The paperwork never ends The Archives
June 16-31, 1999 Archive Index CHFpatients.com

Marty 6-16     ICD questions, higher ACE inhibitor dose & more
 
Joe D's 6-16 reply to Leland Y's 6-7     diet & cholesterol levels
 
Joe D 6-16     why beta-blockers?
 
Phyllis A 6-16     was anyone's CHF caused by cancer treatment?
 
Bobby F's 6-16 reply to Claudia S' 6-15     sweating
 
Phyllis A's 6-16 reply to Joe D's 6-12     tingling in the extremities
 
Della R's 6-16 reply to Claudia S' 6-15     sweating
 
LeeAnn D's 6-16 reply to Claudia S' 6-15     sweating
 
Sherrell G 6-16     severe chest pain questions
 
Joe S' 6-16 reply to Claudia S' 6-15     sweating
 
Keith Benton 6-16     seek Philadelphia area doctor
 
Susie 6-16     multiple health problems, scared
 
Linda O's 6-17 reply to Susie's 6-16     welcome, education, coping & more
 
Suzie T's 6-17 reply to Sherrell G's 6-16     pains, sleeping, doctor & more
 
Debbie 6-17     altitude, sex questions
 
Bobby F's 6-17 reply to Phyllis A's 6-16     chemo-induced CHF
 
Rosamond S' 6-17 reply to Keith B's 6-16     Philadelphia area CHF docs
 
Steve B 6-17     intro, EF, job/Disability questions
 
Jon's 6-17 reply to Steve B's 6-17     low EF & full time work
 
Linda G 6-18     CHF or no CHF questions, meds & more
 
Phyllis A's 6-18 reply to Bobby F's 6-17     cancer treatments & CHF
 
Sammie 6-18     breathing at night
 
Pat D's 6-18 reply to Susie's 6-16     coping & more
 
Hope M 6-18     private Coreg user survey
 
Renee M's 6-18 reply to Phyllis A's 6-16     cancer treatment & CHF
 
Renee M's 6-18 reply to Claudia's 6-15     menopause, CHF & sweats
 
Renee M 6-18     urgently seek SSD review information
 
Tom S' 6-18 reply to Debbie's 6-17     sexual exertion
 
Sherrell G's 6-18 reply to Suzie T's 6-17     update, severe pain, frustration
 
Dee K 6-18     seek west Texas CHF doc
 
Ben B's 6-19 reply to Linda G's 6-18     right-sided heart failure
 
Tom S' 6-19 reply to Renee M's 6-18     SS Disability reviews
 
Robin W 6-19     awaiting transplant - update
 
Bill D's 6-19 reply to Linda G's 6-18     second opinions, docs, questions
 
Claudia S 6-19     Levoxyl & Coumadin questions, hair loss & more
 
Phyllis A's 6-19 reply to Renee M's 6-18     chemo & side effects
 
Jack's 6-19 reply to Debbie's 6-17     vapors
 
Jon's 6-19 reply to Linda G's 6-18     get a second opinion
 
Dee K's 6-20 reply to Renee M's 6-18     seeing SSD docs
 
Debbie M 6-20     docs say I'm too young, questions & more
 
Jon's 6-20 reply to Debbie M's 6-20     I suggest getting another opinion now
 
Joe S' 6-20 reply to Tom S' 6-19     SSD
 
Carolyn H's 6-20 reply to Joy R's 6-13     dobutamine experiences
 
Phyllis 6-21     thanks
 
Jon 6-21     just gabbing
 
Renee M's 6-21 reply to Phyllis A's 6-19     chemo & CHF
 
Jane M's 6-21 reply to Claudia S' 6-19     chemo & CHF
 
Tom S' 6-21 reply to Jon's 6-21     attitude is everything
 
Helen O's 6-21 reply to Phyllis A's 6-16     adriamycin, timing & CHF
 
Helen O's 6-21 reply to Sherrell G's 6-16     sharp pains
 
Kim S 6-21     tingling in the extremities & more
 
Linda G 6-21     thanks, edema, seeing new doc & more
 
Phyllis A's 6-21 reply to Jane M's 6-21     thanks, chemo & CHF, fluid retention question
 
Luc D's 6-22 reply to Steve B's 6-17     coping, CHF & working & more
 
Betty S 6-22     adrimycin chemo & CHF
 
Gatha E 6-22     SSD update
 
Joe S' 6-22 reply to Jon's 6-21     Christ is the answer
 
Doris R 6-22     sleeping on my left side
 
Patrick 6-22     Coreg side effect questions & more
 
Maggie's 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Roger H's 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Betty L 6-23     a-fib return after RFA questions
 
Kim S' 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Renee M's 6-23 reply to Jon's 6-21     illness, motivation, helping others & more
 
Doris R's 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Charlote's 6-23 reply to Susie's 6-16     hang in there
 
Bobby F 6-23     the present
 
Tom S 6-23     weight gain/loss with Coumadin start/stop
 
Janet's 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Cathy 6-23     update - good news & more
 
Tom S' 6-23 reply to Gatha E's 6-22     SSD reviews, lack of consistency & more
 
Linda ? 6-23     Coreg dosing once a day
 
Jill S' 6-23 reply to Patrick's 6-22     Coreg dosing & side effects
 
Doug K's 6-24 reply to Tom S' 6-23     Coumadin use & weight gain
 
John Len's 6-24 reply to Tom S' 6-23     SSD, reviews, Medicare, HMOs
 
Phyllis A's 6-24 reply to Helen O's 6-21     thanks, doctors don't want to say
 
Peg G 6-24     update
 
Tom S' 6-24 reply to Doug K's 6-24     weight gain/loss, John Len
 
Doug K 6-24     has anyone heard from Muriel?
 
Hank 6-26     intro, meds & more
 
Doris R 6-26     update - good news
 
John Len's 6-26 reply to Tom S' 6-24     memory, age & more
 
Ruth P's 6-26 reply to Doug K's 6-24     Coumadin & weight gain, & to Peg
 
LeeAnn D's 6-26 reply to Jill S' 6-23     Coreg & low BP, update & more
 
Ben B 6-26     long term disability insurance
 
Cloyd P 6-26     EF questions
 
Jon 6-28     update
 
Jack 6-28     Coumadin & weight gain
 
Jackie B 6-28     in right-sided failure with questions
 
Della R's 6-28 reply to John Len's 6-26     keeping on keeping on
 
Jill S' 6-28 reply to LeeAnn D's 6-26     coping
 
Helen O 6-28     update - good news & bad news
 
Jane M 6-28     update, home after surgery
 
Dave D 6-28     intro, questions about dual pacing
 
LeeAnn D's 6-28 reply to Doris' 6-26     congratulations & more
 
Jana B 6-28     question for pre-menopausal women
 
Carolyn B 6-29     Coumadin & weight gain discussion
 
Tom S' 6-29 reply to Jack's 6-28     Coumadin & weight gain discussion
 
Cindy's 6-29 reply to Jana B's 6-28     PMS & CHF in pre-menopausal women
 
Bonnie 6-29     update, husband's accident
 
LeeAnn D's 6-29 reply to Jana B's 6-28     PMS & CHF in pre-menopausal women
 
Henry T's 6-29 reply to Dave D's 6-28     pacing & CHF
 
Phyllis A 6-29     update, pacemaker, prayer request
 
Jon 6-30     update
 
Dee K's 6-30 reply to Bonnie's 6-29     coping, will pray for you
 
Steve Brown 6-30     intro
 
Martha W's 6-30 reply to Jackie B's 6-28     sodium & fluid intake, diuretics
 
Pat D's 6-30 reply to Bonnie's 6-29     coping
 
Cecil 6-30     catching up, food, drugs & weight
 
Danny 6-30     want to chat, need some help due to Webtv & more
 
Brenda H 6-30     SSD questions & more
 
Donna's 6-30 reply to Doris R's 6-26     angina, dizziness & more, advice appreciated
 
Norma 6-30     intro, sudden fatigue questions


Marty, June 16, 1999 - Hi, I haven't posted in a while but I try and read the messages as much as I can. While I'd like to say having all this company is good, I wish our ranks wouldn't be so crowded. Maybe with future advances, they won't be. Anyway, I am currently wearing a holter monitor for evaluation for a possible implanted defibrillator. I would be interested if anyone currently has this device and any information about it they'd like to share. Also, my Prinivil dose has been doubled from 20mg to 40mg daily. The doctor says a recent study indicates a higher ACE Inhibitor is very theraputic. Thanks again to Jon and the little miracle he has helped build here online. Marty. MartinBK@aol.com
 
Jon's Note: See www.heart-help.net/.


Joe D's June 16 reply to Leland Y's June 7, 1999 - Hi Leland, Carbo diets can cause your body to produce excessive cholesterol. I had the same experience a couple of years ago. In an attempt to control my arteriosclerosis, I substituted grains for animal protein. My cholesterol shot way up. When I switched to a high protein diet that included lean meat, fish and eggs, low carb vegetables and some fruits, but no dairy products (saturated fats!), my cholesterol returned to normal. Good luck. Joe. joediamond@joediamond.com


Joe D, June 16, 1999 - Hi, I've got some questions. Many of the medical sites I've accessed do not list beta-blockers as a medication for CHF, yet my cardiologist prescribes them for me. How come? I have normal blood pressure and an EF of about 38%. Since beta-blockers slow the heart rate down, would not that also lower the body's available oxygen supply? Thanks. Joediamond@joediamond.com
 
Jon's Note: Be sure to read the Coreg & Beta-blocker page and this article and this article.


