The paperwork never ends The Archives
August 16-31, 2002 Archive Index CHFpatients.com

Kathy 8-16     cold clammy sweats - why?
 
Gracie's 8-16 reply to Shauna Y's 8-10     foot pain, potassium, meds
 
Jon's 8-16 reply to Gracie's 8-16     meds
 
Doug K's 8-16 reply to Sherrell G's 8-12     congratulations!
 
Doug K 8-16     update, glad to see you all
 
Tom S' 8-16 reply to Roz' 8-15     and to Ben
 
Sharon J W's 8-16     silent heart attacks
 
Jon's 8-16 reply to Sharon JW's 8-16     silent heart attacks
 
Richard M's 8-16 reply to Elaine WB's 8-15     grapefruit juice warning
 
Pamela's 8-16 reply to Ben B's 8-15     hey Ian, you're looking good so far
 
Lisa's 8-17 reply to Kathy's 8-16     checking for diabetes good idea
 
Dorothy Powell's 8-17 reply to Pamela's 8-16     how well are you?
 
Mel G's 8-17 reply to Kathy's 8-16     cold clammy sweats
 
Richard M 8-17     what is meant by truly normal?
 
Gracie's 8-17 reply to Jon's 8-16     meds list, hit by a truck & more
 
Jon's 8-17 reply to Gracie's 8-17     meds, end-stage, valve repair & more
 
Jon 8-17     much more later, but,...
 
Ian 8-17     thanks & an update - good news!
 
Gracie 8-17     meds and dogs
 
Joseph P 8-17     living with CHF & more
 
Roseanne 8-17     need someone to talk to
 
Jon's 8-17 reply to Richard M's 8-17     being healthy, well, cured or what?!
 
Caroline S' 8-19 reply to Ian's 8-17     getting better after diagnosis
 
Gracie's 8-19 reply to Jon's 8-17     more details
 
Jon's 8-19 reply to Gracie's 8-19     questions
 
Ben B 8-19     long-term disability warnings
 
Jim L 8-19     does anyone get tinnitus from Lasix?
 
Donna H 8-19     seek pacemaker experiences
 
Jon 8-20     more posts later
 
Pamela's 8-20 reply to Dorothy's 8-17     getting back to "normal"
 
Margaret D 8-20     some questions
 
Jon's 8-20 reply to Margaret D's 8-20     some answers, sort of
 
Frank Smith 8-20     celebrating
 
Dorothy Powell's 8-20 reply to Ben B's 8-19     thanks for the heads-up
 
Pat R 8-20     slow heart rate question
 
Jon's 8-20 reply to Pat R's 8-20     slow heart rate
 
Jim Burns 8-20     have urgent SSD questions
 
Jon's 8-20 reply to Jim Burns' 8-20     one possibility, hope others reply
 
Richard M's 8-20 reply to Donna H's 8-19     pacemaker experience
 
Bill B 8-20     seek CHF support group in Fort Worth area
 
Derald's 8-20 reply to Jim L's 8-19     meds and ringing in ears
 
Derald's 8-20 reply to Margaret's 8-19     staggering meds can help
 
Derald's 8-20 reply to Joseph's 8-17     causes of cardiomyopathy
 
Kate 8-20     seek advice on losing weight & more
 
Ben B's 8-20 reply to Jim Burns' 8-20     your heart class may be the problem
 
Dorothy's 8-20 reply to Pamela's 8-20     thank you for replying
 
Dave 8-21     is this normal for CHF?
 
Jon's 8-21 reply to Pat R's 8-20     reply from a doc
 
Donna H's 8-21 reply to Richard M's 8-20     more info
 
Brenda C 8-21     what is a Baker's Cyst?
 
Jon 8-21     timing
 
Norma 8-21     how long to wait before antibiotic?
 
Pamela's 8-21 reply to Dorothy's 8-20     staying lucky
 
Rick T 8-21     does anyone have a heart failure pacemaker with ICD?
 
Richard M 8-21     diet, blood pressure & exercise weirdness - any ideas?
 
Ann 8-21     UNUM dispute online resource
 
David A 8-21     does anyone have tingling & numbness in left arm?
 
Michael G 8-21     update on exercise and breathing
 
Caroline S' 8-21 reply to Kate's 8-20     exercising and losing weight
 
Myrtle 8-21     I like this web site
 
Caroline S 8-21     questions about EF
 
Jon's 8-21 reply to Caroline S' 8-21     place of EF in heart failure theory & practice
 
Bob's 8-21 reply to Dave's 8-21     coping, energy level & more
 
Dave's 8-21 reply to David A's 8-21     herniated disk is possibility
 
Jon's 8-21 reply to David A's 8-21     stating the too-obvious
 
Joseph's 8-22 reply to Rick T's 8-21     ICD experience
 
Joseph's 8-22 reply to Dave's 8-21     ICD experience
 
Mel G's 8-22 reply to Dave's 8-21     coping with heart failure
 
LaRae T 8-22     piece of cholesterol after surgery blocking blood vessel - any advice, ideas?
 
