George M's 3-1 reply to Joe ?'s 2-28 weightlifting & the heart
Bruce S 3-1 just found you - intro
LeeAnn D's 3-1 reply to Jon's 2-28 light lifting & heart rate questions
Jon's 3-1 reply to LeeAnn D's 3-1 light lifting & heart rate
Allen Cravener's 3-1 reply to John Rice's 2-27 cardioversion
Joe's 3-1 reply to Jon's 2-28 lifting, training & more
Jon's 3-1 reply to Joe's 3-1 lifting & training
Cathy 3-1 update, angina, still kicking
Staci H 3-1 Gatha E in the hospital
Harry Humes 3-1 anyone familiar with VA & transplant?
Doug Knuth 3-1 weight lifting & Coumadin testing
Renee M's 3-2 reply to Ben B's 2-28 disability, job security & more
Pat L's 3-2 reply to Cathy P's 3-1 angina without artery blockage
Jon's 3-2 reply to Pat L's 3-2 angina
Milt M 3-2 update, important factors
Lee R's 3-2 reply to Bruce S' 3-1 welcome, info, support & more
Joy R 3-2 dobutamine use, catheter questions & more
Jon's 3-2 reply to Joy R's 3-2 dobutamine use & second opinions
Staci H 3-2 Gatha E update
Jan 3-3 intro, Disability question
Al M's 3-3 reply to Renee M's 3-2 Medicare, supplements & more
Al M's 3-3 reply to Joy R's 3-2 Hickman catheters & more
Bill D 3-3 Bruce & Harry
Bev T 3-3 amiodarone/Cordarone questions
Keisha T 3-3 update, thanks, weight gain/loss question
Tony Paris 3-3 intro, thanks to all
Joy R's 3-3 reply to Jon's 3-2 dobutamine, CHF, forums & more
Jon's 3-3 reply to Joy R's 3-3 finding info
Al M 3-3 CHF humor
Andrew G 3-3 prayer request
Jon 3-3 updates, bios, recipes, prayers & Milo
Karen Sundfors 3-3 peri/post partum cardiomyopathy research
Roger C's 3-3 reply to Doug K's 3-1 Coumadin Pro-time tester
Ben B's 3-3 reply to Andrew G's 3-3 doctors, diagnosis & prayer
Bill D's 3-3 reply to Jan ?'s 3-3 Clonidine, Coreg, welcome & more
Bill D's 3-3 reply to Tony Paris' 3-3 welcome, CHF info & more
Cindy M's 3-3 reply to Keisha T's 3-3 weight loss in early CHF - questions
Paul M's 3-3 reply to Andrew G's 3-3 getting info to your friend
Sarah F 3-3 intro & anxiety/sleep questions
LeeAnn D 3-4 Cindy, Keisha & Jon
Ruthie A's 3-4 reply to Bill D's 3-3 clonidine & beta-blockers question
Pam E 3-4 potassium & BP question & more
John Rice 3-4 a-fib questions, Disability & more
Donna ? 3-4 some can & do get better & more
Cindy M's 3-4 reply to Sarah's 3-3 anxiety, depression, support & more
Pat L 3-4 Cindy, Keisha, weight gain & loss
Sue B 3-4 update, thanks, coping & more
Rick M 3-4 update, good news, doctors
Joe ?'s 3-4 reply to Cindy M's 3-3 putting weight on
Steve 3-4 intro, seek support
Robin W 3-4 SSD/Medicare question
Robin W's 3-4 reply to Joy R's 3-2 Hickman catheter use
Phyllis 3-4 transplant questions
Bruce S 3-4 update
Jan's 3-4 reply to Bill D's 3-3 meds mess, doctors, symptoms & more
Brenda H's 3-5 reply to Milt's 3-4 congrats & quitting smoking
Gatha E 3-5 back from club med, antibiotics & more
Lee R's 3-5 reply to Cindy M's 3-3 meds & weight
Lee R's 3-5 reply to Sarah F's 3-3 beta-blockers & depression & more
Lee R's 3-5 reply to John Rice's 3-4 a-fib, info sources & more
Tom S' 3-5 reply to Robin W's 3-4 SSD, Medicare, premiums
Brenda H's 3-5 reply to Steve ?'s 3-4 coping
Samantha B 3-5 reply to Cindy M's 3-4 stable weight & more
Joy R's 3-5 reply to Robin W's 3-4 Hickman catheters, support & more
Cindy M 3-5 thanks, weight
Bill D's 3-6 reply to Ruthie A's 3-4 drug interactions & Mayo CD
Jon's 3-6 reply to Bill D's 3-6 copying info from CD possibility
Bill D's 3-6 reply to Steve ?'s 3-4 welcome, info & more
Bill D's 3-6 reply to Jan's 3-4 doctors
Milo K 3-6 being open, e-mail, bios & more
Milo K 3-6 board continues & a little humor
Milo K 3-6 diabetes, life & death, & more
Bonnie 3-6 chest pain & questions
Jon's 3-7 reply to Bonnie's 3-6 congratulations
Brenda H's 3-7 reply to Bonnie's 3-6 welcome, hope all goes well
Al M's 3-7 reply to Cindy M's 3-3 weight gain and loss, & more
Gene W 3-7 intro, exertions/activities questions
Harry W 3-7 intro, amiodarone questions & more
LeeAnn D 3-7 diabetes worries, questions & more
Candy 3-7 update & long term disability questions
Cindy M's 3-8 reply to Milo's 3-6 welcome back
Lee R 3-8 cough, night sweats, prayer request
Liz J's 3-8 reply to Gene W's 3-7 docs, valves, over-doing & more
Steve S 3-8 energy, exercise questions & more
Bill D's 3-8 reply to Gene W's 3-7 overdoing, welcome & more
Paul M's 3-8 reply to LeeAnn D's 3-7 diabetes & CHF
Bill D's 3-8 reply to Harry W's 3-7 new meds, zapping, archives & more
Bill D's 3-8 reply to Candy's 3-7 disability insurance, premiums & more
Jack W's 3-8 reply to Gene W's 3-7 overdoing, rest, working, CHF & more
Janet T 3-8 Disability, weight training, EPS, ablation
Tom S 3-8 Lee R & Steve R
Arlene B's 3-9 reply to Jack W's 3-7 why worry
LeeAnn D's 3-9 reply to Paul M's 3-8 how to prevent diabetes onset?
Jon 3-9 server down & more
Jon 3-10 forms active again
Jay Q 3-10 seek opinions about Coreg
Harold Weems' 3-10 reply to LeeAnn D's 3-9 diabetes preventive diet
Donna B 3-10 olive leaf extract question
Paul M's 3-10 reply to LeeAnn D's 3-9 diabetes and diet
Ben B 3-11 aspirin & Vasotec
Jon's 3-11 reply to Ben B's 3-11 med studies, term papers & more
Ben B's 3-11 reply to Jay Q's 3-10 Coreg, Zestril & more
Tom S' 3-11 reply to Jay Q's 3-10 Coreg, guinea pigs & more
Linda O 3-11 hey amiodarone users! Karen O & more
Jeanette Walberger 3-11 have DCM, seek info & support
Candy 3-11 update, LTD, feeling good & more
Karen K's 3-11 reply to Jay Q's 3-10 Coreg & quality of life, update
James L 3-11 glucophage information & warning
Tom D's 3-11 reply to Harry W's 3-7 amiodarone
Jim M 3-11 intro, seek chat room help
Candy's 3-11 reply to Bill D's 3-8 job status update
Christine 3-12 intro, small blood vessels & more
Ginger 3-12 chat, ICQ, multiple illnesses & more
Jon's 3-12 reply to Ginger's 3-12 EF, Vo2max & more
Jon 3-12 update
Joy R's 3-12 reply to Jon's 3-11 driving, handicapped spaces & more
Lee R's 3-12 reply to Tom S' 3-8 cough & ACE inhibitor, & more
Milo's 3-12 reply to Steve's 3-4 EF, doctors, Jon, book excerpt
Bill D's 3-13 reply to Jeanette W's 3-11 CHF info & more
Bill D's 3-13 reply to Christine ?'s 3-11 CHF info, chelation & more
Bill D's 3-13 reply to James L's 3-11 doctors & drugs
Roger G 3-13 update & doctors
Bill D's 3-13 reply to Jim M's 3-11 doctors, info & more
Bruce S' 3-13 reply to Jay Q's 3-10 Coreg experience & more
Della 3-13 intro, history, faith & more
Mina 3-13 intro, EF's don't increase? & more
Jon's 3-13 reply to Mina's 3-13 EFs & beta-blockers
Sarah F's 3-13 reply to Joy R's 3-12 getting those looks
Linda O's 3-13 reply to Christine's 3-12 chelation questions, coping & more
Kathleen 3-14 long term cardiomyopathy & more - seek others
Ben B's 3-14 reply to Mina's 3-13 EFs & docs, failure questions
Tom S' 3-14 reply to Jeanette Walberger's 3-11 CHF of unknown origin
LeeAnn D 3-14 handicapped spots, Sarah & Joy
Joy R 3-15 handicapped spots, drug use & more
Jon's 3-15 reply to Joy R's 3-15 handicapped spots & stores
Mary Ann Miller 3-15 update, thanks to all
Ginger's 3-15 reply to Roger G's 3-13 question, Jim - chat times
Jackie S 3-15 Jon, new treatments are hopeful & more
Vincent W 3-15 update, diastolic dysfunction & more
Bill D's 3-15 reply to Mina's 3-13 life span, EF & more
Bill D's 3-15 reply to Kathleen's 3-14 CHF, boredom & more
Lee R's 3-15 reply to Mina's 3-13 EF, asthma meds & more
Lee R's 3-15 reply to LeeAnn D's 3-14 ya need a tee-shirt like this
Bill D's 3-15 reply to Ben B's 3-14 going into heart failure
Cindy M's 3-15 reply to Jon's 3-13 EF measurement question
Jon's 3-15 reply to Cindy M's 3-15 EF measurement
Candy's 3-15 reply to Kathleen's 3-14 hang in there, pain, exercise & more
Joe E's 3-15 reply to Jon's 3-12 exercise
Jon's 3-15 reply to Joe E's 3-15 resistance training
Della's 3-15 reply to Kathleen's 3-14 keep the faith
George M's March 1 reply to Joe ?'s February 28, 1999 - Hi, My doc told me pumping iron would make my heart work too hard. Walking and playing golf should be enough for me. I think Jon explained it better than I could. The doc said the heart is a muscle but not the kind you could build up or make stronger, therefore the meds I'm on. firstname.lastname@example.org
Bruce S, March 1, 1999 - Hi, I just found this Web site. It's great. I read The Manual and found it very helpful. I would love to talk to some of you out there. I found out I had CHF in December of 1997. The doctor started me on Coreg, then with Zestril and Lasix. In the hospital, my EF was 15 and in May of 1998, it was up to 35. I go back this Thursday, March 4. I hope he will test everthing at one time. Well, better go. God Bless you all. baspencer@rtelco
LeeAnn D's March 1 reply to Jon's February 28, 1999 - Hi everyone, I was thinking about starting a weight lifting program, just to tone. I'm gathering that light weights are ok, right? If so, what would be considered light weights for a lightweight like me? :) I'm also thinking about trying a (non-religous) yoga excercise video. Has anyone else tried yoga? So far, the only exercise I get is walking 3-4 times a week, and of course, taking care of small children. By the way, I was wondering if anyone else has a hard time raising their heart rate. My resting is 60 and when I walk very briskly, I can get it up to 100 but every time I check it otherwise, it is always 60 and I'm worried because of reading the "variable heart rate" article that says if your heart rate doesn't vary enough you aren't doing great. I know that it was never like this before Coreg, so maybe that's why. LeeAnn in Phoenix, DCM, age 38, EF 12. email@example.com
Jon's March 1 reply to LeeAnn D's March 1, 1999 - Hi LeeAnn, How you can not get enough exercise with small children on your hands is beyond me! <g> Defining light weights for someone else is impossible to do long distance. Some phone advice from your friendly neighborhood cardiac rehab team might be in order. Ask your doc to set it up. I tried light weights last year but couldn't sustain it. Then again, my version of a light weight workout probably isn't the same as yours. <g> One danger for a former dedicated lifter is the urge to always lift more weight and more slowly. The urge is hard to resist and can be bad news for a CHFer. You're right about beta-blockers and heart rate. Coreg will keep your heart rate low. That doesn't mean your heart rate doesn't vary, believe me. Our heart rates can change a lot throughout the day without us realizing it. A watched pot never boils and all that. :-) Jon.
Allen Cravener's March 1 reply to John Rice's February 27, 1999 - Hi John, I can understand your concern over the cardioversion but don't sweat it. I had one about a month ago. It was a breeze. I would hop right back on that table if they asked me to. It didn't do a thing for my A-Fib, but it didn't hurt either. My doc juiced me up and the last thing I can remember is someone saying are you ready? Then I woke up in the recovery room to the sad news that it didn't work. I was discharged about a half hour later. The doc said that if it had worked, I would have had to stay overnight to make sure everything was going to work. Now I am waiting for my 6 month checkup to see if my heart continues to shrink. If it does, he will either try the cardioversion again, or some meds to resolve the A-Fib. Allen Cravener, 54 years old from Reading, Pennsylvania. firstname.lastname@example.org
Joe ?'s March 1 reply to Jon's February 28, 1999 - Hi Jon, Thanks very much for the quick and informative reply. I feel somewhat guilty in writing such a long post which took much time on your part in replying in detail. Based on your physical labor abilities plus your weight training, it's obvious my muscular and bone structure is much smaller than yours. Perhaps the 3 times per week I am lifting weights (and each muscle group is trained only once each three sessions) would be closer to "toning" than to building muscular bulk. My genetics appear to somewhat limit the bulk I am able to add. Since you have a lot of knowledge regarding physical training, I would like to ask one more question. In addition to weight training, I also was fairly heavily involved in Tae Kwon Do for the past 15 years and competed in tournaments in senior division. However, this seemed to increase my symptoms, especially the paresthesias, and the Cleveland Clinic cardiologist suggested I not do this if there was a chance I would be hit in the chest. So I quit Tae Kwon Do training about 2 years ago. Do you think this type training, without the sparring, would be beneficial and do you have any thoughts as to why it increased the paresthesias? None of the 4 cardiologists, 3 neurologists, and numerous other medical doctors I've been to can explain the reason for the paresthesias and they say it's not due to the DCM. Krait008@aol.com
Jon's March 1 reply to Joe ?'s March 1, 1999 - Hiya Joe, Don't feel badly for me. I just have good days and bad days like everyone else here and have to deal with them best I can. On a day when I'm not up to posting stuff, I won't. As for size, that was long ago. I haven't trained regularly for almost 5 years. I'm all the way down to a 44" chest, which means all my tee-shirts hang all over me. At 5' 8" tall, extra large tee-shirts just don't get it without the former size, but hey, I'm comfortable. <g> The lumber was figured at an average daily amount of 12,000 to 13,000 board feet of rough 4/4 Red Oak, which weighs in at a bit over 4 pounds ber board foot, handled one piece at a time. You should have seen us sweat in the summer!
I made it through quite a bit of judo a long time ago but never Tae Kwon Do, so I don't have a clue. Judo requires a lot of hard impacts, from falling and from blocking. My guess is that Tae Kwon Do is higher impact even without sparring, due to the abruptness of movement during both strikes and blocks, so the heart is "surging," which is even harder on a weak heart than sustained exercise. Our hearts don't recover well from sudden spurts of the neurohormones that speed us up during episodes of quick activity. Why you have numbness/tingling, I just don't know. That could be due to any one of a thousand things and me guessing isn't likely to help. Describe it in detail and maybe someone else with the same symptoms can help. Jon.
