfarin and 400IU vitamin E for my heart; and Elavil and Lioresal for nerve damage caused by blood clots; Lomotil for IBS; and one gram calcium daily. My doctor and I are hoping the combination of Coreg and Zestril will raise my EF. Only time will tell. Keep in touch and take care, Suzy. lookn4aheart@yahoo.com


Kim's April 13 reply to Jon's April 12, 2000 - Hi, After being diagnosed with CHF (dilated cardiomyopathy) in February of 1999, I applied for SSD at my cardiologist's advice. My EF was 15%. He had also written me out a form which stated that I was totally disabled and I would never improve. My SSD was approved and I received my first payment, which was for September in the latter part of October. I also was approved for disability payments through my employer's insurance.
     Now, a year later, I have had my second echocardiogram which showed my EF up to nearly 40%. My new cardiologist (my last cardiologist moved to another state to further his career) has entered into my medical records that I can now return to work as long as I keep it part-time and take several breaks daily. My disability insurance states I am no longer "disabled under their definition" and my payments will stop. I'm worried that this will also affect my SSD. Truthfully, I don't feel capable of trying to go back to work yet. Besides, who will hire me, especially under conditions? I was on cloud 9 when I received my echo results, however I am worried about the financial end of things. I'm afraid that if I lose my SSD benefits and find a job somewhere, what if I become worse again? What will my chances of receiving disability benefits again be? Will they tell me I was well enough to work, so forget it? Has anyone else had a similiar dilemma? Please don't misunderstand me, my health matters the most to me. I don't mean to sound like the disability payments take priority over my health or anything like that. kimsaheim@yahoo.com


Jon's April 13 reply to Kim's April 13, 2000 - Hi Kim, This is a very legitimate concern, especially in a work place so driven by the cost of health benefits. We have to virtually surrender the very health insurance that keeps us well enough to work if we are to be well enough to work. No employer wants to hire a serious health insurance liability like a CHFer! Take a look at the EF section which is now much more comprehensive thanks to Gino's extensive efforts to help me explain a difficult situation.
     If I were you, I would push for a Vo2max test, which is considered a more definite indicator of heart and lung health than EF. It will give you a better idea of what you can really do and it will also provide a more reliable measurement for the SSA should your benefits come into question. It's an expensive test so be sure it's covered by your insurance! Please get back to us on this because it is an issue I rarely talk about but which is always on my mind since Coreg started raising EFs without always improving out ability to function. It sort of places us in a Catch-22 with insurance companies of all flavors. Jon.


Kim's April 13 reply to Sandy W's April 7, 2000 - Hi, Regarding traveling, my cardiologist suggested I obtain a copy of recent medical records, just important info, not every little detail, to carry along with me when I travel. It took only a simple phone call, didn't cost me anything, and I received them promptly. All I had to do was sign for them. It's just to be on the safe side, in case anything would happen wherever you would be, they would have an idea of your health history, the meds you are currently on, latest lab test results and so on. kimsaheim@yahoo.com


Randy B's April 13 reply to Tim's April 12, 2000 - Hi Tim, I was so sorry when I read about your diabetes. It's really too bad when there are obstacles in the way of transplant. I've known a couple of transplant recipients who had cancer earlier in life but were in remission so they were transplanted and within a year the immunosuppressive drugs lowered their immune system enough to let the cancer come back and kill them. They could not have any treatment for cancer done like chemo or radiation. I know that your faith in God will help you deal with this. Again I'm so sorry.
     James, I surely hope once you get on the transplant list that it doesn't take long for you to get a new heart. You'll feel so much better and be able to exercise. It's one of the most important things after transplant, along with properly taking all your medications at the right time. If you need any support at all, feel free to e-mail me. I've had a heart transplant for a decade and I've been through most of the problems one would expect. I wish everyone on this board good health, Randy. BStriperslayer@aol.com


Jan's April 13 reply to Jon's April 12, 2000 - Hi, Thanks for posting the Url and thanks also for the reminder to visit the other section for families and support persons. I do visit it from time to time and hadn't been there for a while. I visit this site almost daily and I am very impressed by how active the site is. You do a great job. I think the people that come to this site and the family site have such rich insights that they would be very helpful to the large group of health care professionals involved in the Moyers campaign for improving care for the patients and families dealing with end of life issues. Thanks again, Jan S. geschuppja@aol.com


Ruth, April 13, 2000 - Hi, Perhaps someone out there knows the answer to this question. Is it possible to recover from congestive heart failure? I was diagnosed as having this in 1989 and have been taking numerous medications. I recently had another echo and my new heart doctor says that there is no indication of heart failure now. She tells me to see my primary physician for changes in medication which I will soon do. I had always understood that once you have this disease, there is no recovery. clancyu@pacbell.net


Jon's April 13 reply to Ruth's April 13, 2000 - Hi Ruth, Have you read the long intro to The Manual? If so, let me know, and I'll try to rephrase it. Jon.