Mel G's 8-22 reply to David A's 8-21     hope you're better & more
 
Judy H's 8-22 reply to Margaret's 8-20     staggering meds can help blood pressure
 
Vicki 8-22     going off meds experience
 
Linda 8-22     you can have CHF with a high EF
 
Kathy 8-22     questions about meds that should be taken with food
 
Jon's 8-22 reply to Kathy's 8-22     meds that should be taken with food
 
Roz' 8-22 reply to Vicki's 8-22     beta-blockers & EF
 
Jon 8-23     I could use your help
 
Joseph P's 8-23 reply to Vicki's 8-22     echo readings - the tech versus the doc
 
Dave's 8-23 reply to Mel G's 8-22     and to Bob, thanks and more
 
Margaret D's 8-23 reply to Kathy's 8-22     taking meds with food
 
Gail 8-23     questions on driving and sleepiness
 
Tracey C 8-23     seek cruise ship experiences
 
Sharon 8-23     seek Natrecor info & experiences
 
Lisa 8-23     questions - weird feelings, disability & more
 
David A's 8-23 reply to Jon's 8-22     thanks for possibilities
 
Tom S 8-23     feel awful - anybody else? plus oxygen questions
 
Susie O's 8-23 reply to Tom S' 8-23     coping with heat, swollen feeling
 
Dorothy's 8-23 reply toMargaret D's 8-23     verapamil experience
 
Elaine's 8-23 reply to Tracy C's 8-23     cruise ship experiences
 
Caroline S' 8-23 reply to Lisa's 8-23     disability appeal, symptoms need doc
 
Dorothy P 8-24     heat and cold
 
Loretta D 8-24     swelling everywhere but feet and ankles
 
Jon's 8-24 reply to Loretta D's 8-24     swelling everywhere but feet and ankles
 
Shirley 8-24     does anyone else get numb hands and feet?
 
Joe S 8-24     changes after valve replacement
 
Myrtle 8-24     need some advice or suggestions
 
Joseph P's 8-24 reply to Lisa's 8-23     disability experience
 
Jacky 8-26     seek BNP test info
 
Kelina 8-26     seek others in my boat
 
David A's 8-26 reply to Mel G's 8-22     ICD & EPS experiences and more
 
Shauna Y 8-26     seek advice on fluid and dizziness
 
Nancy S' 8-26 reply to Jon's 8-23     trying to e-mail Yahoo
 
Jon's 8-26 reply to Nancy S' 8-26     trying to e-mail Yahoo
 
Frank Smith 8-26     brain's power over the body
 
Jon's 8-26 reply to Frank Smith's 8-26     brain versus mind?
 
Jim's 8-26 reply to Vicki's 8-22     is this depression? weight gain
 
Myrtle 8-26     need some advice quickly, please
 
Jon 8-26     more later
 
Michael's 8-26 reply to Kate's 8-20     weight loss, exercise, update & more
 
Elaine WB's 8-26 reply to Lisa's 8-23     Disability experience
 
Michael S 8-26     Disability experience
 
Thomas Reidman 8-26     EECP trial still taking entries
 
Michael G's 8-26 reply to Jackie's 8-23     BNP blood test for CHF
 
Derald G 8-26     can EF be estimated at home?
 
Myrtle C's 8-27 reply to Jon's 8-26     staggering meds, taking with food
 
Jon's 8-27 reply to Myrtle C's 8-27     staggering meds, taking with food
 
Eva 8-27     Disability is a joke
 
Jon 8-28     disappearing act
 
Derald's 8-28 reply to Eva's 8-27     Disability and depression
 
Ben B 8-28     seek Disability experiences, have questions
 
Jon's 8-28 reply to Ben B's 8-28     6 months of payments
 
Jon 8-28     CoQ10 offer
 
Myrtle C 8-28     update, doctors & humor
 
Joanne R's 8-28 reply to Eva's 8-27     doctors & lawyers
 
Gloria 8-28     update & more
 
Jon's 8-28 reply to Gloria's 8-28     beta-blockers and low blood pressure
 
Jon 8-29     Bill Drummond
 
Elaine WB's 8-29 reply to Eva's 8-27     doctors and lawyers & more
 
Elaine WB's 8-29 reply to Ben B's 8-28     doctors and lawyers & more
 
Jon 8-29     CoQ10 gone
 
Michael 8-29     how do I measure pulse during exercise?
 
