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Tom S 5-16 Disability review
Jon 5-16 theoretical Disability review scenario
Pat D's 5-16 reply to Tracy M's 5-15 weight loss methods
Rick M 5-16 weight loss
Phyllis A's 5-16 reply to Melissa's 5-14 personal experience, hang in there
Sara's 5-16 reply to Libby's 5-15 getting the right doc & more
Bill D's 5-16 reply to Roger ?'s 5-15 aneurysms, CHF info & more
Bill D's 5-16 reply to Libby's 5-15 CHF info, the right doc & more
Linda L 5-16 intro, work, SSD, insurance questions
Ginger's 5-16 reply to Ann's 5-15 supplements
John Len's 5-16 reply to Gatha E's 5-14 SSD differences
John Len 5-16 fluid retention questions
Tom S' 5-16 reply to Jon's 5-16 SSD reviews
Jon's 5-16 reply to Tom S' 5-16 SSD reviews
Maggie S' 5-16 reply to Robin W's 5-15 good wishes
Hope M's 5-16 reply to Jon's 5-16 SSD reviews
Chuck 5-16 supplement questions
Jon's 5-16 reply to Chuck's 5-16 potassium & magnesium
Amy G's 5-16 reply to Melissa's 5-14 CHF at a young age
Amy G 5-16 questions about CHF & the elderly
Tom S 5-18 update on my SSD post
Tom S' 5-18 reply to Linda L's 5-16 SSD payments & Medicare
Jon's 5-18 reply to Linda L's 5-16 initial SSD payment
Robin W's 5-18 reply to Jon's 5-16 SSD review
Jon's 5-18 reply to Robin W's 5-18 SSD review & information
Sara 5-18 questions about going off meds
Jon's 5-18 reply to Sara's 5-18 going off meds
Ginger's 5-18 reply to Amy G's 5-16 e-mail me & valve replacement questions
Lisa H 5-18 SSD review experience
Phyllis A's 5-18 reply to Robin W's 5-15 best wishes, chemo induced CHF
Luc D 5-18 update, questions about cardiomyopathy "cures"
Melissa 5-18 update, thanks
Tom S 5-19 SSD
Al M 5-19 SSD
Cecil 5-19 intro, coping with CHF
Della R's 5-19 reply to Linda L's 5-16 working, insurance, Medicare & more
Gwen S 5-19 update, friends, coping & more
Arlene B 5-19 seek doc in Ohio area & more
Bob Cromwell 5-19 CHF after bypass questions & more
Melissa 5-19 corrected icq number
Doris R's 5-19 reply to Chuck's 5-16 Coreg & CoQ10
Ginger 5-19 EFs, getting better, meds, update & more
Will W 5-20 info about my heart donor
Jana B 5-20 Swan-Ganz questions
Jon's 5-20 reply to Jana B's 5-20 Swan-Ganz cath & procedure
Kim S' 5-20 reply to Sara's 5-13 ER docs misdiagnosing CHF repeatedly
Jon's 5-20 reply to Kim S' 5-20 ER docs, reading your medical record & more
Jon 5-20 EF comments
Ginger's 5-20 reply to Melissa's 5-19 icq numbers page
Patricia G 5-21 hereditary DCM questions, update
Pat L 5-21 stress echo questions
Bev T 5-21 SSD in Florida questions
Kim S' 5-21 reply to Jana B's 5-20 Swan-Ganz right-heart cath
Brenda H 5-21 fire station diagnosis & more
Pati F 5-21 sarcoidosis questions
Pat D's 5-21 reply to Kim S' 5-20 ER doctors, incorrect treatment experience
Jon 5-21 ER necessities
Betty 5-21 DCM/CHF questions, pregnancy question
Candy's 5-21 reply to Hope M's 5-16 SSD & substance abusers
Bobby F 5-21 globulin treatment for CHF info
Jan P 5-21 phen-fen lawsuit deadline
Al M 5-22 med journal Urls & to Kim S
Sara's 5-22 reply to Pat L's 5-21 stress echo description
Gina 5-22 intro, seek East coast lawyer, depressed & more
Virginia P's 5-22 reply to Jon's 5-21 ambulance rides, carrying medical info
Jon's 5-22 reply to Virginia P's 5-22 ambulance rides, carrying medical info
Joyce 5-22 anyone have CHF & diabetes?
Ginger's 5-22 reply to Betty's 5-21 update on Walt, CHF info, chat
Bobby F 5-22 butterflies & struggles
Cindy M 5-22 update, Coreg & weight, Vo2max & more
Sherrell 5-22 update, heat vs energy, Celebrex & more
Hope M 5-23 broke my ankle, back soon
Cecil C's 5-23 reply to Jana B's 5-20 right heart cath,Swan-Ganz
Cathy H 5-23 ambulance rides, hospital choice
Jon's 5-23 reply to Cathy H's 5-23 ambulance rides, hospital choice
Doris 5-23 intro, Drexler's Syndrome, prednisone question & more
Joy R's 5-23 reply to Gina's 5-22 listen to your body, make sure doc does too
Linda O's 5-23 reply to Bobby F's 5-22 really liked the butterfly story
Jill S 5-24 California's rules for hospital choice
Jon's 5-24 reply to Jill S' 5-24 hospital choice, dropsy, bios, posts
Ann C 5-24 update, EF went down, scared & more
Ben B 5-24 has anyone been examined by an SSD doctor?
Bill D's 5-24 reply to Doris' 5-23 welcome, prednisone, meds questions & more
Jan P's 5-24 reply to Cecil C's 5-23 Batista procedure questions
Jon 5-24 ambulance destinations, Y2K opinions
John Len's 5-24 reply to Ben B's 5-4 SSD trips
John Len's 5-24 reply to Joyce's 5-22 CHF and diabetes
Sara's 5-24 reply to Jon's 5-24 ambulance destinations
Renee M's 5-24 reply to Jon's 5-20 EF, definitions, understanding & more
Linda O's 5-24 reply to Ann C's 5-24 new doctors
Jana B 5-24 hospital ERs, MedicAlert question
Felix O 5-25 SSD review Url
Kay's 5-25 reply to Bill D's 5-23 maybe Dressler's Syndrome?
Tom S 5-25 impotence & SSD review form
John Len 5-25 ambulance transport
Paul M's 5-25 reply to Bill D's 5-24 prednisone & diabetics
Ruthie A 5-25 life with CHF - a lesson & more
Ginger's 5-25 reply to Joyce's 5-22 finding others, update, chat & more
Betty 5-25 thanks, EF question & more
Chase G 5-25 valve repair, episodes question & more
Bill D's 5-26 reply to Kay's 5-25 Dressler's Syndrome, Doris, Url
Lee R's 5-26 reply to Chase G's 5-25 ICDs firing
Cecil C's 5-26 reply to Jan P's 5-24 personal Batista Procedure experience
Tom S' 5-26 reply to Felix O's 5-25 SSD site, definition of disability
Jon's 5-26 reply to Tom S' 5-26 SSD expectations
Carolyn's 5-26 reply to Betty's 5-25 EF vs fractional shortening
Ginger 5-26 Tom W, Joy R, Freddie B - people updates, questions
Jon 5-28 update
Phyllis A's 5-30 reply to Ruthie A's 5-25 ER trips, diuretics & more
Rick M 50-30 update on this 74 year old CHFer
Pat D 5-30 update, meds, pulmonary hypertension, questions & more
Felix O's 5-30 reply to Tom S' 5-26 Disability & part time work question
Felix O 5-30 sudden CHF recurrence after long good spell - question
Charlene 5-30 just got CHF & am diabetic - questions
Jana B 5-30 a friend's daughter died
Bobby F 5-30 uplifting article
Cecil C's 5-30 reply to Jon's 5-25 surgeon, Batista procedure & patient selection
Helen O 5-30 update, must lose weight, am very down
Robin W 5-30 update, questions for hospital stay veterans & more
Gina 5-30 doctor/clinic questions
Marc S 5-30 intro, glad to be here
Christine's 5-30 reply to Joyce's 5-22 diabetes & CHF, herbs & more
LeeAnn D 5-30 update
Ed 5-30 Disability question
Don G 5-30 low sodium diet is important, cookbook update
John Len 5-30 sleep anea Url, Felix O
John Len 5-30 swelling, Charlene
Tom S, May 16, 1999 - Hi, A little over a month ago, I received notice that my Social Security Disability was being reviewed after having received SSD payments for 2 1/2 years. Frankly, I was extremely concerned because of the many posts I had read on this forum relating horror stories about being turned down for SSD. At the time I was approved for it, my docs were gung-ho to put me on a heart transplant list. I resisted strenously for various reasons, and insisted on a medical treatment. I won't say I feel that great but I am doing fairly well and indeed, felt some improvement over the way I felt at the time I qualified for SSD. Back in January I had an echocardiogram, which showed my EF had popped up to 40% and the doctor was even advocating I could go back to work part-time. My question to him was (A) who was going to hire a 52 year old terminally ill CHF patient and (B) how would I qualify for any health insurance anywhere with that condition? I haven't got a clue what my docs reported to the folks doing the revaluation at SSD but I was happy to lean today that my "Disability is continuing."
When I opened the envelope from SSD, I fully expected to learn I was being cut off. That represents a big chunk of change in our household and would definitely mean a loss of our home and a pretty serious situation for my 6 childen and one grand child who live under our roof. On a lighter note, I announced the news to my wife by saying, "Well I guess I am still dying, Social Security said I can continue on Disability." She replied, "Cool!" So I guess folks at the Social Security Administration aren't as "heartless" as we sometimes think. Spouses on the other hand, may need some sensitivity training. biggerbhoy@hotmail.com
Jon, May 16, 1999 - Hi everyone, I'm following Tom's post so the topic of SSD review can run on, so to speak. I am in the middle of a discussion with my own CHF doc about what I foresee as an upcoming problem for some CHFers on Disability. I am, of course, using me as an example - definite self-interest here. <g> My EF goes way up on Coreg but not my functional capacity, Disability reviews me, sees a near-normal EF and drops me, saying I can work. I then go to work but can no longer afford Coreg or my other cardiac drugs. As a result, I go into failure again and my EF drops but then I have to slog my way back onto Disability, a process that may see me dead first.
Now, this in no way applies to us all. Many did get a rise in functional capacity when their EF went up. Others will not lose their current meds insurance coverage if they go back to work. Still others have skills which allow them to sustain themselves in part-time work with which they can cope. That may still leave a substantial number of us who fit a very unsettling scenario, especially those whose skills require physical strength and endurance to put to use. Doc Porter had some interesting things to say. If anyone's interested in a further discussion, e-mail me. If I get enough responses, I'll ask him if I can make public some of his ideas.