Cathy, March 1, 1999 - Hi everyone, I have not posted in many months due to health but am doing better today. This is a day to day illness. I have finally found out what all my soreness and pain was in my shoulders and arms and neck, teeth and jaw. Let's just say everyting above the waist hurt like I have over-worked and I have not over-worked in years. It is angina, all this time. I finally ended up in the hospital and within a couple hours, IV nitro sure worked. I finally gave up when I was so dizzy and lightheaded that I said time to find the real answers. I would never have believed that angina could affect so many parts of my body. I am now on 180mg Imdur in AM and Norvasc in PM until I get to a new doctor in Boston. I still take 50mg Coreg per day and Cozaar, Lanoxin and good old aspirin. I am grateful for the meds. Today is one of those days where I could over-do it because I feel so much better.
Now I know more than I did. I say that each time I read or visit my doctors. It still amazes me how much there is to learn and the first thing I learned was that this is a new lifestyle for me and once I learned that, it became easier until this angina thing. I have no blockages and nothing to say why this should happen. That is what fools the doctors, just spasms or what?! My EF is 15% at this time and I do very well with each day. They are talking about transplant and I will find out March 16 if I need to go on the list. I would rather keep mine if the meds work. I was told I had to be in good health to get on the list. Sure, what is good health for CHFers?! I assume all other things need to be working. I will continue ro read all I can. To those to whom I used to post, I am alive and will be back online as I feel I can. I have not forgotten any of you out there who helped me deal with this one year ago, March 12. I pray for you all and know God is listening. Each morning I say good morning, and thanks for giving me this day. It makes me feel better. Thanks for being there. Cathy from Maine. email@example.com
Staci H, March 1, 1999 - Hi everyone, I just wanted to let you all know that Gatha E was put into the hospital this morning with CHF. They are going to try to get the fluid off her lungs. Please keep her in your prayers. I will keep you posted on her condition. A big thanks you to all of you. firstname.lastname@example.org
Harry Humes, March 1, 1999 - Hi, I'm 51 and have been diagnosed with dilated cardiomyopathy for about 4 years now. My EF is 14% and dropped about ½% a month. I am on about 9mg Coreg but probably won't be able to up-titrate any more because I'm hypotensive, with a BP of 85/60 or so. There are, of course, other meds I'm taking, Digoxin, Lisinopril, Furosemide and Gemfibrozil. At present, I'm in the VA system and am on the UNOS transplant list at Hunter Holmes McGuire VA hospital in Richmond, Virginia or at least that's what they tell me. My question is, does anyone else have any experience with the VA in regards to heart transplants? I do know of the other centers. Getting answers are like pulling teeth. I'm told it is political as to which center you are sent. For those of you who fight insurance companies and hospital bills, I can feel for you. I also understand the depression and not being able to sleep. Thanks Jon, for the great site. I've found out so much through your site and the links, that help me to talk to the doctors intelligently. email@example.com
Doug Knuth, March 1, 1999 - Hello all, It's been awhile since I last posted. I couldn't help but feel my jaw drop to the floor hearing all these folks talking about weight lifting! My doctor told me no running, no strenuous lifting, no straining, no basketball, etc. Anything that puts a sudden strain on the heart, and body. As the heart muscle dilates, it becomes thinner, and a sudden blood pressure build-up could actually blow out the heart muscle, causing death. I am glad to hear that some of you have the energy to try but I would stick to stretching exercises, or swimming, walking, or cycling. I sure admire your desire to get better, don't lose that.
Roger C, thanks for the Coumadin information. Your doctor doesn't have a problem with you determining your own INR? I think most doctors would want their own people checking the PT for fear of mistakes and lawsuits, not including the economics of it. Good luck to all of you, and try to keep positive. firstname.lastname@example.org
Renee M's March 2 reply to Ben B's February 28, 1999 - Hi Ben, I have had some big difficulties with permanent disability where I used to work. We had a disability insurance policy. It took that insurance company 10 months to approve disability. I tried to go back to work several times but could not tolerate even a desk job day after day. I was sent a termination notice one month after I was approved for disability! Also, as soon as I was approved for disability, the insurance company forced me to apply for Social Security Disability. Many policies are a supplement to SS Disability. I was told that the Family Leave Act was the determining factor for termination and also for insurance. I urge you to check and double check all aspects of your situation before making a decision. The person in my Human Resources Department told me so many incorrect things and I was making decisions using that info! I finally began calling the insurance companies directly to get the right info.
Also, ask to see whatever they tell you in writing. If they are unwilling to put it on paper, you can be sure you're going to have a problem later. If you are laid off or terminated, you can continue your insurance with COBRA. Check to see if a Medicare supplement is available through your company's insurance. We had the chance yearly to change insurance companies but I never did. When I was approved for Medicare, I couldn't get a supplement! If I had changed my company to one that offered Medicare supplements during the COBRA period, I could have gotten a supplement at a reasonable price. Now I pay a monstrous amount for insurance. It's time consuming to have to find out everything yourself but who suffers in the long run if the information is incorrect? Note: my company was very nice and accomodating about my return to work, too. I know this is lengthy, but I also know the after effects of this situation. Good luck, Renee M. email@example.com
Pat L's March 2 reply to Cathy P's March 1, 1999 - Hi Cathy and everyone, I read your post with great interest; angina without having any blockages. I have experienced what I think may have been angina pain on 3 occasions and was told by my cardio-expert that I don't have angina because I don't have any blockages. I know I was told in 1990 that I had spasms of the arteries, causing chest pain and cutting blood flow to the heart! I changed to a different HMO as of 3/1 and will be selecting a new cardiologist shortly with the help of my Primary Physician. Pat. firstname.lastname@example.org
Jon's March 2 reply to Pat L's March 2, 1999 - Hi Pat, Changing docs is a good move. I have angina but no blockages. All of my cardiologists since diagnosis have said that this is not common but also by no means unknown. After extensive questioning and exercise testing, they gave me Nitrostat with instructions. Angina can be terrible and a doctor refusing to recognize it just because it doesn't agree with his philosophy is even worse. Jon.
Milt M, March 2, 1999 - Hi to all, I have only posted a few times but I would like to give an update on my condition. I was diagnosed with DCM/CHF in June of 1996 by a cardiologist. The cardiologist refered me to a CHF clinic when my EF was at 35, two years later. The clinic changed the dosage of my meds; Coreg was lowered, Cozaar was raised, and Lasix was changed to Demadex and Lipotor was added. On my own, I take 150mg CoQ10, 400IU Vitamin E, 100mcg Selenium, 100mg Magnesium and a multi-vitamin every day. At my last exam on 2/18/99, an echocardiogram showed my EF was at 54%. I am scheduled for a stress test 3/8/99. I think the Coreg and the CoQ10 have made the biggest difference in my clinical condition and a clinic that cares about its patients in my mental condition. I write all this nonsense to reaffirm what most Jon says, "Get a doctor or clinic that cares about you." They make a difference. God bless and my prayers are with all of you. email@example.com
Jon's Note: Congrats on the EF!
Lee R's March 2 reply to Bruce S' March 1, 1999 - Hi Bruce, Glad you found us at Jon's. Welcome to the best site for information and support. My CHF started in 1997, too. It sounds like your doctor is doing the right things, especially when you take a look at your EF. Have a good appointment on Thursday and let us know how you are doing. Bestest, Lee. LeeRoush@aol.com
Joy R, March 2, 1999 - Hi, Since finding this site, I check each day to hear about new information and have already found things I didn't know. The problem Joe was talking about - numbing and tingling in the extremities - bothers me also. I don't lift weights, I just move around slowly. I assumed it was due to blood pooling in the extremities from poor heart function. I never feel like that when I am infusing with dobutamine but when I stop my IV, it isn't long before it starts. Sometimes it's bad enough that I take a Darvocet. I was disappointed that no one answered about being on dobutamine, as I would sure like to exchange thoughts about their problems. I think I shouldn't be on it but it helps my heart function so much.
Does anyone have a Hickman catheter and have ideas on the best way to secure them? I had a life port for 14 months and the skin got so bad from overuse that the doc put a double Hickman in. It comes out at my bra line and hangs down and I am forever catching it on something. I'm using lots of tape now but my skin is getting bad from the tape. Any ideas? God bless everyone. firstname.lastname@example.org
Jon's March 2 reply to Joy R's March 2, 1999 - Hi Joy, I am guessing that the reason you didn't hear from anyone is that CHFers are not usually put on dobutamine until they are so sick they really have no interest in sitting in front of a computer. Chronic dobutamine use shortens life span and is considered a bridge to transplant or a way to raise quality of life when a person is near death. It is also used to strengthen heart function just before necessary surgery on someone with a weak heart. I have never heard of anyone using it long-term the way you do for CHF. Have you ever gotten a second opinion on this treatment? It's absolutely great when used correctly but there are other drugs designed for more long-term use. Your treatment may be proper but it never hurts to be sure. Have you asked a pharmacist at a hospital or your cardiologist about your tingling after IV use? Also ask at the Cleveland Clinic forum - can't hurt. Jon.
Staci H, March 2, 1999 - Hello, I just wanted to let everyone know that Gatha E is feeling much better today. She may be able to come home tomorrow. Thanx for all the prayers! This is the most wonderful group of people! email@example.com
Jan ?, March 3, 1999 - Hello, I was diagnosed with DCM in 1991, one year after giving birth. I have had echos every year and you won't believe this, but July of 1998 was the first time I ever heard the words "ejection fraction." At that time, my EF was 45%. At my annual visit to the doctor, I finally told him that the cough that I have had for the last 7 years was starting to bother me. Well, I didn't know what I was in for. I was put on Coreg. The first two weeks were fine, then the dosage changed and I thought I would die. I didn't, and I thought things couldn't get any worse until the weaning process started. When I thought it was over, he decided to leave me on the low dose of Coreg and added 0.2mg Clonidine twice a day. The very first dose knocked me off my feet and I could not go to work for 3 weeks, and only after he changed my dose. I went back to work with SOB, chest pains and very fatigued. I wondered during that time if I qualified for Disability even though my EF went to 52%. Does anyone know? firstname.lastname@example.org
Al M's March 3 reply to Renee M's March 2, 1999 - That was good info you gave about getting things in writing and checking with insurance companies. Generally speaking, people in Human Resources are just "folks," some with, and some without, large brain pans. They specialize in reading regulations and making interpretations based upon how their company has told them to interpret.
As to Medicare supplements, not all apples cost the same. I'm certainly no authority on the subject but I just recently qualified (dubious destinction award) for Medicare. The supplement one is able to get depends upon what insurance company offers what in a particular state. I learned a couple of things. This isn't a recomendation for any company but AARP will accept anyone, regardless of condition for supplements. There is a catch and it is a big dollar catch. USAA, on the other hand, in Texas only offers Plan A for "new" people on Medicare. Most of the other plans are also available if you have already been on some plan before, with another company.
The difference for me, a 55 year old male smoker (within the last 6 months) for plan A: With AARP $134/month, with USAA, $46. The reason is that USAA has a 6 month, pre-existing condition rider but I figured (me only), what the hey, I had made it 18 months with no insurance and I could make it another 6 months for CHF. At least now on Medicare, all my tests are taken care of by Medicare and if something else goes south on me, that's covered for both parts while I wait for the 6 month grace period.
Also, when you become eligible for Medicare as a disabled person, you have 6 months from that date of eligibility when every insurance company you apply for a supplement from has to take you. So my guess is that if you are having big problems with CHF, pick an insurance company that will take you as is, with no pre-existing exclusions. Otherwise, check around. All medicare supplements have to offer the same benefits as all others with the same letter, A-J. Good luck. email@example.com
Al M's March 3 reply to Joy R's March 2, 1999 - Hi Joy, I read your post with interest and some experience. About the Hickman, single and double, my late wife had both - double mostly. It was my job to do the Hickman cleaning, hook-ups, shot giving, etc. Jamie had the same problem; skin as well as a case of the "droopy tubes." As to the skin, about the only thing that worked was Vasoline Intensive Care, attempts at locating the tape in different places, and the use of surgical tape (the paper stuff that came at that time in little blue dispensers). Sometimes, honesty works - just ask the technician for some "stuff." Unless they are a relative of the doctor, there's an excellent chance they will just give you stuff. Best of luck. firstname.lastname@example.org
Bill D, March 3, 1999 - Hi all, Bruce and Harry, I just want to thank you guys for looking around Jon's Place before posting questions. Boy, does that make me feel good! You're as welcome as a breath of spring! Bill. email@example.com
Bev T, March 3, 1999 - Hi everyone, I wore a Holter last week because of slight but constant arrythmias (on top of my normal VT <g>). My doctor is wanting me to go on amiodarone and I really don't want to. Everything I've read isn't good and also the hospital stay seems long. Has anyone not been hospitalized? If you were, how long were you in? Most of all, how are you doing on the drug now? This is so scary! Thanks for your past responses to my questions. I hope everyone is doing well! Bev T. Mtnmama008@aol.com
Keisha T, March 3, 1999 - Hi to all and thanks to those of you who responded on and off-line to welcome me to this site. I have a question about weight loss. I read in this forum about those of you who, after being diagnosed, lost significant amounts of weight. Everyone I have known and know personally in CHF have all lost weight dramatically, except for me. I watched my mother lose a rapid 40lbs in the last year that she suffered through her CHF. She was diagnosed in November of 1992 and died in August of 1994.
Having been diagnosed in 1997 myself, I figured it wouldn't be long until the same thing happened to me but it hasn't. I don't eat large meals and rarely do I eat more than 2 meals a day. I do have high BP but can't see where that would cause weight to stay on as long as I take my meds. I'm not complaining at all but I am curious. Is anyone else experiencing this?
I didn't mention this in my last post but in April of 1997, my EF was 23 and after being on meds for 6 weeks, it went up to 48. I'll know my new numbers after the 11th of this month. I hope they're still high but to be honest, I'm feeling worse now than I have been in the past 6 months. I'm taking all the standards: Coumadin, Captopril, K-dur, Lanoxin, furosemide, and metoprolol. I've learned so much from reading all your posts. Thanks to all of you, I will finally be able to take an active role in my treatment. Take care. :o) Keisha. firstname.lastname@example.org
Jon's Note: I didn't lose weight. Indeed, I fight weight gain
Tony Paris, March 3, 1999 - Hi everyone, My name is Tony and this is the first time I'm posting. I was told last March I had DCM and an EF of 14. That was then, now my EF is up to 25. Until now, I've just been reading the posts. My meds are Lanoxin, Lasix, Vasotec, Coreg, Coumadin and also 400mg of CoQ10. I wanted to thank Jon and all you wonderful people on the site for all the infomation and hope you give everyone. I got this condition pretty young and this site is helping me cope. Thank you. Tony P, Age 37, EF 25.