Kim, April 13, 2000 - Hi, There seems to be sooo much information out there regarding vitamin supplements. How does a CHFer know which ones are beneficial, which ones to avoid, and whay dose to take? Help! Does anyone have any suggestions or advice? Thanks! :-) kimsaheim@yahoo.com


Cherita A, April 13, 2000 - Hi, I am a 28 year old female. I just had my first child; a baby girl, 2½ months ago. Earlier this week, I found out that I have a "weak heart" also known as congestive heart failure. I was really shocked, extremely scared, and totally confused. I still am. I go back to the cardiologist next week and every day I come up with new questions for the doctor. Maybe someone can help.

  1. My doctor told me that during or just after pregnancy, the heart gets weak. Why?
  2. Will it go away?
  3. Am I burdened with this condition for the rest of my life?
  4. Will I be able to have any more children? What are the risks?
  5. What will my future be like?
  6. What about my current activies and work? I am a high school teacher. Will I be able to continue to teach?
  7. How does this happen to a 28 year old?

     I know I am rambling but I have so many questions and it seems as if the answers that I get just raise more questions. Please help! Cherita A. dabneys@bellsouth.net


Suzy B's April 13 reply to Barbara's April 9, 2000 - Hi, I read your post today and believe me I know about ignorance and insensitivity to our problems. I went to a "respected" cardiologist for a few years and he seemed to help, then after seeing him for about 5 years, all of a sudden his attitude changed completely. He started telling me that all the symptoms I was experiencing were in my head, not my heart. I had been complaining of extreme fatigue and shortness of breath for a long time. I kept asking if I was in heart failure and he would say no; then I would have an echo and the tech would say yes when I asked about my heart being enlarged but the doctor would deny it. I was confused. He actually had me see a shrink and I thought I was going crazy.
     Finally, I switched to another specialist. This guy did all the tests again, then told me, "Your heart failure is the same as it's been for the past 8 years!" My husband and I stared at him in shock. We had no idea I was even in CHF. Now 2 years later, it is worse and I keep thinking about what an injustice that man did to me. My new doctor assumed we knew that I was in CHF. When we said differently, he repeated the cath and discovered that my heart had deteriorated even more. He replaced a dual chamber pacer with a single chamber model since the atria were non-functioning. To top everything off, my hubby admitted to me yesterday that he actually doubted my illness at that time. He is beside himself with guilt for not believing in me. I was and still am hurt by this but I will get over it. Always demand honesty from your physician. If you don't get it, find another one. Thanks for listening, Suzy. lookn4aheart@yahoo.com


Carol W's April 14 reply to Jon's April 12, 2000 - Thanks Jon, for the inspiration that we are and can be more than we think we are, and that we are capable of making ourselves over with the help of God. We need to be reminded that we are important people even when we feel lost and alone. May we all find our foundation in the solid rock that is our faith. May God bless us all. Carol W. cabwojo@banet.net


James D, April 14, 2000 - Hi, I recently had another Vo2 test which I flunked again. My number was 12, but better than the last one which was 11. However, the weird thing is that I have a problem exercising at home but on this test I was able to go for about 12 minutes. Afterwards I felt great, even somewhat pumped up. My heart doctor says I still fall into the "need a transplant" area, but they can never figure out why I'm not exhausted after the test, but rather it seems to perk me up. Can anyone explain this or does it happen to others? I read about VO2 on this web site, but it didn't talk about anybody feeling good from it. All that aside, I still don't like the test, the breathing part is very unpleasant. driver@azone.net
 
Jon's note: Are you an extremely competitive person, generally?