Tom S' 8-29 reply to Ben B's 8-28     Disability review experience
 
Gene 8-29     questions - exercise, pain relievers, Coreg
 
Jon's 8-29 reply to Gene's 8-29     exercise and beta-blockers
 
Pam 8-29     seek PVCs experiences
 
Margaret D's 8-29 reply to Gene's 8-29     one possibility
 
Derald's 8-29 reply to Gene's 8-29     Coreg dose, pulse pressure
 
Amelia's 8-29 reply to Myrtle C's 8-28     how we look versus how we feel
 
Robin Cantrell 8-30     just venting
 
Ben B 8-30     Bill Drummond will be missed
 
David B 8-30     seek drug info
 
Jon's 8-30 reply to David B's 8-30     possibilities
 
Tom S 8-30     Bill Drummond
 
Pamela's 8-30 reply to Michael's 8-29     pulse taking system/monitor
 
George S' 8-30 reply to Michael's 8-29     pulse taking system/monitor
 
Allen 8-30     seek anti-ACE peptide experiences
 
Jon's 8-30 reply to Allen's 8-30     anti-ACE peptide
 
Ruthie A 8-30     losing Bill Drummond
 
Dawn B's 8-29 reply to Amelia's 8-29     looking good, but sick one the less
 
Margaret D 8-31     Social Security Disability approval!
 
Margaret D 8-31     seek weird anatomy ICD implant experiences
 
Amelia 8-31     EPS & is being emotional part of CHF?
 
Amelia 8-31     heart size & female hormone therapy questions
 
Jon's 8-31 reply to Amelia's 8-31     my own changes in heart size experience
 
Mel G's 8-31 reply to Margaret D's 8-31     ICDs, emotions & more
 
Norma's 8-31 reply to Amelia's 8-31     hormone therapy and CHF experience
 
Barbara F 8-31     scary episode - has anyone else done this?
 


Kathy, August 16, 2002 - Hi, Since I have been diagnosed and on several meds, I have developed horrendous drenching, cold, clammy sweats. What in the world is causing this? I'm taking Coreg, Lasix, lotensin, digoxin, aspirin and protonix. kathyh@linkny.com


Gracie's August 16 reply to Shauna Y's August 10, 2002 - Hi, I also have the severe leg and foot pain that is spoken of here. I have a recurring problem with low potassium levels due to the large amounts of Lasix (160mg daily) and zaroxolyn, a drug that is supposed to make Lasix work more proficiently. I am on 60mg potassium daily with another 50mg available to take when I get chronic pain. I am also on 300mg neurontin TID, and this has helped tremendously! It is used for nerve damage and it makes such a difference in the pains I have in my feet, especially the very bottoms. I am also on 14 other medications that are strictly for my heart. Good luck and I hope this may help someone out there. May God bless you all. soft_tx_breeze@hotmail.com


Jon's August 16 reply to Gracie's August 16, 2002 - Hi Gracie, Would you mind listing the meds you take? Jon.


Doug K's August 16 reply to Sherrell G's August 12, 2002 - Hello Sherrell, It has been a couple of years since I last posted, but I remember you from the beginning of Jon's Place. I am very happy to hear that you got a new heart! Best to you. ;-) dknuth5@comcast.net


Doug K, August 16, 2002 - Hi, Well, it has been a long time since I have posted here at Jon's. My personal journey through sickness and life in general has been a busy one the last couple of years. I have gotten divorced and I remarried as of last weekend. I now have 2 dogs, and yes, they do help you to get through life. I have finally (after 7 years) found out why I have been so sleepy despite my heart meds, and a 50% EF. I have been diagnosed with sleep apnea and narcolepsy. I am still having problems with the narcolepsy, but maybe with some med changes that may get better too.
     I am very happy to see many of the people I used to post with still here: Karen K, Jon, Bill D, Madjack & Sherrell. I hope to post again occasionally, and not be quite such a stranger. Best of luck to all, and thanks again to Jon for providing us with this site. It has helped so many people over the years to cope with CHF, including me. dknuth5@comcast.net


Tom S' August 16 reply to Roz' August 15, 2002 - Hi, Thanks for the info. I have an August 27 appointment with my VA doctor and she is really good about listening and then prescribing meds that I think would help. I will suggest the prednisone therapy and dosage. I will let you know the outcome. With sincere gratitude for the suggestion. Smoochies.
     Ben, I do not consider believing that I would have a chance of recovering as being in denial. I think that would fall under the heading of false hopes. While you and others have improved, others like myself have slipped back after a year or two or improvement. I entered the hospital 6 years ago and was given a very slim chance to survive. At that time I had an EF of 10%. During the next 4 years that slid back up to 35%. Now it has slid back to between 10 and 15% and believe me, I feel it. I would love to think that someday I will be as good as new but realistically I know better and prefer to live with my prognosis than a dream of full or dramatic recovery. bhigheart@hotmail.com


Jon's August 16 reply to Tom S' August 16, 2002 - Hiya Tom, Prednisone can be a great boon but please be cautious using it with a low EF. It promotes fluid retention with a vengeance. Jon.