Joy R's March 3 reply to Jon's March 2, 1999 - Hi, The main reason I stayed on dobutamine was without it, I go into failure and can't function at all. Every breath is a struggle. I have been hospilized frequently in the past year and seem to do better on continuous infusions. My doc told me he was doing this to keep me comfortable. No one wants to hear that but with dobutamine, I have a little life, I take care of myself, do computer, and sew when I have good days. I also have been on hyperalimentation since November and my heart function has improved with the nutrients. I had been suffering with malnutrition due to a problem with my GI tract. I would like to do more research but don't know how to get started. How do you get in touch with the Cleveland Clinic Forum? I am also going to ask my doc about Natrecor. I would like to get off dobutamine but without it, I go into respiratory difficulty and at least it is giving me some quality, even thought I'm losing on the quantity. Thanks so much for your thoughts and concerns. It's so nice to know you aren't the only one going through all of this. It seems that this December, I almost gave up after 18 days in the hospital. I was finally ready to die and then the hyperalimentation kicked in and I started to improve. Now my spirits are higher but I'm on Paxil. Thanks for responding. email@example.com
Jon's March 3 reply to Joy R's March 2, 1999 - Hi Joy, You just need to expand your pooter horizons. <g> Take a look at my Site Index via the link at the top of this page. Be sure to wander through the Links page. You will find several forums listed there, including the Cleveland Clinic forum. Has your doc suggested any drug trial participation, such as in TNF suppression trials or ETA blockers? Info on these can be found on my pages as well. Jon.
Al M, March 3, 1999 - Hi, I have always been interested in humor. I guess I got it from my father. My Mom doesn't have a sense of humor. Anyway, my first wife used to tell me I ought to be a comedian. She laughed at everything I did. It seems to me, based on stories and e-mails I have received from the very nice folks who frequent this site, that a book of CHF humor could be put together. Here's an example from a nice lady out in California.
"I called San Rafael, which I liked. I spent 15 days there once and had surgery. They just called me back from a message left 4 hours go. It was a nurse in cardiology. I started to tell her I had CHF and what I was looking for, and she said I need a referral. Then asked me what CHF meant." This is a nurse in cardiology - hello! Sad - but smile material.
Here's one that happened to me a couple of years ago. "Once in San Antonio, I was in this big pharmacy (they had about 7 pharmicists running around). My doc had just told me 'Don't drink more than 2 liters of fluid a day.' It was then that I realized I didn't know how many ounces were in a liter and I knew that all my measuring cups were cups and ounces only. I asked a pharmicist, 'Say, how many ounces in a liter?' He looked at me like I'd lost my mind. I repeated the question and he turned and asked the other 6; Not one of them knew. I thought this real odd so being the tactful person I am, I asked, 'What happened? Did all you guys cut class the day they talked about weights and measures?' This bit of humor was not greeted by any laughter, except from some of my fellow 'prescription waiters.' I solved my problem by buying a 1 liter bottle of Dr. Pepper and emptying it into one of my 'ounce' measuring cups. I think it came out to about 38 ounces but I don't remember for sure."
The Beat...skip a beat...goes on. Al M. firstname.lastname@example.org
Andrew G, March 3, 1999 - Hello, It has been awhile since I last posted but I have been keeping up with reading on a regular basis. I would like to request your prayers for a good friend of mine. This man is my neighbor and coaches by sons' baseball team. Like me, he is 42 and has small children, his youngest being 2 1/2 weeks old. He was told yesterday that he has cardiomyopathy, will never work again, and will die within 1-2 years without a heart transplant. I do not know any of the details (possible cause, EF) but his family is devastated. His father died at a young age from heart problems. His name is Mike. Thanks. email@example.com
Jon, March 3, 1999 - Hi everyone, As those on the heart info/page update mailing list know, I am working hard to get caught up on the vast pile of info accumulated on my hard drive the past 3 months. To those who have sent bios and recipes, please continue to be patient. I haven't forgotten you. I want to thank all of you who send me heart info of all kinds. It saves me huge amounts of time wandering the WWW, which is so big and contains so much, I could spend all my time looking and none of my time getting this info into readable form and sent out. A huge thank you to you all. :-).
Linda is doing very well and has started back to work for half-days at a time. Linz is recovering, as it turns out, from mono on top of her other problems. She is getting better but it is a very slow process as her other health problem interferes with recovery. Our thanks to you all for your prayers - more than you can ever know. They cause Jesus Christ to shower special attention on us and that is what keeps all 3 of us going these days. We ought to just roll over and give up, but with all this prayer support, we are coping extremely well and have nothing to complain about. Even maintaining the heart forum goes more smoothly when it rides on the wings of your prayers. Finally, Milo may be on his way back to our little forum. Got a letter from him today. <g> Jon.
Karen Sundfors, March 3, 1999 - Hi Jon, I have been trading e-mails with a doctor in California who specializes in peripartum cardiomyopathy. He is conducting a nationwide study on this condition and is looking for women who have, or had, this condition to participate. His name is Uri Elkayam of the University of Southern Callifornia School of Medicine, and he is the author of "Cardiac Problems in Pregnancy: Diagnosis and Management of Maternal and Fetal Disease," which has been revised several times. It's available at medical libraries. Amazon has it for $225. I thought this might be of interest to some of the women on your Heart Failure Forum. If they fit the profile and are willing to participate, they can e-mail him at firstname.lastname@example.org. Karen S.
Roger C's March 3 reply to Doug K's March 1, 1999 - Hi Doug, At first, my Primary Care Doctor was skeptical of the Pro-time Microcoagulation System (Tester). I had already talked to my cardiologist and showed him the brochures and technical data on it. He said it was ok with him but to run it by my Primary Care Doctor. One of the reasons we knew it was off is that I had a pro-time done in the doctor's office at the same time I did it on my machine. The next test after it was calibrated, was right on target. Also, this tester is being used in a lot of doctor's offices now instead of using the old way of drawing a tube of blood out of an arm. Be well. Roger C. email@example.com
Ben B's March 3 reply to Andrew G's March 3, 1999 - Hi Andrew, I will certainly pray for Mike. It would be good to hear some details because his prognosis seems pretty much like the prognosis almost everyone on this site got, many of whom are up and kicking quite vigorously 5 or more years later. Unless he has a special serious problem, I suspect his main problem is his doctor. Have him check out this site.
Bill D's March 3 reply to Jan ?'s March 3, 1999 - Hi Jan, The Mayo Clinic Pharmacist CD warns a beta-blocker like Coreg shouldn't be taken in combination with Clonidine. You're on the maximum recommended dose of Clonidine. Symptoms of Clonidine overdose are diffuculty breathing, pin-point pupils and extreme dizziness or tiredness. Maybe you should ask for a second opinion? Other than that <g>, welcome to Jon's Place! Too bad you didn't find us sooner! You would have clicked on Site Index and learned all about ejection fractions and everything else. If you haven't read it already, start by reading The Manual. Bill. firstname.lastname@example.org
Bill D's March 3 reply to Tony Paris' March 3, 1999 - Hi Tony, Welcome to Jon's Place! In addition to the forums you've been reading, Jon has compiled over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and all the questions you should spring on your doctors. You might start by reading The Manual. Bill. email@example.com
Cindy M's March 3 reply to Keisha T's March 3, 1999 - Hi Keisha, Since you brought up the topic of weight loss, I thought I'd ask a question about it too, directed toward the whole group. My meds seem to have cut my appetite. I've read that Lanoxin (digoxin) can suppress appetite and I've been taking it since I went into heart failure in August of last year. Also, many foods I enjoyed don't taste good anymore, so I've stoppped eating them. My doctors have expressed concern that I'm losing weight too fast but it's uncomfortable to eat more and I am still quite a bit overweight so I'm not worried yet. Has anyone else experienced rapid loss of weight in the early stages of CHF and did it eventually level off? Thank you for any info you can share. Best always, Cindy M, age 39, EF 25. firstname.lastname@example.org
Paul M's March 3 reply to Andrew G's March 3, 1999 - Hi Andrew, Have you introduced your neighbor to Jon's Place? He might very well benefit from visiting us. Maybe he needs exposure to the vast amount of information here. If he has Internet access, give him the URL to this place. If he doesn't, maybe invite him to your house for coffee and gently guide the subject to Jon's Place. Another option to get him more educated might be to print The Manual for him. email@example.com
Sarah F, March 3, 1999 - Hi, This is the third time I've tried to post today and have been booted in the middle every time. First of all, I want to thank you Jon, for this marvelous site. Also, I am so grateful for the people I've met in the chat room. I could have really used this when I was first diagnosed with CHF in 1993. At that time, my EF was 37. I have since been diagnosed with DCM and have an EF of 20. I am on many drugs which sometimes gets to me. I take 12.5mg Coreg twice a day, 40mg Lasix twice a day, 0.25mg Lanoxin, 20mg Prinivil, 120mg Imdur, Nitrostat as needed (I take a fair amount), 181mg Tricor, 50mg Zoloft, Welbutrin twice a day, 10mg Glypizide in the morning and 20mg in the evening, aspirin, and a multi-vitamin.
I have good docs who work well together. What one doesn't find, the other does. I really trust them. I have also been evaluated by Cleveland Clinic for transplant but am doing very well now and am monitored yearly or as my cardiologist feels necessary. My team also includes a great therapist who keeps in touch with my PCP. As a mental health professional, I had my own special issues about therapy. I took a Disability retirement from the state of Ohio in 1995, which is when I began to accept my limitations. Workaholics don't give up easily.
I fight depression constantly. According to my daughter, I have peculiar sleep habits. In other words, I never sleep through the night. My greatest problem now is that I have overwhelming anxiety attacks in the evening. Is this pervasive feeling common to DCM patients? Thanks. SAJN43@aol.com
LeeAnn D, March 4, 1999 - Hi everyone, Cindy, I don't really know what kind of rapid weight loss you mean without any specifics, but I do know that typical CHF people have been retaining fluids for awhile and the diuretics take that weight off pretty fast. I only lost about 10lbs initially and then probably 10 more over the next 3-4 months. Then it leveled off and now if I eat or drink too much, I start to gain a couple lbs back, which is why I watch my weight carefully. I know some people lost a ton of weight initially from the diuretics (I'm thinking of Al C - was it 80lbs?!). Doctors really don't want you to lose "real" weight too quickly though, because it zaps your energy, may mess up your medication dosage and can lower your immunity if you get run down.
Keisha, if you're eating a lot less than you used to and are still active, just make sure your weight isn't from retaining too much fluid! Take care everyone, and thanks again to you Jon. I'm glad your family is doing slightly better. I know the Epstein Barr virus/mono pretty much put my teenage niece in bed for about 3 months. It was hard to fight and she didn't have any underlying medical problems! LeeAnn in Phoenix, age 38, DCM, EF 12. firstname.lastname@example.org
Ruthie A's March 4 reply to Bill D's March 3, 1999 - Hi Bill, Did your Mayo CD talk just about Coreg and clonidine, or was it all beta-blockers? My old doctor put me on clonidine because my BP was 190/115 when I arrived at her office one day, and went down to 160/110 after a bit of rest. That was on top of all my other meds! My concern is that I have been feeling really cruddy since I started taking it and have been wondering if clonidine was the culprit. I take 100mg of atenolol each day too, which is a pretty high dose. If all beta-blockers don't mix with clonidine, I know what I need to do: find my new doc pretty quick so I can get off that stuff! Thanks for all your info about meds. I try to find out what I can about what I put in my mouth, but sometimes I'm not successful. To the newbies here, welcome! This place, as you can see, is chock full of information. Without each other's experiences and inputs, a lot of us would be making a lot of mistakes. Don't be strangers and always feel free to ask about what you don't understand. It may be important. I'm glad to hear Linda is doing better, Jon. Please let Linz know that my son's youth group has been praying for her. Ruthie. email@example.com
Pam E, March 4, 1999 - Hi all, I don't know if anyone has experienced this one. I am on zestril, which is potassium sparing. In the last 11 months, my potassium has droped from normal 4.1 to low at 3.2. I have since been diagnosed with essential labile hypertension. They think this is causing the potassium to drop. Has anyone ever heard of high BP dropping potassium? My other medication is Natralix. This is concerning me greatly as potassium levels are so crucial. Pam E from Australia. firstname.lastname@example.org
John Rice, March 4, 1999 - Hi, I have good news. This morning I was checking my pulse and didn't notice any skipped beats. I wondered if this means that I am out of a-fib or just doing better. Thanks to all who have given me hope. I e-mailed my governor's office and amazingly got a reply in one day. I told him that 6 months is too long for people to wait for any kind of disability assistance. What about people without families to help them? It makes me sick to think someone is doing without just because of this stupid condition. I know it probably won't amount to anything but at least they know my name now. Plus, I enjoy throwing my late father's name around, so if someone is waiting on Disability you might want to let the powers that be know about it. Someone let me know about the a-fib, I don't go back to the doc till next week. Have a great day! email@example.com
Donna ?, March 4, 1999 - Hello Jon, I have been reading the posts at this forum for 2 years now. I was diagnosed with cardiomyopathy in March of 1997. My EF was 17. After having some tests run and having a heart cath, I was told my illnesss was caused from a virus. The cardiologist on call at the hospital told me I would probably never get better and if I did everything he said, he would try to keep me alive long enough to get on the transplant list. After I was released from the hospital, I continued to see this doctor for a couple of months. My sister kept insisting we check other doctors for more information.We heard of a specialist in another town about 4 hours away. I went to see him in May of 1997. He started me on Coreg. It had just been approved by the FDA for use around that time. After 3 months of being very ill, I very slowly started to feel slight improvement. Over the next year, I really pushed myself to get well. In April of 1998, my EF was almost normal again and when I went back to the doctor in October of 1998, it was normal.