I don't think SS employees are heartless. I do think most of them do their jobs in the way they are instructed by administrators who do not view us as real people with life changing problems, but as case numbers and statistics. Policy at the top is set to preserve the bureaucracy first, which means automatically turning almost everyone down. This instills a "turn-down philosophy" in the bureacracy as a whole, which has an adverse effect on the truly disabled seeking help. This is all to be expected when personal initiative is frowned upon and precisely following a set of rules is mandated. As we all know, only morally motivated personal judgement added to common sense makes an aid society of any type effective in individual cases. These qualities are discouraged in the present setting. Even those people who do have such an ethic have it squelched over time, leaving us at the mercy of rules which are often out of date, not uniform across locales, and often improperly applied. The impersonal nature of the "SSD doctor who may never examine you determining your fate" method and other in-place tactics make the whole process inconsistent, often inaccurate, and therefore frightening. This is furthered by our inability to find or contact anyone within the system who seems able to get things done, rather than just passing it on or reviewing it further and so on, and so on.
I don't know anything about SSD review since only 2 have been discussed here that I can remember. The initial application process is much discussed but how that relates to the review process is unknown to me since I have received little information from people who have actually been through it. To those who have been through it, I encourage you to send in your experience to benefit those who face it down the road. I would love to add a page about the review process but have pretty much decided I cannot until I have been through it myself. Jon. speaknoevil@geocities.com
Pat D's May 16 reply toTracy M's May 15, 1999 - Hi, Tracy, I can relate totally to your out-of-control eating. I've been fighting a weight problem ever since I quit smoking 18 years ago. I've yo-yo'd repeatedly but over the past year, I've gradually lost about 40 pounds and still need to lose another 20. It appears that I'm going to be successful this time, since when I plateau or just plain stop working on it, I'm able to maintain my weight loss (that's a first). If you'd like to discuss my techniques, please e-mail me at and I'll be happy to share with you. Pat. patj98@yahoo.com
Rick M, May 16, 1999 - Hi, Back when I could stand up straight, I was 6' 3" tall and weighed about 230lbs. Now, after several years of CHF and 74 years of living. I am 6' tall and weigh 207lbs. There is no fat on me and by weighing myself every morning in the "Naked and Starving" mode, I know that any gain of weight is because of retained fluid. I take my first Lasix at 6:00 AM so if I weigh myself at 8:30 AM, I will weigh more than if I weigh myself at 10:30 AM. The strict sodium restrictive diet that works for me to keep my fluid down, helps me keep my weight down, too. The secret is in keeping the wrong foods out of the house. If you don't have any chips in the house, you won't be tempted to eat them. If your family won't cooperate, make a fuss. You wouldn't let them smoke in the house if you had serious lung problems so make them eat their chips out in the garage where you won't see them or even know there are any around. Some of you sweet ladies probably won't want to take that strong a stand but getting your weight down can improve your quality of life and maybe extend it, too. So what if nobody loves you? It's also fun to have to buy new clothes in a smaller size. Trust me, it's worth it to drop those pounds. rearadml@iu.net
Phyllis A's May 16 reply to Melissa's May 14, 1999 - Hi Melissa, I also have CHF. I found out in 1997. I had breast cancer in 1994 and with God's help and love, it is in remission so you see, there is always hope. I went back to work in 1995 and after being back a short time, I could hardly walk anymore. I loved to walk and had tests done and they discovered I had asthma. So when my husband rushed me to an ER, we thought it was asthma. My faith in God got stronger and I am making it through this also. Hang in there. I also gained a lot of weight and went from size 13 to size 18 but after surviving breast cancer, I still believe I'm blessed. I'll pray for you and for us all. phylcasurv@msn.com
Sara's May 16 reply to Libby's May 15, 1999 - Hi Libby, Please run and find a cardiologist who will not only tell you want is wrong but one who will explain to you what is happening to your body, what medicines you need to take, and who will make you feel comfortable with any and all of your feelings and complaints. You are the boss and the doctor is the employee. You are paying him to take care of you and if you are not satisfied, fire him and hire another. Good luck. Sara. sunny20853@aol.com
Bill D's May 16 reply to Roger ?'s May 15, 1999 - Hi Roger, I recently read that they could treat aneurysms of the heart 2 ways. The first way was like open heart surgery. The second way was going up your femoral artery with a cath and installing a stent. That's a little wire cage that's like a Chinese finger puzzle. This cage, that can increase in diameter, has hooks on the outside that hook onto the artery walls. That provides reinforcement so the artery can't blow out. Having had caths and open heart surgery myself, I'd opt for the cath. You might use one of Jon's links to ask the doctors at the Cleveland Clinic about this procedure. I could have gotten it wrong.
Welcome to Jon's Place! In addition to the forums, 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 how we try to cope with CHF. Bill Drummond. billdog@ gate.net
Bill D's May 16 reply to Libby's May 15, 1999 - Hi Libby, If you look pregnant, you are holding water. You didn't say what medications you are taking. All of us take a diuretic to get the water out. If we don't, we swell up like you are and have severe shortness of breath. We all are on low sodium diets and restrict our fluid intake to about 2 quarts a day. Low sodium means our food tastes awful and we had to get used to it. We have to read how much sodium is in every can or box. If I were you, I would change my cardiologist. By not telling you how serious your illness is, he could have killed you! You should probably go to an Emergency Room. You might find a cardiologist there who's more understanding. Welcome to Jon's Place! If you're only reading the messages, you're missing the best part of Jon's Place. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on "Site Index" at the top of this page. Start by reading "The Manual." Bill. billdog@gate.net
Linda L, May 16, 1999 - Hi, This is my first post. I am 52 years old and just found out that I have CHF. I also have rheumatoid arthritis. My CHF is supposedly caused by a virus. I take steroids and plaquenil. The steroids suppress the immune system and I have come to learn that plaquenil can weaken the heart muscle if the immune system is suppressed. Needless to say, I no longer take plaquenil. Has anyone else heard of this? I also have hypothyroidism. I was wondering what you do for insurance if you go on SSD. Do you have to be on it so long before you can qualify for Medicare? How do you take care of all your serious health problems? I have worked for the same company for 19 years and if I can hold out until I am 55, I can then keep my insurance for $25 a month. That has been my goal but I find it harder and harder to work a 40 hour work week. I am thankful to find The Beat Goes On. If anyone can answer any of my questions, I would be grateful. I really don't know what to expect from CHF, as I am just learning. God bless all of you. Linda. Linda_Gibbens@yahoo.com
Ginger's May 16 reply to Ann's May 15, 1999 - Hiya Ann, I take almost the exact same supplements you do, with the exception of L-arginine. I take L-carnitine. Maybe they are the same thing, I don't know. I hope that is some help. Cya's all at chat soon. Hugs, Ginger. mystery@laker.net
John Len's May 16 reply to Gatha E's May 14, 1999 - Hi Gatha E, That goes to show us the different attitudes of different offices and personnel in the Social Security system. I was accepted so fast I actually had to shut down my business very fast, but you had to go to court and then got it fairly easy, yet others are still trying in frustration to get it. John. a_lenny6@hotmail.com
John Len, May 16, 1999 - Hi, Where can I go for information on fluid retension? Lately my right leg and sometimes my right foot, has been swelling. The doc says it's because of the vein they took out for a bypass operation. There is an individual extra swelling around the scar near my ankle where the vein was taken. He finally gave me fluid pills. The cardiologist says the same thing. The vein has been gone for 10 years and the swelling is a recent problem. John. a_lenny6@hotmail.com
Tom S' May 16 reply to Jon's May 16, 1999 - Hi, To follow the follow up, I was talking to a woman (an RN) today who's father has been on SSD (Social Security Disability) for over 15 years. She said he came up for review 12 years ago, filled out some papers, talked to someone from Social Security on the telephone and was approved to continue on SSD. She told me he hasn't heard a word from SSD since then, so it makes one wonder just what rules they are working under? A curious note about SSD is that ever since I got on board the first time, I get a mailing about every 6 months requiring me to tell them if my oldest son is married yet. I started getting this when he was 14 years old and he is now a more marriageable age of 17. biggerbhoy@hotmail.com
Jon's May 16 reply to Tom S' May 16, 1999 - Hi Tom, Take that letter seriously. They cut off my daughter's benefits earlier this year because they said we didn't return the most recent letter of the same sort. We never received it. It's straightened out now but caused some sweat around here. SSD cases are supposed to be reviewed at least every 7 years, more often if improvement is expected. However, I suspect that the unwritten guidelines actually in place vary from state to state and from analyst to analyst. SS is famous for its inconsistency, internally and externally. I sure would like to get more first hand info about reviews since judging by my e-mail, this is a topic of great interest. Jon.
Maggie S' May 16 reply to Robin W's May 15, 1999 - Hi Robin, I just wanted to wish you the best of luck with your heart transplant. I admire your courage and my thoughts and prayers are with you. Maggie S. marjac@pro-ns.net
Hope M's May 16 reply to Jon's May 16, 1999 - Hi, About Social Security, a few years ago my husband and I were asked to assist a local woman in a presentation she was giving. It turns out she has been a Social Security employee for 22 years. She told us how things have changed dramatically over the years. She said now that when people come in who are disabled from substance abuse, they almost immediately are approved for Disability. However, people who come in with heart problems, cancer, etc, are rarely approved if their doctor gives any hope for their survival. In other words, if you were told you were terminal, you might be able to get Disability benefits. She said the nature of the office itself has changed a lot, too. It used to be that people would sit down at a desk with you and discuss their forms, ask questions, etc. Now it is done through a window and the employees are told not to keep anything on their desk that might be used as a weapon, such as a stapler, pen or letter opener. I found the information she related as an experienced employee to be very unnerving. Hope. mcneil@ibm.net
Chuck, May 16, 1999 - Hi, Is anyone taking Potassium and Magnesium in large amounts? Do they affect Coreg or any other drugs? How about CoQ10? Does it affect Coreg or, more important, does it do anything to help? A lot of alternative medicine books say that the heart can be strengthened with these supplements and most doctors don't believe in them. Does anyone have any experience with them and any reactions, good or bad? cwsigerson@aol.com
Jon's May 16 reply to Chuck's May 16, 1999 - Hi Chuck, Taking large amounts of potassium that is not needed to correct an insufficiency may be dangerous. Too much potassium could trigger arrhythmias. Potassium supplements to offset diuretic use are slow release, by prescription only. Magnesium in large amounts will give you diarrhea. <g> Jon.
