The paperwork never ends The Archives
December 1-15, 1999 Archive Index CHFpatients.com

Candy P 12-1     update after surgery & more
 
Dick T's 12-1 reply to Ruthie A's 11-25     intro, meds, posts & more
 
Felix O 12-1     can Toprol XL cause depression?
 
Jon's 12-1 reply to Felix O's 12-1     drugs & side effects
 
Felix O's 12-1 reply to Thelma C's 11-28     sleep apnea & CHF
 
Jamie S 12-1     new plaque treatment coming
 
Mike W 12-1     can't control BP - anyone else?
 
Paul M's 12-1 reply to Thelma C's 11-28     sleep apnea & CHF
 
Ben B's 12-2 reply to Mike W's 12-1     controlling high BP
 
Arnie 12-2     intro, Coreg & more
 
Don G 12-2     sodium info & more
 
Harriet's 12-2 reply toThelma's C's 11-28     sleep apnea, CHF & CPAP
 
Joe C 12-2     intro, question of disease degree & more
 
Eva 12-2     intro, need weight loss help
 
Kathleen M 12-2     getting much better - have questions
 
Phyllis W 12-2     anyone else have trouble with generic drugs?
 
Susie O 12-2     to Jon
 
Jon's 12-2 reply to Susie O's 12-2     sleep, the site, coping & more
 
Jon's 12-2 reply to Joe C's 12-2     mild cardiomyopathy
 
John Len's 12-2 reply to Thelma C's 11-28     sleep apnea Url
 
Jon's 12-2 reply to Marinus TenHaaft's 11-25     sodium
 
Leland Y 12-2     to Jon
 
Betty S 12-4     prayer request & to Joe C
 
Bev T 12-4     swelling in stomach questions
 
Dennis Bitton 12-4     hot & cold spots, sleeping questions
 
Gwen Sanders' 12-4 reply to Kathleen's 12-2     DCM improvement, meds, fatigue & more
 
Joe S' 12-4 reply to Jon's 12-2     dealing with our weak bodies
 
John's 12-4 reply to Eva's 12-2     weight loss methods
 
Kay 12-4     seek drug trial info
 
Ledeva 12-4     love the Christmas music
 
Shirley 12-4     SSD & part-time work questions & more
 
Jon's 12-4 reply to Bev T's 12-4     swelling in stomach is CHF
 
Jon's 12-4 reply to Kay's 12-4     Enbrel trials & info
 
Ginger 12-5     update, thanks, new Url
 
Harriet's 12-5 reply to Jon's 12-2     coping, counting our blessings
 
Leeanne's 12-5 reply to Jon's 12-4     stomach swelling
 
Jon's 12-5 reply to Leeanne's 12-5     stomach swelling
 
Margie F 12-5     prayer request, heart damage & more
 
Phyllis A's 12-5 reply to Bev T's 12-4     face & stomach swelling
 
Tom S 12-5     stomach swelling from CHF
 
Arnold S 12-7     Coreg makes me too tired
 
Ben B 12-7     CHF info Url
 
Jana B 12-7     a poem for Net friends
 
Michael T 12-7     intro & some questions
 
Missy 12-7     intro, seek new drug info
 
Ranelle 12-7     Coumadin problems, have aspirin questions
 
Kathleen M's 12-7 reply to Gwen Sanders' 12-4     update after doc visit
 
Doug K's 12-8 reply to Ranelle's 12-7     Coumadin vs aspirin
 
Ginger 12-8     update good & bad, prayer request
 
Linda M's 12-8 reply to Arnold S' 12-8     Coreg is just too much for me
 
David 12-8     questions about pain & more
 
Jon's 12-8 reply to David's 12-8     cortisone & your pain
 
Bill D's 12-8 reply to Arnold S' 12-7     reducing Coreg's side effects
 
Julie 12-9     travel & doctor questions
 
Sherrell G's 12-9 reply to Arnold S' 12-7     Coreg adjustment
 
Jon 12-9     computer virus info & to Webtv users
 
Sherrell G's 12-9 reply to Bill D's 12-8     when to take what meds
 
Tom S 12-9     depression & chronic illness
 
Joe S 12-9     coping over the years
 
Rick M's 12-10 reply to Julie's 12-9     trip could be too much
 
Missy 12-10     CoQ10 questions
 
Donald Gazzaniga 12-10     low sodium Xmas recipes
 
Ben B's 12-10 reply to Julie's 12-9     traveling with CHF
 
Candy P 12-11     I now have cancer too
 
Jamie S 12-11     what would you ask?
 
Cindy M's 12-12 reply to Jamie S' 12-11     tell them it ain't over yet
 
Michael T 12-12     questions - Adam's apple, T-wave inversion
 
Roger G's 12-12 reply to Tom S' 12-5     bloating, getting results from docs
 
Jon 12-12     new Xmas music available now
 
Pat L's 12-13 reply to Jamie S' 12-11     some suggestions
 
Jon's 12-13 reply to Jamie S' 12-11     some suggestions
 
Joe S' 12-13 reply to Jamie S' 12-11     we ain't dead yet
 
Michael T's 12-13 reply to Julie's 12-9     traveling, CHF doctors
 
William S' reply to Candy's 12-11     coping
 
Helen O 12-14     we moved & more
 
Cindy 12-14     seek advice on coping with CHF
 
Missy's 12-14 reply to Joe S' 12-13     hanging in there
 
Roger G's 12-14 reply to Jon's 12-13     coping with CHF may start here
 
Jons' 12-14 reply to Roger G's 12-14     proof that positive attitude pays off
 
Phyllis A 12-15     love the Christmas music
 
Duane C 12-15     plane travel & oxygen questions


Candy P, December 1, 1999 - Hello, I haven't posted for several months, as I have been away from a computer for that long. I have missed reading all the posts and information from everyone here. In September, I had thoraic aorta to bi-femur bypass and now am a proud owner of a dacron artery from my thoracic area to both femurs. I had an occluded aorta which decreased the blood flow through my legs to almost nothing. The doctor said the only reason my legs didn't fall off was because of my vessels.
     Anyway, about a week after I got home from the hospital, I went into congestive heart failure again. I spent 3 more days in the hospital to remove the excess fluid from my body. All 3 of my doctors said the reason was, my body couldn't handle the fluid buildup from surgery. After increasing all of my meds, I am now doing quite well. I have moved to Lansing to be with my family and am now looking for a new cardiologist. The new intern I have did refer me to one and my first visit is next week.
     I am a little afraid, as I knew and trusted the one I had, but the new internist I have was very thorough so I hope he referred me to a good cardiologist. I also found out I only have one kidney. It died from my peripheral cardiovascular disease. I was denied SSD, so I'm appealing. The positive news is that I can now walk and feel 100% better and the cardiologist said the last stress test I had on my heart was normal. So things are looking up. I will now periodically keep in touch with this helpful site. God bless! GrPota@aol.com


Dick T's December 1 reply to Ruthie A's November 25, 1999 - Hi, This is my first post to this message board. I just found it a couple of weeks ago and find the posts answer many questions I have had over the years since I had CHF 13 years ago followed by a-fib 5 years ago.
     I'm 53 now. Nearly 2 years ago I started noticing shortness of breath that became a real problem because even simple activity would bring it on. This included walking up stairs, mowing the lawn or taking trash to the curb for pick-up. I would wake up at night with trouble breathing. I have been on all the normal meds but found with the last doctor I was referred to, that fluid retention was most likely my problem. He increased my furosemide dose to 120mg per day and Zaroxolyn to 5mg every other day. Within several weeks I noticed no more shortness of breath. This has held for more than a year now. Because of the diuretics, I take 80meq per day of potassium. Don't ever let your potassium get too low. The Zaroxolyn acts as a booster taken 30 minutes before the furosemide at breakfast. For me, simple diuretics (in larger doses) worked better than all the other fancy drugs I was trying for the last 5 years.
     Jon, I love this board and I am working my way through all the older posts a little bit at a time. Thanks for your real concern for others who are in the same boat with you. Best of luck, Ruthie. Dick T. reticles@shentel.net


Felix O, December 1, 1999 - Hi, I have been on Toprol XL for almost 2 years and have no complaints. My heart size decreased, I don't have as many PVCs as before, and my blood pressure is under control, but I hear this drug causes depression. Is this true? felixor@prtc.net


Jon's December 1 reply to Felix O's December 1, 1999 - Hi Felix, All drugs have huge lists of possible side effects, but very few people suffer any of those side effects compared to the number of people taking the drug. However, to answer your question, yes, I believe that all beta-blockers, of which Toprol is one, can make a person more susceptible to depression. Jon.