He says he does not know what to do with me now. If my medications are the reasons I am well, he does not want to stop any of it. So I will go back to see him in April and we will decide whether to stop any medicines then. There is so much more to tell about the last 2 years but I wanted you to know I have been reading the forum and so much of the information here has helped me. I told my doctor about the forum and how much I wanted to tell everyone that there is hope and you can get better and you can get well again. He said I should share my story so people do know it can and does happen. I hope and pray that everyone will get better. I would be glad to answer any questions anyone may have. Please write me at my e-mail address. Thank you, Jon. Donna. Sissy5150@aol.com
Cindy M's March 4 reply to Sarah's March 3, 1999 - Hi Sarah, I'm not sure if what I experience are clinically considered anxiety attacks but night time and early morning are my worst time for obsessing over this illness. You mentioned that you are on 2 kinds of anti-depressant meds. Have you or your doctor ever discussed an anti-anxiety agent as a possibility? I have switched to Serzone for depression and Klonopin for anxiety, and they seem to be helping a bit. I'm a former mental health professional too, and speaking for myself, I don't think I'm a great patient. <G> I too get very frustrated by all the meds but realize I'd be a lot worse off without them. I guess we'll just have to resign ourselves to sometimes being human guinea pigs. I agree with you about the great people here. Even though their hearts are damaged, they are truly made of gold. Best always. Cindy M, age 39, EF 25. firstname.lastname@example.org
Pat L, March 4, 1999 - Hi all, Cindy and Keisha, The first week after diagnosis of CHF/DCM, I lost 12 pounds of fluid and within the next several months, I lost another 28 pounds for a total of 40. Frequently, I got full quickly while eating. I think this may have been from retaining fluids in the abdomen. That was in 1995. In the past 8 months though, I have been eating a lot and am constantly hungry, have gained back 20lbs of the 40 I lost. I think it may be stress-related because I am doing the heavy eating in the evening, not at meals. Pat L. email@example.com
Sue B, March 4, 1999 - Hi guys, I haven't had time to post lately. The past month or so has been crazy. My husband had triple bypass on 1/28. A few days later, he had a stroke which affected his right side and his speech. He was in the hospital, followed by rehab for 3 weeks, home for a week when the doctors thought it would be a good idea to redo his carotid artery, which was 60-70% blocked. So he is back in the hospital after having surgery yesterday. I have tried very hard to be sure to get plenty of rest, eat well and keep my stress levels under check. I could not have done it without my family, my church and my God. I thank all 3. The support I received from my infrequent visits to the chat room have also helped greatly and I want to thank all of you for that also. I will bring him home tomorrow and these 2 heart challenged old married folks will take care of each other. Just reading all the posts from everyone has given me what I need for today. We can all be the best God intends us to be by being here for each other. Thanks extended family. To Jon, you and your family continue to be a light to me and I know where your strength comes from. By the way, in the midst of all this heart stuff, I was ordained an elder in our church. What an uplifting event in my life. Love, Sue B. firstname.lastname@example.org
Rick M, March 4, 1999 - Hi, This morning I saw my cardio-doc,who did his regular 3-month thumpings and pokings and EKG, and noticed how my weight has slowly come down to 206lbs and stayed there, and how thin my ankles are and how strong my arms and shoulders are, and pronounced himself satisfied that all my meds are appropriate and working as scheduled and that I didn't have to come back for 4 months, whereupon they will do an echocardiogram, just to see if maybe my heart is actually stronger. Wouldn't that be a hoot ? He thinks that Coreg is really working for me, and I like that in a doc. He invited me to his Greek Church festival to eat feta cheese and Greek olives, then to take an extra Lasix. See how the medical profession works? email@example.com
Joe ?'s March 4 reply to Cindy M's March 3, 1999 - Hi, Regarding gaining weight, I've had success personally in adding weight by drinking high protein shakes between meals. I add a high protein powder (there are several high quality brands available) to a glass of 2% milk. I use an unflavored brand but if the plain taste bothers you, use a flavored one. If you are concerned with the high amount of protein, then you could use one of the meal replacement powders instead, as they have less protein. If you are allergic to milk, you may want to try the meal replacement bars. All health food stores and many grocery stores sell them in the nutrition section. I like Met-RX and Dr. Atkins best because they have less sugar and more protein than some of the others. Krait008@aol.com
Steve, March 4, 1999 - Hi guys, I've been out of the hospital for a week now. I'm 40 and have CHF. My EF is 5%. Is this really terrible or what? I guess I'm just looking for some answers and support. Thanks. Stdimhcs@aol.com
Robin W, March 4, 1999 - Hi All, Another SSD question: In December I became eligible for Medicare after 24 months on SSD. I was sent a postcard to ask whether I wanted coverage or not in November. I sent it back and said no, since I have very good coverage under my husband. The postcard had to be returned by December 1. In December, they took the premium out of my SSD payment. I figured it might take a month for them to catch up. Well, they're still taking out premiums so I called and was told it sometimes takes 4-5 months to process so it was too early to file a claim just yet. Any ideas? Maybe a better number to call I don't know about? Or do I just have to wait and consider this an unintended Christmas Club? Robin W, EF 8%, age 31. firstname.lastname@example.org
Robin W's March 4 reply to Joy R's March 2, 1999 - Hi Joy, I had a Hickman two different times, but mine was a femoral line. What I used to do, was tape around the two ends leaving about ½ inch long piece on each. Safety pin the 2 ends together. I used to secure it to my underwear, maybe it would work to secure it to your bra? Also, take off any extension tubing as it makes it easier to work with. I hope this helps. Robin W, EF 8%, age 31. email@example.com
Phyllis, March 4, 1999 - Hi, When having my 6 month check up in the hospital where transplants are done, I was told that a transplant was probably a good possibilty after getting along so well for over 4 years. I would like to hear from anyone that has had one. How did you deal with it at first? What are some of the tests you have to go through? While there, I talked to a transplant doctor and he was easy to talk to and was very informing, but I would still like to hear from someone who has been through it. Phyllis. firstname.lastname@example.org
Bruce S, March 4, 1999 - Hi folks, Well, I made to the doctor today. They did the office visit stuff and said everything was great, will do blood work in May. I told my doc about this site and he said he would look it up and send others with CHF to it. email@example.com
Jan's March 4 reply to Bill D's March 3, 1999 - Hi , Thanks Bill, you won't believe this but my doctor's PA made the change to keep me on Coreg along with the clonidine. The way I found out came about when it was time to refill the Coreg. I left a message with his nurse stating that I needed a refill on the Coreg. Well, she called me back and she was almost in a panic. She said Jan, you were suppose to stop the Coreg on the third day of the low dose. I said right but you called, or at least I thought it was you. You said I was to stay on the low dose of Coreg and the doctor was going to add a new med and that it had already been called in to the pharmacy I used. She said Jan, it wasn't me, let me look at your chart again. That's when she found the notation by his PA. With this still on my mind, I went to pick up my prescription. Upon picking up my prescription, the pharmacist, whom I have know for years, said, Jan when I put it in the computer a warning came up about the 2 drugs taken together.
To make a long story short, my doctor denied the fact. Even when I complain almost every week about how I felt. Not only did I have the problems already mentioned, I had chest pain, arrhythmia and palpitations, For which I wore a Holter monitor. I've had numbness in my arms and legs upon waking from sleep. I have sleep paralysis that I think is due to depression from trying to convince this doctor that something is wrong. I even underwent a heart cath (EF 52%) because of some of my problems and that a shadow showed up on the scan of the heart during a thallium stress test.
Thanks again, and now I know for sure even when I doubt the Lord's presence in my life, He always has a way of letting me know, I'm not alone. I have read The Manual and I've read from a distance for months. I have learned a lot, which why I decided to post. Thanks again. firstname.lastname@example.org
Brenda H's March 4 reply to Milt's March 4, 1999 - Hi, I also want to congratulate you on your improved EF! I have to brag just a little. I have been smoke-free for 5 months now, and I want to thank you all, especially Jon, for your encouragement! Someone out there's watchin' out for me. :o) Brenda, age 31, EF 25%. Hansonfoxi@aol.com
Jon's Note: Congrats!
Gatha E, March 5, 1999 - Hello, Everyone out there who has directed prayers my way and sent e-mails, I do appreciate it and will get back to you when I can sit up a little better. I miss you all. I lost 12lbs on that Lasix cocktail in that lovely club med and probably coughed up another 12lbs. I am feeling so much better, thank you all. CHF and pneumonia are nasty together! Jon, the article on antibiotics is wonderful, I am having that problem with some antibiotics and sickness, could be diabetes too? Gatha E. email@example.com
Lee R's March 5 reply to Cindy M's March 3, 1999 - Hi Cindy, Regarding the weight loss, Iam also on digoxin (and Prozac) and they both tend to suppress my appetite. I still love to eat but don't have any problems with my weight. I'm at 5'4" and 115 pounds. For me it works! And yes, I've seemed to level off at 115-120. Take care, Lee. LeeRoush@aol.com
Lee R's March 5 reply to Sarah F's March 3, 1999 - Hi Sarah, I'm so sorry to hear about your depression. I have had 2 major bouts earlier in my life and am on a maintenance dose of Prozac and doing well. Every time I see the word depression and beta-blockers, I think of my own experience. My doctor and I tried 3 blockers and on all I became seriously depressed and we had to quit. At the same time, we all know that beta-blockers are so great for CHFers. Also, I think that anxiety in the evening is understandable, at least in the beginning. Sarah, we are all pulling for you and that is what really helped me - to know how much everyone at Jon's cares. Stay in touch, and one of these days I'll get to the chat room. Bestest, Lee. LeeRoush@aol.com
Lee R's March 5 reply to John Rice's March 4, 1999 - Hi John, As a fellow a-fibber, I wondered if you are on digoxin and Coumadin. Sorry if I missed your earlier posts. The best way to diagnose a-fib is with an ECG. When I went into it, I was put in the hospital on some extra drugs (I think it was a calcium channel blocker), along with my AceiInhibitor and digoxin and Coumadin, and my heart did go back into sinus rhythm. The symptoms of a-fib are palpitations, lack of energy, dizziness, pressure in the chest and difficulty breathing during activity. My question to you would be, is your cardiologist proactively trying to stop the a-fib? You can take a look at my site where you will find some additional links on the arrhythmia page. I'm at http://www.heart-help.net/. One in particular is a link to St. Luke's Roosevelt's arrhythmia site. Take care John, our thoughts and prayers are with you. Lee. LeeRoush@aol.com
Tom S' March 5 reply to Robin W's March 4, 1999 - Hi, Frankly for the paltry amount they take out for coverage, I would keep the Medicare coverage just in case something happens with your husband's insurace. My wife currently has a health/dental policy but I maintain my Medicare policy in case her job falls through, or heaven forbid, she becomes disabled or experiences a long term illness.
Brenda H's March 5 reply to Steve ?'s March 4, 1999 - Hi Steve, My prayers are with you and your family! We all know how difficult it can be, and if you ever want to e-mail me feel free. Hang in there. :o) Brenda, age 31, EF 25%. Hansonfoxi@aol.com
Samantha B's March 5 reply to Cindy M's March 4, 1999 - Hi, Regarding weight loss, I am just the opposite. At the time I was finally properly diagnosed with CHF, I weighed 109lbs. Thirteen lbs of that I found out soon after was water weight. My heart failure was causing all my other organs to malfunction and regardless how much I ate, nothing was sticking to me (passing right through, if you know what I mean). Well, now 2½ years later, I am at 124lbs, which I believe to be my ideal weight. I'm 5'5" and this is my college weight. I guess my situation is somewhat opposite of most but I believe that once your condition is stabilized, you should be able to maintain a healthy weight. Samantha B. firstname.lastname@example.org
Joy R's March 5 reply to Robin W's March 4, 1999 - Hi, Concerning the Hickman, that is a great idea. I never thought of taping the 2 cathethers together. My Hickman comes out just under my breast and I can't wear a bra but I can safety pin to my undershirt. I used to put my lines in my bra when I had my lifeport, but this has been more of a challenge. I thought my placement was bad but I think yours must of been harder to take care of. Do you still have your Hickman? I hope one day I'll lose the one I have and be well again. Thanks for responding. Since finding this site, I have learned more in several weeks than I learned since I was diagnosed with DCM and then CHF in 1997. Jon does a wonderful job and God must love him very much for helping so many others in need. Joy R. email@example.com
Jon's Note: The best part of God's love is that He loves us even when we do nothing good. Selfless love - His greatest gift
Cindy M, March 5, 1999 - Hi Guys! Thanks to everyone that responded to my question about loss of weight in the early stages of CHF. Just to clarify, about 10lbs was fluid and the most recent 30lbs was fat - I hope - for a total of 40lbs in 6 months. I have also built up a fair amount of muscle from my walking regimen, so that probably has helped speed up the loss somewhat. Anyway, don't worry because I started this thing as a BBW. Now I'll just be a smaller BW (BBW=Big Beautiful Woman). Best always. Cindy M, age 39, EF 25, Chicago. firstname.lastname@example.org
Bill D's March 6 reply to Ruthie A's March 4, 1999 - Hi Ruthie, I wish everyone would go out and buy The Mayo Clinic Pharmacist CD. I think I only paid $17 for it and it will search more recent developments at their Web site. It doesn't let you copy from it so when I try to tell people about meds I have to leave out 99% of the information! I'm not that fast of a typist! On every list of of contraindicated medicines, there is a disclaimer that says something like, "Your doctor may prescibe both of these medicines if he feels the benefits offset the risks." To answer your question, it speaks not only of Coreg but all the beta-blockers.The beta-blocker Atenolol says its maximum dose is 100mg! 160/110 is very high so maybe he thought the 2 meds were worth the risk or maybe he made the same mistake that Jan's doctor did. I'd check it out immediately! Bill. email@example.com
Jon's March 6 reply to Bill D's March 6, 1999 - Hi Bill, I think you run Windows 95. If so, have you tried the keyboard copy command? Put the mouse cursor at the beginning of the text you want to copy. Hold the left mouse button down and drag down the on-screen text to highlight all the text you want. Let go of the mouse button, then hold down the Ctrl key and hit the C key. This transfers all the highlighted text to the Windows "Clipboard." Then, place the cursor where you want it in your word processor and "paste" the info there by holding down the Ctrl key and hitting the V key. If that doesn't work, e-mail me and I'll tell you another way to do it that always works. Jon.
Bill D's March 6 reply to Steve ?'s March 4, 1999 - Hi Steve, Welcome to Jon's Place. We'll pipe you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here! Click on Site Index at the top of this page. You might start your education by reading The Manual. Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions including what you need to ask your doctors. You win the prize for the lowest EF at diagnoses. We had a couple of eights tied before. When your medicines kick in your EF will go up. Even so, your whole life has changed. You need to know all you can about CHF. Bill. Billdog@gate.net
Bill D's March 6 reply to Jan's March 4, 1999 - Hi Jan, Wow! That was a close one. The scary part is that most doctors will deny they made a mistake. It's for the same reason your car insurance company tells you not to admit you were in the wrong, even if you just plowed into a parked car! <g> They are trying somehow to get out of paying damages. It's that and the god complex doctors seem to have. Will you change doctors? I think I would! Bill. Billdog@gate.net
Milo K, March 6, 1999 - Hi, I do hope all of you diabetics are e-mailing one another. That was the whole purpose of the list. There are a lot of diabetics on the board because diabetes is the cause of many heart problems. It's hard to trust, but you've got to seek the help that you need. There might not be a cure, but there's an answer, from American Legion Magazine. We must be open with our problems and feelings. If we are not, how can we help each other? New members should write bios so we have some idea who we are talking to. As I said before, the writing of a bio is therapeutic. To put our problems and thoughts, as well as feelings, on paper helps to clarify ourselves. Milo. via firstname.lastname@example.org
Milo K, March 6, 1999 - Hi, For those of you who do not know, Jon has made arrangements so that should he die, the board will continue. I do not have any details. This was a most wonderful thing for Jon to do, so do not leave the board because one day it may not be here. It will be here. I do not infer that Jon's time is short; Not at all. It was just something he wanted done. Bless his heart.
A little humor: Doctor closing appointment with patient, "The little red pills are for your condition, and the little white pills are for when you find out how much the little red ones cost." Milo. via email@example.com
Jon's Note: The people I made the deal with are still about 3 months away from being up to speed. Fingers crossed. <G>
Milo K, March 6, 1999 - Hello, Many of you are going back and forth between the Diabetic board and the heart board. As far as diabetes is concerned, you must have tight control. Type 1 or Type 2 makes no difference. By tight control, you can avoid complications, postpone them, or make them less severe. Test your blood as often as you must to keep good control. Exercise and diet and no cheating on either one. That's all I have to say now about diabetes. The bottom line is tight control.
Of the 2 boards, I favor the heart failure board because it is the most serious of the 2 illnesses. Diabetes can cause the heart problems and it is one of the complications of diabetes. Once we have tight control of diabetes, what else is there to do? On the heart failure board, we have to learn how to die. Birth and death, everything living dies; man, animals, plants, insects, even a living cell dies. This is start and finish and that's that. It is what is between these 2 experiences that counts. Love is important, very important. The love our faith gives us, the love of ourselves. We cannot love others unless we love ourselves. If we cannot be happy, how can we help others to be happy? Humor is very important also. We must be able to laugh at ourselves. Positive thinking and self-discipline are always needed. To die with dignity, to prepare one's self and our loved ones for our death is human. Do not think for a moment that our loved ones have it easy. They do not. You tell them of your love, you hug, kiss and hold them.