Amy G's May 16 reply to Melissa's May 14, 1999 - Hi Melissa, I can imagine how you feel right now. I was 22 years old when I was diagnosed with cardiomyopathy. The one thing you have to remember is to listen to your doctors! You may not want to, I know. I had a hard time dealing with this when I was diagnosed. If you need to talk to someone close to your age, feel free to e-mail me anytime, even if you just want to vent. Amy. NPGBear@aol.com
Amy G, May 16, 1999 - Hi, I have had cardiomyopathy for almost 6 years now. Last week my husband and I found out that his grandfather may have congestive heart failure. My husband is very upset by this and I have tried to reassure him. I don't know too much about CHF and the elderly. Could anyone who has any information on how CHF affects the elderly please e-mail me. I appreciate it! Sincerely, Amy. NPGBear@aol.com
Tom S, May 18, 1999 - Hi, In my haste to post, I failed to mention that the gentleman I referred to as having been on SSD for 15 years with one succesful review is a CHF patient. By the way, I did my initial application for SSD via fax, phone and snail mail. I never stepped foot in the Social Security office in my city, less than 3 blocks from my home, until I signed the final documents to start receiving benefits. biggerbhoy@hotmail.com
Tom S' May 18 reply to Linda L's May 16, 1999 - Hi, After you qualify for SSD (Social Security Disability) it takes 6 months before you receive the first check. It is not retroactive or cumulative as some people may have told you. After you have been on SSD for 2 years, you will receive a Medicare card and be asked if you want to enroll in Medicate Part B. This is the medical insurance for doctors, etc. The benefits are pretty shabby and many doctors will not accept Medicare assignment so if you can keep your current insurance, it is probably much better than anything Medicare can offer. biggerbhoy@hotmail.com
Jon's May 18 reply to Linda L's May 16, 1999 - Hi Linda, This is just to be sure you understand. If you applied for SSD and it took you 13 months to get officially approved, you would receive 7 months of back payments at once. SS withholds the first 6 months of payments, supposedly so that if you improve and can go back to work, they will pay you this 6 months worth while you find a job and rejoin the working public. Anything beyond that first 6 months accumulates and is paid as a lump sum upon your approval. Of course, if you get approved right away, you would have to wait for that 6 months to pass before you started getting any money. Jon.
Robin W's May 18 reply to Jon's May 16, 1999 - Hi Jon, I would also appreciate it if people would post their experiences with SSD reviews. As I've said before, I had no problem whatsoever getting SSD. I feel really bad for all those who have been denied. It seems so unfair that we all suffer from the same condition but in the eyes of SS, that's not good enough. I am due for review soon, I think. I was approved for 3 years. Does this mean that a review takes place 3 years from the date I became disabled or 3 years from the date I began receiving benefits? Thanks for all the thoughts, messages, and prayers. I really appreciate them all. Robin W, age 31. jwilson@nb.com
Jon's May 18 reply to Robin W's May 18, 1999 - Hi Robin, I didn't even know a person could be approved for Disability for a set period of time. <g> My approval letter just said I qualified and payments would begin, blah, blah, blah. Review is "officially" as follows:
I have received a lot of letters on my post and I will write Doc Porter tonight and ask if I can post his comments. For those interested, there is official SSD information here. Jon.
Sara, May 18, 1999 - Hi everyone, I am having problems understanding number games for EF. I have had cardiomyopathy since February of 1999. I had problems breathing and had extreme fatigue. A stress echo showed I had CHF/DCM with arrhythmia, with an EF of 25%. I was given Lasix, Lanoxin, amiodarone, Zestril, aspirin and Zocor. A heart cath was done last week and now my EF is 50 with no signs of CHF/DCM. I am so happy! I do feel better but still feel washed out and limited on my outings. My problem is my CHF doctor took me off all meds except the 200mg amiodarone daily and a baby aspirin daily. I am concerned that I will go back into heart failure again. Can this happen and has anyone had this experience? I wish the best to all of you. I don't feel I have a problem after reading the posts from those who are worse than I but I am concerned with not feeling that great, and if I will get worse again by being off meds. Thanks for any info. Sara. sunny20853@aol.com
Jon's May 18 reply to Sara's May 18, 1999 - Hi Sara, I have no personal experience with this. Doctors have told me that a CHFer who regains normal heart function should be kept on an ACE inhibitor, regardless. Heart failure can recur but is not certain to. Jon.
Ginger's May 18 reply to Amy G's May 16, 1999 - Hi Amy, My stepfather is 73 and has CHF. If I can help answer any questions for you, I would be glad to. E-mail me if you want. I want to thank everyone here for your support and prayers for my stepfather. He made it through surgery and now we are doing the 48 hour wait to see how he is going to respond. They replaced his mitral valve with a tissue valve. I was so tired I didn't think fast enough to ask about it. If anyone knows anything about a tissue valve, could you please fill me in? Thanks again. Hugs, Ginger. mystery@laker.net
Lisa H, May 18, 1999 - Hi everyone. I have been through an SSD review. Although my numbers had not risen much at that time, my doc asked me if I thought I could handle working again. Sometimes I feel like maybe I could and sometimes, no way. After explaining that if I lost Medicare, I would also lose my other insurance and not be able to get my medications anymore (who will give people like us coverage?) and would just spiral back into extremely bad shape, the doc fired off a letter to SS and within 2 weeks I received word that my benefits would continue. Seeing how we are dependent on this money, we really were thankful. If I ever get reviewed again, I figure with the pacemaker and diabetes on top of the CHF, I will be on this for the rest of my life. If that what is takes to be around longer for my kids, well, that's how it's gonna be. If anyone has any questions I might answer about reviews, drop me a line. Lisa. wthall53@aol.com
Phyllis A's May 18 reply to Robin W's May 15, 1999 - Hi, God's blessings go with you for your transplant and I wish you the very best. Thanks for the e-mail about chemo and CHF. I don't remember the doctors telling me about adriamycin. I was out of it but I knew it was from treatments because it happened right after that. My doctor won't admit to it. It is nice to have someone to chat with about CHF and chemo. Again my prayers go out to you. E-mail me back and give me the date so I can be praying for you at that time. phylcasurv@msn.com
Luc D, May 18, 1999 - Dear friends, It's Luc here again from Belgium. I had to go for 2 MUGA scans, one at rest and under stress. I don't know the results yet. It's been a week now and they haven't typed my results down. Too much work, they say. Normally I had to see my cardiologist on May 17 but the nurse called me to say that I don't have to see my cardiologist then. S1he said my cardiologist cannot do anything for you because he does not have the MUGA results, so I have to go back on May 31. I read that some people are cured from cardiomyopathy. How can that be? Can anyone give my some advice on this? I am stable right now, they say, but the disease is not gone at all. I hope that you all may feel better. Greetings from Luc and I hope all the best for you all. luc.Deseins@ping.be
Melissa, May 18, 1999 - Hi, I thank each and everyone of you who has sent me e-mail or who has posted a reply. You have all shown me such kindness and understanding and it brings tears to my eyes. I am having an echo done on Thursday but I won't know the results until my next doctor visit. I will post when I have any new news. Thank you for sharing your stories with me. It made me realize that I am not alone in this fight. 24731839 is my icq number for those of you who were wondering. I go by the nickname of moe! - thats short for Melissa! <g> Thank you all once again for your prayers and understanding. I will let you know what happens Thursday. moelissa@hotmail.com
Tom S, May 19, 1999 - Hi, As Paul Harvey would say, Now for the rest of the story. Jon is absolutely right about the cumulative payment if it takes more than 6 months for your first payment. As far as the review, it was exactly 3 years since I was approved for SSD that the review letter appeared in my mail. At the time I applied for SSD I did not have copies of 3 years of tax returns for the SSD folks to determine payment. The 3 years actually were my best income years and I suspect they made a pretty heavy impact on the final amount I should have been receiving. The extra $$$ amounted to over $500 and after I supplied SSD with the tax returns, it took about 6 months for them to process the new amount but I did get a nice fat check for over $5,000 representing the extra amount I should have been paid. biggerbhoy@hotmail.com
Al M, May 19, 1999 - Hi, It seems pretty clear from reading the posts that SSD follows no logical course. I applied for Disability in March, 1997. I went to the local office and sat down with a very nice woman who asked questions and filled out a form on my behalf. She had told me to bring my medical records, so I handed her the whole deal, about 3" of stuff. She went away and made copies of them and returned my copies to me. She put all of this material in a large envelope, pre-addressed to the central state office and then sent an e-mail to the person she was sending this stuff to, alerting her that it was coming. I was impressed. About 3 monhs later, I got a letter from SS telling me in part "that if I didn't submit my medical records within 10 days of this letter, they would throw everything away." I called. The woman was out sick. I left a message but I also called again the next day and spoke with her. No problem, she said. Then I got another letter, exactly like the first. I called again. Again, she was out sick.
Two days later she asked me, "Well, the records we have are only up until March of this year." I said, "Well, that makes sense since that is when I sent them. You will have to write to get the records from after I sent them in March until today. How can I send you information in March that has not yet happened?" Apparently this registered. In September, I got a third letter, exactly like the first two. I called. She was sick again but this time, her supervisor answered. He apparently was trying to wade through some of her stuff. I explained everything and he said no problem, they had the new medical stuff and he sent it on to the doctor for review. I did make a comment, "Uh, Ms. what'shername is sick a lot. Has she filed for Disability?" He laughed and said, not yet but he expected it. I called the following week. My representative, Ms. what'shername, had recovered enough to tell me that the doctor was "considering it."
Later that same day, I later received a letter saying that I had been approved and that my date of Disability was 8/96 so my 6 months were up and I got a check that represented February of 1997 to October, in November. It was a big check. The next point of contention with me was when I would get Medicare. The regulations say "24 months from Disability." To me that meant 24 months from August of 1996, when they "fixed" the date of my Disability. This was not so. They meant 24 months from the date when I would receive my first check , which was February of 1997. We discussed this point but logic doesn't win. Even the local nice lady agreed with me that it made no sense but as they are fond of saying, "It's out of my hands." (I hate that expression).
There are tons of things about SS that don't make sense, including how much you can earn on a part-time basis. I can earn up to $500 per month. If I earn $1 more, then I lose the whole month's Disability amount. If I win $10 million in the lottery, I lose my SSD the month I get my lottery money, then it starts again the next month. That is stupid. If I win the lottery, I should not get SSD but the money lost on working ought to be a dollar for dollar loss over the $500, not the whole thing. The only way this will change is if you write your congressman and point out the error of their ways. Good health, and win the lottery. Al M. ajmiii@web-access.net
Cecil, May 19, 1999 - Hi, What a pleasure to find this forum. Thank you all for your posts. I have been dealing with CHS for the past 6 years and with medicines, crummy doctors, great doctors, experimental surgery (Batista procedure - left ventricular remodeling), diets and SSD but I'm 55 and still alive. I look forward to hearing how you all have dealt with this problem and will share what I know has worked for me and what I know hasn't worked.
A doctor that you trust and that understands and is interested in treating patients with CHF. Not all doctors have the same knowledge or interest. Get rid of one who doesn't pay attention to what you say and especially one who will not work with you on the paperwork necessary to qualify and remain on Disability if necessary.
Find a good med program and stick with it. Really understand liquid retention and how to adjust your meds if you gain weight. Don't take weight loss as a necessarily good sign. You may end up dehydrated and in the hospital.
Get a good dietary plan and stick with it. I recommend "The Zone" by Doctor Barry Sears. It helped me take off 40 pounds and keep them off. I still need to lose about 30 more.
If you are in the Cleveland area, go to the Cleveland Clinic and see the cardiology group headed by Dr. James Young. Go there even if just for a secondary opinion.