Royston, April 14, 2000 - During the 2 months I have been taking Zocor to lower my blood cholesterol, my height has increased 1-2". My doctor confirms my increased height, has no explanation. I am interested to know if anyone else taking Zocor has noticed this effect. Royston. rpr24@mole.bio.cam.ac.uk


Rieale, April 14, 2000 - Hi there again, I have another kind of off-the-wall question. I was wondering what kind of Medic Alert tag works best. I have looked through the Medic Alert company which has the engraving on the bracelet as well as a call-in-service for paramedics if need be, but I have also just seen the bracelets and necklaces in the pharmacy and hospital. Currently I just carry around a card that states my condition and meds, but I know this isn't enough. Can anyone share what they use and what they think is the best as well as any contact numbers? I'd really appreciate it. Rieale@aol.com


Jon's April 14 reply to Rieale's April 14, 2000 - Hi Rieale, I bought a cheap bracelet with the "Medic Alert" symbol and had it engraved with, "Cardiomyopathy - SEE WALLET CARD." My wallet card has an insert made on the pooter stapled in, containing personal info, both my doctors' contact info, my meds, wife's contact info, EF, drug allergies and some miscellaneous stuff. Jon.


Rieale's April 14 reply to Cherita A's April 13, 2000 - Hi Cherita, I can't answer most of your questions. The one thing I can say is that everybody responds differently to medication and your activities are just as individualized. Your post touched me because we are in a very similar situation. As many people who read this board already know, I'm only 22 years old and was hospitalized in January of this year with class 3 Congestive Heart Failure and an EF of 15%, which coincided with my student teaching semester. Personally, I have made the choice to redirect my path into a less stressful and less infectious career; those kids carry a lot of germs, which is bad for our lowered immune systems. This is a very personal choice but be aware of keeping yourself away from illness and wash your hands often at school.
     You have many concerns about the future, just as I and everyone else on this board has. The only thing I can really say is that nobody on earth truly knows how much time they have left. At least we know that our time here may be more limited than most and therefore we must make the most of it. To the best of my knowledge, CHF is a condition that will always be with you but it doesn't have to control you. Yes, you will have to change your eating, sleeping and lifestyle habits, but those changes can actually improve the quality of your life.
     As for having more children, my doctor told me that carrying a child to full-term and giving birth could put extreme stress and pressure on my heart and ultimately damage it further. As soon as my fiance gets his new job and insurance going, he is getting a vasectomy. Once again though, this is a very personal choice and should be discussed between you, your husband and doctor. Remember that your doctor is there for you to ask questions just like that one.
     Like you, I often ask myself how this could happen to a 22 year old. The best answer I can come up with is that everything in life has a purpose and it is up to us to find that purpose and try to fulfill it. I am here for you and always long for another younger person to discuss our problems and triumphs. Please e-mail me anytime. It takes a lot of strength to deal with CHF and the more of us there are, the better off we will be. Rieale@aol.com


Pat D, April 14, 2000 - Hi Jon and everybody, I just wanted to let everyone know that I came through my bladder surgery with flying colors! God was definitely in the operating room with me. I had been told I'd have to be in ICU following the operation because of my CHF and Pulmonary Hypertension, and they kept an anesthesiologist with me throughout even though normally he rotates between operating rooms, and my heart remained completely stable for the entirety. I did so well that it wasn't necessary to be in ICU, so after I left the recovery room, I was put into a private room just like a regular person! <lol> Of course, there's been a good bit of pain but it's diminishing every day and I'm gaining more strength each day also, so I expect to back to normal (whatever that is) within another couple of weeks. Thanks to all those who prayed for me; obviously, God listened. Love and best wishes to all of you, Pat D. patj98@yahoo.com


Christie M's April 14 reply to Rieale's April 14, 2000 - Hiya Rieale and all, I wanted to pass along the Url for the Medic Alert foundation: www.medicalert.org/. The site provides lots of information, but last time I checked the site, you have to call their 800 number to subscribe. The cost is nominal and the annual renewal fees are reasonable. I personally opted for a necklace engraved with "Implantable Cardioverter Defibrillator, Cardiomyopathy, takes anticoagulants and allergic to PCN." I was pretty astonished how much they could cram onto a medallion and spell everything right! <g> I also carry cards Medic Alert sent me with additional information like docs, meds and insurance, another card with meds and dosages, and a card for my AICD. Medic Alert will makes changes and resend cards whenever you wish. Christy M, age 41, EF 20%. breezip@hotmail.com


Phyllis A, April 14, 2000 - Hello all, First I would like to extend best wishes to Pat for her good news about the surgery. I would also like to ask for prayers for my Dad, who had a heart attack Wednesday evening. He is doing better but we had to sign him out of hospital against their wishes because as many of you know, my dad has been through so much in the last 4 or so months that he is now very tired and he is also on dialysis, which makes it twice as hard on him. I hope everyone is doing as well as can be expected and we should continue to pray for each other always. Phyllis A. phylcasurv@msn.com