They are angry with you, you know, angry because of a loss. Is our dying for their happiness? Of course not. Much turmoil is in the families of a dying person. We can do things to smooth that turmoil out. We lose life and they lose love. Cry for them because we are hurting them even though we cannot help it. When was the last time you told your spouse and kids you loved them? I hope this day and every day. After death, we have no trouble but we sure will leave them with a lot more than before we died. If we are sad, then our loved ones are sad. A lot depends on what we say, do and how we behave. Think about that and if you could turn the whole situation around, how would you feel about that loved one's impending death? Much to think about. I sometimes wonder who is better off, those who die or those left behind. That's it for now.
A little humor: If a person doesn't like the way I drive, they can stay off the sidewalk! Milo. via firstname.lastname@example.org
Bonnie, March 6, 1999 - Hi, I've been reading the posts about angina and would like to reply to some of these. My 8 year old has cardiomyopathy and has been experiencing this type of pain for 2 years. I've written about this before. The docs finally ran a treadmill test on her and said she also was having vasospasms. They said her arteries were clear when she had her cath. They tell me it is rare and really rare in children. Has anyone ever heard of a child doing this? I worry that this might lead to something more serious other than chest pain. It did seem to get better when they finally put her on diltaizem but lately the pains have started to increase in frequency. It took me 3 years to get the doctors to believe this was happening and I still feel like every time I complain about her condition, they think I'm making it up. By the way, Kaitlin will be 8 on Sunday. God has blessed us with another birthday! email@example.com
Jon's March 7 reply to Bonnie's March 6, 1999 - Hiya Bonnie, It's good to hear from you again - been a long time, it seems. Congratulations on Kaitlin's 8th. Tell her happy birthday from everyone at Jon's Place, especially Jon. :-) I wish I could help but I have been lucky enough not to run into vasospasms before. Sorry. Jon.
Brenda H's March 7 reply to Bonnie's March 6, 1999 - Hi Bonnie, Welcome to Jon's Place. It's a wonderful site. My prayers are with your family. I thought it was difficult that I had cardiomyopathy but it would be harder to see your child have to deal with it. Hang in there. I have heard of other children getting this. Lucky they finally diagnosed it. What is her ejection fraction? Here's hoping your daughter gets blessed with lots more years to come. Take care. Brenda, age 31, EF 25%. Hansonfoxi@aol.com
Al M's March 7 reply to Cindy M's March 3, 1999 - Hi Cindy, There are lots of opinions about why some lose lots of weight, some don't, some gain it back and others don't. Currently, at least one study is underway. Those of us who agreed to it in the BEST study (for bucindolol) are helping collect data in two areas, one a possible DNA investigation of what, if any, similarities might exist there, and one on a special protein that the healthy heart produces that helps regulate weight gain/loss. Apparently large numbers of people with CHF, AIDS, and cancer have a problem with that particular protein being produced. It appears that people on beta-blockers who have improvement in their condition have also shown an increase in that particular protein. Perhaps in addition to helping with reducing weight loss in CHFers, folks with AIDS and cancer may also benefit in a nontypical treatment with beta-blockers. Perhaps the biggest problem with rapid weight loss is loss of strength and muscle mass. To many, this means weakness, to some it may mean their immune system is diminished.
I went from 205 to 135lbs in about 3 1/2 to 4 months. It was just ridiculous. After 15 months of being on what we believe the real med in the BEST trial, I've gained it all back, plus a couple. Before the weight loss, I played a lot of golf. I knew exactly how far I could hit any given club. After the weight loss, when I had good days, I would go to the driving range and I was 30 to 40 yards short of where I used to hit a particular club. I attributed this to fluid reduction; apparently that may have been only part of it. I went to the driving range the other day and I was hitting the ball to within 10 yards of where I used to hit it, and believe me, I have not practiced or excercised much in the last 3 years. So at least I'm convinced those little proteins are back doing what they were supposed to be doing. I may need to be pushed around the course on a gurny but I'm going to play a round of golf this year. Al M. firstname.lastname@example.org
Gene W, March 7, 1999 - Hi all, First of all, I have put off posting here because after I see the severity of most others posting here, I realize that my CHF is very mild and in a very early stage. I would like to keep it that way. I was diagnosed with CHF a year ago. An echo showed a faulty aortic valve and left side enlargement with an EF of 60. The cardiologist said that if I kept my blood pressure under control and avoided stress, I could live 40 more years (I am 54). I am on a drug regimen of calcium channel blockers, an ACE inhibitor, thiazide, Lasix, and a potassium supplement. I also have severe asthma.
What I would like to know is, how do I know when to back off on my normal activities? Lately, I have a trend of being in fairly good shape on Monday, following a weekend of rest. As the work week goes on and I work longer hours, and experience more fatigue, I start retaining more fluid and by week's end, it is a strugle to get through Friday. Usually by Thursday I have to increase my Lasix and the swelling will improve by Monday, then the whole cycle begins again. To what extent am I accelerating the progression of CHF when I get exhausted? I need to keep working full time as long as possible but I don't want to shorten my life. I am sorry for the length of this post but I have not been able to get my cardiologist to take time to answer these questions. Maybe someone out there can tell me if I am just worrying too much. email@example.com
Harry W, March 7, 1999 - Hi, I'm new to this forum but not new to CHF. I was told 3 years ago when I went to my family doctor thinking I had some kind of chest infection. I had always been healthy (I have never smoked) except for Gout, which I have had since I was 14 years old and knee injuries from playing college football. I was extremely fatigued and out of breath, and my wife said I was gurgling at night. A chest x-ray indicated that I had a enlarged heart. I was immediately sent to a cardiologist (American Heart Institute) and put on Lasix, Capoten, Coumadin and Lanoxin along with my gout medications and potassium. Last year they changed me to Demadex and added Coreg. My EF was 29 last September. It had improved from 25. The doctor told me it was probably caused by heavy drinking through the years and possibly my thyroid, which they discovered was inactive at the same time.
I have to say that after the initial shock, the doctor made me feel comfortable that I could live a long time with meds and diet and limited excercise. During the past couple of years, I have abused my diet (too much salt!) and occasional drinking! Last week, I ended up in my doctor's office with a-fib and a heart rate of 187. I was transported to the ER and my heart rate was up to 228. I was released from the hospital the next day and am taking 200mg amiodarone twice a day. My wife found this site while trying to get info on amiodarone. Since then, we have read The Manual, Site Index and all the posts. We are both scared and I wish I would have listened to my doctor 3 years ago. My heart is still not in rhythm and they are going to zap me on the 16th, if it doesn't return to rhythm. Until I read this info, I did not know what an EF was so I called my doctor's office yesterday to find out. I would love to hear from anyone who is on amiodarone. I don't like it but the doctor says in 2 weeks, they will start me on a new drug (don't know the name) just approved by the FDA but they are out of stock now. My doctor was involved in the clinical trial. I love being outdoors and don't want to turn blue from this drug! Sorry this is so long. Thanks for being there! firstname.lastname@example.org
LeeAnn D, March 7, 1999 - Hi everyone, It sure does seem like a lot of heart patients also have diabetes. I know that diabetes can cause heart problems but I was wondering how common it is the other way around - if the heart problems and medications might cause diabetes. I know Coreg and Lasix can but how much and how long? I'm also wondering if having a certain type of diet might lesson your chances of developing diabetes. Because I've been told I'm a good transplant candidate in the future but not symptomatic enough right now, I don't really want to blow it by not doing all I can to not get diabetes. Does anyone else ever worry about this? Like Milo was saying about leaving loved ones behind, I know it would be very hard on my children to lose their mommy and I really want to be proactive about this! LeeAnn in Phoenix, DCM, age 38, EF 12. email@example.com
Candy, March 7, 1999 - Hello, I haven't posted for awhile. I've been busy getting over an infected foot and going through a period of inner reflection. I have also been getting all the paper work through for the many types of disablity benefits I am entitled to. Fortunately for me, I have good health insurance at present and can start to get long term disability from my work. However, at the end of this month, I probably will have to start paying the premiums. The problem is I don't know if I can afford the $425 a month on the monthly amount I am going to get from the long term disability benefits. This sure is frustrating. I don't want to be sick anymore and I want to go back to work. I felt better for saying it anyway. Now back to reality. I learned my benefits are retroactive from October. Does anybody know how long I can get benefits through long term disability? CMPotila@aol.com
Cindy M's March 8 reply to Milo's March 3, 1999 - Hi Milo, Welcome back! I'm sure I speak for many, when I say I've missed you. Your wisdom and sense of humor really add a lot to the forum. Your post about how our illness affects our loved ones brought tears to my eyes with it's painful honesty. I hope to hear more from you again soon. Best always, Cindy M, age 39, EF 25. Cleighmc@aol.com
Lee R, March 8, 1999 - Hi Everyone, I could use a little input on ACE Inhibitors. I have read the pages here but has anyone else developed a cough and had to switch meds? Mine started with a sore throat/cold/cough but the cough hasn't stopped. The cardiologist and I decided together to give it another week (which will make 3 weeks) to make sure it wasn't just hanging on from the cold. It seems to be a tickle and worse at night. Any input appreciated. As long as I'm going on and on, can we rehash the night sweats topic. I hate to have to go through all those Archives. Is anyone else with CHF having them? Yes, I do take estrogen and Vitamin E. It sure is puzzling. On a more serious note, my husband (SkiBumRR@aol.com) could use your prayers. He has been diagnosed with colon cancer. It looks like stage one and he has a CAT scan scheduled and then surgery. Thanks so much for your help. Special blessings to all of you! Lee. LeeRoush@aol.com
Liz J's March 8 reply to Gene W's March 7, 1999 - Hi Gene, Welcome to Jon's Place. We are all at different stages with our CHF and cardiomyopathy. You have a reason to worry. If your doctor is not listening or giving you good enough answers, it may be time to find a doc who will. It is not good to keep going to the point of exhaustion. You are making yourself worse. What kind of faulty aortic valve do you have? Check out everything at Jon's Place, there is lots of good info. Liz. J. EJa83911@aol.com
Steve S, March 8, 1999 - Hi everyone, I posted last week. It was short and I forgot to give a last initial. Anyway, I think I memorized The Manual by now. This is so nice to know you're not alone. I'm 40 and was told my EF was 5% in the hospital. I understand with the meds and time that will improve. I'm taking metoprolol, Lanoxin, furosemide, captopril, warfarin & potassium. I also have a-fib and I'm gonna get zapped in a couple of weeks. That sounds like fun. Why can't I get a reason on why I have CHF? All I hear is maybe a virus. My legs are constantly tired and my energy level is not there. Does this improve? I was told I can get out and exercise. I like to ride a bike but the Pennsylvania winter is still going strong. I look forward to this site everyday. God bless you all. Stdimhcs@aol.com
Bill D's March 8 reply to Gene W's March 7, 1999 - Hi, No Gene, I don't think you are worrying too much. I think you're just going to have to talk to your boss and tell him you just have to take it easier, not harder, as the week progresses. CHF doesn't give us any choice in the matter! Some of us are lucky and are able to work longer, but sooner or later we all slide down to the bottom of the hill. Overworking yourself isn't a good idea. Welcome to Jon's Place! We're glad to have you aboard. Bill. firstname.lastname@example.org
Paul M's March 8 reply to LeeAnn D's March 7, 1999 - Hi Lee Ann, About your question, does heart problems cause diabetes, I'm sure there are many patients out there who are borderline diabetics and don't know it. Then when they go onto some of these heart meds that causes the body to require more insulin (natural), then all of a sudden they are diabetic. If they didn't have heart problems, who's to say that they didn't already have a predisposition to having diabetes in due time? A lot of people are prone to adult-onset diabetes. Who's to say they also have adult-onset CHF? I think doctors are quick to blame their heart problems on diabetes if it is convenient. Mine did. Less than two years later, my DCM has completely disappeared. Obviously the doc's statement about my 35+ years of diabetes causing my DCM was in error. Isn't hind sight always 20/20? <G> email@example.com
Bill D's March 8 reply to Harry W's March 7, 1999 - Hi Harry, It's funny how all our doctors lay the blame on us for all of our ills! <g> We have been discussing the pros and cons of amiodarone for a month now. Read what's here and go back in The Archives for 1999 and read all about it. You'll also read information about different experiences getting "zapped." The last of your worries should be about turning blue! <g> Please find out the name of the drug the FDA just approved in place of amiodarone! We'd all like to know. I hope the "Zap" is successful and welcome to Jon's Place! Bill. firstname.lastname@example.org
Bill D's March 8 reply to Candy ?'s March 7, 1999 - Hi Candy, I'm puzzled about your paying $425 a month premiums for long term disability insurance. You are going to have to look at that policy to find out how much it pays, how long it pays and how disabled you have to be to collect. They are all different. I was under the impression that most disability insurance premiums were suspended while you were disabled. Don't just read the literature, read the policy itself. Bill. email@example.com
Jack W's March 8 reply to Gene W's March 7, 1999 - Hi, I wanted to let you know that I have had similar experience with fatigue. I suspect I cannot answer your question with respect to CHF progression, but I wanted to offer my experience with fatigue. I am also working full-time, 45+ hours per week, have DCM, EF=44. I guess my advice would be to pay strict attention to getting the right amount of rest. If you are only getting 6 hours of sleep on week nights, you need to work towards getting 8 or need to set aside a half hour of quiet time on weekdays after work to take a rest in a quiet place. We set up my lounger in a room where I can close the door and just rest, and relax. Maybe you've relaxed to a point where you get a jolt of relaxation going through your body. It's not sleep but profound rest. This half hour helps me get through the evening without feeling so pooped.
My second thought is on CHF progression or working myself to death. When I was first diagnosed, I was very worried about this. It still bugs me but I landed with the conclusion the you must live for the present. It may be wise to get your affairs in order but worrying too much was really dragging me down. So like my cardiologist says, in a way which gives me confidence, "You're stable, take your meds, watch your sodium, go for a walk, and get the heck out of my office." Along with listening to my body when it calls for rest, support from loved ones, and keeping the faith, this makes life pretty good.
Janet T, March 8, 1999 - Hello All, I haven't posted for a while but I'm still here. I got the news last Friday that I had been approved for Social Security Disability. I started the whole process in September of 1997, with an EF of 10%,and it went all the way through to a hearing before an administrative law judge. Even the judge himself was appalled that it had gone as far as it did, and stated my date of Disability to be the day I had surgery to remove my cancerous lymph nodes in September of 1996. He did this because I have adriamycin (chemo drug) induced cardiomyopathy and they believe that my heart was damaged with the very first chemo cycle. He asked me at the hearing if I wanted it to date back to 1996. I was confused because cancer is not considered to be a Disability. I had to ask my attorney to explain it to me before I would answer. So, after the endless paper trail and discussions with my state Senator's office, I'm finally approved. To all of you out there just beginning this process, don't give up!
Here's my thought on weight training. At my cardiac rehab, they have weight equipment and train individuals how to use it properly. The key word here is individuals. I was trained on it, most others were not. Once again, as Jon and others on this board have said many times, talk to your doctor before you begin anything! Individual's age, lifestyle, current general health, even mental health must be considered. If you really want to do something, ask your doctor to help you in achieving it. You don't have to have an all or nothing attitude to do the things you want to do. It's learning to live within limitations that are both physical and mental.
I also wanted to say that in January I had an EP study and ablation done. Virtually all my extra beats and missed beats have stopped. It has been wonderful to not have those sensations in my chest. Janet T, age 46, EF 25%. firstname.lastname@example.org
Tom S, March 8, 1999 - Hi all, Lee R, Concerning the cough you experienced with one of your meds, a number of months ago I wrote on this forum how I had developed a nagging, hacking cough that kept me awake for hours at night until I dropped from sheer exhaustion. My cardiologist suggested dropping Lotensin for 2 weeks to see what would happen. Keep in mind I had been taking Lotensin for nearly 3 years. The cough not only disappeared but since I dropped Lotensin completely off my medicine list, I have not experienced a problem with the nagging, hacking cough.