Keep as active as you can and don't dispair and get depressed. It is tough and requires definite lifestyle changes but slowly and surely you learn to deal with them.
Don't get all hung up on the numbers of echocardiograms but pay strict attention to blood work and demand it from your doctors.
A good strong support group of friends and family is very important. Don't shut out your friends just because you can't do everything you once could do. Sit down with them and explain the situation and changes in parameters of physical activity. There is so much more but hopefully, I haven't worn out my welcome. Thanks to you all. Cecil. Cecil3744@aol.com
Della R's May 19 reply to Linda L's May 16, 1999 - Hi, Linda, Regarding not feeling sure about being able to work 40 hours a week so you can have insurance benefits, find out from your employer if you would still qualify working 30-32 hours a week. Some companies do qualify employees at those hours. Once you get on SSD, there is a 2 year wait for Medicare unless something has changed in the last year. My sister just went on it a couple of months ago after being approved for Disability 2 years ago. I will tell you from my own experience with insurance, that if there is any way to hold out till you are 55, the company insurance for $25 is the best rate you could get. When I had to quit work in 1997, the conversion policy was $350 per month but since my prescriptions would have cost that much, I went for it. The thing was, it was limited to $25,000. I thought with any luck at all, it would last till I got on Medicare. Anyhow, I wound up having 3 angioplasties in the next 7 months and my insurance was depleted. I only recently was able to get back on any insurance when I went back to work. Also, I go on Medicare the 1st of June. I feel very fortunate. The best thing is paying only $5 per prescription when I was paying out $350 per month just for me. Medicare does not cover prescriptions. I will keep you in my prayers. dellerdo@inw.net
Gwen S, May 19, 1999 - Hi everyone, I just got my test results back from a Vo2max stress test and an echo. My numbers have greatly improved. My EF has gone from 17 to 41 and my stress test went from 13.6 to 15.4 in 6 months. My heart has also shrunk. It was 86mm and is now 69mm. I have been on Coreg for 9 months and am now up to 25mg twice daily. The doc seems to think it is the Coreg that has made this difference. I was wondering if this means that I will be able to resume a normal life sometime in my future? My CHF is so bad. My weight has been going up, almost 20lbs, and I am having trouble maintaining my fluid. The doc increased my Lasix and it seems to help but by the time I go to bed my hands and feet are swollen and my joints ache. I have greatly increased my activity level and I wonder if this has something to do with the excess water.
I would like to thank everyone who has e-mailed me and given their support. It means a lot when you are down and feel that no one understands how it feels to want to do something so badly and your body says no. My friends have had the hardest time with this and now that I feel better, they seem to think that I am cured and can do all the things I use to do. I have the hardest time trying to explain that I am doing better but that I am still sick. I hope and pray God is going to help me beat this and I appreciate everything He has done for me. A year and a half ago, the doc gave me 2 years to live. I asked him the other day if he has revised that yet and he said with what I was doing, I could live a long time. I told him that what I was doing was putting my life in God's hands. He smiled and said that is the best anyone could do. I'm sorry for being so longwinded. I hope that with God's help, we can all be cured. Take care and I will continue to keep you all in my prayers. Gwen. gwenddot@aol.com
Arlene B, May 19, 1999 - Hello all, I have not posted much but constantly read posts. We have just sold our house, an experience that is not good for your health. My husband is retiring next month, so goodby California (too expensive to live here) and hello Ohio. Please help. Does anyone have personal knowledge about doctors in the Mansfield, Ohio area? Cardiologists or internists would be best. I would appreciate any help you can give me. Thanks. Goldysbest@aol.com
Bob Cromwell, May 19, 1999 - Hi, I am new to this forum, so please feel free to guide me if I stray. I just had triple bypass on April 15. I was diagnosed with CHF about 2 weeks ago. My doctor is very puzzled since none of his patients developed CHF after bypass. He says indications were that my heart muscle was strong and he didn't expect this development. Needless to say, this is discouraging news and has slowed my recovery down a lot. The CHF is relatively mild and seems to be responsive to treatment. I am on water pills and Cozaar, as well as a bunch of other stuff for circulation, diabetes, arthritis, enlarged prostate and blood thinners, of course.
My main problem is my worry about CHF now. Has anyone had any experience with CHF developing after bypass surgery and how has it been handled? I am also wondering if I should go for a consultation with another doctor to see if there is a alternative course of treatment out there. I am 70 years old. bcrom@adelphia.net
Melissa, May 19, 1999 - Hi, 24731838 is the correct icq number for those I gave the wrong number to. Sorry! moelissa@hotmail.com
Doris R's May 19 reply to Chuck's May 16, 1999 - Hello Chuck, I wanted to reply to your question about Coreg and CoEnzyme Q-10. I take 25mg Coreg twice daily. At my appointment May 13th, I asked my doctor if I could take CoQ10. He said it would be alright. I have been taking the two for 6 days now. So naturally, I don't notice any difference yet but I am ever hopeful. I hope my reply is of some use. Take care. Doris. RoughGoing@aol.com
Ginger, May 19, 1999 - Hiya's, My stepfather seems to be doing well. Thank you all. Your support means so much. Sunny, my EF returned to 55 in about the same time period yours did. It is 6 months later and I am still on an Ace inhibitor. My doc says I will take at least an Ace inhibitor for the rest of my life and to watch my lifestyle in order to remain where I am. I still have to go every 3 months for checkups too. Congrats on the EF! I also still get tired. This last 10 days, I am exhausted. I will answer e-mails as soon as I can catch my breath. In the meantime, hugs to all who wrote me. Cya's at chat. Hugs. Ginger. mystery@laker.net
Will W, May 20, 1999 - Hi everyone, I received a heart transplant in December of 1996. One of the things that any recipient wants to know is something about their donor. The wife of my donor sent me a letter last month through the donor organization and I have been in contact through the Internet. Today his father sent me an e-mail. It turns out he was a computer scientist and engineer. Some of the things he was involved with are the Smart pen, a data storage device; Acrobat PDF Writer; NetIQAppManager and several other things. He was not only a computer genius but a caring, Christian man. Not only did he donate his heart but his pancreas, liver, kidneys and corneas. I am so thankful that someone cared enough, even in their own tragedy, to help others. Everyone, please keep the faith in your fellow man and hope you will be as lucky as I was. Good luck to all and good health. heart266@tco.net
Jana B, May 20, 1999 - Hi, I have looked everywhere and can't find the answer to what I am about to ask. Can someone explain in all gory detail what exactly happens during a Swan-Ganz procedure, please? I have to go back to UCLA for a week, for the second phase of my transplant evaluation, and one of the tests they will do at the time is this one. I have heard nothing but bad things about it. If it is explained here on this site somewhere, can someone point me in the right direction? I asked the doctor if I had to have that test since I have left heart problems and he said I do. Someone please tell me that I don't have to lie still for 6 hours afterwards, and that it is not going to kill me! Thanks. Jana. JByers4u@aol.com
Jon's May 20 reply to Jana B's May 20, 1999 - Hi Jana, The Swan-Ganz is a type of catheter, a piece of medical equipment, not a procedure. It is the type catheter usually used in a right-heart cath, where the catheter is inserted into a neck vein rather than through the groin. The right-heart cath procedure measures pressures in the heart and gathers pulmonary information from inside the pulmonary artery. From the patient's point of view, aside from neck entry, it's not much different than a regular groin entry left-heart cath. Jon.
Kim S' May 20 reply to Sara's May 13, 1999 - Hi Sara! I'm sorry this post is a little late. I have had problems with doctors telling me one thing and my records showing another, too. When I began having symptoms, I took myself to the ER 4 times in a 7 day period complaining of shortness of breath during the night. Each time, I was diagnosed with exacerbated asthma and bronchitis. On my fourth visit, I even questioned the doctor, asking him if it could be CHF. Being a nurse, I knew something was seriously wrong with with me. I was told that I was too young and that I showed no signs of CHF. When I was stable, I viewed my medical records for the 4 ER visits. To my surprise, tests performed on 3 of those visits indicated increasing pulmonary congestion and one even concluded that I was in CHF. My dilemma is this. I am a 22 year old nurse who is new to the profession and suspected CHF. The ER doctor who treated me twice in the ER used to be a cardiologist and did not suspect it. I am so amazed that professionals can get away with this negligence? I've contacted lawyers but no one seems to think I have a case. I took matters into my own hands and have filed a complaint with the NJ Board of Medical Examiners against 2 of the doctors. I don't want this to continue to happen to other people. lalakimmie@aol.com
Jon's May 20 reply to Kim S' May 20, 1999 - Hi Kim, If the doc said in your chart that you had CHF and then specifically told you that you did not, about all I can say is that this underscores the importance of getting and reading your medical records. As a society, we have elevated doctors to a plane where they are not only allowed, but encouraged, to be arrogant. That makes it possible for bad doctors to flourish, just like good ones.
I guess it boils down to the old question, "What do you call a guy who graduated last in his class at medical school?" You call him "Doctor." Is it negligence or just lousy doctoring? Unfortunately, medical doctors now in practice still view CHF as a disease of the elderly. They were taught this in school and unless they specialize in CHF, they have not had this perception corrected by their profession. A really skilled ER doc will get it right. One did in my case. Still, how many doctors are top-notch? How many engineeers? How many architects? I thought the internist I had when I got CHF was pretty good. When that ER doc said CHF in a 36 year old, my doc actually argued with him. What can you do? Remember that word of mouth is always a powerful tool. Jon.
Jon, May 20, 1999 - Hi everyone, Here are my heart doc's EF comments:
The EF is a general indication of potential, like an IQ. It gives you an idea of the maximum potential of the heart function but does not offer knowledge about the functional reserve of the heart, or how well that particular heart/body combination supports the patient. It's not just a question of peak performance, but one of meeting regular, recurrent demands for activity that determines if someone can work. EF is also an indicator of prognosis and a marker for qualifying for CHF studies. Most studies require EF under 30 to 35% to define the patient as someone with CHF. Some people with low EF's are asymptomatic.
Ginger's May 20 reply to Melissa's May 19, 1999 - Hiya Melissa, We have a page for ICQ numbers. There are about 20 of us on it, I guess. You can find our numbers and have your own put there at www.laker.net/mystery/new.html Hugs. Ginger. mystery@laker.net
Patricia G, May 21, 1999 - Hi, I went to see my internist yesterday and he is still giving me a glowing report. He says my cardiomyopathy is really gone. However, my BP was 180/100. I don't have "white coat syndrome" but it did surprise me. He then decided that I should go back on Coreg, along with my other BP meds, to try to bring it down. That's why I made the appointment in the beginning. I wanted to return to Coreg for precautionary measures.