Phyllis A, June 16, 1999 - Hi, I had breast cancer. I am cancer free for what will be 5 years this October. I would like to know if anyone that posts who has cardiomyopathy and CHF has ever been diagnosed with cancer and believes their CHF is due to chemo and radiation treatment that tore their bodies down. I believe it tore my heart muscle down and the radiation did damage to my lungs; I have severe asthma also. I did not have the common causes like viral infection, alcoholism, etc. Please post or e-mail me. Thanks. phylcasurv@msn.com


Bobby F's June 16 reply to Claudia S' June 15, 1999 - Hi Claudia, I read your post concerning sweating. I had the same problem, especially at night. Before being diagnosed with CHF, I would lay in bed at night and sweat and sweat. Finally after seeing the right doctor and getting the right medications, my sweating has stopped unless I'm overdoing it activity-wise and I've had to stop that to keep from getting exhausted or having chest, back and leg pains. I'm taking my meds on time and taking it easy these days. I don't sweat at night anymore. lfwcor@washingtonnc.com


Phyllis A's June 16 reply to Joe D's June 12, 1999 - Hi Joe, Thanks for your post. I went to my doctor yesterday and asked about tingling in extremities and he said to ask my PCP, who I see tomorrow. I believe they just don't have all the answers but I noticed it is not happening as much as it was. Then I realized it was during the time I had potassium and magnesium depletion but will still ask my doctor and let you know. Again, thanks for answeing me. God bess us all. phylcasurv@msn.com


Della R's June 16 reply to Claudia S' June 15, 1999 - Hey Claudia, I read your post about sweating. As far as CHF and sweating is concerned, I personally never experienced that. When I have had profuse sweating, I have been in hypoglycemia. The worst episode happened last winter when I was quite ill, and eventually wound up in the hospital. I awoke from a sound sleep completely soaked with sweat. It was more than a little frightening and I barely made it to the kitchen, where I drank orange juice and for good measure ate crackers with peanut butter. It took longer than usual but finally rallied around. Now I take a sugar reading before I go to bed to make sure it's not already low. Are you diabetic? This could be something to check out. Many CHFers are diabetic as well. Some medications put you into elevated sugar levels and in an attempt to control the sugar, when you do a really good job, falling into hypoglycemia is another pitfall. Good luck and God bless. dellerdo@inw.net


LeeAnn D's June 16 reply to Claudia S' June 15, 1999 - Hi Claudia, Sweating is definitely a symptom of heart failure. Is your doctor a failure specialist? They seem to know a lot more about our condition than cardiologists. Anyway, one of the first questions I was asked when they suspected congestive heart failure was if I sweat a lot or had night sweats. You sweat simply because your heart is working very, very hard. It just can't accomplish its goal of distributing blood because it's damaged and it compensates by working harder to do its job. When I was diagnosed, my resting heart rate was close to 180. My EF was 8. The sweating gradually went away for me. It took awhile, though - months. My resting heart rate is now 60. With all the drugs keeping it low, it's hard to get it up over 100. I forget who, but recently someone posted whose doctor told him being out of breath isn't a symptom! I LOL at that. LeeAnn, DCM, Phoenix. ddavis1057@aol.com


Sherrell G, June 16, 1999 - Hi, I just had a horrible visit to the hospital with severe chest pain and shortness of breath. After the was testing was completed, no definite diagnosis or reason was given for the pain. The cardiologist kept saying, "I don't know, maybe, it's probable, etc,..." I haven't had this kind of pain before so I was scared it was a heart attack. Has anyone had this experience? Sherrell, DCM/CHF for 4½ years. sherrellgay@juno.com


Joe S' June 16 reply to Claudia S' June 15, 1999 - Hi Claudia, I started sweating almost 20 years ago and it got progressively worse until during the last 3 years I had to take 2 towels to bed with me and one on the back of the couch when I sat down. I lost my last job because of excessive sweating. Naturally all the doctors misdiagnosed all my symptoms for that period. My wheezing and gasping for breath was emphasema, my sweating were anxiety attacks and my swollen feet, ankles and stomach were gout. It wasn't until I almost died about a year ago and I couldn't breathe at all while lying down that they finally decided I had CHF. I was very fortunate that a diuretic took care of most of the problem. My angiogram showed no blockage, so again I am fortunate. I am so disgusted with doctors, I am medicating myself with a multiple vitamin, vitamin C, potassium and now magnesium. Unless I eat too much sodium, I feel great, at least I think I feel great. I have had a heart murmer since I was 5 with Scarlet Fever. Maybe I've never known what it's like to feel like healthy people. Oh well, I feel as great as I have in a long time and it's sure better to have CHF then emphasema. Joe Stevenson. JES@StevensonLighting.com


Keith Benton, June 16, 1999 - Hi all, I am looking for a good CHF doctor in the Philadelphia, Pennsylvania area. I live in Lancaster and am having trouble finding a doctor who really understands what needs to be done. Any help will be greatly appreciated. Thanks! Keith Benton. kbenton@ptdprolog.net


Susie, June 16, 1999 - Hi, My name is Susie. I am a 29 year old female with idopathic dilated cardiomyopathy. I was diagnosed with this condition in February of 1999. I also have high blood pressure, diabetes/hypoglycemia (not sure yet) and severe depression and anxiety (suffered from since 1995). I also have a tumor on my adrenal gland on my right kidney. They are doing more tests to see if the tumor needs to be removed. I am very scared. I am divorced with 3 sons, whom I am raising by myself. Any support or suggestions from the group would be greatly appreciated. Thank you so much. Susie. slugger69_ss@yahoo.com


Linda O's June 17 reply to Susie's June 16, 1999 - Hi Susie, You certainly have a plate full. Remember we are all here and in this together. If you get scared or anxious, we will try to help to make you feel a little less alone. Hang in there and take care of those boys, they will certainly be a blessing for you. Twenty-nine seems awfully young but it sounds like you have already been through a lot. This is a great place to get support and to become educated about this dreadful disease. Good luck with the kidney tests. I just had a cysto and IVP and it wasn't nearly as bad as my mind had imagined it. Try not to be scared. That's easier said than done, boy do I know that! Linda O, age 59, EF 24. norvalo@clarinda.heartland.net


Suzie T's June 17reply to Sherrell G's June 16, 1999 - Hi, My doctor told me I can't have another heart attack or stroke, but the symptoms seem the same as when I had my heart attack. He said it is muscle spasms. So last Saturday around noon, they started again and Monday morning I still had them. I took some pain pills which didn't help, yet the nitro knocked the edge off of it, just not enough to sleep. Monday morning he gave me something stronger so I could at least sleep. That did help some, I slept for about an hour and a half. From Thursday night until Tuesday, I slept for about 3 hours total. Yet I ask him how long muscle spasms can last and he said it depends, and ended it at that. I have to see him again today so I'll get an answer, I hope but if I don't feel any better, I don't say much to him or hound him for answers. Susie. staylo26@bellsouth.net


Debbie, June 17, 1999 - Hi, I live in southern California in a suburb of Los Angeles. In a few weeks I am going up into the mountains, about 6,000 feet. I am kind of worried about what I can expect and what to look for and what kind of activies I will be able to do. My EF is, or rather was, 40 last year and I do feel great or rather, a lot better than last year. I am back to work as a hair stylist 4 days a week. After work I am tired but not overly so, unless I have had a very busy day. I did work full time before I was diagnosed. The doctor said if I can't sleep at night lying down then I need to come back down the mountain. Does anyone have any advice? Should I maybe take a couple of oxygen tanks with me? What else do I need to watch for or be careful with? What about sex, will that be too strenuous? Love you all, thanks for all your support! Debbiedo55@aol.com


Bobby F's June 17 reply to Phyllis A's June 16, 1999 - Hi Phyllis, When I first went to the cardiologist in Greenville, North Carolina and was lying there asking him all kinds of questions about CHF, he told me this. I asked him if he had any patients who had gotten back to normal and were not going to need a transplant. He told me he had a lady with CHF that was caused by chemotherapy and basically he said that the chemo was poisoning her body, killing the cancer cells and had caused the CHF. I can't remember if it was one or 2 years after she stopped taking chemo, her EF was almost back to normal and her heart had gotten back to normal size. That stood out in my mind. That was my first cardiologist and I did get a second opinion and am going to another. I hope this helps. Bobby Farish, EF 24. lfwcor@washingtonnc.com


Rosamond S' June 17 reply to Keith B's June 16, 1999 - Dear Mr. Benton, I live in Philadelphia and the city does have some fine cardiologists. The University of Pennsylvania Health System and Hospital is always mentioned as one of the nation's best. My suggestion to you would be to speak to one of the counselors at Penn Health 1-800-789-PENN, and ask for the names of those cardiologists who list CHF in their profile. They also recommend specialists in areas like Pottstown and Flourtown who have full privileges at Penn. Good luck and don't forget, if you are not satisfied at first, get a second opinion. Best wishes. Roz. RWarriston@aol.com


Steve B, June 17, 1999 - Hi, This is my first post as I have just found your site. I was diagnosed 6 weeks ago with CHF and idopathic dilated cardiomyopathy with an EF of 15%. I'm taking a regiment of meds that is typical of what others seem to be taking. I've gone through the emotions I'm sure most of you have gone through. My question is this: I'm part of an HMO (QPOS) network and the health insurance carrier is also the Disability provider. The carrier is trying to get me back to work despite the fact that I'm feeling fatigued virtually all the time. My job consists of air travel 40-60% of the time in an extraordinarily stressfull job. I don't see how I can do it but 2 cardiologists have both suggested I can go back to my job. Does this make sense to any of you? sabarrette@yahoo.com


Jon's June 17 reply to Steve B's June 17, 1999 - Hi Steve, Welcome to Jon's Place. The answer is a short no. Even if your Vo2max is currently good, an EF of 15% will probably prevent you from any work in the short-term and you'll just have to wait and see what benefit you gain from your meds to know what your long-term abilities are. If possible, see a CHF specialist who is not affiliated with any of your current health care providers for an unbiased opinion. Jon.