Steve R, I also suffer from exhaustion, particularly of the extremities, and am rarely without leg or foot pain of some sort. This has been with me for nearly 4 years and there appears to be no sign of let-up,even though my EF has improved from a low of 15 to a current 40%.
Arlene B's March 9 reply to Jack W's March 7, 1999 - Hi, Regarding how long one may live, I agree with your doctor. Take your meds, watch your salt, and listen to your body. Why worry? You could get hit by a truck or a meteor tomorrow and would not have died from CHF. Goldysbest@aol.com
LeeAnn D's March 9 reply to Paul M's March 8, 1999 - Hi, If it is adult onset, then it can probably be controlled by diet, right? So I've already started cutting sugar, which I don't eat much anyway but carbohydrates are sugar too, right? Anyway, besides sweets, what are the worst things to eat that I should avoid if I want to not become diabetic? I'd also like to tell Milo, welcome back. I for one have definitely missed you! Has anyone heard from Karen O lately? LeeAnn in Phoenix, age 38, DCM, EF 12. email@example.com
Jon's Note: FWIW, My kid brother has adult onset diabetes and requires insulin injections
Jon, March 9, 1999 - Hi everyone, The forms server I use is currently down so no one can post but it will hopefully be up by tomorrow morning. Please be patient. I am entering a drug trial tomorrow afternoon, so if the server is still down when I get home, I will start banging keys and hook up to a different server for the duration. It may not be until well into the evening in that case, though. Jon.
Jon, March 10, 1999 - Hi, I've temporarily switched forms servers so the forms are working again. Jon.
Jay Q, March 10, 1999 - Hi, I am a CHF novitiate at age 75 and am facing a dilemma and would like to tap the experience of veterans in this select community. I realize that probably none of you are MDs, let alone cardiologists, but it would be helpful to have a few anecdotal comments from those who have been there. Last July, after a 3 day bout of night lung congestion and some accompanying afternoon fatigue, my internist found I had left bundle branch block and DCM. Echo disclosed an EF of 10-15%. I was put on 5mg Zestril, 40mg furosemide, and potassium daily, and advised to give up competitive sports, much of the salt from my diet, and my daily dinner glass of wine.
Since then, except for that initial bout of symptoms, I have been symptom free (well compensated) and have enjoyed an active high quality life. Morning systolic pressures are around 106 with heart rates in the sixties and exercise pulses are typically 106 to 110. Last January, at my insistence, I obtained a cardiologist in a neighboring city who gave me another ECG, confirming the LBBB, and reviewed my internist's records. He recommended I continue my new life style, add aspirin to my meds, and that after my next visit to my internist, I start up-titrating the Zestril and begin a Coreg program. Here's the problem. I gather from posts to this forum and Jon's excellent write up that Coreg is potent. What bothers me is that the tests on Coreg's benefits seem to have been on patients with moderate to severe CHF symptoms, not absent to mild as in my case. I am worried that Coreg may diminish my quality of life, especially the physical activity I enjoy, and that it may affect vital functions such as short-term memory, kidney function, or cause diabetes. Worst of all, I fear that such changes may be irreversible.
In this light, I am mulling over telling my internist next week, "Thanks but no thanks. Without convincing symptoms or objective evidence of further deterioration, I wish to continue the present dosages. Let's hold on the up-titration and Coreg until demonstration of further need." Thanks, best wishes, and cheers. Jay Q. Affinis@aol.com
Harold Weems' March 10 reply to LeeAnn D's March 9, 1999 - Hi, I have been taking insulin for decades and am convinced that it is the best med for diabetes. It has been in use for 77 years and has been used by billions of people, and complications are rare, but above all it wprks. The only diet to follow to prevent it is to follow a good diet, without going overboard on any one food group. Eat at least 5 vegetables and fruits a day. Watch the simple carbs - sugars is another name. Don't go overboard on proteins or complex carbohydrates, either. In other words, eat a good normal diet. firstname.lastname@example.org
Donna B, March 10, 1999 - Hi, I have a question and hope that someone here might be able to give me some feedback. I have a friend that called me to say she had watched a TV program that stated that Olive leaf extract is good for people with cardiomyopathy. I went to the health food store and picked up an information sheet they had but there was no mention of cardiomyopathy. I believe that herbs can be useful but I am not going to take one if there is not any proof that it would be advantageous to me. I need to know if it would interact with any of the current meds I take, like Zestril, Lasix, Lanoxin, Coreg, CoQ10, Zoloft, premarin, and various other supplements. Does anyone know anything about this herb? Ripcord@penn.com
Jon's Note: Search here: http://medherb.com/1HERB.HTM
Paul M's March 10 reply to LeeAnn D's March 9, 1999 - Hi LeeAnn, I have not seen any direct evidence that controlling your diet will affect whether you will get diabetes or not. I have heard of cases where overweight persons get diabetes and their control improves with weight reduction and exercise. In modern diabetes care, us diabetics count carbohydrates. Sugars (sweets) are carbohydrates too. I'm an insulin dependent diabetic and I do eat my sweets but I also count them. If I have a meal that is light in carbos, then I can have more of my sweets later. Dietetic foods usually have fewer carbos but they still need to be counted. Some foods are somewhat better depending upon the rate your body asorbs their sugars. Sugars found in fruits (like orange juice) are absorbed faster than sugars found in complex carbohydrates (like spaghetti) but when considering your overall diet plan, they both count as carbohydrates in your diet. Many of the dietetic foods contain sorbitol. It is also a carbohydrate but it is absorbed by the body at a slower rate. I'm also glad to have Milo back. email@example.com
Ben B, March 11, 1999 - Hi, I just heard a report on the network news, supposedly from the American Heart Association, that the taking of ACE inhibitors and aspirin can cause heart attacks. Has anyone else heard this? Does this mean don't take them together, or don't take aspirin for headache? I take ½ aspirin daily and I thought this was supposed to prevent heart attack. I'm can't believe this insanity. firstname.lastname@example.org
Jon's March 11 reply to Ben B's March 11, 1999 - Hi Ben, Please be careful about believing the general media about anything medical. Of course, listen and ask questions, but don't believe it till you've confirmed it through someone with higher standards <g>, such as your doctor.
In this case, Dr. Topol did an analysis of other studies - not heart failure studies, so the patients he refers to were not CHFers. One of the studies he analyzed (GUSTO) was in itself an analysis of medical records. Dr. Topol did not do an actual trial. He reviewed existing medical study records and drew a a conclusion from them. This is a perfectly valid way to form an hypothesis or suggest a trend - but not to draw a definite conclusion. It means further study is needed, or a trial, to find out if there is a problem. Note that Bert Pitt of Michigan says not to quit taking either drug without talking to your doc. He is the CHF researcher leading the TNF research that is having such success. He's right. If you are worried, talk to your doctor first. I take aspirin and an ACE inhibitor and at this point, I'm not worried enough to even ask my doctor. I'm not saying Dr. Topol is wrong. I am only saying that as of right now, the proof isn't there to scare me.
Some recent studies indicate that aspirin may interfere with the action of ACE inhibitors (because the converting enzyme also degrades bradykinin). However, another recent study contradicted this, so I am waiting for a study aimed at just this topic. I admit to being skeptical since my own experience with ACE inhibitors has been enormously positive and I have been taking aspirin almost the whole time. On another note, be aware that lately, researchers are also announcing "results" that their study was not designed to study. It's just a trend they think they see in their data. When that happens, the results are definitely not definite. <g>
Off the topic, I may not be in a drug trial after all. My EF may be higher than 35%, which would disqualify me for this one. I'll know in a day or so. The tech estimated it at 58%. <g> Also, my daughter is in the midst of term paper mania so I am having a hard time getting pooter time during the evening. Bear with me. At least, the forms are fixed! Jon.
Ben B's March 11 reply to Jay Q's March 10, 1999 - Hi, I don't know about Coreg, as I have just started it myself and the dose is so small I have no side effects at all. As far as the Zestril, I found that my dose was right for a long time, first at 5mg and then at 10mg. Then I began getting breathless at times and the doctor upped my dose accordingly. Zestril has had nothing but a positive effect on my lifestyle but was only increased as I needed it. I am surprised your doctor is so anxious to add medicines, because mine is just the opposite. If it's not broke, he never wants to change anything. I think the doctor is looking more towards your long term survival rate, remembering that other physical conditions also have treatment but death is untreatable.
Tom S' March 11 reply to Jay Q's March 10, 1999 - After 3 years on Coreg (25mg twice a day), I am yet to be convinced that it is the wonder drug the cardiologists are claiming it to be. The other side of that equation is, would I be worse off if I were not taking Coreg twice a day? Lastly, I have been having a very annoying bout of vertigo and as long as the room isn't spinning around, or my BP and pulse rate stay near normal, my cardiologist doesn't seem to want me to darken his office door. I think you basically said it all in your well written and obviously well thought out post on the subject of becoming yet another guinea pig in yet another drug test. I for one will continue with the Coreg treatment simply because my options are pretty thin.
Linda O, March 11, 1999 - Hi, Where are the amiodorane takers? I would like to hear different opinions about pros and cons. Greg, I cannot get your e-mail address to work. Where are you, Karen O? I hope you are ok and feeling stronger. Linda O, age 59, EF 24. email@example.com
Jeanette Walberger, March 11, 1999 - Hi, I recently was diagnosed with viral cardiomyopathy. If anyone could help me understand and explain to me on this topic, I would be grateful and very appreciative. I have not really dealt with this and feel very alone, even though there are many people who have the same disease. I guess I'm hoping to find someone to talk to who understands what I'm going through and how to cope with this awful disease. Please help me to get on the right path, if this is not the way. Thank you very much and I hope to hear from someone soon. firstname.lastname@example.org
Candy, March 11, 1999 - Hello, I changed my e-mail address from CMPotila to the one at the bottom of the post. My LTD has been approved. It is retroactive from January 25th. Thanks Bill, I also found out my employer will continue to pay my insurance premiums. This is very good news for me. Also, thanks to all those who e-mailed me with info. This is a good support system. On another note, I have been feeling pretty good lately. Except for SOB once in awhile, it seems like my illness has disappeared but being ever the cynic, I am sure it is because of the round of antibiotics I just finished for an infected foot. I won't do anything as foolish as stop meds or quit seeing my doctors. I'm just hoping it will continue for awhile. GrPota@aol.com
Karen K's March 11 reply to Jay Q's March 10, 1999 - Hi Jay and All, I'm glad I caught your post. I was diagnosed with CHF resulting from cardiomyopathy at the age of 48. I also was put on medication (Propanalol, Coumadin, Capoten) and told to hold the total salt in my diet to 2 grams a day. My EF at diagnosis was 19% and my doctor told my husband I would go downhill within one year and require a transplant within five. I chose not to return to that doctor.
My ejection fraction improved within the first year to 42% and is now considered stable at 38%. So you can see, I fall outside of the guidelines for Coreg. I had read about Coreg at Jon's site and as soon as I saw it had been approved by the FDA, I downloaded a ton of information and took it to my doctor. He, in turn, checked with a doctor at a nearby teaching hospital, where clinical trials had been held. The cardiologist simply said he couldn't say for sure if Coreg would help or not. I'm also a Class 1. Reading what I had, I could see little to the downside so I started Coreg and have been on it for 18 months.
A lot has changed in my life; I was awarded Disability, which allowed me to create a new life; one that I could live with. So I can't say it is necessarily the Coreg, but I have to say all in all, I am doing overall better than I was. I sure hope this helps. I'm headed for at least a 3 week stint in California tomorrow. My mother is having hip replacement surgery and my sister who was to have been with her has been diagnosed with cancer and is undergoing chemo for 6 months, folllowed by a bone marrow transplant. My brother will be there with me for one of the weeks. Take care. Karen K, age 56, cardiomyopathy 8 years, EF = 38%. email@example.com
James L, March 11, 1999 - Hi, If you have CHF and are diabetic, this may interest you. I previously posted a description of a problem with periodic abdominal discomforts which sometimes led to attacks which were very scary and felt like a collapsed lung. I would struggle for breath for several minutes. My doctors were mystified and prescribed nitro, which had no affect. These episodes were becoming more frequent, 6 or so a day of discomforts, and hoping they wouldn't become full blown attacks.
I was reading the Sunday paper and ran across an ad for glucophage. Having been prescribed 500mg twice a day, I read the ad, and it stated that you should not take Glucophage if "you have congestive heart failure, which is treated with medications, e.g. diogxin (Lanoxin) or furosemide (Lasix)." It could lead to "lactic acidosis which can be fatal in up to half the cases." I was taking furosemide, so l discontinued it immediately. That very day, my discomforts eased. I have had only one brief episode in the last 5 days. I called my doctor and he said, "Thanks for calling, I wasn't aware of this conflict." Check your list of medications and see if you are taking this potentially deadly combination of medications. Take care out there. Jim in Maple Valley. firstname.lastname@example.org
Tom D's March 11 reply to Harry W's March 7, 1999 - Hi Harry, I have been on 400mg of amiodarone since 3/98 when I was diagnosed with CHF, V-tach and A-fib. They also installed an ICD. A few months back, the amiodarone was reduced to 200mg. Because of the many posts relative to amiodarone and turning blue, I asked my doctor yesterday about the drug. His comment was that the dose would have to be in excess of 600mg. One also has to weigh the consequences. In my case, v-tach leads to v-fib, which leads to daisy pushing. Hang in there. All our prayers are with you and your wife. email@example.com
Jim M, March 11, 1999 - Hello, I am new to the Web but wish I had it 6 years ago. In 2/93, I had a heart attack, which thankfully was mild. Unfortunately it was just the beginning of my problems. While having angioplasty, there were complications and I was taken in for emergency bypass surgery. Before they got me on bypass, I suffered severe damage to my heart. My EF is 26 and I'm always tired. Since my surgery, my lifestyle has changed. I no longer work. I had a plumbing buisness but lost it. I suffered trauma during the operation (I woke up) am on a ton of meds and feel the best part of me was left on the table. I'm sorry to see so many others suffer like me and worse. However it is comforting to know there is a network of people who care and can identify. As I said, I am new to this and can use any info on chat rooms, either day or night. Thanks for your help and hope I can be the same. Jim M, age 43. firstname.lastname@example.org
Candy's March 11 reply to Bill D's March 8, 1999 - Hello Bill, I changed my e-mail address. Thank you for the support. I checked into it. My company pays the premiums. The trick now is to stay on an unpaid leave status. The personnel director said she needed to know when I'm returning to work so they'd know if they should terminate my position. The scary thing is I need their approval to stay on an unpaid leave. Oh well, my mother always told me not to leave all my eggs in one basket. I'm waiting for SSI and SSD to be approved. GrPota@aol.com
Christine, March 12, 1999 - Aloha from a new member on board. I e-mailed Jon the other day since I could not get on the board. My name is Christine and I am 48 years old. I just had a heart attack on 12/30/98 at work. I am also an insulin dependent diabetic for 21 years now. I have always watched my diet and exercise but still had to come down with this disease. I must say work contributed to this since I was a para-legal with a large law corporation and worked full time for 4 attorneys. My need to slow down came with a real shock on 12/30/98. I was diagnosed with heart blockages in some places as much as 90%. They could not do a bybass or angioplasty as I have smaller than normal veins, about 2cm or less, so I am looking for someone who has this problem and how their doctor or hospital dealt with it. By the way, I also have been going for chelation therapy which I think is the reason I am around. This is an infusion of EDTA with a saline solution which is infused into you over a 3 to 4 hours. My cardiologist did not disagree with this since I had no other surgical option. Well folks, let me know how you who have a similar condition dealt with this. I will be waiting to hear from you. Aloha and hang loose as they say in sunny Hawaii! Chrisd1950@alo.com
Ginger, March 12, 1999 - Jon, an EF of 58% is wonderful. How does that fit in with your lousy Vo2max? I don't know how one can be so good and the other so bad. <LOL> But hey, the EF came up, so maybe the Vo2 will too. Thanks Jon, for all you are doing for us. We are grateful. Cya's at chat. Hugs, Ginger. email@example.com
Jon's March 12 reply to Ginger's March 12, 1999 - Hi Ginger, There are a couple of possibilities for the difference between my EF and Vo2max. It could be Coreg, which is known to raise EF to normal or near-normal but do little for functional status. It could also be that I am so badly out of shape that I just need a physical tune-up to raise oxygen use. Now, this is where it gets sticky. My CHF doc told me to start resistance training - that's right - lifting weights. <G> My EF is now normal and I am an experienced lifter, which he knows. Talk about timing - Jill S had just sent me a very interesting article about the many CHFers who have normal systolic heart function but still have heart failure. Signed, Shows How Much I Know - not.