Felix O's December 1 reply to Thelma C's November 28, 1999 - Hi everyone, I have both sleep apnea and CHF. There must be some correlation between these 2 conditions, because 40% is way too high when compared to the rest of the non-CHF population. CPAP therapy really helps a lot. You will feel more energy, be happier, and your heart will not suffer from the breathless apneic episodes. See this site: http://www.chfsummit.com/1998/1998.html. felixor@prtc.net


Jamie S, December 1, 1999 - Hi, I may be a day late and a dollar short, but I figure I'd post this just in case someone could use the information. I heard of a treatment for plaque buildup. It is a light reactive chemical used in fighting cancer cells. Unlike angioplasty, restenosis doesn't occur. This is going into trials and may be FDA approved in 5 years. I don't have any other info but I am sure Jon or another research hound can find out more about the treatments and trials. I'm getting a little rusty with researching things. Also, there is a TV movie this week based on "Tuesday with Morrie." I recommend reading "Letting Go: Morrie's Reflections" by Morrie Schwartz. It helped me get things in perspective and still keeps me there. Be well in mind and body. Jamie. JamieDan@prodigy.net


Mike W, December 1, 1999 - Hi, I have been lurking here daily since I was diagnosed with CHF in 11/97. I've been feeling pretty well and feel grateful to be pretty much symptom-free, with no SOB, fluid retention or great fatigue. However, since day one my cardiologist and I have not been able to get my BP to an acceptable level, with it averaging about 150/85 since I was diagnosed. I measure my BP daily.
     My meds are now 40mg Monopril twice a day, 0.25mg Lanoxin daily, just raised my metoprolol (beta-blocker) to 50mg 3 times a day, and has also added 50mg Cozaar daily. I haven't had to take Lasix for more than 18 months. At diagnosis my EF by echo was 25-30%. The crazy thing is that my BP seems immune to these fairly high doses of meds. I have lost a bunch of weight. I weighed 275lbs at diagnosis, at 5'10" tall, and about 30lbs of that was water. I now weigh 210lbs. I know I should go lower but it's hard, especially since I also gave up a 35-year 4 pack a day smoking addiction and am still filled with nictotine cravings after 2 years. I also exercise 30 minutes a day on a stationary bike pretty rigorously.
     Does anyone else have any success stories about getting a difficult to control BP down? I'm unemployed and have no health insurance so the doctor and I are treating my CHF "on a budget." I haven't had a lot of expensive tests like MUGA, thallium stress, etc. The doctor says we will be doing another echo in 6 months. Any comments would be appreciated. Mike Wafkowski. mikeyw@sohogurus.tzo.com
 
Jon's Note: Have you checked into trials of Omapatrilat ? It is ready for phase 3 trials, so it would cost you nothing. Ask your doctor, and check trial info through these links


Paul M's December 1 reply to Thelma C's November 28, 1999 - Hi Thelma, I was diagnosed with sleep apnea about 7 years ago even thouugh I was undiagnosed for many years before that. At least 2 different doctors were saying that sleep apnea can cause heart damage. This is true if your oxygen levels drops below the 85% level. If you think about it, when your oxygen level drops, your heart has to pump harder to compensate for it. A heart that works harder can wear it out faster. I had the experience of wearing a CPAP machine while in the 2 visits to a sleep lab but was fortunate to treat my condition with a change in sleeping habits. I would have worn it if the change in sleeping habits did not improve my condition. It is not a quiet little machine but like everything else, you can get used to it. It's been ages since I posted but I'm a recovered DCM patient with a previous EF of 26%. My EF has since returned to normal for at least 12 months now. paulmcferrin@worldnet.att.net


Ben B's December 2 reply to Mike W's December 1, 1999 - Hi, I also have a problem with high BP despite medication. After diagnosis and starting on Zestril, my BP stayed normal for about a year, then went up, once even to 200/85. My last few measurements were normal, but they don't seem to stay that way. I had been thinking that because I am fairly asymptomatic like you that high BP was one of those things that may make you actually feel better but it is really very bad for your heart. I am going up to the maximum Coreg dose, and after that my doctor has told me that there is omnipatrolat, as well as calcium channel blockers like Norvasc. Plus, diuretics also can help lower blood pressure, and they are inexpensive. Finally, there is even more extreme sodium restriction, which I should probably do anyway and it's free. I'm willing to try any of these that my doctor says. bdbrinkman@ieee.org


Arnie, December 2, 1999 - Hi everyone, I'm new to this support group. I'm 63. I had a heart attack in 1980 and was doing fine, then in October of this year, I had a hard time breathing, was rushed to the hospital and diagnosed with congestive heart failure. I was put on Cozaar and Coreg. I started Coreg at 6.25mg with hardly any side effects, but today my doctor raised it to 25mg twice a day. I am glad there is a support group that I can get some answers from other than the doctors. I'll be looking over this every day. Thanks. arnie@gardettosmeadow.com


Don G, December 2, 1999 - Hi, I just received a copy of NIH's latest study concerning sodium intake. The new daily level for healthy people they recommend is 2400mg a day. I thought Jon's Place visitors would like read the breakdown of this report. I've posted it at http://megaheart.com/NIH_sodium.html. By the way, the book appears to be on schedule. The last of the first edited copy was returned to the publisher this week, one week ahead of schedule. They didn't cut a single recipe and told me they thought it was the "finest job" for a new cookbook they'd seen in years. I hope you had a happy Thanksgiving and that Christmas will be just as happy. Donald Gazzaniga. don@megaheart.com


Harriet's December 2 reply to Thelma C's November 28, 1999 - Hi Thelma, I was diagnosed with severe sleep apnea in 1995. Sleep apnea is called the sudden death disorder because the heart is deprived of that oxygen. It is good that you are on c-pap. I started out on that at 12 pounds of air pressure. I'm now on a bi-pap 18/8 pressure. I know for a fact that my little buddy has kept me alive many, many times. When I was diagnosed, I was stopping breathing 77 times in 60 minutes. I wasn't getting any sleep at all! The c-pap will indeed improve your outlook, energy, and the health of your heart. God bless you. hprince57@aol.com