Sharon J W, August 16, 2002 - Hi, I haven't posted in a very long time. I was on a CHF plateau but I fell off. During course of tests, I was told I had a moderate/severe inferior atrial and septal infarct - a "silent" one. I can't believe that I would not have noticed such an attack. One doctor says that only diabetics get silent attacks, that it may be a false positive. I plan to be tested since my mom and brother are diabetics, but does anyone have any comments on my latest episode, or non-episode? sparkywilliams@att.net


Jon's August 16 reply to Sharon JW's August 16, 2002 - Hi Sharon, Lots of people - with or without diabetes - get silent heart attacks. It's very common. My plumber had one recently. He was amazed to find out that he had suffered a rather serious heart attack. He said he had a mild soreness in one arm for a couple of days, but that was the only sign of it until he slipped into CHF a few weeks later. I am not saying you had one, only that they happen - a lot. Jon.


Richard M's August 16 reply to Elaine WB's August 15, 2002 - Hi, Thank you for that information, but I just want to remind people that grapefruit juice reacts badly with some meds. Malczewski@attbi.com


Pamela's August 16 reply to Ben B's August 15, 2002 - Hi, I totally agree with Ben's reply to Ian. It's too soon to know what your diagnosis is and you shouldn't think negatively until you have something to be truly worried about. Jon says in The Manual that 27% of CHF patients get back to "truly normal" and that's not an insignificant number. Ian notes that he doesn't have CHF so there is a definite chance that he could do well with meds. Tom's reply to Ian may have made him more nervous; not to minimize for a second how difficult living with CHF is, but many people (myself included) have recovered and are back to their former levels of health and fitness. So hang in there, Ian! You may not need a miracle at all - just good medical care and a positive attitude. Good luck. chibutter100@yahoo.com


Lisa's August 17 reply to Kathy's August 16, 2002 - Hi, Maybe you should be checked for diabetes. The cold, clammy sweats were my first indication that I was diabetic. Just an idea. skippedbeats@aol.com


Dorothy Powell's August 17 reply to Pamela's August 16, 2002 - Hi Pamela, Thank you so much for letting the rest of us know that some people do get back to normal - whatever that is. I may have missed some of your information. Are you normal, meaning that you take absolutely no meds or do you mean that you take a minimal amount of meds to keep you compensated? Thanks, Dorothy Powell. DPowell@aol.com


Mel G's August 17 reply to Kathy's August 16, 2002 - Hi Kathy, When I was diagnosed and first started on meds, I also had unbelievable cold sweats. I would wake 2 or 3 times in the night or during the day, soaked through and with bed clothes and pajamas clammy and stuck to me. Yeuck! It really bugged me, and I mentioned it to the nurses who just said, "Oh, it's because we use rubber sheets over the matresses and they don't breathe." That plainly wasn't it.
     The symptoms then continued at home (no rubber sheets here!) but dissipated over a few weeks and haven't come back. I'm sorry that I don't know what caused it or what you can do about it - but I can sympathize. It's very uncomfortable. No doubt it's a side effect of one of the meds, which you will acclimatize to. Hang in there. falmouth@bigpond.com


Richard M, August 17, 2002 - Hi, I have seen the term "truly normal" used a few times in these posts. Can someone explain what is truly normal as far as CHF goes? I myself think this term is used too loosely. I hope I am wrong. My understanding is that if you have had CHF or are in CHF now, then your heart was damaged. So how can you be truly normal? malczewski@attbi.com


Gracie's August 17 reply to Jon's August 16, 2002 - Hi Jon, Here is a complete list of my meds for your perusal and possibly, awe. I am even amazed at the meds I take and I sometimes wonder if I am being over-medicated but I am assured that I am not:
     200mg amiodarone BID, 300mg Neurontin TID, 25mg spironolactone TID, 2.5mg zaroxolyn BID, 80mg Lasix BID, 6mg Coumadin PO, 20mg Acidphex TID (for ulcers), 10mg Norco every 4 to 6 hours as needed for pain, 60mg potassium TID, 0.125mg Lanoxin PO, 325mg Ecotrin TID, 25mg Plavix TID, 40mg Zocor TID, 30mg cardizem TID, 25mg Xanax BID, 50mg Zoloft TID, one furosomax weekly, 20mg Accupril PO. Well, I think that covers it. I hope this helps someone somewhere.
     Talk about being hit by a truck, there are sometimes days in a row I cannot get out of bed. Other days I feel pretty good and can almost funtion as a normal healthy person, with some limitations of course. Oh, I suppose I should add that I had a failed mitral valve repair and failed double carotid endarterectomies last year, all within a 10-day span. I also have mitral regurgitation, severe aortic reguritation, and moderate tricuspid regurgitation. I am now in the beginning of end-stage CHF. May God bless you all and bring some sunshine into your day. soft_tx_breeze@hotmail.com


Jon's August 17 reply to Gracie's August 17, 2002 - Hi Gracie, I do have some more questions, if you're up to them. :-) Do you have diastolic heart failure? If not, why do you take a calcium channel blocker (diltiazem - cardizem), and why isn't it amlodipine instead of diltiazem? Do you really take 120mg Zocor every day? Why no beta-blocker? Why so much aspirin when you're taking multiple blood thinners already and have ulcers?
     I am no expert on heart surgeries but I wonder - why if the valve repair failed did they not put in a replacement, either a pig valve or a mechanical valve? I am not sure what a "failed" endarterectomy means in your specific case. Can you give details on that?
     Finally - as if I haven't thrown enough at you already <g> - what exactly do you mean by end-stage? Like "normal", this term is used a lot of different ways. End-stage really means the point at which CHF (symptoms) can no longer be relieved by meds much, if at all. If you have reached that point (and your diuretic dose does not seem to indicate it although that's only one minor indicator), have you tried intermittent inotropes? Just curious. Sorry for the lack of awe <g> but I have seen people taking quite a few more than this, and it always concerns me. Too many meds is as bad as too few. Jon.