Linda G, June 18, 1999 - Hi, Back in March I was diagnosed with CHF with an EF of 40. I was put on Lasix, captopril and lopressor. I had gained a lot of weight really fast and was very swollen. I felt really bad. All the regular tests were run and they found a problem with my heart muscle and did a heart cath. No blockage was found. They told me I had CHF and put me on meds. They did another echo 2 weeks ago and my EF was in the 50s. I was not given an exact number. Now he is telling me that I don't have CHF, and that I must have had a virus during the first echo they did. Yesterday took me off Lasix and I am now swelling again. Next week I am having a lung test done because my breathing is still bad, although it has improved some. The doctor said he plans to take me off the heart meds also but he has not done that yet. Why, if I don't have a heart problem would he leave me on these meds? This is Baylor Heart Clinic. Please give me some feedback on this, as I am not sure if I should get a second opinion. Has this happened to anyone else? My prayers are with all of you. Linda_Gibbens@yahoo.com


Margie F, June 18, 1999 - Hi everyone, It's been a little while since I posted. As the docs say, everything is stable. My doctor said because of all the new heart medicines, today's outlook for CHF patients isn't so bleak. That's good to hear. I'm finally up to the recommended dose for Coreg and so far, so good. Also, I went on a vacation to Florida in May with my daughter and new son-in-law. I made out pretty good. While at the parks, I rented a motorized vehicle and that was the saver. The long ride home from Florida to Delaware was the only trouble spot. Yesterday I applied for SS Disability. Boy, was I nervous. Everyone wish me luck. Margie F, EF 20, AICD, HCM, age 53. MFisher238@aol.com


Phyllis A's June 18 reply to Bobby F's June 17, 1999 - Hello Bobby and all, Thanks for your post about cancer treatment and CHF. Cancer treatments, that is, chemo and radiation which I had, does destroy the good cells along with the bad ones. That is why there are side effects so I know that it did damage my heart and my lungs. I have severe asthma too so some days I just can't breathe. I have a double bubble. My oncologist will not admit these are side effects from treatment. She says I wasn't given a high enough dose to do this but I told her I disagree. I had 6 months of chemo and 7 weeks of radiation 5 days a week. It doesn't take a rocket scientist to figure this out. Thanks again. Oh by the way, my symptoms started during chemo treatment and were worse the following year. phylcasurv@msn.com


Sammie, June 18, 1999 - Hi, Here is a little hint which has helped. Even before being diagnosed with CHF, I noticed problems breathing at night. I keep a bottle of eucalyptus oil by my bed. A few drops on a hankie or just inhaled seems to clear up the problem without using prescription meds. Sammie. swool@mindsring.com


Pat D's June 18 reply to Susie's June 16, 1999 - Hi Susie, You have every reason to be scared, and you're doing the right thing for yourself coming to this bulletin board. Please don't give up hope or give in to despair. There are many people here who were given a few months to live and are still alive several years later. I had a friend who developed cardiomyopathy at age 25 and was given a few months. She lived for another 31 years and enjoyed her life! Educate yourself about all your illnesses and be an active participant in your health care. I also have multiple health problems and some days I get pretty discouraged, so I understand how you're feeling. Find a cardiologist who specializes in heart failure. There are drugs available now that are lengthening the lives of us sickies (inserting a little humor here) and not only prolong our lives but improve the quality as well. If you would like to converse more privately or at greater length, my e-mail address is included. Best of luck to you and stay here with us. We are a caring, compassionate bunch of people, so you're in the right place. Pat. patj98@yahoo.com


Hope M, June 18, 1999 - Hi, In April I sent out a lot of surveys to people who have taken or are taking Coreg (I didn't ask Jon first, though - oops!) and I received many replies. I have put them all together, without names, just identified by numbers. If anyone would like a copy, please e-mail me. There are 30 responses in all. hlmcneil@earthlink.net


Renee M's June 18 reply to Phyllis A's June 16, 1999 - Hi Phyllis, I worked in a nuclear medicine department for over 20 years. We frequently did MUGA scans prior to and during chemotherapy treatments. We also did the follow-ups after chemo. Many types of chemotherapy can affect the heart. We often saw ejection fractions deteriorate with chemo and many times the doctor would stop the chemo. I don't know if the chemo you got would have caused your heart problem, but it's a good possibility. I think all chemo affects our bodies much more than doctors even know about. I hope this helps. Good luck. Renee M. Auntonay@aol.com


Renee M's June 18 reply to Claudia's June 15, 1999 - Hi Claudia, I don't know how old you are but I experienced a similar problem with the sweating, especially the head, neck and chest area. I was a person who very rarely sweated, so this was a difficult thing to deal with. It did not go away. About the same time I was diagnosed with DCM, I also went through menopause but did not know it since I'd had a hysterectomy. All the hormone imbalance really aggravated my heart condition. If you are in the age group for menopause, this could be the cause. The sweating will stop or tone down some after menopause. Now I still sweat more than I used to but I don't have those profuse bouts anymore. Renee M. auntonay@aol.com


Renee M, June 18, 1999 - Hi all, I hope everyone is good. I need help! I am in the middle of my SSD review. I received a letter from SS saying I had to go see this physician for a physical. I know this doctor from working with him and everyone at this site, even the new people, know more about DCM and CHF than he does. I am not exaggerating. My doctor does not want me to go to him either but SS will not budge. I know I have to keep this appointment or SS will give me grief but I'm worried about it. He's not even a cardiologist. SS tells me that it's just routine and you have to have seen a doctor in the last 3 months, yet they won't let me see my own family physician. Has anyone had to go to a doctor like this for SSD? If so, how did it go? How much influence will his report have on my outcome? I think SS is just looking for a way to take away my SSD because my EF is better. If anyone has any information that might help, please post or e-mail me. I'm stressed out over this. Thanks. Renee M. auntonay@aol.com


Tom S' June 18 reply to Debbie's June 17, 1999 - Hi, Sex is only as strenuous as you or your partner make it.What a way to go! biggerbhoy@hotmail.com


Sherrell G's June 18 reply to Suzie T's June 17, 1999 - Hi Suzie, Thanks for the info. My cardiologist said it could be a cardiac spasm or pain related to myopathy. He could not or would not be more specific. I do not like spending 3 days in the hospital and not really know what was happening. Although the EKG and cardiac enzymes were okay, my echo around 30%, and my PT high (so I get to take less Coumadin), that still does not tell me what caused or causes the pain. I saw my primary care doctor yesterday and he is going to study up on myopathies and also call my cardiologist. I see the cardio doc in 3 weeks. sherrellgay@juno.com


Dee K, June 18, 1999 - Hi, Thanks so much for all the help I got from my last post. Now could I get some help with finding a specialist in CHF for the West Texas area? I called the AHA and the lady on the line said "what is CHF?" So I'm still looking. Dee. DK1992@aol.com


Ben B's June 19 reply to Linda G's June 18, 1999 - Hi, An echo is really best for evaluating left ventricular function. Although most people with right side heart failure also have left side heart failure, I seem to recall someone posting a while back who had only right ventricular dysfunction. They said their echos were perfect, but they had all the CHF symptoms, especially severe edema which is associated with right side heart failure. I have never had any edema (knock on wood), even with an EF of 10-15. Maybe the person who posted this right side heart failure stuff will contact you. bdbrinkman@juno.com


Tom S' June 19 reply to Renee M's June 18, 1999 - Hi, An SSD review can be frightening, particularly if you are heavily dependent on the paltry sums they dispense. I recently went through the review process and was continued on SSD until the next review, which by my reckoning should be in about 2½ years. My EF went from a low of 15 when I first qualified for SSD, to a current level of around 35 to 40. I was never required to visit any kind of doctor during my review process and only had to sign a stack of releases so they could obtain information from my cardio-docs. I don't believe they ever bothered to get any records from my doctors and most likely relied on my handwritten self evaluation. In that evaluation the words "terminal CHF" and "dizziness, sexual dysfunction, pain in the extremities, and shortness of breath" all appeared prominently.
     Having read many of the posts on this forum concerning SSD, it seems that there is absolutely no method to their madness and what applies in one state or region of the country does not apply in another. I have heard of folks far worse off than I am supposed to be having been denied SSD, yet I have been on it for nearly 4 years. I guess you just have to go with the flow and since they make the rules and pass out the "gold", you need to abide by any and all requests they make concerning evaluations, etc. Good luck. I know I bit my nails to the quick worrying about it with a good outcome. biggerbhoy@hotmail.com


Robin W, June 19, 1999 - Hi all, I haven't checked in for awhile and just thought I'd give you all an update. Basically, nothing is going on. I am still just sitting here, waiting. There are now 3 of us on the floor. It is turning into a real transplant unit now! I really didn't think I'd be here waiting this long. Nobody else did either. It hasn't been a bad wait at all. Everyone here is so good, I can not say enough good things about them all. I spend my days putting all my pictures into scrapbooks and walking laps in the halls. I wish I would have gotten a pedometer in the beginning. I'm positive I've racked up a million miles! Everyone on this floor knows me - patients and staff alike. They see me wandering every morning and evening. Well, that's all for now. I hope everyone is well. I am going to catch up reading posts now. I'm at least a week behind, maybe more. Take care, everyone. Robin W, age 31, currently in hospital awaiting transplant. jwilson@nb.com


Bill D's June 19 reply to Linda G's June 18, 1999 - Hi Linda,You're going to have to pin him down and make him answer the questions you just asked us. Either that, or I would get a second opinion, Baylor or not! Have you cut back on salt? Do you drink a lot of liquids? Are they weaning you off the other heart meds? Cutting back on the doses? Sure is puzzling. Bill. billdog@gate.net


Claudia S, June 19, 1999 - Hi, To everyone who e-mailed me or left messages about sweating, thank you! It is so nice to know I am not crazy. I did see that cardiologist again, and asked him for the second time if sweating was a symptom of CHF. He once again said no. My husband and I then asked for a referral to a CHF specialist for a second opinion. I will be seeing that specialist in a week, and have a feeling I could be changing doctors. I have been diagnosed for about 5 weeks and have had 3 cardiologists so far. I hope this is not too unusual. Today my pharmacist seemed concerned about my taking Levoxyl 0.2 for thyroid, with 5mg Coumadin. Has anyone had any problems with these 2 medicines together? I am wondering if hair loss is at all a part of heart trouble? I guess it could just be stress and I am just wondering. Again, thanks to everyone who took the time to answer my questions. I hope everyone is having some good days. Claudia, EF 15%. CMSchm@aol.com


Phyllis A's June 19 reply to Renee M's June 18, 1999 - Hello Renee and all, Thanks for your post. It makes me feel better to know I'm not crazy. My oncologist will not admit that my CHF is from the cancer treatments. My symptoms started during treatment. I do not remember getting a MUGA before or during chemo. I received 5FU, Adriamycin (they call this the red death) and Cytoxan. They tell you about the mouth sores, hair loss and skin darkning but not about possible deadly side effects. Thanks again and may God bless you. phylcasurv@msn.com


Jack's June 19 reply to Debbie's June 17, 1999 - Hey Debbie, If you work in a salon you shouldn't have any problem doing anything at any elevation. You would be much better off wearing oxygen tanks while you are working and commuting to and from work. Didn't your doc explain to you that there is no breathable air in a salon? I hear the federal govenrment is going to start a campaign to stop people from going into altered states by inhaling as the walk past salons. <g> Jack. maddjak@hotmail.com


Jon's June 19 reply to Linda G's June 18, 1999 - Hi Linda, About the only thing I can say for sure is that you definitely need to get a second opinion. This really is your life we're discussing, not some abstract theory of health care so please don't take chances - get another doctor's opinion! Jon.