Joe C, December 2, 1999 - Hello all, My name is Joe C and I'm a 34 year old single male living and working in Atlanta. This past month, I was diagnosed as having "mild" cardiomyopathy. My EF was tested during a heart cath and was about 40. My first cardiologist did not seem very caring towards me, so I have now moved on to a new one, who seems to be working out quite well. I agree with Jon in that finding the right doc is very important. My new doc actually called me today at work to tell me the results from my latest echo. These results confirmed the diagnosis of "mild" cardiomyopathy.
     I also have a Ventricular Septal Defect (VSD) that I was born with, and they have since ruled that out as a possible contributing factor, as the hole in the septum is not that large. However, they are still investigating the possiblity of surgery to close it - something that I'm against at this time, since I just do not see a great enough benefit from it. All other possible contributors are normal, such as BP, weight, exercise and activity, nonsmoker, nondrinker and so on. Idiopathic comes to mind.
     I do have the problem with sleep apnea. The other night an episode was so prolonged that (and this may seem weird) it seemed as if I was being sucked out of my body and was being pulled upward toward the ceiling. Yet, the past 2 days I have felt great. I can actually think and function normally again! I was taken off the diuretic (40mg Lasix) last week. I remain on 10mg Zestril. I am also taking a multi-vitamin, as well as 15mg of CoQ10. They have also suggested that I lower my salt intake, and since I'm also a competitive swimmer, that I reduce my exercise regimen to walking only at this point and time.
     Anyway, I'm delighted that I have found this board. I have a million questions for all of you as well as my new doc. First off, what is "mild" cardiomyopathy? Is that like being just a li'l bit sick? Should I be less concerned? I'm frightened and confused, even though I'm doing so much better than I was a couple of weeks ago when I ended up in the ER and found it difficult to walk from one side of my apartment to the other without fainting. Joe C, Atlanta, age 34, EF 40. Chief23@aol.com


Eva, December 2, 1999 - Hello, I have been reading the posts for about a year and can relate to the them personally. My systems have greatly improved since last March, after my doctor found out he had me on a triple dose of prinivil by mistake. Since then I have been enjoying myself and my life a lot more. I have started to work out at a wellness center. I walk for 45 minutes and lift some weights. I am not on SSD - I was turned down twice. Like so many of us, I cannot get my weight down to an acceptable size for me. I would love to know how to manage it better, but cannot lose even one lb. If anyone has a formula for weight loss, will you please share it with me? Sissy. Cisssy99@aol.com


Kathleen M, December 2, 1999 - Hi, I have been reading this board for about a year. It has been a great source of information and comfort to read what others are going through. This is the first time I have posted however. In October of 1998 I was diagnosed with IDCM and CHF with an EF of 20%. The EF determination was made from an angiogram and also a cardiolite test. From reading here I can tell that I was put on all the right medications. Recently I had a MUGA that indicated my EF has returned to normal at 65%. My cardiologist took me off Aldactone and cut my Coreg dose in half to 12.5mg twice a day. My other meds of Cozaar, Digoxin and Lasix stayed the same. I have an appointment with him on December 11, but I wondered if anyone here had this happen to them. What does this mean? Could this be caused by medication working as it should or could I actually be getting better? I still experience bouts of tiredness and have puffy ankles. Any response would be appreciated. Thanks, Kathleen. kavern@juno.com


Phyllis W, December 2, 1999 - Hi, I am on Capoten and the cardiologist I have been seeing prescibed the generic form Captopril. I used a generic form a couple of years ago and had trouble. I forgot to tell this cardiologist about the problem I had in the past with the generic form. I was wondering if anyone else has used generic drugs in any form for CHF. If so did you have any problems with it? Thanks. Phyllis. pwatjen@vincennes.net


Susie O, December 2, 1999 - Hi Jon, It looks like you aren't sleeping again. I hope this is not often, like before. I like the new look you make on the site. I hope you and your family have a wonderful and blessed holiday season. mrpaco975@aol.com


Jon's December 2 reply to Susie O's December 2, 1999 - Howdy doo, Susie. The site's new look happens every year around this time and it will change back to the same old look right after Christmas. <g> My sleep is up and down but at least I had 3 wunnerful weeks in a row of perfect day/night-wake/sleep periods. I enjoyed it.
     I seem to have gotten a bit wiser while trying to cope with the fatigue and lack of schedule. For a long time, I prayed that my circumstances would improve; I asked that my CHF would get better, that I would sleep at the right times, that my leg and foot pain would go away, and so on. The Bible has finally penetrated my thick brain and led me to ask for help coping with my circumstances instead of asking God to out and out change them. After all, Jesus said, "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." (John 16:33). Note that Jesus said I will have troubles, not might have them. <g>
     Now, I know that God can change my circumstances, and He has. He caused me to stop smoking. Maybe the troubles that seem so difficult to me are simply God placing me on His grinding wheel and sharpening me for that time when He wants a good sharp tool ready at hand. Paul had a chronic illness too, you know. He asked the Lord 3 times to heal him. God said, "No." Period, end of dicussion. Paul didn't flinch because he knew God had good reason to say no. Paul relates, "For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2nd Corinthians 12:8-9)
     So I learn to think more like Paul, who said, "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed." (2nd Corinthians 4:7-9) Jesus gives me the peace mentioned above and that allows me to cope with my problems. I realize that I can deal with whatever comes my way as long as I lean on Christ the whole way, and I now pray for the wisdom to do so. After all, Paul also said, "For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day." (2nd Corinthians 4:6) So now I focus on coping with my problems through Christ when I know I can't solve them myself. Amazingly, this often leads to those problems disappearing, if not permanently, for substantial periods of time. Or maybe, I just stop letting them get me down. Jon.


Jon's December 2 reply to Joe C's December 2, 1999 - Hi Joe, Your doc probably means that your heart disease has so far left you in functional heart class 1 or 2, as opposed to class 3 or 4. In other words, you are still able to keep on with your regular life as long as you ease up on extreme exertion, take your meds, change to a low sodium diet, and so on. While this might seem a huge lifestyle change to you - and it is - it is minor compared to those of us who have had to quit our jobs, fight for Disability benefits, stop most of our driving, traveling, shopping, recreational activities, and so on. You can find info on heart classes at The Manual.
     You do need to pursue the cause, type and extent of your heart disease. Find out if you have any coronary artery disease (blocked arteries) that may require testing and treatment, whether you have had toxins in your system that damaged your heart (excess alcohol, chemotherapy, etc), if you are at higher risk for arrhythmia or stroke due to your slightly weakened heart, if your doc thinks this can progress to a more serious extent, and so on. Research treatments, make the suggested changes in lifestyle, and accept the fact that you are now less able to do as you please, while at the same time being grateful this showed up before it was so bad it hammered you 6 feet into the ground. <g> It's sort of a matter of perspective. It's up to you what view you will take. Jon.


John Len's December 2 reply to Thelma C's November 28, 1999 - Hi, Try this forum for sleep apnea. There is a lot of support and answers there. www.sleepnet.com/wwwboard/forum9.html. John. a_lenny6@hotmail.com


Jon's December 2 reply to Marinus Tenhaaft's November 25, 1999 - Howdy doo, Marinus. Generally speaking, sodium is the level of sodium chloride in the food we eat. Sodium is the main ingredient in salt, and is found in high amounts in most processed, packaged foods. It causes the body to retain fluids, so we take diuretics to lessen this tendency and monitor our diets to keep our sodium intake at an acceptable limit, usually less than 2 grams a day. It is very important since it lessens the work our weakened hearts must do each day. Jon.