As you may or may not remember, my mother has just been diagnosed with DCM. My grandmother died from CHF 10 years ago. I don't know if she had DCM or not. Now I wonder, since my doctor said that there is a type of DCM that is hereditary. Has anyone read anything about this? I never have. This scares me since my 24 year old daughter is thinking about having a baby in about a year. She already has Addison's Disease (where the adrenal glands are dead) and although both her endocrinologist and OB say that should not pose a problem, I am worried about heart problems. Help, if you can. Patrigil@aol.com
Jon's Note: See http://imgen.bcm.tmc.edu/molgen/. I haven't found much plain English info online. E-mailing researchers is a good bet.
Pat L, May 21, 1999 - Hi Jon and all, I haven't posted in awhile. I fired the old cardiodoc and got a new one. He has juggled some meds around and I have more energy now but my heart rate has gone up from 60 to about 80. The new doc has me scheduled for a stress echo next Thursday. Does anybody have any info on that? Pat. patlat@yahoo.com
Bev T, May 21, 1999 - Hi everyone, I haven't posted for a while but I have been reading everything I can on SSD. Who out there that has gotten it in Florida? I may have to apply soon and I'm afraid with our aging population here, it isn't as easy as it is elsewhere. If anyone can shed any light, please email me or post for others. Thanks, and God bless us every one! Bev. Mtnmama008@aol.com
Kim S' May 21 reply to Jana B's May 20, 1999 - Hi Jana, I had a Swan-Ganz catheter put in and it was not that bad. I think the anticipation set my nerves off and that was the hardest part. All they do is numb an area on a lower part of your neck and make a small incision. Once the area is completely numb, a catheter is threaded to the heart. The only pain I felt was the small pinching of the needles in the beginning. If at any point you feel uncomfortable, just tell them. They can give you some medication to calm your nerves if you like. I did not have to lie down for 6 hours afterwards. It took a few hours for the numbness to wear off and after that the area was a little tender. Other than that, I had no problems. Best of luck to you. lalakimmie@aol.com
Brenda H, May 21, 1999 - Hi all, Thanks again for your support. It's been great. I just want to say that I went to a fire station to get my BP checked per my doctor's request, before I knew what I had. I told them my ankles were very swollen. I think I must have met the best EMT in my life and he may have saved my life. As hard as it must have been for him to tell me, he did, and said my BP was high and my heart rate was way too high, and that he heard crackling in my lungs. He said it looked like Congestive Heart Failure. Can you imagine, at a Fire station?! Just my 2¢ worth. Of course, then I went to a a urgent care clinic where I underwent more testing. I'm so happy to hear about successful transplants since I may need one someday. I now have a new e-mail address. Brenda H, EF 25%. Brendakay@wa.free.net
Pati F, May 21, 1999 - Hi everyone, Thanks to all who e-mailed me. I do love this site! I need information on sarcoidosis and its relationship to DCM. I see an opthamologist on Monday to see if he can see it. According to the dictionary, it is nodules that grow in the lymph nodes, lungs, bones and skin. I'm not sure how the eyes got involved. If he can't find it, I may have to have a lymph node removed. Thanks again. Stella. StellaO2@aol.com
Jon's Note: Go to this page and search for sarcoidosis. You'll find lots of info.
Pat D's, May 21 reply to Kim S' May 20, 1999 - Hi Kim, I read your post with sympathy and understanding. I've been shafted by the medical professionals so many times, I've come to expect it but none of it has been as bad as what happened to my 35 year old stepdaughter. She went to the ER with a BP of 182/144, chest pain, back pain, radiating right arm pain, nausea, sweating, feelings of impending doom and all the classic heart attack symptoms, only to be told there was nothing wrong with her and she just needed to get her emotions under control. They sent her on her way with a prescription for valium. She got 20 minutes from the hospital and went into crisis. Her birth mother took her back to the hospital and the same doc decided she'd had a cerebral hemorrhage. A cardiologist was in the ER and saw her chart. He immediately recognized that she'd had a heart attack and took charge but it was too late. She had a massive coronary thrombosis and died early the next morning, leaving behind an 8 year old daughter and 12 year old son.
The first doctor based his decision that it wasn't a heart attack solely on her age and gender. The cardiologist who took over her case called us all together and told us serious mistakes were made in the ER. We sued the ER doc, one of the nurses who was treating Kristi like she was a mental case, and the hospital for hiring such an incompetent doctor. We won a fairly decent settlement for the children's future but nothing can compensate for the loss of our child. You're in a good position as a nurse to educate yourself about your health problems. Knowledge is power so don't ever let the doctors talk down to you or withhold information. The more you are aware, the more you can be a partner in your health care. If your doctor doesn't want to treat you as a partner, dump him. There's too much at stake to not have a doctor you trust. Pat D. patj98@yahoo.com
Jon, May 21, 1999 - Hi all, To touch on the above post, remember that we are talking about ER docs and it is difficult to "dump" an ER doc. That's why I have a wrist Medic Alert bracelet that says "See Wallet Card." On the front of that wallet card in big red letters, it states which hospital to take me to. If I am incapable of talking to an EMT, they know by reading this, at which hospital my doctor is on-staff. That hospital has all my medical records and will call my doctor or the on-call doctor in his group once I am taken to the ER. The card also has all pertinent phone and beeper numbers (wife, cardiologist, internist). I strongly recommend such a combination of bracelet and card, naming the hospital where your favorite doctor - cardiologist or not - is on-staff.
Unfortunately, if you are taken to a hospital where your own doctor is not on-staff (an ER doc will call your doctor if your doc is on-staff at the same hospital), you are probably stuck with whatever doctor and whatever treatment you are given, and if you think it is incorrect, usually your only option is to go to another ER immediately. If you raise a big stink at some big city hospitals, the armed security officer may escort you off the premises. So please get that bracelet and type up that card and keep it on you at all times. And like Pat said, learn, learn, learn. Unfortunately, here and now, the deck is stacked in favor of the doctor, whether he is right or wrong, when it comes to culpability for plain bad doctoring. Jon.
Betty, May 21, 1999 - Hi, I was surfing the Net this morning and found this site. I was diagnosed with dilated cardiomyopathy in November of 1997 and am on ACE inhibitors (20mg twice a day). I have swelling in my ankles, shortness of breath at times, and am tired. I am 45 years old and have been fairly healthy except my weight, most of my life. I am working on the weight and know that I will feel better if I lose even 50lbs. I have 125lbs to lose. I have 3 children still at home (6, 8 & 15) and 3 children out and married (26, 24 & 19). The doctors seem to think that my pregnancies (7 total) caused the cardiomyopathy. Has anyone else come up with this problem after numerous pregnancies? Also, I have never gotten straight answers on when this changes to CHF. Where is the line that tells the doctors that you have gone into CHF? Thanks for all the info that I read! I am glad to meet some people who understand the problem of the disease! eswerda@ucsd.edu
Candy's May 21 reply to Hope M's May 16, 1999 - Hello Hope, I don't know if I read your post correctly about the entitlement of substance abusers receiving SSD. In January of 1997, the policy changed and now substance abusers are not eligible to receive benefits. The primary diagnosis cannot be substance abuse or alcoholism. It must be a mental illness or physical disability. It's tough enough getting SSD without the misinformation. There was a lot of hoopla where I work about this issue. Some clients were getting cut off because their primary diagnosis was alcoholism. GrPota@aol.com
Bobby F, May 21, 1999 - Hi, When I mentioned the Immune Globulin Studies for acute CHF in young adults, my wife wrote both Dr. Dennis McNamara at the University of Pittsburgh concerning the ongoing study and also my nurse and good friend Valerie, who works for Dr Adams at the University Of North Carolina. The replies follow:
"Our studies with immune globulin are very preliminary and I believe its use in heart failure remains experimental. We will know more by the end of 1999 but I would not advocate its general use until we have more information. Dennis McNamara."
"I talked with Kirk about this neat article you sent me. He said that it was a tiny study, therefore not scientifically done, but positive enough results to prompt a larger study. The larger one included 100 patients. They have stopped recruitment for it and are now following the patients for a year to see if it reduces hospitalizations, transplants, etc. Way too early to know anything conclusive but mostly it'd be indicated to be used in the first 2 months after onset of viral cardiomyopathy. The whole idea is still in the "wait and see" mode. Hope this helps! Val."
Bobby F. lfwcor@washingtonnc.com
Jon's Note: The small study is here.
Jan P, May 21, 1999 - Hello everyone, I haven't written in awhile but wanted to let people know that if phen-fen caused their heart problem (25% of people who took phen-fen now have valve damage), the statute of limitations for litigation is up in July. Most of the lawsuits are individual, not class action, and attorneys are taking the cases for a percentage, not a fee. They appear to have a pretty open and shut case. Jan. jan.peterson@usa.net
Al M, May 22, 1999 - Hi, For you information freaks out there, Dr. Gino has sent me a couple of new additions that may be of some interest. Both are from the British Medical Journal, in Gino's opinion, one of 5 or most respected medical journals. The first "Prevention of congestive heart failure and management of asymptomatic left ventricular dysfunction" is a statistical evaluation of a number of risk factors. It is light reading located at www.bmj.com/content/full/318/7195/1400. The second, "Emerging approaches in preventing cardiovascular disease" speaks of "promising new preventive therapies include antioxidants, lowering of homocysteine concentrations, decreasing the activation of the renin-antotensin and the coagulation systems, antibiotics, and anti-inflammatory agents." Chief among these approaches is Vitamin E. The article concludes that while of potential benefit, results are still inconclusive. www.bmj.com/cgi/content/full/318/7194/1337. Not such light reading but interesting.
Kim S, about suing your doctors, an attorney friend (a good guy, really) said, "No harm, no foul." Regretably, since you suffered no loss, you really can't sue someone for damages. Odd, but that's the way it works. It sounds like your approach may have been the best, contacting the medical board, and I am sure you will be able to find work in private practice with some doctor, should the medical board disagree with your findings. Good health, folks. Keep plugging away. Al M, TexAl in Chat. ajmiii@web-access.net
Sara's May 22 reply to Pat L's May 21, 1999 - Hi Pat, Regarding stress-echo, it is a non-invasive test and takes about an hour, depending how long you can stay on the treadmill. A nurse will take info from you and place leads on you for the EKG. You will then lie down and the doctor will do an echo (like a sonagram) that will rotate around your heart area to get a picture (which will be on a screen) and will show any defects and the pumping ability of your heart. You will then get on the treadmill with the help of the nurse, who will take your BP often. You will be told to get back on the exam table as fast as you can once they stop the exercise and they will do another echo. Doing this in that order will give a more accurate picture of your heart. The Cleveland Heart Clinic recommends this procedure especially for women since it gives them a more accurate picture and can avoid a question of whether one needs a heart cath.You should have 1-2 cardiologists, a nurse and a technician in attendance while having this test. Best to all. Sara. sunny20853@aol.com
Gina, May 22, 1999 - Hi, I hope someone out there can help me. I feel like I've lost my mind. In November of 1998, I went to the ER for what I thought was a panic attack. I was diagnosed with severe cardiomyopathy and CHF. My ef at that time was estimated to be 10. I was transferred to a larger hospital to go on the heart transplant waiting list and get stabilized. When I got there, I was told I wasn't sick enough for the waiting list. They estimated my EF to be between 10 and 20. The whole time I was in CCU, my pulse was above 160. My BP was always good. I lost 18lbs in water weight. My weight had always been borderline for my height. The doctors decided to do an ablation, which did work, until I made it home. Then I returned to my doctor and was put on a monitor. I returned to work for 2 days, then I found out my pulse was back up. I had to go back to the larger hospital and have another ablation. This time too much of the SA node was taken out and I needed a pacemaker.