Dee K's June 20 reply to Renee M's June 18, 1999 - Hi Renee, When I applied for SSD, I had to see their doctors also. At the time I was so new at all this I didn't know enough to be afraid. So I just went in, answered their questions and let them take the EKG and breathing measurment and went home thinking, "Oh well, more time wasted." Three weeks later I got my letter saying that I would be getting 100%. Everyone I knew who had applied had to fight to get it so say a prayer, take a deep breath and just do it. The doctor I had to see was a GP, no specialties. Good Luck. Sincerely, Dee K. DK1992@aol.com


Debbie M, June 20, 1999 - Hi, I do not know if I have CHF or not, but I have been doing a lot of reading and it sounds like I do. I know that I have a heart block and tachycardia. I have problems with generalized edema. I can gain literally 10 pounds overnight and along with the edema comes problems with my arthritis acting up and trouble breathing. I was referred to a cardiologist when I had to take a routine ECG before a surgery. He is the one who let me know I had a Left Bundle Branch Block as well as tachycardia. He is taking tests all the time. I had an echocardiogram done and an exercise stress test and apparently they do not match up so I am on the waiting list for another echo. The last echo showed that one wall of my heart is not working. I have been put on no medication because I have no actual diagnosis yet. When I approach the clinic doctors about a more intensive diuretic, they simply say I am too young too have real edema problems. Has anybody else has such problems just getting a diagnosis? Debbie M. debbie-mcintyre@bc.sympatico.ca


Jon's June 20 reply to Debbie M's June 20, 1999 - Hi Debbie, I am not trying to use scare tactics but I very strongly suggest that you get another doctor - one completely unaffiliated with your current clinic - to check over your heart. When a doctor(s) ignores possibilities based on his preconceptions of what a young person's health "should" be rather than on what his own examinations tell him it "is", you are in grave danger of being treated improperly. I was misdiagnosed because I was "too young" to have heart failure and it almost killed me. So, I'll say this again: This is your life we're discussing, not some theoretical healthcare scenario - don't take chances - get another opinion soon! Jon.


Joe S' June 20 reply to Tom S' June 19, 1999 - Hi, Every time I hear people complain about SSD and SSI, I praise the Lord for my situation. My CHF doesn't seem to be as bad as most of you but I received SSD and State Disability right away, well it was 6 months exactly after I filed for it. It is enough to live on if I keep my budget low. The only thing I can think of is that the letter my doctor wrote stated that I was 100% disabled and the condition was permanent, and it is. I also called them and harassed everyone involved every chance I got. I was a big pest. I really harassed the doctor over the letter, even went in several times a week to make sure he was writing it right. Good luck to all. Joe S. JES@StevensLighting.com


Carolyn H's June 20 reply to Joy R's June 13, 1999 - Hi Joy (or anyone else on dobutamine IV therapy), I was diagnosed with CHF in December of 1998. After a 4 day stay in the hospital I felt great. I had lots of energy and felt the best I had in years. However in the middle of March of 1999, I began to experience extreme tiredness again. After being seen by my family doctor, I called my cardiologist and he suggested the dobutamine therapy. I started on 4/23/99 and have been going 3 times a week. Please send me your experiences with dobutamine therapy. You can e-mail me at crhughes@greenepa.net. I would appreciate any of your advice and experiences. Carolyn H.


Phyllis, June 21, 1999 - Hi, I want to thank everyone that sent me an e-mail concerning my June 10 question. I don't wish anything on anybody, but I'm glad to hear from people that have the same problems I have. It sure helps to make me feel better. Phyllis. pwatjen@vincennes.net


Renee M, June 21, 1999 - Hi to everyone, Thanks to all of you who replied to my SSD review concerns. It's great to have people like you for the benefit of your experiences and for your support. It's difficult to talk to friends and sometimes, even family, because they don't really understand how you feel. Everyone here knows, because they've experienced those same feelings. I thank God everyday for all of you. I will let you know how things go. Renee M. auntonay@aol.com


Jon, June 21, 1999 - Hi everyone, Well, for the first time in awhile, I woke up feeling pretty good today. Of course, that means I have to tackle the other bathroom's repairs later today but I'm enjoying it while I can. I've been too tired to talk much at all lately but I feel wordy today. Everyone who knows me may now cringe. <g> I receive a steady stream of e-mail from readers wondering why most people here seem to genuinely care about the other people here, while most other forums such as Usenet seem to lack real concern or much real help. My hat is off to all of you who make this happen right here at the most homespun of message boards. Pat yourselves on the back. You deserve it.
     Meandering right along, medical therapy has really improved in the 3+ years I've been creating and maintaining this web site. There are more ways to stave off CHF (symptoms) and more ways to improve underlying conditions. For that matter, the underlying conditions are better understood and more doctors are recognizing CHF when they see it, which doesn't always happen, as many of us here know.
     Still, while doctors - and I consider my own heart doc to be one of the best - can help the physical pain, discomfort and fatigue to some extent, once you become unable to hold a job, why get out of bed? Why shower, brush your teeth, dress, eat breakfast and stagger to the pill box to gulp all those pills? It's a huge effort in itself, this getting ready process, and what do you do then and why bother? The way I see it, medicine only gets us part of the way there, wherever there may be for each of us.
     I need motivation more than energy. Some days, just downloading my e-mail seems too much to do. If the motivation isn't here, I'm not here. One can go on and on about doing good or helping others and having a good heart as reasons for doing this site but that isn't true. I was and sometimes still am the most self-centered, least helpful person I know. That's the old man though, as the Bible says. My old man is dead but I haven't quite buried him yet.
     I'm working on it. My motivation has a name and that name is Jesus Christ. To secular readers, if you don't like this sort of thing included on a heart failure site, deal with it. This site and its information wouldn't be here without that name and the man who owns it, so don't be too quick to try and separate the two.
     Anyway, if you are taking a lot of meds and your symptoms aren't really that bad (if you're still walking around the house) but you're having a lot of trouble facing the day, consider your spiritual health. The answers are hanging there in plain sight but first you have to figure out the questions.
     Jesus took me with an EF of 13 and a bad attitude, and built this site. What could He do with you? Probably a lot more than you think. Somebody from geocities told me this is one of their most popular sites. Big deal (I told them to leave me alone <g>). What counts is helping people who need help. That's what you do. I thank you all and ask that you keep helping each other; if not here, somewhere. May the e-mails flow and the prayers never stop.
     If you think you need info straight from me and I don't reply to your post, feel free to e-mail me or re-post, directing it to me. I am trying to do too much stuff at once, fix my house and maintain this site at the same time so I miss some things I shouldn't miss. It isn't intentional, just that ol' CHF brain-fog! :-) Jon.


Renee M's June 21 reply to Phyllis A's June 19, 1999 - Hi Phyllis, The chemo drug we did the MUGA scans for most of the time was Adriamycin. You definitely are not crazy, especially since the heart problems started during the chemo. Of course, you'll probably never convince your doctor of this. It's getting so these days that you have to check out the facts for yourself, instead of relying on the doctor to give them to you. I hope this makes you feel better. Renee M. auntonay@aol.com


Jane M's June 21 reply to Claudia S' June 19, 1999 - Greetings, To Bobby and Phyllis, according to my cardiologist and internist (and Dr. Marc Silver, who wrote Success With Heart Failure), DCM and CHF which is induced by chemo and radiation is not reversible. I'm doing very well right now and my cardiologist said I could go many years feeling this well but I think Robin W knows all too well, it doesn't last forever. Supposedly the heart damage from Adriamycin is dose related but it isn't in my case. My oncologist didn't want to admit at first that my heart damage was chemo related but he finally conceded that it most likely was. So Phyllis, your oncologist probably is worried about a lawsuit. I did have a MUGA before chemo and my heart was fine. I did have to sign a consent form stating that the risks had been explained to me. They tell you that there is a very tiny chance that Adriamycin will cause heart damage but it is such a small chance that it's hardly worth worrying about. Right.
     To Claudia, I take 0.112mg Synthroid a day with 7.5mg of Coumadin and I've never had a problem. Is Levoxyl the generic form of Synthroid? Maybe that's what the pharmacist was concerned about. Jane M. jmerritt@iserv.net


Tom S' June 21 reply to Jon's June 21, 1999 - Hi, The only disability in life is a bad attitude. biggerbhoy@hotmail.com


Helen O's June 21 reply to Phyllis A's June 16, 1999 - Hi, I was diagnosed with synovial sarcoma when I was 12. At the time, it was very rare for someone my age to have that type of cancer. When I was first told of my CHF status last October, the first thing I thought of was the adriamycin from chemo. My cardiologist didn't even know that could happen after more than 7 or 8 years from treatment, let alone 1 1/2 years. After he did research of his own and found out that there are chemo related problems more than 20 years after the fact, we discussed my options. I had a cardic biopsy done while I was in the hospital. The results showed that while the chemo had affected the heart muscle, they could find no evidence that it had caused the dilated cardiomyopathy and CHF. So all I can say is that the offical word seems to be that no one is entirely sure. Good luck in your search for an answer. woohoo@imap4.asu.edu


Helen O's June 21 reply to Sherrell G's June 16, 1999 - Hey, The only time I have had pain like that was in February. I went to the ER with sharp stabbing pain on my left side, with the pain leaving my left side numb. After spending all day there, the only answer I was given was, "A typical chest pain." My cardiologist confirmed this 2 days later in his office. I still have sharp pains but I keep getting the same non-answer. Good luck. woohoo@imap4.asu.edu


Kim S, June 21, 1999 - Hi everyone! I know I'm always a little behind on the topics. I also experience tingling of my extremities. I don't experience this as much as I did when my EF was lower. Of course my doctor didn't know why this was happening. I find that it happens when I retain too much fluid. When I wake up in the morning I can usually guage how much I'll weigh by how much tingling and weakness I have in my arms and legs. My doctor once told me that he has no idea what any kind of fluid retention "feels like." I told him he'd better listen to me closely then because I'm going to teach him a few things. Of course, he's a very easy going guy. I just finished appealing the Social Security denial. We'll see what happens. Take care, everyone. Kim Sebastian, EF 40%, age 22. lalakimmie@aol.com