Leland Y, December 2, 1999 - Hi Jon, Great music to listen to as I read the posts. Thanks again for your thoughtfulness. It's going to be great to look forward to Christmas again and again and again. Your site has been such a wonderful lift for my down days, and for everybody else, hopefully. Thx. Leland. LLYEE@surfside.net


Betty S, December 4, 1999 - Hi everyone, I haven't posted for a while. I would like to ask for prayers for me. I am going to have surgery (gastric bypass) next week on the 9th and I really believe in the power of prayer! The cardiologist had to approve me for it and I had a MUGA a few weeks (yucky). I felt like they ran over me with a truck but I felt better later in the day. Anyway, I was approved by all concerned with my health and am going forward. It is my answer to my weight problem.
     To Joe C, I have mild to moderate cardiomyopathy also with an EF of 43%. No one ever told me about CHF at the time. I think the cardiologist was afraid I would get hysterical but I I learned a lot from this site. I feel that at this time, I can go into the doctor's office with intelligent questions and I also know to ask for certain things and watch so that nothing is overlooked in my treatment. I have swelling in my ankles and get short of breath at times but otherwise have been feeling ok. I do get tired but I also work 45-50 hours a week and have 3 kids still at home! Jon, I love the changes to the site. God bless. Betty S. eswerda@ucsd.edu


Bev T, December 4, 1999 - Hi everyone, Well, what a Thanksgiving I had! We went to our cabin in the mountains and on the second day, my foot slipped off the deck and was wedged between the deck and a good sized rock. Guess what gave? I broke my ankle! Hobbling on crutches and not being able to shop for Christmas is a real challenge. Enough of my woes.
     I have a question and I know I've read something here. I found a new friend who also has DCM. She is swelling in the stomach and her surgeon and a cardiologist have told her it has nothing to do with her heart. Aren't there folks out there who retain fluid in the belly rather than the extremities? Do you have any any suggestions? She has an appointment at a university hospital next week and would like some intelligent (pointed) questions to ask the new doctor. Thanks and have a blessed holiday season. Bev T, age 56, EF 20%. Mtnmama008@aol.com


Dennis Bitton, December 4, 1999 - Hello, This is my first post. I'm wondering about waking up every morning with hot and cold spots somewhere on my body, at the same time. I had the same sensation this summer and fall, and now winter. I even had it while I was living just north of the equator in Venezuela. I've had CHF for 2-3 years now and remember reading something about not being able to sleep too long, maybe something about maintaining a horizontal position. Is that what causes these sensations? Do all CHF patients have short nights? How many take naps every day? That's all for now. Thanks, I appreciate the investment all of you are making in each other. d-bitton@srv.net


Gwen Sanders' December 4 reply to Kathleen's December 2, 1999 - Hi, In the last year and a half I have also greatly improved. I started out with an EF of 17 and immediately started on the the steps to getting a transplant. During this time they started me on several meds, but the one that helped the most is Coreg. I am now on 25mg twice a day and they will be working me on up - 37.5mg is their goal for me. I am, needless to say, a very big girl and that is why they are increasing it to the higher dose. My pulse is still in the 90s and my blood pressure still runs a little high. When I started out, I could barely walk to the bathroom and had been misdiagnosed for 6 months. I had to sleep sitting up. As they increased my meds, my EF slowly went up to where it is now at 51%.
     I just had a visit with the transplant doc and he now only wants to see me for a yearly check. He told me no matter what, to not go off Coreg. I have been having a terrible time concentrating, to the point that I ran a red light at 5:00 in some of Seattle's worst traffic. God was watching out for me. I didn't even get a scratch. The doctors say my heart is now smaller and is functioning well, but I don't feel as good as they say I should. I still have no energy most of the time, but I am very grateful to have any burst of energy I can get. I now plan way ahead of schedule. If I know I am going to be doing some shopping or such, I rest up the day before.
     I wonder sometimes if it is the meds that make me feel so tired. I am on Cozaar, Coreg, Lanoxin, Lasix, Norvasc, aspirin, and several different vitamins. God bless everyone, and be careful to not overextend yourselves this holiday season. Gwenddot@aol.com


Joe S' December 4 reply to Jon's December 2, 1999 - Amen Jon, what a testimony. We are supposed to die die to self and be reborn into a new creature. When this happens, our old self is to have no meaning to us anymore. Of course, Paul also says (Romans 7:15), "For that which I do I allow not: for what I would, that do I not; but what I hate, that do I." (Romans 8:1) "There is therefore now no condemnation to them which are in Christ Jesus, who walk not after the flesh, but after the Spirit." This fleshly self is with us and we will continue to battle its infirmities and lusts. What a battle it is, but as your note said, through Him we can conquer anything. Joe S. jes@Stevensonlighting.com


John's December 4 reply to Eva's December 2, 1999 - Hi, I was just put on Xenical, a drug which traps about 30% of the fat in the stomach and intestines, and does not allow it to be absorbed. I have been on it only a month but inspite of going on a cruise, I lost 4 lbs. I will update you if it is successful in meaningful weight loss, however it is very expensive at $120 per month, especially with all the other meds we have to take. jbott4015@aol.com


Kay, December 4, 1999 - Hi friends, I recently heard of a new medication trial, but can't find out any more about it - enbel. Has anyone else received any further info on this medication? I would appreciate any info available. Thanks, Kay. bobruiz@surfsouth.com


Ledeva, December 4, 1999 - Hi, I love the music! This is my first year here, so it was a suprise. Jon, you're the best! Achitw4617@aol.com


Shirley, December 4, 1999 - Hi, I have yet another question for all the incredibly helpful people at this site. I wonder if there are any other people who have gone back to work while receiving SSD, and how they managed. While I normally don't feel too bad despite having DCM with an EF of 35%, I am concerned about the problems with those days that I feel like I hit a brick wall. I never know when I will have one of those days and am concerned as to how I will manage to go to work on those days. I haven't worked outside the home since I was diagnosed with leukemia (AML) 8 years ago. I received SSD then because I was considered terminal and remained in that category for 3 years. About the time of my Disability re-evaluation, the rest of me started falling apart as the result of the chemo treatment, so I have remained on SSD. I am a freelance non-fiction writer and co-author of "Cancer SOS: A Guidebook for Women with Cancer" but I don't make a steady income from my writing, hence the flirtation with the idea of a part-time job. I actually have an interview on Monday. That's amazing in and of itself, considering my resume is pretty barren for the last 8 years! Any advice would be welcome. My husband thinks I'm trying to do too much, but I would so love to ease our financial burdens! Fighting cancer was expensive. Shirley. srgrandl@snet.net


Jon's December 4 reply to Bev's December 4, 1999 - Hi Bev, I am one of those lucky people who swell in the face and stomach instead of the legs and ankles; Every time. My doc confirms that this is CHF. A CHF specialist who knows his stuff will carefully feel your neck (jugular) vein to see if it is extended and if so, to what degree. This will tell him if you are retaining fluid due to weak heart pumping action. This phenomenon is also verified by Dr. Marc Silver in his best-seller, Success With Heart Failure, pages 32, 89 and 196. So tell your friend not to let a doc blow off her stomach swelling as something miscellaneous. It can be and often is a CHF symptom that requires increased diuretics, sometimes by IV since oral diuretics are absorbed through the stomach lining, which in this case is swollen, preventing proper drug absorption. Jon.


Jon's December 4 reply to Kay's December 4, 1999 - Hi Kay, I believe you are seeking the Enbrel trials. It is a drug first developed to treat arthritis and is now being tried in CHFers. I sent out a mailing on it awhile back, which I will include here. Please note, everyone, that you can download all previous mailings, as well as a truly excellent set of health care Urls from this page. If you put these text files in one directory on your computer, you can use any word processor to do searches for the key words you want. Kay, you can read more about TNF blockers at New CHF Meds and Heartbytes (let the pages completely load & they will go right to the article you want). You can find drug trial info through the Links page. Jon.