Jon, August 17, 2002 - Hi everyone, I have a lot more posts and some replies to give as well (including to Richard), but I have to see my daughter off on her way back to college for the coming semester, so I'll get to them later tonight and if not then, I'll go ahead and do them tomorrow even though it wil be Sunday. ;-)Jon.


Ian, August 17, 2002 - Hi, Thanks Ben and Pamela for the response - a little positivity goes a long way at the moment. There's some worrying stuff on the Internet and I have a habit of looking at worst-case scenarios (pessimistic Brit!). I had my cath yesterday and the good news is that my EF has gone back up to 40% after a few weeks on Ramipril. There is no sign of arterial disease. I feel okay and have been advised to get back to light jogging if I can. No one seems to know what caused this but I have an underlying arrhythmia and a lot of atrial fibrillation, which is going to be looked into next. A big thanks from across the pond to Jon for this great site! Lleweli@aol.com


Gracie, August 17, 2002 - Hi, Did I mention in my previous post that I can't remember anything? It seems that I forgot to add that I also wear a 0.4mg nitroglycerin patch daily for 14 hours. Duhhhhh. I also just wanted to say I enjoyed your pics of your Rotts. I have a 12 month old Rott female named Annie Angel, that I adore. She has the sweetest disposition of any dog that has ever owned me. :-) May God bless you all. soft_tx_breeze@hotmail.com


Joseph P, August 17, 2002 - Hi Everyone, I just came from my doc and he said with cautious optimism that I was returning to near-normal. I asked if I could smoke, drink beer, drive a big truck (I used to drive for a living), and have sex, and he said no, no, no, no, so I take it I am normal now and I have gotten used to the up and downs of CHF. However, with the help of the people of the CHF Center at St. Luke's hospital in St. Louis, I live very well. Thanks to everyone for all the comments on this site. I will look to the future as new things come up on a every day basis for relief of CHF. The way everyone comes close in this effort is great. God bless. Joe. joeandol@shawneelink.net


Roseanne, August 17, 2002 - Hi, My husband is in Temple University Hospital in Philadelphia. He has 95% blockage of the main artery to his heart. They want to do a heart scan now that his Swan-Ganz catheter has been removed to see if they can do a balloon stent on him. He is 63 and has had CHF for about 8 years now. Just recently we found out that there are CHF specialists out there.
     Now with what the odds look like, I am really scared. He keeps telling me he is not coming back home and I am a realist. I know that God is with me but my nerves are really stressed. We live 70 miles from the hospital and I have been driving back and forth since last Wednesday. Our sons have gone down today to give me a much needed break and yet somehow, I feel so guilty for not going. Can anyone out there relate to this? Can anyone out there tell me if their odds were this bad? Thanks, Roseanne. saint4664@aol.com


Jon's August 17 reply to Richard M's August 17, 2002 - Hi Richard, This is such a slippery concept to fully grasp that I put it in The Manual. It might help (or might not <g>) to re-read the upper sections of The Manual as a sort of refresher course.
     You are correct that it depends on what each person means when they say "normal" or "healthy" or "well." I would say that normal means what is typical or common or usually seen in people with the same clinical degree of illness (same test results, etc.). I would say that "healthy" means no illness is present. I would say that "well" means a person is content with his current personal level of health, whether he has an illness or not. Of course, these are just what I would say. <g>
 
It might help to use the terms "compensated" and "decompensated." Decompensated means you have heart failure symptoms right now. Compensated means that you have a weakened heart but are not currently showing any CHF symptoms.
     Another helpful thing is to remember that CHF is not an illness - it's a set of symptoms that occurs when your heart can't pump enough blood. An underlying illness or some "trigger" caused your CHF (symptoms). Many of us never know what that other illness or trigger was, but it could be a blocked artery, a seriously malfunctioning valve, a virus that harms our heart, a heart attack that kills some of the heart muscle or whatever.
     If a heart attack killed a chunk of your heart muscle, that is likely to be permanent damage so you may never be "healthy" again. However, meds that ease your heart's workload may make you feel a whole lot better so much that you may feel "well." If you stop taking the meds or gain a bunch of weight or something, though, you may slide right back into heart failure - either quickly or slowly. It is also possible that you would keep feeling well but one or two years later would suddenly go back into heart failure. I have seen different readers report all these.
     If a malfunctioning valve sent you into CHF, maybe repairing the valve or replacing it with a mechanical valve will actually "cure" you of your CHF and you will be "healthy" again. However, if your original valve was messed up for a long time before you got it fixed, maybe your heart was deprived of enough oxygen (ischemia) over that period to cause permanent heart muscle damage. If so, the valve repair may help a lot but may not make you "healthy" again.
     So, you can see how tricky it can get describing things in an accurate way. I hope this helped. Feel free to ask more, or specific, questions and I'll do my best to answer them - or I'll get a CHF doc to help me answer them for you. Jon.