Linda G, June 21, 1999 - Hi, Thank you all very much for your comments on my post. I have decided to get a second opinion and I will let you know how it all turns out. I have been very short of breath with really bad edema. Since he took me off Lasix, I am very swollen and I am going to call him tomorrow. It will take time to see another doctor since I have to first get in to see my primary care doc. I have read Dr. Marc Silver's book also, "The New Edition, Success With Heart Failure", where he speaks highly of Jon and this site in his book. I thought that was great. Also, I do try to limit my fluid and salt. I only first learned that from this site. The doc told me that, only when I ask, he never puts anyone on a low sodium diet, it's too difficult. Rather, he tells them not to salt food at the table. I've never done that anyway. God bless all. Linda. Linda_Gibbens@yahoo.com


Phyllis A's June 21 reply to Jane M's June 21, 1999 - Dear Jane M and Renee M, You are truly angels. I feel much better since your post. CHF and chemo and radiation treatment, the docs do not have to admit it for I already know. Oh by the way, can anyone tell me about a supplement I could take for fluid retention? I have gained so much weight I'm now uncomfortable. My doc stopped the zaroxolyn and I did lose about fifteen lbs, but gained it all back from fluid retention. God bless us all. phylcasurv@msn.com


Luc D's June 22 reply to Steve B's June 17, 1999 - Dear Steve, My name is Luc and I'am a Belgian heart patient who has hypertrophic cardiomyopathy. When I was diagnosed in December of 1996 I had an EF of about 26% and they said that I could not work anymore. They said it was too dangerous and could cause my death. So what they say to you go back to work is crazy! You know and feel very good that you cannot do this job or it might kill you. I'ts very good you got here with us other heart patients. I have been on this site for nearly 3 years now and I am so happy that I have found very good friends here! I am still at home and I don't work. I try to help all I can with some home cleaning, taking care of our children, etc. If you would like to talk to us or me, just do it. You are not alone with this disease. We all have some bad days and we all need somebody to talk or we will go crazy. If you like, you can look up our bios and maybe you can make your own bio. I would like to say Hi to all my friends here. Take care, all of you! All the best from your Belgian friend Luc. Luc.Deseins@ping.be


Betty S, June 22, 1999 - Hi, I have been slow in reading the posts but I wanted to put in my 2¢ on the chemo topic. My son (who is now 26 years old) was treated for Hodgkins' disease when he was 17. The chemo included Adrimycin and we were told that they would limit the dose because of heart problems that stem from the chemo, specifically the Adrimycin. I also talked to my niece who is a pharmacist whose specialty is bone marrow transplants and she said the same thing. They try to keep the dose under a specific amount so it has less of a chance to affect the heart. Best wishes to everyone and God bless! eswerda@ucsd.edu


Gatha E, June 22, 1999 - Hi everyone, I have finally gotten my big check from SSD and expect the monthly checks on the 4th Wednesday of every month. My lawyer was so surprised, since it has only been 5 weeks since I went before the judge. I am the only person that she has approved for my lawyer. I feel very blessed and also the fact that she went back to the day of my heart attack on January 12, 1998. I guess I did okay and just didn't have that much sense to be terrified of her. I hope that all of you people out there working on your SSD have really good luck with the process. Also, in my letter they stated that I would not be reviewed for 5-7 years. How come some of you say 3 years? I don't want to have to start worrying about that so soon! jell855859@aol.com
 
Jon's Note: See this post.


Joe S' June 22 reply to Jon's June 21, 1999 - Hi Jon, I am now at the point where I believe this condition is a blessing in disguise. I look back on all the circumstances leading up to it, such as being able to work at a high paying job before I got diagnosed with CHF, resulting in better Disability checks. I am on a lot of physical restrictions, but I've been on them all my life in one way or another so it's nothing new. I have a friend who, when his heart went bad, almost committed suicide because he had to give up playing sports. Christ directed me into other areas and I never missed it. Tom S is 100% right about the only disability being a bad attitude. If we turn to Christ and accept the peace of God which passeth all understanding (Philippians 4:7) then everything changes for the better and even the worst situations become great. Everyone, read this passage and the verses above and below it, follow the advice given here, and all things will work together for good. Joe S. JES@StevensonLighting.com


Doris R, June 22, 1999 - Hi, This is kind of silly but here goes: Before and certainly after I was diagnosed with DCM/CHF, I was unable to sleep on my left side. I got the most restful night's sleep lying on my right side. However lately, the last 2 weeks or so, I have been able to sleep on my left; not the entire night, mind you but still I awake to discover I have been asleep on my left. Sometimes I awake and very consciously decide to switch my sleeping position to the left. As a positive thought this is an answer to my prayers. It is a measure of recovery. I pray for and expect total recovery. I'll take it in degrees. Thank you friends for letting me express myself. Love, Doris. RoughGoing@aol.com


Patrick, June 22, 1999 - Hi, I have a question to anyone about their reaction to Coreg. I was placed on Coreg (dosages increased every 2 weeks) and once I reached 12.5mg twice a day I began experiencing fatigue, weight loss and diarrhea. I am 44 years old and have an EF of 21% and have had cardiomyopathy since 1991. I am not taking Coreg now but would like to try and go back on it. Is this a common side effect? How long does it take for your system to adjust to this drug? My doctors want me to be taking 25mg twice a day. Thanks for any information you might be able to supply. pcannon@marquette-hs.org


Maggie's June 23 reply to Patrick's June 22, 1999 - Hi Patrick, I have had the same symptoms you described on the buildup of Coreg. I started Coreg on March 15th with the dose to be increased every 2 weeks. I am still on 12.5mg twice a day and will go in Thursday to be increased to 25mg. I have experienced fatigue, diarrhea and decreased appetite, plus some swelling and generally feeling lousy. This week has been better. Both my internist and cardiologist seem to feel that staying on the medication is worth it. Good luck if you try it again. Maggie. marjac@pro-ns.net


Roger H's June 23 reply to Patrick's June 22, 1999 - Hi Patrick, I started Coreg last December. I was started at half a 3.25mg pill twice a day and then after a week the doctor doubled it. They kept doubling it every week except when it went to 25mg twice a day, he had me wait 2 weeks. I was one of the lucky ones. My heart rate lowered slowly and oddly enough, my blood pressure went up, not down as they expected. I never had any side effects other than fatigue but how do you blame Coreg for it when you already have it to start with? After 6 months, my EF went from 20% to 40% and I am now starting to feel a bit better. I still have my bad days and good days but the fatigue is not as bad. I think it is well worth the side effects you may encounter in the beginning but after your body adjusts it is much easier. I guess what I am saying is give it your best shot before you give up an extension of your life. Roger, DCM/CHF, EF 40%. heeley.fam@osg.net


Betty L, June 23, 1999 - Hi, In March of 1998 I had a radio frequency ablation performed for atrial fibrillation and flutter. It worked very well until May 8, 1999. Since then I have been in and out of arrhythmia. Of course, it has been perfect normal sinus rhythm when I go to the doctor so I will begin wearing an event monitor this week. Have any of you experienced a return of a-fib or flutter following an ablation? If so, what did you do? More surgery? More medication? Thanks for your help. BJLee123@aol.com


Kim S' June 23 reply to Patrick's June 22, 1999 - Hi Patrick, When I started Coreg in September, my dosage was increased every 2 weeks. It always took about 3 terrible days to adjust to it. Once I got up to 25mg twice a day I noticed that the side effects weren't going away. I stayed on that dose for 6 weeks until I could no longer stand it. My cardiologist has put me on 12.5mg twice a day and I tolerate that dosage well. I tried one other time to go up to 25mg twice a day and once again could not tolerate it. Just remember that half the dose is better than none at all. Thanks for the passage, Joe. I never tried to understand because I knew that I would never find an answer. Don't try to understand, just trust. lalakimmie@aol.com
 
Jon's Note: I always try to understand. I just don't manage it all that often. <G>


Renee M's June 23 reply to Jon's June 21, 1999 - Hi Jon, As I read your post of 6-21, I had a few thoughts. Thank you for reminding us that we're doing something good here and we care about each other. On those bad days that we all have, when you can hardly get out of bed, it's hard to feel useful or motivated. At this site, we're sharing all the knowledge we've gained with someone else who needs it. That makes me feel motivated. For 5 years, I have been trying to find that motivation to keep on doing something (other than take pills!). I truly believe God had a purpose in this happening to us. We don't always know what that purpose is, and just about the time we find it, it changes. I have thought I found the answer to why God let this happen to me about 100 times already and I'm still discovering new reasons all the time. Most of these reasons are not earth shattering; they're just little things I do for others, like just saying hi to someone. It may not seem like much, but the satisfaction I get from seeing someone else have a moment of joy, peace, or attention keeps me motivated to do something every day. These things may be so small that no one in the world will notice, but they're very valuable to the people you do them for.
    I think we all have God-given talents that we're not using to the fullest and our heart problems may be His way of showing us how He wants us to use those talents. My life is very different now. I focus on what's important and not the small stuff. I'm still pretty selfish when it comes to my jewelry but other than that, I'm a much more understanding person than I've ever been in my life. I pray daily for that strength to keep motivated and that's the best any of us can do. Thanks again for putting things in perspective. Renee M. auntonay@aol.com


Doris R's June 23 reply to Patrick's June 22, 1999 - Hello Patrick, I was diagnosed with DCM/CHF August of 1998. I am 47 and I have an EF of 10%. I have been on 25mg Coreg twice daily for 6 months now. I believe my EF has improved. I will learn exactly how much on Thursday the 24th at my doc appointment. It took me a couple of months or so to adjust to the Coreg. It made me sick to my stomach and caused severe chest pain unless I took it with a full meal. Taking it with a slice of bread or crackers didn't help at all. The pain was so bad I thought if I were a gun owner, I would have blown my brains out just to stop the pain. I also felt lost and out of sorts, totally unlike myself. It was scary. I was afraid I would attempt to do something totally out of character for me such as run screaming naked through the mall, or harm my toddler. I mean I felt crazy. My doc pleaded with me to fight those feeling and to stay on the medication as long as I could, which I did. Now I feel no ill effects. However, I continue to take Coreg with a full meal. The pain was too great for me to chance experiencing that again. That aside, I am able to tolerate it.
     If you can stand it, try it again. I hear wonderful things about Coreg. It has been known stop the damage done by cardiomyopathy and in some cases reverse some of the damage done. I asked my docs but there is no particular profile of who will or will not respond to Coreg but it's worth a try. Not too long ago I believe I read a post here by a gentleman who experienced recovery of all his CHF symptoms after 18 months of Coreg. He also said he was asked to continue on his cardio medicines by his physicians since he once suffered CHF and they didn't want it to recur. Nevertheless, he was pronouced symptom free. I said all that to say that if you can stand it, Patrick, start up the Coreg again. You may be one of the ones who responds to it favorably. After the side effects pass, that is. I shall pray for you and I am sure others here will pray for us as well. There is a lot of love here and it is a support and comfort. Love, Doris. RoughGoing@AOL.COM