     "March 31, 1999 - Researchers at UPMC Health System's Cardiovascular Institute are participating in a phase 2-3 trial of a genetically engineered protein to treat heart failure. The protein, called Enbrel, controls a naturally occurring substance - tumor necrosis factor (TNF), that causes inflammation and heart damage.
     The trial is based on positive results of an earlier study presented March 8 at the 1999 conference of the American College of Cardiology. Results of the multi-dose Phase one safety study of 47 heart failure patients showed that Enbrel was well-tolerated. The study was done by Douglas Mann and Guillermo Torre of Baylor College of Medicine and Arthur Feldman, director of UPMC Cardiovascular Institute. Dr. Feldman said, 'Enbrel represents the first time that genetic engineering has been used for CHF. If studies in humans duplicate the animal trials, this will be a breakthrough in CHF treatment.'
     The patients in the first study showed consistent improvement in their ejection fraction and overall quality of life. Called the RENAISSANCE (Randomized Enbrel North American Strategy to Study Antagonism of Cytokines) trial, this trial will include 900 patients from heart class 2 through class 4. A companion trial named RECOVER (Research into ENBREL: Cytokine Antagonism in Ventricular Dysfunction) will be done in Europe and Australia.
     Research has shown that TNF, an immune system protein, is present in increased amounts in damaged heart tissue. When TNF binds with TNF receptors on cells, it sets off a chain of events that may further damage the heart. Enbrel is genetically engineered to bind to TNF and prevent it from interacting with receptors on the cells of the heart and circulatory system.
     Enbrel was developed by Immunex Corporation and is marketed by Immunex and Wyeth-Ayerst Laboratories. Patients with congestive heart failure who may qualify to participate in the study may call Dr. Feldman or Virginia Schneider, R.N., nurse coordinator for the study at 412-647-1666 or 412-647-6882. For more information, contact: Frank Raczkiewicz -raczkiewiczfa@msx.upmc.edu or Jennifer Bielata - bielatajl@msx.upmc.edu of UPMC, 412-647-3555 or Fax, 412-624-3184, University of Pittsburgh Medical Center, Pennsylvania.
     Enbrel has already been approved by the FDA for rheumatoid arthritis. Long-term effects of Enbrel are unknown. Patients with any serious infection should not it. If patients develop a serious or unusual infection while on Enbrel, they should talk with their doctor immediately."

Ginger, December 5, 1999 - Happy Holidays all, I want to thank you for your continued support and prayers for my sister Karen. It was nice to see a few of you when I popped in at chat the other night. My Web site is moving and I just thought I would give those that want it the new Url. It will be www.heart-help.net. The old one will remain till the middle of the month, I think. I haven't done anything to it in a long time time but I will get back on track with it one day. To those that are linked to me, I will try to e-mail you this news but I am hoping you will read it here as my time on here is so limited right now. I have to go. Stay well, ya'll. Hugs, Ginger. mystery@laker.net


Harriet's December 5 reply to Jon's December 2, 1999 - Hi Jon, You are right on about praying that we can cope with our infirmities, whatever they are. Two nights ago I absolutely could not go to sleep because of leg pain and burning feet and hands. I got so discouraged and down about it. I was in agony and depressed and really feeling sorry for myself. The next day I went swimming as I do every day, but now at a county-run facility. I had to really make myself go. When I arrived and got into the water, there were several mentally retarded adults there. I used to work with these people and was humbled by their presence, but my heart really got snapped when I passed by a man in the water who had no arms from the elbow down and no legs from the knees down. God really knows how to get my attention. Have a good night everybody. hprince57@aol.com


Leanne's December 5 reply to Jon's December 4, 1999 - Hi Jon, I am Bev's friend that has the swollen stomach. The doctor said the only way to make my stomach decrease in size is through medication. Mine will slowly go down if I lay down as soon as it gets tight. Is it true that the only way for your stomach to decrease in size with CHF is with meds? llongo@sum.net


Jon's December 5 reply to Leanne's December 5, 1999 - Hi Leeanne, It depends entirely on whether your stomach swelling is in fact due to weak heart pumping action. If not, you need to discover the real underlying cause and get treatment for it. If so, a low sodium diet and fluid intake restrictions might be sufficient. Perhaps you should restrict your sodium intake to 1000mg or less each day rather than the more common 2000mg limit. Try keeping your drinking (including soup, puddings, etc,...) to less than 2 liters per day. See The Manual and Kitchen Corner for more info and ways to help achieve these goals.
     If these methods alone are not enough, you may need oral diuretics. If oral meds don't work well due to swollen stomach lining hampering their absorption, you may need either IV diuretics or a drug to make your heart beat with more force, called inotropes (inotropic drugs). These have drawbacks, but certainly do their job. These are all things to look into, but absolutely, definitely, without doubt, the most painless is the low sodium diet with fluid restriction route, so try it first, with strict control. Jon.


Margie F, December 5, 1999 - Hi dear friends, I need some prayers. I've been in the hospital again. I took a a ride in an ambulance after some heavy duty chest pains. It was really scary hearing them talk about getting the paddles ready. I made it, though. They did another cath and I have had more heart damage. I'm supposed to go to John Hopkins as soon as I get an appointment for transplant evaluation. Lee, I guess this was why I was feeling so bad the last few weeks. I'm really tired, so I'll close for now. Thank you and Dina, for your concern. I'll try to keep you up to date on my progress. Margie F. MFisher238@aol.com


Phyllis A's December 5 reply to Bev T's December 4, 1999 - Dear Bev, I'm also a CHFer who retains fluid in my belly and face. Tell your friend it is indeed a symptom of CHF. phylcasurv@msn.com


Tom S, December 5, 1999 - Hi, It's nice to see we have made it one more year to enjoy the Christmas "concert." This marks my fourth year and I was glad to see the post concerning abdominal swelling and CHF. Prior to the onset of the worst symtoms - massive swelling of my legs and other body parts - I had noticed that my gut would swell during the day and become very hard. I kept trying to tell my wife and doctor that this was not normal and while my wife bought into it, my doctor(s) did not. Lately I have had the same problem, making not only my cardiologist but medical doctor believe that I am retaining fluids in the gut rather than legs. They will not accept this as being part of my CHF. My gut still yo-yos from expansive to not so large and I can lose upwards of 10lbs in a single day if I have a bout of the trots, which I actually welcome at times. It was the firmness of gut that first tipped me off that this was not just fat. Adipose tissue generally has a mushy feeling to it and can be maneuvered somewhat by manipulation. Thanks for helping me confirm what I had always suspected. Merry Christmas to all and onward to the year 2000. biggerbhoy@hotmail.com


Arnold S, December 7, 1999 - Hi, I also have CHF. I take Coreg and it makes me really tired. I am going to ask my doctor for something else. GJSACS1@prodigy.net


Ben B, December 7, 1999 - Hi, For a good summary of CHF information, try http://content.health.msn.com/content/dmk/dmk_article_40018. I particularly like this quote, "Although the high mortality rates reported by most studies are discouraging, results of most have not yet reflected the effects of the newer medications, such as ACE inhibitors and beta-blockers, that appear to be improving survival and slowing heart deterioration. A recent study, in fact, has reported a decline in death rates in people with heart failure over the past decade."
     bdbrinkman@ieee.org


Jana B, December 7, 1999 - For everyone with Internet friends:
 
I had a dream the other night, a dream I need to share
I dreamed I died and left this world, without saying that I care.
I know we met in cyber-space and we're friends upon the Net
But do you know, did I ever say I am so happy that we met.
You are a very special friend, you mean the world to me
I can't imagine not knowing you or how my world might be.
You have added oh soooooo much right from the very start
But did I ever tell you how deep you're in my heart.
When I needed "something" I could always turn to you
I only had to say the word and for me, you would come through.
We shared so very many things that only we can know
But through this interchange of thoughts the group of us did grow.
But in my dream, I left this world so I never got to say,
How much I really cherished you in so many different ways.
And it was now too late, for I had gone away
I never said, I love you, when we parted that last day.
So in case my dream comes true and we never meet again
I love you now and always will
Thanks for being my sweet friend.
Remember, when it's time for you to come this way
I'll be waiting on this side
For only love is real, dear friend
And our friendship never died!
 