Since I've been home, I've had problems with SOB, edema, 23lb weight gain over 4 months, tiredness, palpitations and forgetfulness. I've complained about this to both cardiologists and my primary MD but no one has done anything about these symptoms. I think it is because an echo I had 1 month ago showed my EF improved to 46 and this was confirmed by a MUGA. I went back to the cardiologist again with the same complaints and to show him my denial letter from SSD, and to ask for a stronger worded letter for SS. At that time, the MD did note a lot of PVCs and also short blasts of very fast heart beats. Iam now on an event monitor. The point of this long letter is that I am so depressed. I don't really trust any of my doctors anymore. I feel because I am in my early thirties, I am being pushed to go back to work. I feel I could not take the stress at this time. I have several small children and it is all I can do to just get up every day. I really need some help finding a good doctor. If anyone knows a good one on the East coast, please let me know. I am filing my appeal for SSD and if anyone knows a lawer I can trust, I live in a very small town and I don't think anyone has experience with anyone so young applying for SSD. Thank you for any advice. This is a great web site! Gina. rnr1286@carol.net
Virginia's May 22 reply to Jon's May 21, 1999 - Hi, I did not think an EMT would take you to the hospital of your choice. It is my understanding that they have to take you to the closest hospital to receive ER help, so my cardiologist wrote a letter and signed it, to the effect that because of the seriousness of my heart condition I must be taken to Emory or Emory-Crawford Long hospitals. I have filed it with my 911 office, I have a copy in an envelope on the refrigerator and I carry one with me at all times. I wear the bracelet which indicates heart patient with allergies. My fuschia card, which I have laminated because I have to change it so much not only contains the information that Jon indicated but also all my medications and amounts, plus allergies. I am allergic to morphine and codeine, and this is very important information for them to know because they are very inclined to give you a shot of morphine for pain. I also keep my medicines listed on the computer. I can keep track of changes made in them. I also print out a copy to carry to the doctors so I don't have to remember the names and amounts. The nurses love this because they don't have to write down all this information and there is no chance of them recording it incorrectly. They have the printed copy to tape to the page in your record for that visit. Best wishes to all and I hope Robin is doing well. Virginia P. vpauline@stc.net
Jon's May 22 reply to Virginia P's May 22, 1999 - Hiya Virginia, My experience with EMTs has always been while conscious, so far. <g> They always ask me which hospital's ER I want. If they took me to the nearest hospital, I'd be in trouble since they are a small community hospital without a trauma center or specialists in-house. Maybe they ask because I live in an area with many hospitals nearby, but none in my actual city. Three cities converge at my location and when away from my house, I may have to deal with any of those three 911 centers. I have assumed the EMTs ask, which hospital routinely since they have always asked me. Now that you mention it, the only way to be sure is to call your area ambulance service and ask. :-) I say ambulance service, because in my area, the Fire Department may get there first but they wait for an ambulance to actually transport you to a hospital.
PS. My card also contains current meds, allergies, EF and supplements. It's computerized also but I refuse to let nurses have it anymore, I read it to them. That's because to make all that info fit into a wallet (on a wallet card) requires a lot of work each time I change it or have to replace it; cutting it to fit the official bi-fold card and stapling it to the stiff inner part of the card, etc,... Jon.
Joyce, May 22, 1999 - Hi, Does anyone have CHF and diabetes? joie6800@aol.com
Ginger's May 22 reply to Betty's May 21, 1999 - Hiya Betty, Welcome to Jon's Place. Just go to the Site Index and start reading. Start with The Manual. You will find a lot of your answers and those you don't, someone here may know. To all newbies, we have Chat 3 times a week. Times and days are listed on the Chat page.
Walt, my stepdad, is doing good. Your prayers are working. He was a very sick man. He has a long road ahead of him but I think he is going to do ok. He is just a little slower than before and with CHF, he was already a little slow. <lol> That's ok because he will be well enough to enjoy it for a while, I think. The human body is an amazing thing, the way it just keeps going sometimes. I am trying to catch e-mails up but I think I lost a few so if I don't e-mail you back, I am sorry. Gino will be at Chat tonight. I'm sorry I didn't get a chance to let you know sooner. I will next time. Hugs, Ginger. mystery@laker.net
Bobby F, May 22, 1999 - Hi, This is a message about "Butterflies, God's way, and Struggling a little bit in life" courtesy of Debbiedo, one of our members who rarely posts but is here with us just the same. Thanks Debbiedo! This is dedicated to the members of this forum and especially to Robin W and also my sister Linda, who beat 2 seperate bouts of breast cancer years ago. One day as she was first diagnosed and as she was sitting outside, she saw a beautiful, colorful butterfly fly past her and fluttered all around her. A feeling came over her that she had never experienced before, a feeling of peace and a divine message from above that she was going to be okay. I'm happy to say that she has been free of cancer for 20 years. Whenever I see a butterfly, I think of her and even sent her a few made out of silk that I found in a store the other day.
A man found a cocoon of a butterfly. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to force its body through that little hole but then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. So the man decided to help the butterfly, he took a pair of scissors and snipped off the remaining bit of the cocoon. The butterfly then emerged easily.
But it had a swollen body and small, shriveled wings. The man continued to watch the butterfly because he expected that at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.
What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the tiny opening were God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life. If God allowed us to go through our life without any obstacles, it would cripple us. We would not be as strong as what we could have been. And we could never fly. So have a nice day and struggle a little.
Cindy M, May 22, 1999 - Hi all, I thought I'd come out of lurk mode to do an update on my health status. My current EF is estimated to be in the 30-35% range by echo, which is up from the 10% at diagnosis in August of 1998. I just had my second Vo2max test and it showed a change from 19 to 23.3 over 6 months time. The technician and the pulmonary specialist seemed to think the new score was great, as evidenced by their effusiveness. I wasn't real clear about what the stress test numbers meant, so I used Jon's link to the Cleveland Clinic to find out. A score of 23.3 on the Vo2max test is the equivalent of a fair score for a 55 year old woman. I'm 39. A 23.3 score is the lowest in the category for women my age. I guess I'm a tad disapointed because I got the impressesion that I did so well and no one put it in perspective for me.
On the bright side, which I continue to search for on this journey, I was deemed healthy enough to begin working towards getting my heart rate up to 20 beats per 10 seconds while exercising. I'm happy to get the go-ahead for this since I'll be off work all summer with my young son and plan to engage in biking and swimming as well as integrating my walking regimen into the mix. On the meds front, I'm on 100mg Capoten 3 times per day, 25mg of Lasix, 0.25mg of Digoxin, 2.5mg of Norvasc, 150mg of Wellbutrin twice a day, 1mg Klonopin twice a day, CoQ10 (did anyone see that it's now being advertised to smooth wrinkles?) and various vitamins and supplements. I've had difficulty tolerating Coreg and have settled on the baby dose of 3.125mg twice a day for at least another month or two. Besides the shortness of breath and extreme fatigue I had with higher doses of Coreg, my weight would not budge. Since I've dropped back down to the lower dose, I've managed to get back to losing weight. I'd like to drop another 10lbs or so before titrating up on Coreg and then I'll just have to battle it out, if I must. So far, I've managed to drop over 40 of the 75lbs or so I needed to go.
The weight management has one of the toughest aspects of having CHF/DCM. Well that's about it, other than wanting to express my ongoing gratitude to everyone that is involved in keeping this board the valuable resource it is. Also, welcome to all the newcomers and sincere wishes to all for improved health and for serenity and peace of mind. Warmly, Cindy McCrackan. cleighmc@aol.com
Sherrell, May 22, 1999 - Greetings to all, I'm usually a lurker, not a poster. Last month my chest pain increased. After a visit to my doctor, including an EKG and good exam, he felt I had inflammation around my breastbone and possibly my ICD so he started me on Celebrex. This did help the pain. Last week, I did not take it to see what happened. The chest pain returned. Has anyone else taken this drug routinely? Taking it did not affect my blood studies, BP or pulse levels. This week has been a real low energy one. It seems when the temperature goes up, the energy goes down. Have a good week-end. Sherrell. sherrellgay@juno.com
Hope M, May 23, 1999 - Hi, I haven't been reading posts for a few days because I broke my ankle. I'm scheduled for surgery Tuesday and will get a plate and a screw. Right now we're waiting for my Coumadin levels to come down (I have an artificial mitral valve). So, I hope to be back posting in a week or so. Hope. mcneils@ibm.net
Cecil C's May 23 reply to Jana B's May 20, 1999 - Hi Jana, With regards to the Swan-Ganz right heart cath, it is scarier sounding than it is in reality. I have had it done 3 times and each time I am very anxious but then I get anxious just walking into a hospital. I can assure you that you won't have to lie still for 6 hours. In fact, after one I had performed at 9:00 AM, I had a stress test at 1:00 PM. The proceedure itself is pretty much a walk in the park. As performed at the Cleveland Clinic the following happens:
Check in and remove your upper garments for the ubiquitous gown. Go lay down on a gurney, get an IV hookup and get pushed into the procedure room. Transfer from gurney to table and lay there and wait, get nervous. Doctors show up and give you a numbing shot in the lower neck, make a small incision and insert catherter. Doctors take pressure reading, talk a lot of mumbo jumbo to each other about wedge pressure, etc. Doctor or nurse pulls out catherter, places small bandage on incision, move you back to gurney and back you go to the waiting room. There they give you some juice and cookies if you so desire (you fasted before). You sit around for an half hour or so, get dressed and leave.
The advantages of this procedure are that doctors find out internal pressures of the heart and can adjust meds to help reduce or increase the pressure as needed. Results can help justify the necessity for transplant if that is what you and the doctors have decided is in the best in your case. It helps doctors tune you up for transplant. If you are getting a transplant, it gets you used to having the Swan-Ganz in your neck. I had one in my neck for the week before the Battista operation and then for 3 weeks following. Believe me when I say it was a pleasure when that piece of apparatus was removed. Good luck. Since UCLA is my alma mater, I'm sure they know what they are doing. Cecil3744@aol.com
Cathy H, May 23, 1999 - Hi, Even though I'm on the wrong side of the forum, I thought you might be interested in the following. One day last fall, I was driving my husband home after a visit with the transplant doc at UVA when his blood pressure and heart rate dropped suddenly, his vision and hearing went fuzzy, and he started having chest pains. I called 911, the EMT's arrived, and I asked them to take him back to his doctor at UVA (about 15 miles) No I was told, there's a small town hospital 10 miles from here and we are required to transport to the nearest facility. My husband, who had already had the experience of being helicoptered out of a rural ER a year before, declined transport. He was feeling a little better from the oxygen anyway and after he signed the refusal, right before they took the mask off, the EMT said "Okay now, breathe deep!" That was one wild ride back to the University but all's well that ends well, right? If I'd been thinking clearer, I would have asked them to follow me down the road 3 miles. holts7@roanoke.infi.net
Jon's May 23 reply to Cathy H's May 23, 1999 - Hi Cathy, You bet I'm interested! I want the most accurate info possible so I can pass it on. I am glad this topic came up. I have written an EMT instructor I know to see if this is a locale specific question or if there are some sort of general guidelines on where we are taken when administered to by EMTs. I'll let you know what she says as soon as I hear from her. I will also be on the phone tomorrow to ask my doctor, the local ambulance service, and anyone else I can think to ask. I for one want to be sure I am taken to the hospital of my choice and will try to pass on the most certain way to get that done, once I am fairly certain what it is. Jon.