Charlotte's June 23 reply to Susie's June 16, 1999 - Hi Susie, I can only offer you support but anytime, just contact me. I have had 3 heart attacks and have survived. All 4 heart valves are down the spout. My kidney is blocked and failing fast. I'm a diabetic, oh and lots more but believe me, no matter how bad the problem looks, there is always someone who can lead you to full health. God bless, Charlotte. fredwin@telstra.easymail.com.au


Bobby F, June 23, 1999 - lfwcor@washingtonnc.com - The Present
 
Don't undermine your worth by comparing yourself with others. It is because we are different that each of us is special.
Don't set your goals by what other people deem important. Only you know what is best for you.
Don't take for granted the things closest to your heart. Cling to them as you would your life, for without them, life is meaningless.
Don't let your life slip through your fingers by living in the past or for the future. By living your life one day at a time, you live all the days of your life.
Don't give up when you still have something to give. Nothing is really over until the moment you stop trying.
Don't be afraid to admit that you are less than perfect. It is this fragile thread that binds us to each other.
Don't be afraid to encounter risks. It is by taking chances that we learn how to be brave.
Don't shut love out of your life by saying it's impossible to find. The quickest way to receive love is to give; the fastest way to lose love is to hold it too tightly; and the best way to keep love is to give it wings.
Don't run through life so fast that you forget not only where you've been but also where you are going.
Don't forget that a person's greatest emotional need is to feel appreciated.
Don't be afraid to learn. Knowledge is weightless, a treasure you can always carry easily.
Don't use time or words carelessly. Neither can be retrieved.
Life is not a race, but a journey to be savored each step of the way.
Yesterday is history, tomorrow is a mystery and today is a gift: that's why we call it the present.


Tom S, June 23, 1999 - Hi, An interesting note to pass along to folks who study drug side effects. I am at a loss to explain sudden weight loss since stopping Coumadin (10mg daily). After consultation with my cardio doc, I stopped taking Coumadin (warfarin) about 3 weeks ago and since then have had a gradual weight loss. When I started Coumadin over 3 years ago, I began an upward and unexplainable weight gain that started at about 216 lbs and spiraled upwards to 296 at the top end of the scale. There has been no marked change in diet or lifestyle since Coumadin cessation and my weight loss has mimicked the weight gain in the loss of about 5 pounds a week from 288 down to about 274. Interesting result? biggerbhoy@hotmail.com


Janet's June 23 reply to Patrick's June 22, 1999 - Hi, I am 52 and was diagnosed with cardiomyopathy last year (1998) and was initially told I needed a heart transplant. I then went to a specialist at St. Luke's in Kansas City who agreed with the diagnosis but not the treatment. She said she had been having success with Coreg so I started on the smallest dose in June. I meanwhile had to have a kidney removed in August (still don't know the exact reason) and it slowed things down a bit. The goal was to be 25mg. The doctor has stopped increasing the dose at 18mg, which I've been on for several months. I started out with an EF of 20%. I just had an echo last month and it had increased to 53%! I guess my point is that even if you can go back on it at smaller than hoped for dosages, it can still work and perhaps the side effects won't be so severe.
     In my case, I feel that it causes stomach upset, and I'm still fatigued but I don't know if I can blame the Coreg, the other meds, the illness itself, attitude or what. I still think it's worth a shot. It's the best med for this disease that has come along in many years. I hope this helps and hope I didn't confuse more than help. I've left out details of my "journey" from last summer; I didn't want to put you to sleep but will be glad to "talk" if it will help. I only know of 2 other people personally on Coreg. One has tolerated it pretty well, the other person says the worst side effect for her is dizziness. I hope this helps and that you'll be able to try Coreg again. Janet. jsmith@services.state.mo.us


Cathy, June 23, 1999 - Hi Jon, I have to let everyone know that I am doing great and that there is hope for us. With prayer and good meds and diet, I have come from a low EF in March of 18% to a high of 52%. I am more than happy. I find this hard to believe but it is happening. In March I went to see a heart transplant team specialist and now I am home feeling very good. It has to be prayers, because the doctors do not know what is happening. I still have angina but that is something I can live with. It was the EF that sure was hard when it got below 20. I am doing things I have not done in1½ years but am still trying not to overdo it. The angina keeps me under wraps when I try to overdo things. It is so good to feel this way. I cannot question it, I can only accept it and thank all those who sent prayers. Thank you. I have enjoyed this site and have gained great amounts of knowledge from everyone. God sent us Jon and we must all remember him and his family in our prayers. He has helped us realize we are not alone in our illness. I am so grateful to have this site and have met so many people to help me understand CHF. Knowledge is a great beginning but do not forget God. It all works together to make a complete picture. Without God, you would be like a puzzle missing the biggest part. I will be in touch and pray daily for progress in CHF meds and treatments. Thinking positive makes a big difference. Let me hear from you. Take care and take one day at a time or else it becomes too much. I have many e-mails to answer and will in time. I just wanted all to know I am well, very well. Thanks for being there. Cathy. cpalmer@megalink.net


Tom S' June 23 reply to Gatha E's June 22, 1999 - Hi, If you expect any constancy from the Social Security Administration on SSD, I think you probably should expect personal delivery of your SSD checks via the tooth fairy. <g> There is a review process and it varies according to the severity of your illness from review in 6 months for folks expected to recover in the near future to 2-3 year reviews for folks expected to recover, to a review of 5-6 years for those who are not expected to recover. I just went through the review process after 3 years despite the fact my doctors have labeled me as terminal. I am continuing on SSD despite the fact I was given a death sentence of between 3 and 5 years. Hey SSD, I'm still kickin' and grinnin'. Congrats on getting through the process. I am just sorry you had to revert to a lawyer to do it. It shouldn't be that way. Now I wonder what is going to happen with the latest Supreme Court decision that defines "handicap" much more narrowly. I have a strong feeling SSD and other agencies will use it as an excuse to exclude more folks than ever from the SSD rolls. Congress has come forward and said it is working on legislation that would circumvent the Supreme Court decision and water it down to some degree. In the meantime, I hope none of us are caught in the crosshairs of what has become our very exclusionary government. biggerbhoy@hotmail.com


Linda ?, June 23, 1999 - Hi, For those having trouble with Coreg: my doctor started me at 3.125mg once a day, then doubled it every 2 weeks. I have been on 25mg once a day now for about 6 weeks with no side effects. He said that he used to give people the dosage twice a day but it wiped them out. This has been more effective. I may go to 25mg twice a day in 2 months after my next echo. So far, so good. You might consider checking this out with your doctor and see if it helps. lmessia@aol.com


Jill S' June 23 reply to Patrick's June 22, 1999 - Hi Patrick, Last summer my cardiologist tried to get me started on Coreg. Unfortunately my BP couldn't handle even the smallest dose of 3.25mg. It down to 58/40. We tried juggling all my other meds but couldn't make any headway. Then we waited awhile and started again (at bedtime) with a dose of 3.125mg once a day. We have been increasing the dose by 3.25mg every 3 months since December. I am able to maintain a BP of around 88/56. I don't feel any better, however the dose hasn't reached the "therapeutic" range yet. I had my second EF test in 2 years in May and it was the same. I was disappointed but I am hoping that because the dose wasn't very high, the Coreg hadn't improved the numbers yet. Good luck. jilschro@jsp.net


Doug K's June 24 reply to Tom S' June 23, 1999 - Hi Tom, I started Coumadin last October, and take 8-10 mg a day due to a blood clotting disorder. Since I chart my weight in the morning and evening, I noticed that my weight was going up all winter. I usually go up a bit in the winter months but I just hit 215, which I haven't been in 4 years. I usually bounce between 196-200 pounds and usually come the warmer months, my weight drops almost 10 pounds due to the heat. It hasn't dropped so maybe the Coumadin is the reason we gained considerable weight. Has anyone else noticed this? I checked my Pill Book and no mention of weight gain as a side effect. Good luck losing those extra pounds, we just have to eat less I guess. I can't stop taking the Coumadin, that's for sure. My best to all of you. Doug Knuth, DCM/CHF. dgknuth@earthlink.net


John Len's June 24 reply to Tom S' June 23, 1999 - Hi Tom, As far as I can remember I have been on SSD for about 8 or 10 years. I can't remember any reviews. Of course, I was about 54 or 58 years old at the time I went on it and was considered terminal. Of course, my kicking days are over but I can manage a grin every now and then. However, I am caught up in the Medicare game and am still waiting for the smoke to clear to see if I survive this one; the ole HMO dumping us routine. Medicare rattled their chain and they jumped through the hoop. John. a_lenny6@hotmail.com


Phyllis A's June 24 reply to Helen O's June 21, 1999 - Hi Helen, Thanks for the info. I have also came to that conclusion that the docs just don't know or won't admit it. I could accept it better if they would just say it. After all, they don't know all. They are not God. phylcasurv@msn.com


Peg G, June 24, 1999 - Hi to all, It has been a long time since I posted because I lost this Website, and couldn't seem to find it no matter what I did. Boy, did I miss you all. It has been a year since my doctors discovered that one third of my heart is damaged due to cardiomyopathy which had gone into CHF. We have been working on stabilizing me. My ejection fraction was 39% a year ago after I had already started taking some meds, and it had raised a couple of notches 3 months ago. They will do another echo in a couple of weeks, and that will probably tell what I have stabilized at. The doctor is still hoping to get it higher but it has stayed pretty much in the low 40s now for 6 months or so. I feel decent most of the time and have learned how to change my work habits to save energy. Coughing, shortness of breath and fatigue still plague me, and I guess that's probably the way it will stay. I have lost 25 pounds of fluid over the past year and take 4 diuretics a day to keep it down. That alone has helped me to feel better. I'm just thankful they caught the CHF when they did and that I can still work, even though there are days when I don't really feel like it. I have been home all this week with a bronchial infection, which really takes its toll when you have CHF. I'm trying to get better so I can go back to work Sunday or Monday.
     Even though I haven't been in touch for awhile, you all have been in my prayers. CHF is tough to live with but with God's help we can do it. Of course, you need a good doctor and willingness to follow his instructions. Blessings and peace. Peg G. goochey@pacbell.net