JByers4u@aol.com


Michael T, December 7, 1999 - Hi, I enjoy the site and have been reading for a little time now. The Manual was a big help. I caught a virus that attacked my heart last June. After spending almost a month in the ICU, I was released. My ejection fraction at the start of my illness was 3-10% and I was put on the transplant list. They put an aortic pump in me to keep me going when things were really bad. The pump entry point caused a clot in my leg and I almost lost my leg. I am still recovering from nerve damage to my leg.
     I achieved an EF of 27% when discharged. My heart remains enlarged. I am in a-fib and was unable to be cardioverted after 3 attempts throughout my hospital stay. My doctor is making me wait until February to try cardioversion again and will perform a MUGA test slightly before that time. Is this a reasonable approach from your experiences? I experience most of the symptoms that are expressed by others here. I am still battling the psychological effects of my situation and diet adjustments. I keep sodium under 2mg per day and don't require a diuretic. I thank God I am alive and appreciate every minute of life now. I try to exercise 4 times a week to keep fit and lose weight.
     My list of medications include: 50mg Coreg twice a day, 10mg Monopril, 0.125mg digoxin, 5mg Coumadin, 360mg Tiazac, 200mg Pacerone, 25mg Aldactone, and aspirin. Is anything missing or do you have any recommendations? My doctor is thinking of switching me from Monopril to ramapril - any experience with that drug would be appreciated. I am looking forward to contributing to the community. Thanks, Michael T, age 32. miknren@mw.mediaone.net


Missy, December 7, 1999 - Hi, This is my first time on this Web page. I'm 31 years old and have had CHF since I was 14. It is a result of chemo (adriomiacine) treatment for a Wilms tumor when I was 5 years old. I am currently on many drugs, as I'm sure the rest of you are too - Lasix, Lanoxin, Vasotec and potassium. I have my good and bad days also. My everyday exercise is riding and showing my horses. It's great; they are my legs when I get tired. I'm currently on the adult dose of Vasotec. When I first started taking it 6 years ago, it was like a new lease on life, but it's not working as well now. Are there any new drugs out there to try? My cardiologist is at Ohio State. Please let me know. I also have a weight problem. I am underweight, so I can eat anything I like. I also have several other health problems. Missy. miniarabs@1st.net


Ranelle, December 7, 1999 - Hi Everyone, I have another problem with Coumadin and I hope some of you will tell me your experiences. I won't go into the whole story, but last week I went in for a Pro-time check and the doctor wanted me to up my Coumadin to 5mg a day. I have been taking 5mg on Monday, Wednesday and Friday, and 2.5mg on the other days. Every time I go to 5mg a day, I have problems, mostly with my vision. I decided to give it a try again and sure enough, after 2 days I started having the same old problems. I am thinking about trying (once again) to talk the doctor into trying me on aspirin. I have a few questions before I call him.
     Will I still go in for Pro-time testing every 6 weeks? What is the usual dose? Have any of you experienced similar problems with aspirin? I will appreciate any input anyone can give me. rcdrb@aol.com


Kathleen M's December 7 reply to Gwen Sanders' December 4, 1999 - Thank you for responding to my question about getting better. Guess what, I live in Seattle also! It turned out my appointment with my cardiologist was 12/6. It is interesting that as much as he does not know what caused me to have DCM, he does not know why I have become better. I asked him if I went off all the drugs, if my EF would start to decline. He does not know. So I am staying on everything, just reducing the Coreg again because it is the one that causes the most side effects. I believe that I am experiencing this because of lessons I can learn to make me a more compassionate, patient and caring person. I also think the Lord wants me to know that He is in control, not me. I will continue to read this board as I feel such a kinship with all of you. kavern@juno.com


Doug K's December 8 reply to Ranelle's December 7, 1999 - Hi Ranelle, I also take Coumadin. I take 8-10mg a day, plus 81mg of aspirin with it. The dose depends on the person taking it. That is why they need to check your Pro-time every so often. I go about every 2 weeks for a Pro-time check, so it can vary. I occasionally have TIA symptoms despite the Coumadin, so hang in there. Good luck. dgknuth@earthlink.net


Ginger, December 8, 1999 - Hiya's, I went for my yearly echo. It came back good and so-so. My EF remained at 55, which started at 30, for you that want to know if EF can go up. Now though, because I have constant high BP, I have mild left ventricular hypertrophy. The doc says if he can get my BP under control and keep it down, this damage can be reversed. So I guess we wait and see. I know this echo is a lot better then some of yours and I am thankful God has given me the strength to do the things I must but I will admit at being disappointed to find out my BP was causing damage. Anyhow, he upped my Ace inhibitor to 30mg a day instead of 20, and hopefully that will help. My sister Karen is back in the hospital for 3 days. This is a tough time for her, so please keep her in your prayers. Cya's at chat when I can. Hugs, Ginger. mystery@laker.net


Linda M's December 8 reply to Arnold S' December 7, 1999 - Hi, I am also giving up on Coreg or at least cutting back. I have been on 25mg once a day for about 7 months now and I feel worse as time goes on. It has really affected my sleeping. Sleeping pills don't even work with it. If I take it in the morning, I feel terrible all day. I have tried so hard and so long for it to work. I know how good it is supposed to be, but I can't keep on this way. I'm going to the doctor next week to find out what my options are. lmessia@home.com


David, December 8, 1999 - Hi, About 5 weeks ago I was diagnosed with CHF, quite an emotional and psychological shock. Apparently my years of allergies and childhood pneumonias took their toll and later in life masked my CHF. Yes, I had the swollen ankles, full feeling in my stomach, lack of breath, etc,..., but even before this I was having problems with pain in the muscles of my chest, back and hips, as well as many of my joints. When I lay down at night, the body area I am lying on hurts so bad that I must move. Sometimes the pain stays with me all day or into the next day, so general motion is a strain. I am not a doctor, but could it be that my muscles are experiencing oxygen deprivation which leads to pain, especially at night? This symptom has not disappeared but temporarily goes away if I am taking any type of cortisone for another illness. Then, after the cortisone wears away, I am back with all the muscle pains. I am only 45 and hope these symptoms are not linked to arthritis. Does anyone have any ideas? I have done a lot of reading about both traditional and alternative ways to combat CHF and have gained some insights. dmcdonald@inetlmu.lmunet.edu


Jon's December 8 reply to David's December 8, 1999 - Hi David, I would guess you have an inflammatory condition of sone kind causing your pain. It does not sound like CHF and if cortisone relieves it, inflammation is a pretty good bet. Unfortuately, I have had lots of past experience with such steroids and that experience leads me to the inflammation guess. Jon.


Bill D's December 8 reply to Arnold S' December 7, 1999 - Hey Arnold, I went to my cardiologist's Nurse Practitioner today. I was beefing about how the Coreg made me dizzy by dropping my pulse and blood pressure. I told her I was going to cut it down again. She asked me if I was taking my ACE inhibitor at the same times I took the Coreg. I said I was. She said I should not take them together. Take the Coreg with food at breakfast and dinner. Take the ACE inhibitor at lunch and just before you go to bed. ACE inhibitors don't require food with them. She also told me that studies have found 25mg of Coreg is 80% as effective as 50mg. It's nice to have someone who listens and answers all your questions. Bill. billdog@gate.net


Julie, December 9, 1999 - Hi, I belong to an HMO. I have one choice of cardiologist. He cannot spell CHF. His assistant is slightly better but not much. I ask questions, I get a blank stare and they appear to be impressed about how much I know but they offer no help. I have quit going to my appointments. I do take the meds which have been prescribed at my suggestion, such as Coreg, diletin, Lasix, ACE inhibitor, etc,... Anyway, after my MUGA, the cardiologist told me to quit work and not to travel in airplanes. My EF is 12. I am still doing ok at work and am doing a little babysitting with my granddaughter. I am 55. She is 3 and still likes to be hugged and picked up.
     My question, after all this rambling is, My church is planning a trip to China. It is a 15+ hour trip on the plane. Has anyone else done a trip like this with a low EF? I know I will not be able to climb the Great Wall but I really am looking forward to the trip. What do you think? Obviously I have no faith in my doctor. julie3350@mydeja.com


Sherrell S' December 9 reply to Arnold S' December 7, 1999 - Hi, It took me 8 months to start to feel better after beginning Coreg. I started at 12.5mg twice a day for one week and then straight to 25mg twice a day. I was ready to give up, then one morning I woke up feeling better and have been doing okay since. There was no improvement in my EF at the one-year mark after beginning Coreg but at least it did not go any lower. Sherrell S, age 43, DCM, EF 25%. sherrellgay@juno.com


Jon, December 9, 1999 - Hi everyone, Does anyone here using Webtv participate in chats? If so, please e-mail me here. Most Webtv users seem to have big problems with Java and cannot get Java chat rooms like mine to work. I need some help! Jon.