Jon, March 12, 1999 - Hi everyone, A quick update, my friendly neighborhood research manager called me this afternoon to let me know that Doc Porter took a long look at all my results from yesterday, and says my EF is officially 45%. That means the tech was off by a whopping 13%! The weight training is still a go, per my CHF doctor. The 45% is up 5% from 7 months ago, so I'm very happy, to say the least. Whoever thought, when I was diagnosed with a 13% EF, that I would still be here running off at the mouth everyday with an EF of 45%?! :-) Jon.
Joy R's March 12 reply to Jon's March 11, 1999 - Hi Jon, Finding out you're improving must feel wonderful, I can't think of better news. I don't understand about the Vo2max, I don't know what that is. My biggest problem has been shortness of breadth and it's a pain being like that. I have great lungs, just not enough blood flow to keep enough O2 going. I also get looks when parking in handicapped spaces and I've learned to ignore them. Hey, I've only been driving again for about a month, after 2 years, that's a really big deal. I only had to be rescued once early this month when I ended up in the ER again. My poor husband is used to talking to ER nurses now. Good luck with the weight lifting. Take it slow and pace yourself. Keep up the good work. firstname.lastname@example.org
Jon's Note: See this page
Lee R's March 12 reply to Tom S' March 8, 1999 - Hi Tom, and thanks for your comments regarding cough and Ace Inhibitor. I'm now off Prinivil and on Cozaar. I know what you all mean about being tired from just a sore throat/cold! Bestest, Lee. LeeRoush@aol.com
Milo's March 12 reply to Steve's March 4, 1999 - Hi, You write you want answers and support. EF of 5% isn't good. Make sure the doc said 5%, not 15%. Confirm EF with a second opinion; a third wouldn't hurt. If you pray, continue to do so and ask for prayer from all members of the board. Check with Jon for advice, because he knows a lot, CoQ10 may be an answer. I really don't know how an EF is improved. Knowing Jon, I would guess he has gotten to you already. The following is from "Success With Heart Failure" by Marc Silver, MD:
Ejection Fraction, one of the most important measurements we take, which serves both as a baseline measurement and as a means of following a person's progress, is of the ejection fraction, which is the amount of blood the heart ejects or pumps with each contraction. The normal ejection fraction for the left side of the heart is approximately 50-60% and 45-55% for the right side. Obviously, there is a gradation, but anything below 25% suggest an unfavorable prognosis. A measurement of about 35% or higher offers a much better prognosis of long-term survival. (Note, however, that this is quite variable: someone at 37% may not do as well as someone at 15% or 20%!)
Three methods exist for measuring ejection fractions, and each makes the measurement differently. To get more information and enhance the reliability of the diagnosis a doctor may use two or more of the methods. When these tests are complete, patients can be fairly certain of the accuracy of both the left and right ventricle ejection fractions. If your doctor fails to perform one or more of these measurements, you should ask why so that you can understand how your doctor is evaluating your degree and type of heart failure.
Milo. via email@example.com
Bill D's March 13 reply to Jeanette W's March 11, 1999 - Hi Jeanette, Welcome to Jon's Place! In addition to the forums, Jon has collected over 200 pages and links to information you should know about Congestive Heart Failure. On the top of this page, click on the big, red, Site Index. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, on the newest experimental drugs and procedures and how we try to cope with CHF. You are up to your armpits in just the stuff you are looking for! <g> When I hear a girl tell me, "I would be grateful and very appreciative," I always try and oblige! <g> Bill. firstname.lastname@example.org
Bill D's March 13 reply to Christine ?'s March 11, 1999 - Hi Christine from Hawaii, Welcome to Jon's Place. This is the best place to answer all the questions that your doctors don't have time to answer. Go to the top of this page and click on the words: Site Index. You should start by reading The Manual. Then start burrowing in to all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, how long you'll probably live and interesting stuff like that. I've talked to folks who have had chelation treatments and they all say the same as you. Of course, the medical community at large tells us they are worthless but only harm your wallet. <g> You'll be happy to know that arteries which are 90% blocked don't result in 10% flow! It's more like 30% flow because of what's called the venturi effect. The blood is really whizzing by the blocked part and goes much slower in the "open" parts. I think about that and it makes me feel better! <g> Bill. email@example.com
Bill D's March 13 reply to James L's March 11, 1999 - Hi James, There is no excuse for your doctor's not being aware that Glucophage contraindicates calcium channel blockers, digoxin, furosemide, morphine and Zantac! Doctors either know about the medicines or they check with a pharmacist before prescribing them to a patient. It's even in my Mayo Pharmacist CD. That yo-yo almost killed you with his ignorance! If you don't fire him, he'll probably get you next time. Bill. firstname.lastname@example.org
Roger G, March 13, 1999 - Hi, I just wanted to let you folks know how good and bad things have been. My EF has gone back up to 40 from 18. CoQ10 and what the doctor tells me. I listened a little too much to the chatter here at Jon's and forgot that my doctor knows a whole lot more about hearts than most of us. Never forget to consult your doctor. Roger G. RG2@prodigy.net
Bill D's March 13 reply to Jim M's March 11, 1999 - Hi Jim, What a horror story! Was your anesthesiologist not paying attention or what? We're glad to welcome you to our leaky old boat. You can sit right down beside us and help us bail! Ginger hosts our chat room twice a week and she'll be in touch. (Won't you, Ginger? <g>) Be sure you look through Jon's "Site Index" at the top of this page. You'll learn all the answers to all the questions you never thought to ask. Best of all, you can see some of us in "living color." We were allowed to put in pictures back when we still looked good. Bill. email@example.com
Bruce S' March 13 reply to Jay Q's March 10, 1999 - Hey Jay, You got some good posts, so here's one more. My doc was sure Coreg was the way to go after I got out of the hospital. Those first small doses didn't do very much, but that last increase to 50mg twice a day was tough. It took about two months to get back to what 25mg felt like. My doc told me to hang in there and in time, I would feel better. Well, after 15 months, now that day has come. I can't tell you what it would have been like without Coreg, but now I leave for work at 6:30am and return at 6:00pm. I am a self-employed paint contractor. I think I feel better now than I have felt in the past several years. I did get home early today so I could till in my garden for about a hour and if it doesn't rain tomorrow, I'm going to plant and I did not do that last year. I also take 10mg Zestril twice a day, and 80mg furosemide twice a day. Jay, I hope this helps you understand how it helped me and the others, how they've done.
Jon, thanks for this great place to come for help and information and more than that, all the great new friends. I'm very happy to see you get new EF of 45 and lots of luck with the weights. I did that one time for about 2 weeks and decided that 12oz weights were all I could lift. I want to thank those who e-mailed me, it was great hearing from each one of you. I will try to get back with you but with work, two teenagers, church, and about 10 more things, I just don't have much time. May God bless and keep each one of you. Goodbye. firstname.lastname@example.org
Della, March 13, 1999 - Hi, I just dropped in on this site this evening. I am 64 years old, still working and have all kinds of medical problems and long time meds. I had CHF in 1995. I didn't have a clue what it was and blamed it on my asthma. In 1997, I underwent three angioplasties (March, June and October). In June, I got a stent and the October one removed scar tissue. I am borderline diabetic and go into hypoglycemia on a regular basis. I have an underactive thyroid. Last week, I left the hospital after my second CHF, the result of a bout with pneumonia, acute sinusitis and continual coughing for 3 months. My heart is not enlarged, and has sustained little, if any damage. Because of severe angina last week which was not relieved by nitro, my doctor did an angiogram. The news was good. Where I had a nearly 70% blockage two years ago, it is barely 20% blocked now. My heart is extremely weak and the doctor said it was nothing I did or didn't do, it is just a weak heart. It was too weak to pump the fluid off. I take Vasotec, Imdur, Zocor, Lasix, synthroid, glyburide, premarin, aspirin and atenolol. I finally have a prescription card through group insurance at work. When I am able to stay on the medications, I do pretty well. This is the first time in two years I've had any insurance. I had to quit work in 1997 and was denied Disability. Last fall, I found this really easy transcriptionist job so I went back to work. I discovered that it does bother my right arm somewhat when the angina happens. It's always the right arm, not the left.
Everyday I thank God for teaching us that we must be led by a conscience that is directed and dedicated by Him. I thank Him for His constant presence and affirmation. We do, indeed, discover the peace that comes from the knowledge that we are in the center of His will. Thank you Jon, for your testimony and for caring as you do. email@example.com
Mina, March 13, 1999 - Hi, I just found this wonderful board and not a moment too soon. Six years ago, I was finally diagnosed with CHF after being sick with it for 6 months, following a 2 month bout with a virus. My EF at diagnosis was 27. I also have Type 2 diabetes, asthma, hypertension and peripheral neuropathy from diabetes. I am now 59 years old. I had already been on ACE inhibitors for at least 10 or 15 years prior to the CHF for the high blood pressure. Over these 6 years of CHF, I've only had a couple of incidents where I was going into failure and it usually was because my body was chewing up the digoxin and I was nowhere near the proper levels. I also take Zestil, Lasix, potassium, Glucophage, Glyberide, Tegretol, Tarazosin, baby aspirin, Polaramine, Provera and Premerine, and Azmacort and Ventolin. I've never had a problem mixing Glucophage and any of the others.
Over the years, I have had 5 echos and an angiogram last summer. I have no problem with arteries but I have CHF, an enlarged heart and cardiomyopathy. My EF kept improving; 34, then 50 last spring. I was overjoyed. Then in Febraury, I had another echo and it said 20. I didn't believe it, asked to take another and a week later it was still 20. I'm a Kaiser member but went out of the system last week for a second opinion at UCLA. The cardio-doc there read all my reports and films and examined me and said in her report to me that she didn't see much differences in any of my echos and that she thinks my overall EF is 25 to 30, the whole 6 years. She also told me that people with my EF live an average of 5 years, so I'm already a year ahead. She said I should try for a transplant but she didn't think I'd qualify because of my other chronic deseases. She also called the paramedics and sent me off to the ER as I was in failure. My pulse was 120.
My resting pulse rate is now down to 98, 113 when standing. I am getting out of failure but it's hard not to be depressed about all this. This doc said that EFs don't change. Mine did. She says they were read wrong and too high. The EF's only go down. From what I read on this board, many of your EF's have gone up. Any thoughts? I'm going to get a 3rd opinion. MinaKay@aol.com
Jon's March 13 reply to Mina's March 13, 1999 - Hi Mina, Welcome to Jon's Place. I'll keep it short and leave the rest to others. A cardiologist who doesn't know that EF can go up as well as down, sometimes drastically, knows nothing about heart failure. There are real honest to goodness medical studies all over my site showing EF variability and increase. Please be sure that your third opinion is done by a CHF specialist. My own EF has gone from 13% to 45%. Echo accuracy is partly determined by operator accuracy but an experienced CHF specialist can get a good reading anyway. My own doc says he figures a +/- 8% accuracy by echo at his clinic (with him reading the results, not the tech <g>). Have any of your doctors mentioned a beta-blocker for your rapid heartbeat and its consequences? See the Coreg page. Jon.
Sarah F's March 13 reply to Joy R's March 12, 1999 - Hi, You sound like me. I get looks too and I am sure we aren't the only ones. The other day I got asked if I was handicapped by a woman. I try to ignore them but it's hard. I may not need it so much going in but after shopping, I am very glad to see my car so close. Keep ignoring them! Have fun driving again. firstname.lastname@example.org
Linda O's March 13 reply to Christine ?'s March 12, 1999 - Hi Christine, Welcome to Jon's Place. You will be so happy you found it. I too, have been unable to have any repair work. In 1993, I was 53 and smoked, ate a poor diet and got very little exercise, had a blood clot with no damage. My arteries were about 66% plugged. My cardiologist was going through a bitter divorce and now that I look back, maybe I should have been smarter and more aware of problems. Ten months later, I had a massive MI and now only 24% of my heart works. I worked for my PCP and there was a lot of stress. My birth Father, whom I have never met, also had heart problems. Boy, this is long and windy. I have been researching the chelation therapy and found a place in Kansas City, Mo, that does it. Can you travel back home 2 hours after the treatment and what difference can you tell? I have been in the medical profession most of my adult work life (office only) and have been just a little brain washed about the DO. Jon, you deserve some great news after what you and your family have been through the past while! Linda O. email@example.com
Kathleen, March 14, 1999 - Hi, I was diagnosed with idiopathic cardiomyopathy almost 10 years ago. It was either viral or an underactive thyroid. I have an ejection fraction of 30 and holding. I believe I am a total surprise to my doctor. I don't think he thought I would stay stable this long. I also have a medtronic pump implant in my abdomen which supplies a narcotic to my spine. I sure needed a place like this 9 years ago, but you know, God has made a way. I take Monopril and Lasix, Lanoxin, and Aldactone, Aldactone and Lasix for water retention. I believe they are going to put me on Coreg or a similar drug. I get so depressed sometimes. What my heart doesn't prevent me from doing, my back does. I have strong faith. I just feel like such a loner. Anyone out there gone this long like this? I would like to know, and also the support. God bless and thanks for listening! firstname.lastname@example.org
Ben B's March 14 reply to Mina's March 13, 1999 - Hi, When they did an angiogram they probably did a heart cath measurement of your EF. This is probably the most acccurate. EF seems to be a constantly changing thing, and at least you seem to be fairly stable so far. Even though that UCLA doctor is really dumb to say "I recommend a transplant, but of course you don't qualify," what she is saying otherwise doesn't really contradict anything. EF measurements of 25% to 30% (+/- 8%) could mean 17% to 38%, which is consistent with all of your readings except the 50%. Maybe this was a little bit of an overestimate. Too bad but it can go up again. Many, many people I see on this site have their EF go up, at least for a time. Remember, Coreg seems to be the main EF increasing medication, and you are not taking it.
Now, can somebody answer me, what does it mean exactly to "go into failure?" I thought we had symptoms of CHF almost all the time. Does going into failure just mean really severe symptoms requiring hospitalizations, or do some people live mainly asymptomatic lives and suddenly get bad symptoms? Sorry for rambling on.