Caroline S' August 19 reply to Ian's August 17, 2002 - Hi Ian, I have recovered quite a bit of EF after a year and a half (about 80% improvement, but not back to normal). I encourage you to jog if your doctor says it is okay. In my case, I am able to ride an exercycle and I think it has helped a lot. I have a good quality of life and am able to work, so I am truly grateful for what I have. It's scary to be diagnosed but many people improve. Good luck! cxscott@aol.com


Gracie's August 19 reply to Jon's August 17, 2002 - Hi, I really don't mind questions and I am sure you can't ask me anything I haven't asked myself and others in the last 1 1/2 years. I will try to answer them the best I can. First, no I don't take 120mg of Zocor a day. Evidently that was a typo along with a couple of others so I will send another list, with no typos, I hope, of the meds I take at the end of this correspondence.
     I am sure all of you or most of you have heard of Fen-Phen, the diet drug used in the 90s. Some people that took either Pondimin or Redux for at least 60 days have heart-related problems. Unfortunately, I am a victim(?) of that drug. I took it for 20 months thinking it was perfectly safe. For me and many others, it wasn't. The way Fen-Phen affects the heart is by leaving small deposits of a plaque-like substance on the valves, causing them to be unable to close properly, thus causing regurgitation. This plaque substance is very much like the substance cacinoids and they now believe that there is a calcium base in this plaque. Instead of it taking years to deposit, it is deposited over relatively short periods of time, and there are often no symptoms.
     In my particular case, the plaque was not only deposited in my heart valves but also in my carotid arteries, leaving both carotids 90% blocked. I was pretty much a stroke waiting to happen. It came pretty much as a surprise. I was losing vision in my right eye for short periods of time (2 minutes or less per episode) over a 2 day period and passed out at work, which led to a trip to the local ER by ambulance where I was then diagnosed with the carotid problem. A left carotid endarterectomy was performed 3/26/01 and the right carotid on 3/28/01. I was released from the hospital on 3/30/01. Twelve short hours later I was readmitted to the ICU with pneumonia. After more tests I was told I had a severe mitral regurgitation that needed valve replacement right away. I requested a second opinion since this was much too fast for me, but they had already scheduled my surgery for Monday, 4/02. I refused the surgery so they rescheduled for Wednesday, 4/04. Again, I refused the surgery, requesting a second opinion.
     My family and I were told I did not have time for a second opinion and that without this surgery I would not live 5 days. I was convinced to have the surgery done, so on 4/06 I went in for the replacement. Well, evidently after they got in there, they found it was not as severe as I had been told and they opted for a repair instead. However, the ring they used was much too large, which left my mitral valve regurgitating more than it was prior to the surgery. I know this sounds totally unreal but I swear on my life it is the truth. I spent 4 days on life support. My family was told that after the doctor realized he had put in a ring too large he had to leave it because they kept losing me, so all they could do was close me up and hope for the best. This particular surgeon is very well known in my area for being an expert. Unfortunately, I found out the hard way that he is not.
     After getting worse and worse over a 6 month time frame I chose to find myself another doctor. I chose to go to Baylor Heart Clinic in Houston. I am now seeing a CHF specialist and a cardiovascular surgeon in Dr. Micheal DeBakey's group. After more testing and reviewing my prior tests and medical records, this is what I found out: Both carotid endarterectomies were much needed but botched during surgery, leaving me with still a 70% blockage and TIAs. Evidently the surgeon was in such a hurry he pulled the stitches too tight, which leaves a result somewhat like a rubber band wrapped around the arteries too tightly. That, along with the Fen-phen-induced plaque that was not removed, caused both endarterectomies to now be labeled "failed double carotid endarterectomies." The mitral valve that was repaired never needed repairing in the first place. My tests were misread. Of course, using a ring that was not only too large but not needed in the first place has sent me on a downhill spiral.
     This is where I am going to shorten this since I hope I have explained how I got to where I am today, and I am getting tired now. I do have a malpractice suit against the surgeon that performed these surgeries on me so I cannot give his name. I have been in the hospital at least once every 2 months since 3/01 for complications of one sort or another. Between mitral valve surgery and fen-phen, I now have moderate mitral regurgitation, severe aortic regurgitation, moderate to severe tricuspid regurgitation, CHF, a-fib, and supraventricular tachycardia. My last visit to Hotel Methodist Hospital was almost my last. My heart rate reached a high of 263, which along with the a-fib, took 5 days to get under control. My stay lasted 10 days because I kept going into V-tach and a-fib periodically. I also have an enlarged liver and my kidneys are pretty dysfunctional.
     I have been told the option of 3 new valves is pretty much out of the question, so I am being put on the transplant list. Of course there is a testing to be done and counseling to be done before I ever, if ever, receive a heart. My questions to my cardiovascular surgeon is, If fen-phen keeps leaving deposits, will it leave deposits on a new heart? They are not certain. Research is still being researched as to the effects and from what I have been told, there have not been very many transplants done where fen-phen was a culprit, so I suppose only time can tell. Now to a corrected list of my meds:

In PH there is a huge concern over blood clots in the lungs. Ecotrin, Plavix, and Coumadin are all blood thinners, but they all work in different ways. I like to think I can put my trust in the doctors at Baylor and Methodist hospital, but if you can find anything out of the ordinary here, please let me know and I will ask them about it. After my past experience I find it hard to trust anyone in medicine even though after much research I do think my present physicians are experts in this field. I hope I was able to explain everything. Sometimes when I get really tired, I tend to ramble. I am off to bed now. Thanks, Jon for any opinions, questions or advice you may have for me. May God bless you all. soft_tx_breeze@hotmail.com


Jon's August 19 reply to Gracie's August 19, 2002 - Hi Gracie, My hand is about shot from typing with fingers taped together <g> so I have to be brief. The PH explains the CCB. I don't know all that much about fen-phen as it relates to heart valves although I read a lot about it when writing my PH page. However, the studies I read showed that in most people, valve disease actually improves after stopping the drug. I don't understand how a discontinued drug could continue to leave deposits. This wasn't in any of the articles I have read. Do you have any references I could look up to learn more about it?
     Have your doctors discussed the potential difficulty involved in having a transplant with high pulmonary artery pressure? I did not read anywhere when researching my PH page about aspirin being used along with prescription-strength anticoagulants. Is this a judgment call in your case or an established routine? Thanks for any info. I'm always curious, always learning. Jon.


Ben B, August 19, 2002 - Hi, I have had DCM for about 6 years. Initially my EF was 10 to 15% and I had severe arrhythmias which caused me to undergo an EPS. Nevertheless, I worked full-time like this for about 1 1/2 years until my doctor insisted I get on permanent (or so I thought) disability. In the intervening 4 years I have been receiving private LTD (long-term disability) and SSD, each of which have accounted for about half my income.
     Although I initially had a little trouble getting the SSD, the private insurer has been pretty good until last Thursday, when I received a letter telling me they were going to cut me off. This is a nightmare because, unlike SSD where you have a little cushion, this involves unceremoniously just stopping your payments. You can appeal but under ERISA (which governs these things), the insurers are protected against punitive damages and the onus is completely on you to prove they stopped payment "capriciously." In the meantime you get no money. In my case, the probable reason for my termination was that my EF had risen to 35 to 45%, which their doctor misstated as 45% pure and simple. Additionally, the doctor said my EF had risen consistently, which was untrue because in my case the EF had gone up to 35%, then back down to 20%, then up to this level.
     I am going to try to fight, but getting a lawyer for a private case is a lot harder than for SSD. Actually, I was already considering a trial work period and had lined up some part-time teaching jobs, but they will not make up this significant portion of my income. The main reason I wish to fight is because of the brutality of the actions of this company. I just wish they could have given me some warning or worked with me. However, I'm sure they've lost a lot on their investments and need to make it up somewhere. For a laugh, they submitted my claim to their "crack" vocational unit, which determined I could now perform all the duties of a dispatcher. When I spoke to the representative, I told him I would be showing up at their office bright and early the next day for the dispatcher job they had lined up for me. Of course I knew they had no such job for me.
     Sorry for the lengthy post. I just wanted to relay this information for anyone else with LTD, particularly UNUM. Watch out for clauses in your contract. After a certain period of time the conditions for disability will change from "ability to do the functions of last employment" to "ability to do the functions of any employment." This may be after 24 months (as in my case), or some other period. Although the "functions of any job" is the same as for SSD, they use different methods to determine it. bdbrinkman@juno.com


Jim L, August 19, 2002 - Hi, Have any of you people experienced tinnitus as a result of taking furosemide? How about Demadex? I have a lot of trouble with Lasix and am wondering if changing to Demadex would correct this aggravating ringing? Thanks, guys. Jim L. clocker131@charter.net


Donna H, August 19, 2002 - Hi, I posted this on a pacemaker forum and haven't heard anything there. Today I called the hospital and was able to get an appointment with the cardiologist September 3rd. In the meantime I still have unanswered questions about his blood pressure and his pulse rate. He is still in a-fib and they are trying to correct his fast heart rate with Coreg. His pulse is around 97 to 99 and his blood pressure is 100 over 80. Has anyone else had this kind of problem after having a pacemaker inserted? I have called the cardiologist but only talked to the nurse, who scheduled him for a pacemaker clinic September 26th. He has had no follow-up with his cardiologist since his August 2nd surgery. Is this normal? His pacemaker is a Guidant Insigna model 1194. herdrich@grm.net


Jon, August 20, 2002 - Hi everyone, I have a doctor's appointment in a few minutes so posts will go up later tonight. This is not heart-related. It's always something, though, ya know? ;-) There are quite a few more posts so check back in tonight. Jon.