Doris, May 23, 1999 - Hi, I had a triple bypass 2/15/99. I was hospitalized 5 times because I've got a rare disease called Drexler's Syndrome. I stayed at a temperature of at least 101.5° I felt lousy all the time. Has this happened to anyone else after heart surgery? Is 10mg daily Prednisone the best treatment? I take meds for high blood pressure, diabetes, high cholesterol, hardening of the arteries, and severe depression. My family doesn't seem to understand that I cannot do all the things I used to do, for them or for myself. I need some advice or at least someone to talk to. Thanks. DArmst2081@aol.com
Joy R's May 23 reply to Gina's May 22, 1999 - Hi Gina, You don't say where on the East coast you live. It is my understanding that you need help from your doctor to get SSD approval. We live in our bodies and know when they aren't right. You need to find a doctor who will listen to your problems and help you get started on SSD. If I had done that in 1995, I probably wouldn't wouldn't have heart trouble today. I had a hysterectomy and a few days later started to have problems with eating. I weighted 130lbs and had been very healthy. In fact, not only was I working as a nurse, I was also taking courses to advance my career. I started dropping weight and hurt all the time. My tests came out ok so the doctor assumed it was in my head.
When I got down to 88lbs, I got another opinion and he agreed with the first doctor, told me I liked being skinny and could eat if I wanted. I knew something was wrong so I got another opinion and this doctor took action but it was too late. I had emergency surgery and 2/3 of my small bowell had herniated and twisted. He repaired it the best he could. After that I still had trouble with eating and a second surgery was done and a J-tube was put in my intestines so I could get nourishment. After 2 years it eroded and had to be taken out. I was on my own again and it was about this time that I went in heart failure. The heart doctor thought my heart damage may have been caused by malnutrition, which, had I listened to my body when I first got sick, I very well would not be sick today. I am very limited in my activity and my life is essentially over.
I infuse IV heart drugs at home and I also infuse hyperalimentation which gives me nutrients through my bloodstream. On June 1, Medicare is cutting payment for my hyperalimentation and so I will try to do without it but since I have so much intestional damage, I'm not sure if I can eat enough on my own to keep going. The moral of my long story is: Find a doctor who will listen! We only have one body. We live in it and we know when it is sick. I will always regret not being aggressive when I knew I was sick and just listening to the doctors. We only get one time through this life. Make yours maningful. Stand up for your body, it is the only one you have. Joy. wapalaremi@home.com
Linda O's May 23 reply to Bobby F's May 22, 1999 - Hi Bobby, I wanted to thank you and debbiedo for the butterfly story. I copied it and plan to send to all my e-mail friends. I hope that is ok. It is very uplifting and I thank you for it. Linda O. norvalo@clarinda.heartland.net
Jill S, May 24, 1999 - Hi, In my former life - pre CHF - I was a health program manager for the State of California, in the Emergency Medical Services program. California state law requires that a patient be transported to the closest available receiving hospital for non-trauma cases. Trauma hospitals are designated by level of capability to handle different types of trauma. It doesn't matter what hospital you want to go to or what hospital your doctor wants you to go to. If it's a Code 3 (emergency) transport, you go to the closest hospital. Other states may have different laws. jilschro@jps.net
Jon's May 24 reply to Jill S' May 24, 1999 - Hiya Jill, I have info coming in from all over and will have to digest it all. Do you know if California has legislated what constitutes an emergency transport? Is it any ambulance transport or is that definition left to someone else? If so, do you know who makes that decision (in California)? Thanks, you're always sending me good information (e-mail) and don't get any credit. :-)
To everyone who has sent me a bio, please continue to be patient. I am really swamped right now. I haven't forgetten you and I appreciate your patience so far. To whoever asked me about dropsy, I was wrong! It didn't mean congestive heart failure, it meant edema - in the good old days. Tomorrow, I may be busy trying to find a piece of urgently needed hardware, so I'm not sure about posts. Fingers crossed, Jon.
Ann C, May 24, 1999 - Hi, Just a note to let everyone know that I got my echo results back today. I have declined and I am not very happy about it. It really scares me. My last EF in 7/98 was 31%. Today they said it is 18 to 20%. I leave for St. Louis this Thursday to talk and meet my new cardiologist. My family is going with me. Wish me luck. dacadcannann@yahoo.com
Ben B, May 24, 1999 - Hi, Has anyone here ever been sent to the SSD doctor? I've sent these guys 3 echos, one cath, one EP study, 2 stress tests, records from 3 hospitals and 3 doctors, plus countless EKGs and blood tests. The most recent echo is only one month old. What can they find out in a doctor's visit? bdbrinkman@juno.com
Bill D's May 24 reply to Doris' May 23, 1999 - Hi Doris, The AOL Postmaster didn't like your e-mail address. That Drexler's Syndrome must really be rare. I couldn't find it in the National Organization for Rare Disorders site at www.rarediseases.org/lof/lof.html. I have sympathy for anybody who has to take Prednisone! I took it in the hospital and every day I took it, I got sicker. I have a Mayo Clinic Pharmacist CD and Prednisone has more side effects than most meds, everything from blindness, hallucinations and depression to mood swings. It says you're not supposed to take it with any diabetic medicines because it will increase your sugar. You also not supposed to take it with digitalis or diuretics. It holds the sodium in your tissues and makes you take on water. I don't see that you listed many of the medicines that most of us CHFers take. Do you take an ACE inhibitor, a beta-blocker, a diuretic, a potassium supplement or digitalis? Anyway, welcome to Jon's Place! If you are only reading the messages posted on the forums, you are missing the best part of Jon's site. At the top of each Forum page, click on the words "Site Index." Start by reading "The Manual." Jon has over 200 pages of information on Congestive Heart Failure that you might not know. Bill Drummond, Florida. billdog@gate.net
Jan P's May 24 reply to Cecil C's May 23, 1999 - Hello everyone, Cecil, please tell us about your Batista procedure. Did it work? Are they still doing it? How long ago did you have it? Many of us have heard about the procedure but I would guess few of us have communicated with anyone who has had it. I would love to hear your experience. Bye, Jan. jan.peterson@usa.net
Jon, May 24, 1999 - Hi everyone, What I have discovered about ambulance rides so far is that it is area specific. So what applies in one city may not apply somewhere else. It is not legislated in my state. I talked to the supervisor in charge of EMTs at my local ambulance service. He quoted me their written policy (he was very helpful). If a patient can verbalize their choice of destination, that's where they take you. If not, you go to the hospital of their choice, normally the nearest one, although there are exceptions.
I'll be looking into legitimate ways to get around that over the next week and will let you know what I find. "Registering" a preference with a 911 service in my area would have no effect, nor would a doctor's letter or wallet card, if I could not speak. If you are concerned about this, talk to your local ambulance service EMT supervisor!
I am now using a "natural" keyboard and am starting to learn how to type. This is gonna slow me waaay down for quite a while, so if my replies seem brief or blunter than usual (ouch!), it's because I am hunting and pecking again. :-(
I had a long talk with a newspaper reporter today and he is interested in the Y2K concerns of people on a lot of Rx meds. Such as, are you worried about not being able to get your meds? If anyone wants to give an opinion on this, send it to me e-mail and I'll tally them up and let him know any trends for an upcoming article of his. Due to typing stress, I probably won't reply unless a specific question is included. <g> Jon.
John Len's May 24 reply to Ben B's May 4, 1999 - Hi Ben B, My case was handled over the phone except for 2 trips to the local SS office for paperwork. John. a_lenny6@hotmail.com
John Len's May 24 reply to Joyce's May 22 1999 - Hi Joyce, There are a lot of us with CHF and diabetes and other medical problems to boot. John. a_lenny6@hotmail.com
Sara's May 24 reply to Jon's May 24, 1999 - Hi Jon, I just got off the phone inquiring transporting patients to hospitals. In Washington, DC, one can request the hospital of their choice since most hospitals in DC are all within 7 minutes of each other, unless by chance it is a life threatening situation when it would be the sole discretion of the paramedics where you get transported. I had this experience when I went into anaphylactic shock and had to be taken to another hospital at which my doctor did not have privilages. In my opinion the distance was the same but paramedics make the decision. Usually EMTs are sent on a call depending on the urgency whether a paramedic is sent out (with the fire truck, police and the whole fleet). I was told this rule is for the safety of the patient and for liability purposes. Best to all, Sara. sunny20853@aol.com
Renee M's May 24 reply to Jon's May 20, 1999 - Hi Jon, I was so glad to read your post about EF. With treatment, so many of us experience a rise in EF, perhaps even to almost normal. Does that mean we are well? Of course not! So many doctors see a better EF and think we're doing better than we are. They don't realize that fatigue, shortness of breath and fluid retention are a way of life. The wording in this post will come in very handy for my SSD review, now in progress. I have experienced a significant rise in EF (20 to 45) and have really been worried about it for the SSD review. Will they think I can go back to work now? I know I can't. It's great to talk to people on this site to share all the information we've gathered from our experiences. Thanks for the help. Keep up the good work, but only as your health allows. Renee. Auntonay@aol.com
Linda O's May 24 reply to Ann C's May 24, 1999 - Hi Ann, I wish you luck with your new doctor. Hopefully, he will have something to say to make you feel better. I have been on Coreg and my EF hasn't improved. It hasn't gotten worse so I feel thankful for that. Hang in there and let us know how your visit turns out. Linda O. NorvalO@clarinda.heartland.net
Jnaa B, May 24, 1999 - Hi, I live in California and our hospitals are in an emergency situation they call saturation. They have been like this for months. What it means is there are not enough staff and rooms to cover patients needs. We used to be able to request which hospital we wanted, assuming we were coherent. Now we get transported to whichever one has room. Lately though, they have been just closing down ERs. If you are critical, they will accept you at any closed hospital but you won't be seen till they can get to you.