Tom S' June 24 reply to Doug K's June 24, 1999 - Hi, I experienced a seasonal yo-yo effect with weight too and used to liken it to a bear fattening up to hibernate for the winter. Perhaps the docs would see that as a plausible explanation for weight gain towards winter and weight loss during the summer months. This particular weight loss was noticeable because it occured almost simultaneously with dropping Coumadin. There were no dramatic changes in dietary intake habits or quantity of foods ingested. I have also noticed a pecular change in regularity, which in a word has now become irregular. I suspect there are a lot of side effects that aren't outlined in the pill books because even the pill manufacturers admit they do not know in any absolute terms the full range of side effects of any drug. By the way Len, if you were 54 or 58 when you went on SSD, that would make you either 60, 64 or 68 at the present time. I sure hope my meds don't cause mind slippage so I can't remember how old I am. <g> biggerbhoy@hotmail.com


Doug K, June 24, 1999 - Hi all, I was just wondering if anyone out there has heard from Muriel lately. A couple of us haven't heard from her in a couple of weeks and are hoping that all is ok with her. Thanks. Doug. dgknuth@earthlink.net


Hank, June 26, 1999 - Hi, I got good news today. My EF was 15% in September of 1998 and was 45% on 6/23/99. I started on Coreg ni February and am up to 12.5mg twice a day now along with Accupril, Demadex, Lanoxin, Lipitor, aspirin, vitmin E, Folic acid, a multiple vitamin, magnesium, CoQ10, taurine, carnitine and Hawthorne. I also found Jon's Place. What a blessing! tteeters@neo.rr.com


Doris R, June 26, 1999 - Hello everyone, I have excellent news I'm busting to share. I finally had my doctor's appointment. After 6 months on Coreg and an EF of 10%, I am thrilled to announce my EF is now a whopping 30%! God is so wonderful. I was so concerned about my EF. I was advised here at The Beat not to set myself up for a big letdown and that to have my EF go from 10% to even 15% or 20% was a victory. I was also told a lot of times that it's not your EF but how you feel. So I lowered my expectations. Today, I couldn't have been more pleased to receive such good news. I will be retested in another 6 months. I am so full of hope. Thank you everyone for your prayers and advice and concern. Communicating with you all feels like a protective hug. God bless you all. Love, Doris. RoughGoing@aol.com


John Len's June 26 reply to Tom S' June 24, 1999 - Hi Tom, It's not so much that I don't know how old I am, it's just I can't always remember the fun-time dates (and I am to lazy to look up my medical records). I'll be 64 the 19th of July. I might add that back then my goal was to live long enough to see the year 2000. Reading the doomsday forecasts in the papers and on the telly, I'm not too sure that was a wise decision but it's been a pretty good life. It's just that now there are a lot more aches and pains when I get up in the mornings. :-) John. a_lenny6@hotmail.com


Ruth P's June 26 reply to Doug K's June 24, 1999 - Hi, My husband Ron takes Coumadin because he has a metallic aortic valve. He has gained quite a bit of weight since starting Coumadin 3 years ago. We put it down to lack of exercise as he also has a respiratory problem and no longer works out. However, Coumadin might be the culprit here. Peg - how nice to hear from you again. Bookmark this site; I would hate to be without it. rpow@total.net


LeeAnn D's June 26 reply to Jill S' June 23, 1999 - Hi everyone, Hey Jill, I also have very low blood pressure and Coreg did drop it initially but I am now tolerating 25mg twice a day and after 10 months my EF improved. I was titrated very slowly - not two weeks like most people - more like 2-3 months. This is just to let you know that someone else with low BP has been helped by it. By the way, all my echos showed steady decline until the 10 month echo. I do however, credit switching to the CoQ10 gel. I think it helped a lot, not to mention prayers! ddavis1057@aol.com


Ben B, June 26, 1999 - Hi, With all the talk lately about SSD, I would like to urge people who have job-seeking friends and family to remind their loved ones what an important benefit long term disability insurance is (if you can get it). I did not even remember I had it until I got sick and I certainly did not really consider it when I took my last job, because I never thought I'd need it. The company approved me in one month and I am still waiting for SSD. Although some people have to hassle with their insurance company, it helps to have more than one possible source of income. I feel really lucky about this. bdbrinkman@juno.com


Cloyd P, June 26, 1999 - Hi, I was recently dianosed with CHF. Can someone tell me what EF means, and what it has to do with the heart? P-C-Perry@webtv.net


Jon, June 28, 1999 - Hi everyone, I was so lightheaded yesterday I couldn't read anything. It's better today but I don't know how long I'll be able to concentrate. I might just be adjusting to a higher dose of Monopril; Fun and joy! Yahoo tried to finish their merging with geocities in one fell swoop over the past 3 to 4 days and as a result, my site has been malfunctioning on a regular basis. I hope they get it cleared up soon and reply to my questions about changes in policy. I'll let you know when and if they do. Some of you may have noticed how few new articles are being added to my pages lately. It ain't for lack of trying! <g> The problem is that I am reading more and more very weak, very small studies, which although highly touted in the press, really don't mean anything except that a real study is needed on the subject. I continue to pass a lot of these on via mailings but they really aren't solid enough to go on my pages. I suppose it is from researchers chasing dollars instead of knowledge. So it goes. Jon.


Jack, June 28, 1999 - Yo guys, I think you are starting an Internet rumor here. Coumadin probably has more side effects than many other medicines and it has drug interactions with more drugs too. You can read about it at RxList, but one side effect that isn't mentioned anywhere is weight gain. There are multiple factors to consider when anything happens to your body, especially weight gain, and pointing the finger at something that has never been connected with it could cause some people to decide on their own that they should stop taking it. Read up; it'll help. Jack. maddjak@hotmail.com
 
Jon's Note: My own weight gain has been caused by a powerful drug: food. I eat too much. <g>


Jackie B, June 28, 1999 - Hi, I have been reading this site for several months now. The Url was given to me from a friend at work. I have some questions maybe you all can help me answer. I had an aortic valve replacement 4 years ago. My valve was at a 0.6 when it was replaced, which means I was at a critical state. There was damage to the heart muscle around the valve causing right-sided heart failure. I began having fluid retention almost immediately and was placed on a mild diuretic. In August of this year I was given the official diagnosis of heart failure. My fluid retenion worsened along with my breathlessness with exertion and the worn out feeling. I was placed on Lasix, Zaroxolyn and spironolactone. I was already on Lanoxin and Coumadin. My ejection fraction 4 years ago was 70, now it is at 60 as of February 1999. I realize this is in the normal range but I also understand that with right-sided failure it is not unusual to have a normal ejection fraction.
     My questions: Is right-sided failure as bad as left-sided failure? Is the life span for right-sided failure the same as left-sided failure? I understand the life span is 5 to 12 years on average. I am getting really weak when I am on my feet for any extended period of time. I get so weak, I get totally wiped out for most of the rest of the day. Does that happen to you all? I feel like my condition is worsening really fast. I try to limit my sodium although I'm not at 2 grams a day. I'm on 40mg Lasix and take 60mg when I have extra fluid retention. It is not unusual for me to gain 6 pounds in a day. I usually use the weekend to get rid of the week's excess fluid. I do work a full-time, high stress job, but seem to be okay with that most of the time. Thanks in advance for your help. Jackie B. gjconnection@earthlink.net


Della R's June 28 reply to John Len's June 26, 1999 - Hi John, I read your post and smiled. I thought that was just my personal goal to live to the year 2000. I just want to write it on a check or something. That has been a thought I've had since I was a child and too young to figure how old I would be by then. I just turned 65 on the 24th of June and am feeling really quite well but I don't think it is as much physical as it is mental. An incurable optimist here, and loving and trusting the Lord is the reason. Yeah, my heart is weak and my doc, bless him, says I don't have a passing gear, my legs are an inch bigger at night than they were in the morning, my feet tingle, I take a double digit of pills every day, endure angina and attacks of hypoglycemia but I thank Him that I am still here and can walk around unaided. I'm grateful for a job I can handle and the insurance that goes with it, I praise Him that I can get a good night's sleep, and pray He will look upon all of us with a tenderness only He can bestow. He is an awesome God! dellerdo@inw.net


Jill S' June 28 reply to LeeAnn D's June 26, 1999 - Hi LeeAnn, Thanks for the encouraging words. Even though I tried not to get my hopes up, the fact that my EF was unchanged in 2 years was a serious bummer. Of course, I guess I should be thrilled that it wasn't worse but with all of the success stories, I was hoping to be one of them. Lately I have had more fatigue and depression, I'm not sure which is feeding which but it's been hard. I haven't had much shortness of breath but my exercise tolerance has been down all winter and spring, coinciding with my increases in Coreg, I believe also. My 11 year old is probably getting tired of hearing me say "I'm too tired" because I'm getting tired of saying it. My husband thinks I do too much! Well, I'm rambling on. Sorry but I know you know how I feel. Jill S, DCM, EF 28, IQ also 28. jilschro@jsp.net


Helen O, June 28, 1999 - Hi all, I saw my cardiologist 6-23. I am doing as well as can be expected, considering. We talked a lot about the chest pain, headaches, dizziness, fatigue and almost constant thirst. I got good and bad news, bad news first: Nothing can really be done to help any of the aforementioned problems. I just have to deal with it. The good news: He told me I can add more fluid if it is water. To compensate for the added fluid and since I still have trouble breathing at night, he increased my Lasix to 40mg to be taken in the evening. As things develop I will keep you informed. Helen, 25 years old, EF 24%. woohoo@imap4.asu.edu


Jane M, June 28, 1999 - Hello everyone, I had my reconstruction surgery on the 23rd and came home from the hospital yesterday. I'm feeling quite well, except that I can't stand up straight, and was told it will be awhile before I can. I almost freaked when they stood me up about 10 hours after surgery was done. I thought for sure every stitch had been pulled out. I'm still afraid to cough (had a short coughing spell yesterday) and it really hurts. Thanks you everyone who e-mailed and prayed for me. I know it made a huge difference. As soon as I got rid of the IV, I started feeling better. I didn't have any problems with my heart at all. Thanks again for all of the support! Jane M. jmerritt@iserv.net