Tom S' March 14 reply to Jeanette Walberger's March 11, 1999 - Hi, My diagnosis ran in the same directions as yours with the lovely title of Idiopathic Cardiomyopathy. During my 10 day internment at the local hospital, I had more tests and visits from the infectious diseases MD than from the cardiologists. Out of 8 doctors, 7 opted for a diagnosis of viral or tuberculean origins. One said it could have been as simple as the herpes or cold sore virus getting into my blood stream and attacking the heart, as well as abcesses to the teeth, of which I have had my share. By the way, idiopathic was interpreted "we're idiots for not knowing what caused it," by one of my cardiologists. In recent times, there is news of research which indicates that infections of the gums may lead to heart injury. Beyond that, you are pretty much on your own to to figure out the why and wherefores.
LeeAnn D, March 14, 1999 - Hi all, Sarah and Joy, I kind of got yelled at by a guy at my son's kindergarden and I told him that really I was the one that qualified for the space. He then went into how I probably didn't really need it and I went off on him! Poor Nathan stood there waiting, till I reamed the guy. I guess he quizzed the teacher or someone about me because the next time I saw him he was falling all over himself apologizing. I'd been looking to apologize to him too. I was a little grouchy that day anyway! He now goes out of his way to be super friendly. So, you never know, you may be harassed one day and friends with that person the next. A lot of times I let the bagging person put my bags in the car after grocery shopping and sometimes just can't resist the urge to explain that I'm not abusing the handicapped spot. Funny sometimes, isn't it? LeeAnn in Phoenix, DCM, age 38. email@example.com
Joy R, March 15, 1999 - Hi, I have found with the spaces for the handicapped when I get the eye, I show my IV bag which I carry aound all the time and that usually helps. Since I am now going to the store, I can put groceries in but am having trouble taking them out of the cart. I can't keep lifting my head up and down. I guess because of so much vasodilation. On other note, I did something stupid. I decided on my own to see how long I could go without dobutamine and lasted about 12 hours. I spent the last 2 days in bed unable to move and very short of breath. I almost had to go to the ER but made it. I started to feel a little better after I finally got up and started the IV again. Hard to believe that a drug makes such a difference. So this morning, I'm going to try to take a bath again and join the living, and hope I didn't set myself back too far. Best to all. Joy
Jon's March 15 reply to Joy R's March 15, 1999 - Hi Joy, I never took the stuff out of the cart at the grocery store! Let the clerks do it. I got dizzy from the bending over when I tried. After landing on the floor once, I never tried it again. When I first got sick, I asked a clerk to empty my cart on the conveyor at the grocery store check-out. She started doing it and asked me what was wrong with me. I told her I was just a lazy, shiftless bum and I didn't even work, I just relied on my wife to support me and I did as little as possible. She got a wide eyed expression and said no, that surely I had a hurt back or something. I laughed and started telling her about getting a bad heart at age 36. We've been friends ever since, and similar approaches - with a touch of humor - have gotten me quite popular with the store staff, from clerks and stock boys to managers. Now, when I walk in, they all say hi and stop to chat. It makes life easier when you remember to smile and have a bit of mischief in your soul.
About looks at the handicapped spots, try just staring back. Just pretend like you're Dirty Harry and think to yourself, "Do ya feel lucky, punk?!" That encourages the proper look to discourage comments. <G> Jon.
Mary Ann Miller, March 15, 1999 - Hi, I started reading everthing on your site when I found out that I had an enlarged heart and a EF of 45. I have skipped or too many heart beats. I am 52 and very overweight and a female. I was tired all the time, short of breath and had pains in my chest all the time. I felt like someone had beaten me up all the time. I am still 52, overweight and a female, but my health has changed a lot. I owe no small measure of this to all of you kind folks at this site.
My heart beats had an extra beat every second or third beat, and a long pause in between. 25% of my heart beats were irregular. The doctor that I go to found my skipped beats. My regular doctor had done an EKG on me and found nothing and said that my chest pains were arthritis. I do not have arthritis. I went to a heart doctor and went through all, and I mean all, the tests. She put me on medication. Some of the medication made me cough and she changed it. Some of the medicine was supposed to slow me down, but made my heart beat faster and mad me nervous but none of the medicine helped me. She sent me to another doctor and both doctors suggested another cath. This time, they found the part of my heart that caused the extra beats and burned it. The burn was only a very small piece about a quarter of an inch.
I was very scared. I didn't want anyone burning my heart, no way, but i had it done 2 weeks ago. My chest pains are almost now non-existent, no more shortness of breath, lots of energy, feel great and an EKG looked so smooth, it was just real pretty. The only complications were that the operation took longer (almost 6 hours rather than 4) because they had trouble finding the right spot and I had to stay overnight because they had to give me so much anesthetic that I was throwing up, and a vein in my right hand got phlebytis. That is getting better but my vein might stay hard at that spot. I just wanted you all to know that your replies and posts helped me a lot. You gave me courage and hope and somewhere to read about my conditions. I know that this condition may come back worse or just a little but right now I feel great. Thank you all and may you all have good health. Mary Ann. BriceM289@aol.com
Ginger's March 15 reply to Roger G's March 13, 1999 - Hiya Roger, Congrats on the EF, but what I really wanna know is why you say you listened to too much of the chatter here? What happened to make you say that? Just curious. Now, Jim M asked for chat times. Well, I tried e-mailing them to you, Jim and got my mail back. So I dunno, what's with your mail or mine? In any case, go to the site index at the top of this page and look for chat room and on that page is the time listed. It is 3 times a week. See Bill, I "obeyed!" <g> You all stay well. Hugs, Ginger. firstname.lastname@example.org
Jackie S, March 15, 1999 - Hi guys, I know it has been a very long time since I posted but I do keep up by silent reading. Jon, congrats on the increase in your EF. I just had an echo myself and was told my EF was up to the low 40s. Take heart, all you newbies. I started a year ago with an EF of 10 and have come a long way. My CHF doc is excited by all the new drugs on the horizon. There is much to be hopeful about. Take care all and God bless, espcially Jon without whom we never would have found each other. Oakleaf999@aol.com
Vincent W, March 15, 1999 - Hi Jon, I'm glad to hear that you have improved. I have been following your site for a couple of years. You have helped many people. A very big thanks. I am one of those who has diastolic dysfunction. My EF when I was in the hospital with CHF was 12. For almost 2 years, I have had an EF of 50-60%, yet I cannot walk much over 100 feet. This is before going on Coreg, which has helped my heart rhythm. The cardiologists I have seen are not interested in me, for the only thing wrong with my heart is thick walls caused by chronic high blood pressure. I was over 250/150 when I quite my job in October of 1996 and dropped to 190/125 within 2 weeks. That's probably why I had the congestive part of heart failure. It went down to normal for about 6 months and then back up to 180/120 where it sat for over a year and a half. I had a minor stroke the first of December, 1998. They could not find the source of the blood clot, which included a transesophageal echocardiogram which said my EF was 60. My veins and arteries are clear and in much better shape than most people at my age of 49.
While in the hospital with the stroke in December of 1998, instead of being put on insulin, I insisted that I be placed on glucophage, for I was producing too much insulin but my body was resistant to my own insulin. The doctor at the blood pressure clinic that I am going to is following my suggestion that I be treated for Syndrome X. As a result, my blood pressure is down to high normal, which is why I have no physical energy. My heart cannot relax enough to allow enough blood at a more normal blood pressure into my heart to meet my body's need. In time, if I can keep my blood pressure under control, my heart walls will thin a little and my heart will improve some. The Coreg and lotensin I take have not lowered my blood pressure but I can tell that they do help my heart a lot and are very worth taking. I also take synthroid, precose, glucophage, lipitor, plavix, and a diuretic. email@example.com
Jon's Note: See new article at Heartbytes.
Bill D's March 15 reply to Mina's March 13, 1999 - Hi Mina, You are the pharmaceutical house's fondest dream come true! <g> Either that or you have a cast iron stomach. Seriously, I think you should talk to a clinical consulting pharmacist. List all what's wrong with you and list all the drugs you take, the doses and when you take them. Pharmacists know drugs better than doctors do. That's why the government makes nursing homes have pharmacists check what their patients get every month. I am surprised your doctor told you about the old 5 year bit. The last time they counted heads was back in 1994. Then they found that half of the CHFers diagnosed between 1989 and 1994 had died. That was before most of the cardiologists were giving us huge doses of ACE Inhibitors and before the beta-blocker Coreg was approved by the FDA. I'm the guy who makes up statistics to fit the situation <g> and you'll like these. I think the average person with CHF probably lives at least 15 years! I agree with Jon that EFs can go up and stay up for years. Bill. firstname.lastname@example.org
Bill D's March 15 reply to Kathleen's March 14, 1999 - Hi Kathleen, Welcome to Jon's Place! You did find all the goodies he has hidden under Site Index at the top of this page, didn't you? <g> I've only had this stuff since 1993. At first, I was depressed about it but after a while, (just as I can't stay mad forever), I couldn't stay depressed either. Depression turned into boredom. I think CHF tests our patience more than it does our courage. I was bored right up 'til I found Jon and suggested he create the forums where we could cheer up, commiserate and compare what we were going through. I've been busy ever since. <g> Bill. email@example.com
Lee R's March 15 reply to Mina's March 13, 1999 - Hi Mina, I just wanted to echo Jon's sentiments regarding the EF. My cardiologist, too, has mentioned that it can go up and down (even a bit from eating and drinking). I noticed the Ventolin you are taking and wondered if that can cause increased heart rate. Some asthma drugs can. Check with your pharmacy. I sometimes ask for the package insert that they get with the drugs. Get that third opinion and read all you can at Jon's. Keep in touch, Lee. LeeRoush@aol.com
Lee R's March 15 reply to LeeAnn D's March 14, 1999 - Hey LeeAnn, How about a T-shirt and sticker, "My Bad Ticker Earned me this Sticker." (Jon's Note: These are no longer available since 2003) Bestest, Lee. LeeRoush@aol.com
Bill D's March 15 reply to Ben B's March 14, 1999 - Hi Ben, I assumed going into heart failure was when we started gasping for breath and had to get on oxygen or on a ventilator at your local ER. I wish I could have the asymptomatic kind but I'd probably never have been diagnosed! <g> Bill. firstname.lastname@example.org
Cindy M's March 15 reply to Jon's March 13, 1999 - Hi Jon, Congrats on the new EF! One question from this math-impaired gal. When you mention that your cardiologist has said that once given an EF number, the true number may be +/- 8%, what exactly does he mean? For example, if a person's EF is 45, is the variation between 37-52 EF or 8% of 45, which would be between 41.4 EF and 48.6 EF? Thanks for any light you can shed on this. Cindy M. email@example.com
Jon's March 15 reply to Cindy M's March 15, 1999 - Hi, He said that by echo, a person's EF can be established within a total 16% range of accuracy; +/-8%. So if your actual EF is 45, an echo could nail it down to somewhere between 37 and 53. Jon.
Candy's March 15 reply to Kathleen's March 14, 1999 - Hi Kathleen, Please keep the faith. I know exactly how hard it is to stay in good health. Although, I don't have any invasive medication for my back, I have to take several strong pain pills per day. When all the doctors empathize exercise for the heart, circulatory system and back, I find it difficult to keep any regimen up because of the pain. I can join your club. You have given me hope that I can endure into the future. I get depressed too. Do you take anything for the depression? I hope you are feeling better today. God bless you. GrPota@aol.com
Joe E's March 15 reply to Jon's March 12, 1999 - Hi Jon, It's great to hear about your EF increase to 45% and the info from your doctor that you can get back into resistance training. I was the one with DCM who asked about resistance training around 2/28/99. My EF is also 45% and I am continuing with the resistance training. I've found that I feel much better when I lift weights three time per week for an hour or so at a time than when I do aerobic or Tae Kwon Do training. The aerobic work usually leaves me very tired the next day. However, my stress tests (Bruce protocol) show good aerobic capacity even without doing aerobic work and the doctor guesses the weight training has some cardiovascular benefits. I would be interested in your doctor's rationale behind his resistance training recommendation and what your training routine will be. Krait008@aol.com
Jon's March 15 reply to Joe E's March 15, 1999 - Hi, I hesitate to answer this because few people who read it will have a thorough understanding of weight training. I was taught by a competitive bodybuilder who was the only other guy crazy enough to hit the gym before it opened 5 days a week - I discovered he had the keys. My goal is muscle toning, not muscle building. I do no strength training, no isometrics. I do one weight exercise for each of 2 muscle groups twice a week and one exercise for each of 2 other muscle groups twice a week. I walk on the treadmill the other 3 days a week. I do many things the exact opposite of proper weight training for a healthy person; I wait until my heart rate is completely back to normal between each set and I do not work complementary muscles the same day. I do high reps, low weight. I do not strictly regulate my breathing cycle. I do not hold peak contractions. I do one non-weight exercise each day that I do resistance training. That is for the more complex upper body muscles - the lower back and stomach. One is a Navy Seal exercise and is done with the body as it's own resistance. Needless to say, my schedule and timing is a bit different than the Seals. <g> The other is done with an isometric exerciser but I am not using isometrically. I do no leg exercises. I do not work my lats. I do no exercises that require bending over.
Dr. Porter's reasoning is pretty simple - he wants to see if my Vo2max will improve by decreasing fat weight, toning muscle and improving the components which affect the body's utilization of both oxygen and energy. Resistance training is known to do this. It doesn't do anything for your actual heart, though. He was quite clear - dumbells only - no barbells, pulleys, machines, etc. That works for me, since I gave away a small fortune worth of weights, barbells, collars, racks and benches but I kept a set of dumbells and some smaller plates, just in case. Weight training has long been known to have some cardiovascular benefits but I find that walking leaves me far, far less tired than weights. Perhaps you are over-doing it on one or both types of exercise. Dr. Porter wants the walking first and foremost. I tried weight training once before post-CHF and after 4 weeks, it was demolishing my immune system and my energy level, and I quit. Honestly, I'm not so sure it's a good idea but I'll know more in a few months. I am attempting to correct things I may have done wrong (by doing them right) the first time. Jon.
Della's March 15 reply to Kathleen's March 14, 1999 - Hi, I'm praying for you. Please don't feel like a loner. My doctor told me my condition (I've been out of denial 4 years now) could be viral or genetic. I have an underactive thyroid as well. In 1997, I had my second angioplasty for the year; just five weeks before my 21 year old son, the youngest of my 5 children, died suddenly from an injury sustained in a car accident. He was a college student still living at home. The pain was so intense that I honestly could not distinguish if it was my poor weakened heart or the grief. When my cardiologist questioned me, I couldn't even answer. I just didn't know. About a month after Michael died, we learned his father's cancer had returned and radiation treatment on his spine began several weeks before my third angioplasty. Shortly after, our Pastor's dear wife wrote to encourage us with Isaiah 43:2 which tells us when we go through difficult times, God promises to be with us. Even though I still can't differentiate between the pain of CHF and the loss of my son (it feels like an elephant doing a one-legged stand on my chest), I take comfort in knowing that sometimes God calms the storm and sometimes He calms us in the midst of a storm. He is a shield to all who trust in Him. Keep the faith! Actually, if the pain radiates down my arm in a strangle, I'm pretty sure it's failure. Of course, stress is an awesome assailant and grief = stress = failure. Faith prevails. Forget about yourself and concentrate on Him. It's completely uplifting!
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.