Sherrell G's December 9 reply to Bill D's December 8, 1999 - Hi, I had to adjust my medications that way too, Bill. I take my Coreg in the early morning and at dinner at night. I take my Cozaar at lunch time. Since I started that regimen, I definitely have less lightheaded experiences. Sherrell. sherrellgay@juno.com


Tom S, December 9, 1999 - Hi, One of the often forgotten "side effects" of CHF or almost any dibilitating disease for that matter, is depression. Sometimes you don't even know that you are suffering from depression because it is masked by activity or other emotional situations of the moment. When you finally are truly alone with nothing but your thoughts (bed time for example) depression can strike and you aren't really aware what it is. I scoffed at the idea of depression when I had a serious bout of insomnia and asked my medical doctor for advice and that was her diagnosis. Then she outlined some of the symptoms of depression and I could see where she made a very valid diagnosis. Just knowing the problem sometimes helps with the cure and lately I have been having much more restful nights to the point where I am sleeping like the dead until my bladder fills to overflowing. I am not taking any medication to aid sleep, I just analyzed what was the root of my depression and realized how stupid I was dwelling on negative aspects of my life and not the many positive things around me. biggerbhoy@hotmail.com


Joe S, December 9, 1999 - Hi, Today is my third month anniversary in a high dry climate, moving from the wet damp climate of Caliornia's central coast. I am happy to report that I haven't felt this good in years; No more waking up wheezing and coughing. Also, it is now my 56th year with serious heart problems and despite a very restricted life style, I am still here and feeling well. I know my situation is nowhere near as bad as many of you, but it was serious enough I could never run or participate in any sporting activity. The main thing I have learned over the years is that exercise, as long as it is not exhausting, usually is quite good. See my bio. I've also learned that when anything serious happens, and it still does now and then, to immediately lie down and simply pray, and keep remembering that this too shall pass. So hang in there everyone, it ain't as bad as many say it is. Joe. Jes@Stevensonlighting.com


Rick M's December 10 reply to Julie's December 9, 1999 - Dear Julie, I think you should let your church group go to China and send you postcards. With an EF on the low side, you would have a very uncomfortable time spending 15 hours in the low oxygen air of an airplane, with no chance to move around and get your blood moving, only to arrive in China, which has the worst air pollution in the world, as well as one of the mother of all HMO-type medical systems. Don't forget, it's also a 15 hour flight coming back, and when was the last time a 15 hour flight took 15 hours? The last time my son went, his flight took 2 days. rearadml@iu.net


Missy, December 10, 1999 - Hi, Is anyone taking the CoQ10 supplement? I just read up on it. Does it really work and what is the average dosage? I'd like to try it if it works. miniarabs@1st.net


Donald Gazzaniga, December 10, 1999 - Hi, You can get a complete low sodium Christmas meal menu with recipes by going to this page and and clicking on the "Favorite Recipes" button. Merry Christmas, everyone. Donald Gazzaniga. don@megaheart.com


Ben B's December 10 reply to Julie's December 9, 1999 - Hi, I tried to e-mail you personally but for some reason my mail wouldn't go through. I don't want to say one way or the other what you should do, but just to answer your question if anybody else had done it. Yes, I travelled to Taiwan (very close to China), Europe and the Philippines all in a year and a half after my diagnosis but before I found out how sick I was. My doctor was a lot like yours. Everyone functions differently with different EFs. My Taiwan trip was around the time my EF was 10-15%. On the way over there was hardly anyone on the plane so I got to lay down but on the way back it was very crowded. When I went to the Phillipines, it was during the Northwest strike. It took me 23 hours to get home, changing airports 3 times. It was tough but I made it. My EF was probably arond 20% at the time. Since these trips, I found out how sick I was supposed to be and lo and behold, went through a period when I felt like I couldn't do anything. I have finally come out of that.
     Of course, only you know what you can handle but for me, I am really glad I went on these trips when I had a chance. This is just my experience, I'm no doctor! Rick M is right about a couple of things for sure. China is a little more backward than these countries medically, so this is another consideration, plus everbody rides scooters and the pollution is horrible. bdbrinkman@ieee.org


Candy P, December 11, 1999 - Hi, I can't remember who posted about our weak bodies but it sure fits when it comes to me. I just found out I have cancer. The doctors are running all kinds of tests to determine where it's located in my body. It could be uterine, which is good for me because if it is recurring cancer, I am in trouble since I will need chemotherapy, which is not a good thing for people with cardiomyopathy, congestive heart failure, and on lots of heart meds. I need to be anesthetised for them to poke and prod on my body but first my oncologist needs to talk to my cardiologist to see if he can put me under. I'm sure I can go under since I had major surgery in September but I sure am getting frustrated already.
     Since August of 1998, I've had cardiomyopathy, congestive heart failure, periheral vascular disease with major surgery, and I found out I only have one functioning kidney as a result of the vascular disease. Now I have this. My poor old body is being greatly tested. I sorry to bring all this up but I want this heart to hold up and be strong one more time. Thank you for letting me vent. God bless you all. GrPota@aol.com


Jamie S, December 11, 1999 - Hi, I have been asked by the community health coordinator of the local hospital to come up with a little brochure, which will be placed in hospital rooms on the cardiac floor right next to the Bible. It will be filled with things to help people who have just had a life-altering event. I am going to provide a list of things to ask your doctor and a list of resources for when they get out. I just wanted to get input from others on what they wish they had to read while they were in hospital that maybe would have made things a little clearer, and what questions you would have asked had you been able, or anything else you can think of that you wish you had. That way I get different views so I can make sure I reach as many people as possible. Remember back to that first hospital visit or to where ever you were when you got "the news" and how after the visit is when all the questions came into your mind. Thank you for your time. May your body, mind and spirit be peaceful. Jamie S, age 29, PPCM, ablation. JamieDan@prodigy.net


Cindy M's December 12 reply to Jamie S' December 11, 1999 - Hi Jamie, What a worthwhile project you are working on! To answer your question of what I wish I'd known at the time of my diagnosis, there is one really big thing. Heart failure does not necessarily mean immediate death. When I was told I was in heart failure, I thought it meant that I was going to die, right there in the hospital. I was terrified, as were my loved ones. Also, because I was admitted in rather bad shape with an EF of 10%, the staff cardiologist told me that I may need an immediate heart transplant. More terror, and since he was the "expert" I never thought to question him. It wasn't until weeks later and after much anguish, that I saw a heart failure specialist who was much more interested in improving my condition non-surgically. If I could advise you what to put in the pamphlet, it would include reassurances that there is hope, and as soon as the patient is well enough, to educate themselves about their condition. cleighmc@aol.com