I have a question for anyone in the medical profession. Do you guys really look for our medic-alert bracelets? If you do, do you call the 1-800 number to get our info? I'm just wondering. Jana. JByers4u@aol.com
Felix O, May 25, 1999 - Hi Everybody, For those of you worried about confronting the dreaded Disability Review Monster and it's henchmen, one of these days (myself included), check this Website: www.ssdisability.net/review.html. It has a lot of useful info about SSD reviews. felixor@prtc.net
Kay's May 25 reply to Bill D's May 23, 1999 - Hi Bill, Yours was a very interesting post to Doris' 5-23 post. I wonder if the problem might be with the spelling of the syndrome? Perhaps it might be Dressler's syndrome in lieu of Drexler's syndrome. I would be interested in what your source has to say about it. I did not think this was thought of as rare but I certainly could be wrong. Good luck in finding more information. Kay. bobruiz@surfsouth.com
Tom S' May 25, 1999 - Hi, There is one rather delicate area of personal "health" when applying for SSD, or responding to a review questionnaire that no one has really mentioned, which I feel is very pertinent is sexual dysfunction or lack of energy to "perform." I won't go into any more detail other than to say I added a line about that aspect of my life in my review questionnaire and as previously noted, I am continuing on Disability. biggerbhoy@hotmail.com
John Len, May 25, 1999 - Hi, I posted previously about the fiasco that resulted when we called the emergency squad at 2AM because of my heart attack. I still say I could have walked to the hospital faster and suffered less damage to my heart, but that's water under the bridge. I will agree that in most cases that the emergency squads are most efficient, but you never know. John. a_lenny6@hotmail.com
Paul M's May 25 reply to Bill D's May 24, 1999 - Hi Bill, About diabetics and Prednisone, this definitely is not a good combination. My doc put me in a 8 day run of Prednisone and my blood sugar control went wack-o. During the first two days of 60mg/day dosage, I doubled the number of insulin injections (4 per day) and I still wasn't in very good control! I'm off it now and my sugar is back to normal. My doc did not warn me of this. paulmcferrin@worldnet.att.net
Ruthie A, May 25, 1999 - Hi all, Well, I've had another new experience in the world of CHF. I have been having trouble lately juggling the correct amount of diuretic without getting dehydrated. It seemed like a losing battle and that I was gaining weight. I was right. Last Saturday night I woke up unable to breathe on my left side, and struggling to breathe while laying on my right. Sitting up was the only option but I was so tired that I prayed hard, layed back down and went into a fitful sleep. The next morning between gasps I told my husband I was having trouble breathing. He called my doctor who dramatically increased my diuretic (I sure wasn't having any problems with dehydration then). We opted not to go to the ER unless the extra meds didn't work. We are new in the community and no one knows us. After all the comments here about ERs and ER docs, I think we made the right decision.
Anyway, although I am still short of breath and fatigued, I am also about 20 pounds lighter and one dress size smaller! Hey, maybe this CHF stuff ain't so bad after all! <g> My husband and I were kind of scared when all this happened and my 18 year old son became quite insecure. He climbed into bed with me and just cuddled until he was reassured that I was going to be okay. He was afraid I was going to die on him right then and he didn't know what to do
What a wake-up call! I had been feeling really well lately and have been doing more and more each day. Add the moving to a new town and all those adjustments, and I had become one busy woman. Just this week I was sharing with my hubby about how it sometimes seems as though we are just imagining the CHF. After all, my heart failure is diastolic in nature as opposed to most of you who have systolic (or LV) failure. Consequently my echos are gorgeous, with no enlargement and an EF of 55%. I also recently had a Holter monitor and found out that I am a "queer duck" there too - my doc's words! While most people have a few PVCs or skipped beats to their normal heart rhythms, I have absolutely none. That is very, very rare according to my doctor. So if my echo and holter are so perfect, and I am feeling so well, maybe I'm not sick after all, right? Wrong. Just 2 days later, I had the breathing problems.
So I having been rethinking my attitudes and my perspective. Here is some of what I have concluded: We all go through good times and bad times, but we still have this awful thing called CHF. We need to remember to take care of ourselves and make each day count. We never know when we are going to wake up in trouble. We don't know which day is going to be our last. We need to love on our families daily and remember that we are in God's hands. That way, good day or bad, will be a day to remember. Ruthie A. rlaba@preferred.com
Ginger's May 25 reply to Joyce's May 22, 1999 - Hiya Joyce, Go to the site index and look for a page called "E-mail others with your illness" or something close to that. It is a page about people here with multiple conditions like CHF and diabetes. If you want, you can also be added to the page to let others find you. Just to let you all know, Jon made the print in the chat room bigger and it is easier to read. So cya's at Chat. By the way, Walt is home. Your prayers and support were wonderful. Thank you. Hugs, Ginger. mystery@laker.net
Betty, May 25, 1999 - Hi everyone, Thanks for all the e-mails! I have found my tests results from my last echo. Lots of people have talked about EF % and I am not sure what mine is. One of the measurements that was listed was % Fractional Shortening; does anyone know if this the same thing? Mine was 24% (normal was listed at 28%). I was also surprised (I should not have been) that my memory problem is associated with CHF. I thought I was losing my mind. I also am going to check into my Disability benefits just in case I get to the point where I will need them. Again, thanks for all the responses. This site has helped me a great deal. At least I know I am not alone. I hope everyone is feeling well. eswerda@ucsd.edu
Chase G, May 25, 1999 - Hi all, I just returned from Cleveland Clinic with a mitral valve repair. On a scale from 1-4 (4 being the worst), mine was a 5.5! I am feeling better, but still have some racing episodes. I fired my defibrillator 8 days after surgery. They say that's not a problem. The surgeon said if he hadn't read my file, he wouldn't have known I have cardiomyopathy. Does anybody out there experience such episodes? Thanks. Chase G. cmgleg@aol.com
Bill D's May 26 reply to Kay's May 25, 1999 - Hi Kay, I think you're right. There is a condition called Dressler's Syndrome and it sure sounds like what Doris has. In Dressler's syndrome, the covering of the heart and lungs are the primary targets of the autoimmune system. I found more information that Doris should read at: www.vt.edu:10021/chre/hnfe/cardiac/prevq2.html#q38 (which doesn't seem to be working. <g> I will write you both with the information. Bill D. billdog@gate.net
Lee R's May 26 reply to Chase G's May 25, 1999 - Hi Chase, By episodes, I think you are referring to the ICD firing. Mine has fired (as most of the folks know, it was December 25, 1998), my Christmas present! Seriously, I do look at it like that and have also had it charge up 2 additional times but my own heart changed back to sinus rhythm and the ICD absorbed the shock and I did not feel anything. Keep the faith, it's doing what is supposed to do. Bestest, Lee. LeeRoush@aol.com
Cecil C's May 26 reply to Jan P's May 24, 1999 - Hi Jan, In June of 1993, I was diagnosed with idiopathic cardiomyopathy and told by my doctor that I would either have to get a heart transplant or would probably die in about 3 years. Needless to say, that was a tough day. Early on I decided against a heart transplant. There are many personal reasons and one we are all faced with at some time. This decision did not create much happiness with my friends and family.
After 3 years of bouncing between good days and bad months, in the late summer of 1996, my mother was watching an ABC news program and a segment on the Batista procedure came on. She taped it and sent it to me with the hopes that I would consider it. I tried to find out who was doing it - naturally my local cardiologist knew nothing about it. Living in Montana, I knew nothing of the reputation of the Cleveland Clinic. After checking around, a very good friend referred me to the past head of Cardiology at the Mayo Clinic. I turned to him for advice. He said if the CCF (Cleveland Clinic Foundation) was involved and I wanted the proceedure, that was where I should go.
I called the CCF and asked how to volunteer to be a "lab rat." Unlike some of the other hospitals and clinics performing the surgery, the CCF has a very stringent list of requirements to be a subject. The primary one was that I had not had a heart attack and the second was that I not have clogged arteries. Since my only problem was a dead heart muscle, which I supported with medical records I had to send to them, they approved me to come back for a study to determine if I qualified. I went to the hospital for the evaluation on October 15, 1996, and after the first series of tests, they admitted me to the hospital. They were surprised to hear that in my condition I had driven myself from Billings, Montana to Cleveland. Those of you who have been suffering CHF for long periods know there are ways we can pace ourselves. I had allotted 8 days to make a normal 3 day drive.
The testing lasted a week, at which time we were seen by a barrage of doctors. Naturally, they asked thousands of questions, some of them seemingly innocuous (what was my lifestyle, etc). Near the end of the cycle of testing, I thought they were going to refuse and put me back on medication, which my Montana doctor had thoroughly screwed up the amounts I should be taking. We had a long talk with the cardiologists (team of 5) and the surgeon. It was decided, not unanimously, that proceeding with the operation was best for me both physically and mentally. They actually listened to what I wanted to do, which was astounding after my previous experiences with doctors.
On October 22, 1996, I became the 26th Batista operation performed at the CCF. Believe me, it wasn't all cake and icing. There were a couple of real scary moments in ICU when my blood pressure dropped to 40 over 15 and I had a fluid buildup. They poked a hole in my side with a tube to remove it. At least, that's what I remember happening that night. For those of you who are not familiar with this operation, they removed a pie shaped slice (about a third) of my oversized heart.
I have had good success since the operation. My EF, for those of you who follow that, went from 11 to 35; Not great but way better than it had been. Unfortunately it did not stop the degeneration of my heart and it is enlarging and my EF is down to 18. However, I am able to get around my house and do most of the things required to keep up the house. I travel extensively to see friends and family, but will lay up for a couple of days if I feel run down. I have not been able to get firm figures from the CCF about how many proceedures they have done. I don't believe it has been as successful as they had hoped since it doesn't reduce the degeneration. They do still do the operation but I think the criteria are much more stringent now.
For me it was great. It has given me at least an extra 2½ years without transplant. I don't know if that answered any of the questions you have but if you want more info on my specific case, e-mail me and I'll try to answer to the best of my knowledge. Also, if anyone out there has had this operation, I'd sure be interested in talking to you. Cecil3744@aol.com
Jon's Note: Was Patrick McCarthy your surgeon? He told me once that choice of the right patients is what the success of the Batista Procedure depends upon.
Tom S' May 26 reply to Felix O's May 25, 1999 - Hi, The site you gave is a good one, although I could not get to the site from www.ssdisability.net/review.html. I successfully got there by dropping off the "review.html" at the end. While it is a pitch for an SSD Attorney, I was surprised at the throughness of the site and the many subjects it touched on regarding Social Security Disability (SSD). It also gave me a better insight on why I continue to qualify for SSD. On one of the pages on the SSD lawyers' site was a page devoted to defining disability. Contained in that definition is a section which states that a person's ability to continue in the type of job in which they had been employed. One of my questions to my doctors, when they suggested I had improved to the point of working part-time was, "Who is going to employ a 52 year old terminally ill CHF patient?" Perhaps that was taken into consideration in the evaluation. Also just for informational purposes, if individuals who have successfully gone through the SSD process could indicate which state they are from, perhaps a pattern could be recognized. I'm in North Carolina near Charlotte. biggerbhoy@hotmail