Eris, April 14, 2000 - Hi, I saw my cardiac doctor on Monday and he ordered blood tests that showed my digoxin level to be almost toxic. My internist had me on three 0.125mg tablets a day. Apparently the level was about 2.8. I am now down to two 0.125mg tablets per day. He also upped my Coreg so that now I take 25mg twice a day. Meanwhile, the pharmacist told me to take both digoxin tabs in the morning rather than dividing them. In fact, he advised taking most of my meds in the morning, but said to split the Coreg and Losartan between morning and evening. The furosemide (Lasix) is also divided into 2 doses, as it always has been. I used to divide the digoxin and also take levothyroxine in the afternoon instead of the morning. I tried the new arrangement for the first time this morning and had severe diarrhea soon afterwards. I wonder if this is cause and effect or coincidence. kunga@mindspring.com


Judy Z' April 15 reply to Tim B's April 12, 2000 - Hi, I don't check this site every day but when I do I always look for your messages. I am so sorry to hear your situation has gotten worse. It must be very difficult to see the pain your illness causes your family. I am still in pretty good shape, but I know it hurts me to see the sorrow and fear in my family's faces. Try to remember that it is not you who is causing them pain, it is the illness you did not choose. Let them help you in any way they can, not for your sake as much as theirs, and do whatever you can to show them you still care about your situation, such as following your docs' advice, etc. I do think that sometimes the pain we face in life, like the illness and death of a loved one, can be a catalyst for spiritual growth. I don't think that what any of us are going through is without purpose, although we may not see the ultimate outcome in our own lives. You sound like a wonderful man, with a great family. You are all in my thoughts and prayers. Judy Z. jezmund@coredcs.com


Pat L's April 15 reply to Eris' April 14, 2000 - Hi Eris, About Coreg and digoxin, SmithKline-Beecham's Coreg page indicates that people taking Coreg could end up with 14 to 16% higher concentrations of digoxin in their blood. For me this is what led to digoxin toxicity. I now take 0.25mg digoxin on Sunday, Monday, Wednesday and Friday, and 0.125mg on the other 3 days. The amount you are taking sounds like a lot! Pat L. patlat@yahoo.com


Jill S' April 15 reply to Jon's April 14, 2000 - Hi Jon, My cardiologist does not routinely recommend digoxin for all CHFers, so I have never been on it. In his opinion, it may help some people with CHF to feel better, but it does not decrease mortalty. Even the guilde lines are squishy on this. There are other reasons for taking the drug. Jilschrod@cs.com


Jon's April 15 reply to Jill S' April 15, 2000 - Hiya Jill, I agree that digoxin may not decrease mortality. However, if ever there was a great reason to put a CHFer on a drug, it's to make them feel better! <g> The guidelines are pretty clear. They say, "Digitalis is recommended to improve symptoms in CHF patients with heart failure due to a weak left ventricle. Digoxin should be used together with diuretics, ACE inhibitors, and beta-blockers." The only uncertainty is how to determine best dose for any given individual, which is also now being recognized as a major problem with ACE inhibitor therapy. I took digoxin for 4 years and then quit due to a side effect caused by another drug's interaction with it. I definitely noticed a decrease in energy and well being when I came off digoxin. I wish I was still taking it.
     My pet theory is that doctors dislike prescribing a drug that still works as well as "modern" drugs more than 200 years after it's first use. It bugs them that we can't do better without increasing mortality as with modern inotropes. <lol> For those who want more info, take a look here, here and here. Like all Rx drugs, everyone reacts a bit differently, so what's good for me may not be good for another person. Jon.


Tim B, April 15, 2000 - Dear Jon and Friends, This is just to let you know that we have an additional e-mail address as well as the old one of ofb072248@wctc.net. You can e-mail me at either one. I hope all is going well with all of you. May the Lord bless you and be with you as we all carry our cross. I will write later. Have a nice weekend. bj_tj_54494@yahoo.com


Sarah F, April 15, 2000 - Hi, This site has been important to me and I have made many dear friends through it. Yesterday I lost a friend when Carl died. I am sad because I shall miss his clever conversations and wonderful sense of humor. He was truly a great man and our world is diminished without him. I know that he is now where he longed to be and that God has welcomed him. sfuhrmeyer@neo.rr.com


Richard B, April 15, 2000 - Hooray, I received notice yesterday that I will be getting a Social Security Disability check starting in June. They will review my case in 5-7 years. This was my first attempt. Man, what a load off my mind! The whole process took 6 weeks. I'm surely counting my blessings that I didn't have the problems some of you did. Richard, EF 15, CABG x3, in Connecticut. How about them lady Huskies?! begin@snet.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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