Dave D, June 28, 1999 - Hi, My aunt has heard about this site and asked me to write in for her since she has no access to the Internet. She's been living with CHF for a couple of years with an EF of 30% or so. I admire her greatly as she has faced this diagnosis with the same positive attitude that she has brought to all other aspects of her life. She's determined not to let it get the best of her and is proactively researching treatment options. She has learned a lot from what I've printed for her from this forum. Anyway, she recently heard about clinical trials underway for a device treatment for CHF (not LVAD) that would stimulate both sides of the heart to increase its pumping efficiency (something about biventricular pacing). She wanted to ask whether anyone here knows more about it. Has anyone's doctor mentioned it? Can anyone suggest where she can go to read more about it? Is anyone here involved in the trial? Should I tell her not to get her hopes up too much about it or does it sound like a real advance? Thanks so much for your help. Hopefully I'll be able to get my aunt up on the web soon and she'll be able to participate in The Beat Goes On herself. drd@swc.com


LeeAnn D's June 28 reply to Doris' June 26, 1999 - Contratulations, Doris! You sound just like me. My EF in January was 12 and in April was 30, and I felt just like you do. By the way, with the good news it became pretty hard not to overdo it. Good luck! ddavis1057@aol.com


Jana B, June 28, 1999 - Hi, To all you pre-menopausal women: Have you noticed a correlation between PMS and CHF symptoms worsening? Jana. JByers4u@aol.com


Carolyn B, June 29, 1999 - Greetings, I follow both sites, as my children have DCM. I find the weight gain on Coumadin comments of interest. I speak with patients on a daily basis who are on warfarin (Coumadin) so this is good input; Thanks for the comments! littleone@integrityonline.com


Tom S' June 29 reply to Jack's June 28, 1999 - Hi, A connection between drug use and weight gain may have been suggested but that's all. This forum probably represents one of the largest concentrations of persons with a set of similar physical ailments. It can be a wonderful source of information not only for those with the condition but those whose goals are to eliminate or alleviate the effects of CHF. No Internet rumors here, just information exchange.


Cindy's June 29 reply to Jana B's June 28, 1999 - Hi Jana, In regard to your question about increased CHF symptoms correlating with PMS, the answer is a resounding yes! I'm actually looking forward to menopause (I'm 39) because the increased fatigue is horrible for several days before, and especially during my period. I just try not to schedule any important activites at that time because I am generally wiped out for several days. I wish I could offer you advice but you're not alone in this. Best, Cindy M. cleighmc@aol.com


Bonnie, June 29, 1999 - Hi, I thought I would write a brief note to let everyone know where I''ve been the past few months. My little one who has DCM is still stable, thank goodness but in March, her father had a terrible accident at our house. He was working on his drag car when it took off and ran into our house. He was in ICU for 2 months on life support and is now home recovering from a severe brain injury and has lost almost all of his vision. We are now fighting the government for his disability. They keep sending him to doctors to prove that he cannot see. I thought when Kaitlin got sick that I would not be able to handle it but God showed me a way. Well, again He has given me courage to go on. So for all of you out there who are depressed and scared about your condition, cling to God's hand. He will never let you down. For all you non-believers, I'll pray for you. Bonnie. ersie@blomand.net


LeeAnn D's June 29 reply to Jana B's June 28, 1999 - Hi Jana, I do have more symptoms prior to my cycle but it's in direct relation to how I've always felt. Before, I felt tired and bloated, and now I feel a little more tired and a little more bloated (2-3lbs) at that time. There was a woman on this site awhile back who only had one good week out of the month because of her combination PMS/CHF. She was working on it with her doctor. Does anyone remember who this was? Good luck! LeeAnn, age 38, EF 30. ddavis1057@aol.com


Henry T's June 29 reply to Dave D's June 28, 1999 - Hi Dave, Guidant Corporation has recently been approved for an ICD type device that is specifically designed for CHF patients. I believe that it is similar to their dual chamber ICD. You can get more info from the Guidant Corporation home page. I hope this helps. Henry T. hrtick@aol.com
 
Jon's Note: See this page.


Phyllis A, June 29, 1999 - Hello to Jon and all, I just wanted to update you all on my condition. I went to the cardiologist June 14, 1999. He noticed more changes in my EKG, told me to increase my Verapamil from 240mg to360mg to see what happens. If there is no change, he will put in a pacemaker. He also told me about a couple of other choices. I'll go for the pacer. I will keep you all informed. God got me through breast cancer and He will get me through this also with faith. Pray for me as I will pray for you all. God loves us all. phylcasurv@msn.com


Jon, June 30, 1999 - Hi everyone, On the technical front, Yahoo-geocities has made a mess of their consolidation. I thought the addition of some Yahoo staff might be an improvement - silly me. If I disappear for a few days, it's probably just because I can't get to my server space. I am, however, a good file juggler by now and am currently busy juggling. :-) My wife is home sick and this afternoon, I am trying to get my daughter her driver's license. So if they get put up, posts will be late. Jon.


Dee K's June 30 reply to Bonnie's June 29, 1999 - Dear Bonnie, Bless your heart, hang on to your Provider's hand. You have really had a trial. You're absolutely right, God can and will see that you have the strength to get through all this. I have placed you and your family on our prayer list, as I have Jon and all who post here. Love, Dee K, associate pastor Zion non-denominational church. DK1992@aol.com


Steve Brown, June 30, 1999 - Hi, I was diagnosed with class one dilated cardiomyopathy in February, 1999. I am a 56 year old married male. My EF was 37. I'm on Coreg (25mg per day) and Lisinopril. I walk every day and watch my sodium intake. I feel fortunate to have discovered this illness so soon. sajbrown@aol.com


Martha W's June 30 reply to Jackie B's June 28, 1999 - Hi Jackie, Concerning your fluid retention, I cannot stress too much the importance of limiting your sodium intake to less than 2 grams a day. Also do not take in more than 2 quarts of liquid a day. Also, the amount of Lasix you are taking is really not very much. You may have to increase the dosage to get better results. My husband has struggled with CHF for a long time and very often we have to change the dose on his diuretics to obtain the desired results. Sometimes we drop back on the Lasix and increase his other diuretics to get more fluid off. Your energy level is increased with fluid loss. Check with your doc about this and good luck! mwalters@llion.org


Pat D's June 30 reply to Bonnie's June 29, 1999 - Hi Bonnie, I'm so sorry to hear of your recent troubles. You certainly have a full plate and your attitude is to be admired. I agree that God will carry you through this but still, the daily hardships and hurt can sometimes be overwhelming, no matter how great your faith. Don't forget that there are many people here to help you through those hard days. If you would like to talk more privately, my e-mail address is posted. God bless you and your family. Pat D. patj98@yahoo.com


Cecil, June 30, 1999 - Hi, It was interesting catching up on the posts after a very long trip, especially the debate over Coumadin and weight gain. I can say that my own experience has been weight loss when I go off Coumadin and then weight gain when I am forced to take it again. Jon mentioned his own weight gain was from the powerful drug of food. I can only attest to the fact that food in fact has been a powerful drug for me, especially the types of food I eat. When I screw up and eat food with too much sodium, everything gets out of whack. When I eat the right foods: meat, fish, vegetables, fruit, fats but no complex carbohydrates, my energy levels increase substantially. Food really is one of the most powerful drugs with which we all have to deal on a daily basis. Cecil3744@aol.com


Danny, June 30, 1999 - Hi, I have CHF and AF. I enjoy this site because it helps not to feel all alone in this. I was forced to move from Florida to Iowa because my wife was transferred and we needed the insurance due to my illness. I know no one here and just sit here all day facing 4 walls and loneliness. This site is very uplifting to me. I tried to go into the chat room but since it is java based and I have webtv, I couldn't get in. I would like to talk with some of you and if you would like to e-mail to set a time we can chat on either aol or webtv. I do look forward to hearing from someone out there. I wish all of you well, as I know how hard this illness can be on you and your family members. I just don't feel like a man anymore because I am so dependent on my wife for all my financial needs and SS is so slow in coming. I have been waiting 7 months so far for that elusive check. dls50@webtv.net


Brenda H, June 30, 1999 - Hi all, I haven't posted in awhile because of all the stuff I've been going through but it's good to be back. I'm thinking of applying for SSD, is it worth it? We really need the money for doctor bills, etc, but I have heard so many negatives on it. Plus the last 4 years, I worked on my own cleaning houses and was told the people I cleaned for were supposed to pay into SS but they didn't. So I guess I'd have to say I didn't work. Thanks for any advice. Brenda, with a new e-mail address of Brendakay@wa.free.net


Donna's June 30 reply to Doris R's June 26, 1999 - Hi, I answered you direct but wanted to see if other people at this site have any of the same symptoms that I have. Every time I have some chest discomfort (angina without pain), it is off to the hospital for a few days to get checked out. They never find any reason for the angina but my meds get moved around. I take 6.25mg Coreg twice a day, 50mg Cozaar twice a day, 40mg Lasix a day, 0.25mg digoxin once a day, 20meq potassium chloride a day, 10mg and 8mg warfarin on odd and even days, 15mg prevacid a day (suspecting reflux instead of angina), 10mg fosamax a day, prempro daily and 375mg aspirin daily. I have dizzy (really falling down dizzy) spells at least twice a week with no relief in the past 2 years. I was diagnosed with CHF 5 years ago and told that the life expectancy is about 5-10 years. My EF has risen from 17% five years ago to 42% at my last echo about 9 months ago. Any tips from others in similar circumstances would be appreciated. Thanks so very much. This is my first time at this site. nanamorey@aol.com


Norma, June 30, 1999 - Hi, This is my first message to your support group. I was diagnosed 4 years ago with CHF and have been doing well until the last few months. I have shortness of breath and edema but am coping pretty well. However, one thing really puzzles me. I'd like to know whether others have this same sensation of utter exhaustion which comes along suddenly, and fortunately, departs fairly soon. This feeling of exhaustion is so complete for that short period of time. Is this my imagination or am I being a slacker? donnor@aol.com


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

Talk to Jon Site Index