Michael T, December 12, 1999 - Hi, I went to exercise on Thursday and felt pressure on my Adam's apple, like somebody was pressing it. It stayed with me all night. I never had this feeling before and told the rehab nurse. They gave me an EKG and saw that my T-wave was slightly inverted. I went to see my doctor the next day and he felt there is nothing wrong with me. He felt the T-wave change could be related to how the leads were placed. He performed another EKG in his office with he same T-wave inversion. He told me it is nothing to worry about and to call him if it returns. Has anybody else experienced something similar? Does anyone have experience with T-wave inversion? Thanks, Michael T, DCM, a-fib/flutter, 27% EF, age 32. miknren@mw.mediaone.net


Roger G's December 12 reply to Tom S' December 5, 1999 - Hi Tom, My doctor told me to take Mylanta for belly bloat. <g> That was on the phone. Even after I went in to see him, I had to make a point of asking what he was going to do about the bloating. As I understand, the doctor I am seeing is one of the best cardiologists in the area and I agree because he listens. So he doubled my furosemide and that was the end of my bloating problem. Don't hesitate to press your doctor to do what you think is right. It is your body, your life, and your research that you need to believe in. By the way, my EF went from 18 to 40 after I started to press doctors to do what I thought was right: More furosemide for the bloating, more Coreg to the approved level for my weight (based on research), and so on, but let's always remember, this is a team thing between us and our doctor. We need to work together. I wish you all the best! Roger G. RogerGThree@prodigy.net


Jon, December 12, 1999 - Hi everyone, I hope you like the new Real Audio Christmas music at the top of the page. Try them all. ;-) Jon.


Pat L's December 13 reply to Jamie S' December 11, 1999 - Hi Jamie, That's a great idea for a brochure. When I was first in the CCU, and newly diagnosed, the cardiologist came in my room and looked at the results of my echo and kept saying, "Hmmm, significant damage." He told me my ejection fraction was below 20. It would have been helpful once the fog lifted to have something in writing about what CHF is, what cardiomyopathy is, what EF means and some of the treatment approaches that are available. I kept being given prescriptions for various meds and not once was I ever told what they were for. Now, years later, having found this site and also having got some real good info from a pharmacist, I have been asking, "What's this for, what can I expect, what are the side effects?" of any new med. I also research them myself on the Net! Good luck. Pat. patlat@yahoo.com


Jon's December 13 reply to Jamie S' December 11, 1999 - Hi Jamie, The suggestions have been excellent. The reminder not to rush into transplant is my number one, closely followed by this - and I hope this doesn't seem egotistical - I wish someone had handed me a hard copy of The Manual (adjusted to supply info that is currently hyper-linked). Quite frankly, that's the exact kind of info I would have loved to have in my grubby little paw at the time of my diagnosis. Jon.


Joe S' December 13 reply to Jamie S' December 11, 1999 - Hi Jamie, I think Cindy is right on. When I was first diagnosed with CHF about 14 months ago, the doctor told me I had to have valve replacement within 3 months or I would die. This was before an echo or angiogram was done. After these, which took 3 months to schedule, he changed his views. The best thing in your pamphlet is to assure people this is not necessarily the end of the world. I have lived with serious heart problems for 56 years. Joe S. jes@stevensonlighting.com


Michael T's December 13 reply to Julie's December 9, 1999 - Hi, I don't know the particulars of your situation except for your EF and I know how we all hate to be limited, but I would think a long plane ride (with changing pressures) and a trip to a foreign country could be hard on you. You will be breathing recycled air on the plane and be exposed to a variety of foreign bacteria and viruses you normally would not be. You sound so courageous.
     See how much an HMO will pay for another "out of network" doctor. It is really important to have a doctor you trust, is competent, and is up to date on the latest CHF "happenings" and medications. I have a great internal medicine doctor who is completely up on my situation and CHF in general. Try to find one of these if you are limited to one cardiologist. I see him monthly and he talks and meets with my cardiologist as necessary. My cardiologist is a researcher muckety-muck and is very busy. Take care, Michael T, 27% EF, DCM. miknren@mw.mediaone.net


William S' December 13 reply to Candy's December 11, 1999 - Hi Candy, God puts us to a lot of tests. You just have to put your life in his hands and be ready because he is coming some day to take us all to His perfect world, where there is no pain ever. I put all my extra energies into reading and studing His word. When I feel bad, I think of Jesus' crucifixion and I know I'm going to get through another day. I cannot imagine the pain that man went through when they nailed Him to that cross. The pain He endured for us cannot be explained, so I know He did it for me and you. I pray and thank Him for each day. I know someday I'm going to be with Him in that beautiful place. I'll pray real hard for you, Candy as I do for all the people with CHF. God bless you. sonofsteven@prodigy.net


Helen O, December 14, 1999 - Hi all, I have not posted in a while but have been keeping up with reading everyone else's posts. I have been very busy with school and my health. I do have good news to report. Patrick and I have moved. We now live in Tempe; about 2½ miles from Arizona State University. The new apartment is also closer to Patrick's work. I am within 10 minutes of 2 hospitals covered by my HMO. The new apartment is a ground floor - no more stairs! - the laundry is about 30 yards away and best of all, there is constant access to 4 pools, one of which is heated in the winter, and a small fitness facility. Well, I now need to go study for my sign language final that is in about 2 hours. I have one more final tommorow. Have a safe and happy holiday season. Helen, age 25, EF 25-30. woohoo@mailpuppy.com


Cindy, December 14, 1999 - Hi, My name is Cindy and I am 39 years old. I was diagnosed with DCM last year with an ejection fraction of 20%. This last September my EF was 17%. I would like to talk to anyone with any advice on how you manage your lives. I also had an ICD implanted in October. I am still trying to deal with this. I am on Lanoxin, Vasotec, aspirin, Coreg, & Zoloft for depression. I hope to hear from you and how you deal with your illness. Thanks to all. cggilland@seidata.com


Missy's December 14 reply to Joe S' December 13, 1999 - Hi Joe, I agree with you 100%. We are still alive. My parents were told when I was 5 and diagnosed with Wilms tumor that I would be dead in 6 months. I'm soon to be 31 and have lived through 4cancer and all the wonderful treatment that came with it. I have had CHF since I was 14, plus radiation, colitis, and hypoadrenalism. So don't give up. They can't kill us off that easy. miniarabs@1st.net


Roger G's December 14 reply to Jon's December 13, 1999 - Hi Jon, Don't ever think you are being egotistical with "The Manual." This is the best place I have found to research CHF. I had an echo today and my EF is up to 50-55. I don't know if this is long or short-term but I believe it is due to the information I have gained from all of you here. I learned the right questions to ask and gained the confidence to ask them. Thanks so much! I wish you all the best. Never give up and don't fear! Sometimes I think the freight is enough to scare us to death. I don't know if Jon has a section in "The Manual" on positive thinking but that helps too! I have never given up hope, even when my EF went down to 18. This is the only thing I can give back to repay Jon and the rest of you. Believe that you will get better, never fear and have faith! Roger G. rogergthree@prodigy.net


Jon's December 14 reply to Roger G's December 14, 1999 - Thanks Roger, By the way, a good attitude has now been proven to be important. See this article. Jon.


Phyllis A, December 15, 1999 - Hi, Thanks Jon, for the Christmas music. It is great. Everyone should check it out; really, really great. Thanks again. phylcasurv@msn.com


Duane C, December 15, 1999 - Hi, Last month I took a plane trip from Iowa to my folks in Deleware. When the plane was flying at 13,000 feet, it seemed like I had a hard time getting oxygen. Does anyone know if taking O2 will help this? I am not positive this is the problem, but I had feeling of not enough breath and anxiousness. I was about to ask for O2 a few times but got through it by concentrating on something else. My EF is in the 50s now and my heart has gone back close to normal size but I don't have much go power. Thanks, Duane C. djclink@kdsi.net


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

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