Pamela's August 20 reply to Dorothy's August 17, 2002 - Hi, I guess I used the word "normal" because that's what my CHF doctor has said to me on a number of occasions. Now he has also told me to keep taking my meds because symptoms sometimes return and it's not worth taking a chance of that if I can tolerate the meds - Coreg and accupril.
     They believe I had a virus several years ago that led to CHF, after being misdiagnosed as bronchitis for a month. I felt completely fine within a few months and have had a normal EF and heart function with no damage for several years. I work out daily, work full-time, etc., and feel exactly like I did before this happened. Anyway, perhaps "normal" is too loaded a word. I was definitely sick but have been fine since. My doctor, who runs a major Chicago CHF clinic, told me I didn't need to come back for 6 years because there was nothing to track. Of course, if I start to feel poorly for some reason I'll call right away. I'm very careful and very aware of how sick I was and what cardiomyopathy can do to the body. I was simply trying to reassure Ian a few days back that some people can be ill and return to "normal" - whatever that is, as you rightly point out. chibutter100@yahoo.com


Margaret, August 20, 2002 - Hi guys, I'm new to this site. I was diagnosed 2 months ago with IDCM, non-ischemic type. I'm on the usual Coumadin, Coreg, Prinivil, Lasix, KCL, digoxin, etc. My EF was 15% by cath. I am an RN, by the way. I have a couple of questions:

  1. Is the "life sucked out of me" feeling due to the drugs or the disease or both?
  2. Is there a BMI cut-off for transplant consideration?
  3. Is the Prinivil ever given twice a day instead of once for better tolerability?

My pressure was so low they already had to decrease my Prinivil to 2.5mg from 5mg. My one MD suggested I might tolerate the 5mg if it was twice daily. I see the electrophysiologist Friday so I can ask questions then. Thanks for this site Jon, and keep a positive attitude everyone! mdavis10@tampabay.rr.com


Jon's August 20 reply to Margaret D's August 20, 2002 - Hi Margaret, That kind of fatigue can be from one, the other, or both. It depends on your individual situation. Some CHFers live with it all the time, others get it in spurts, and others almost never experience it.
     Yes, but the obesity cut-off (Body Mass Index) varies from center to center so you would need to talk to the staff at the specific heart transplant center you are interested in.
     I don't know, but I see no reason why not - or - you could switch to Vasotec (enalapril) which is normally given BID. Jon.


Frank Smith, August 20, 2002 - Ciou to all of my email/CHF friends, Monday was my birthday and I am celebrating my life and my very strong belief in God. Where there is God and life, however tenuous, there is hope, faith, and love. I was diagnosed with cardiomyopathy (ischemic) in 1990, and CHF in 1992. We can endure if our "heart" is in the right place. Later, Frank. P.S. I'm only 69. :-) marquasmith@nethere.com


Dorothy Powell's August 20 reply to Ben B's August 19, 2002 - Hello Ben, Thanks for the warning. It took UNUM forever to approve my disability. I guess I will see how long it takes for me to get a letter from them. Best wishes in your efforts. I'm sorry to say I don't have any words of wisdom. DPowell806@aol.com


Tom S' August 20 reply to Tom S' August 19, 2002 - Hi, I've had tinnitus for years so I wouldn't know if Lasix or any of my meds contribute to it. I do notice that when the air pressure rises or drops the severity of the annoying ringing in my ears sounds increases and decreases. Tinnitus is the perception of ringing, hissing, or other sound in the ears or head when no external sound is present. For some people, tinnitus is just a nuisance. For others, it is a life-altering condition. In the United States, an estimated 12 million people have tinnitus to a distressing degree. I've basically gotten so used to the sound that I more or less ignore it so it doesn't really bother me.Here's a web site for the Tinnitus Association and more info: www.ata.org/. bhigheart@hotmail.com


Pat R, August 20, 2002 - Hi Jon, I don't post often, but come to this site daily. I have a question. I had DCM a few years ago. I do not take any meds now (I was on Altace) because of a low heart rate of 48 beats per minute during the day. My blood pressure is fine at 120/80, but meds push it too low. I also have 2 leaky valves, the mitral and aortic, both mild leaks. I feel tired all the time and climbing stairs is not difficult, but I avoid them because I'm tired, not short of breath. My question is, could this low heart rate cause me to go back into heart failure? rolexpat@hotmail.com


Jon's August 20 reply to Pat R's August 20, 2002 - Hi Pat, I honestly don't know. However, I am e-mailing this question to a CHF specialist who helps me with the site and we'll see what he says. Jon.


Jim Burns, August 20, 2002 - Hi, I need some help. I have an SSD hearing on 8/28/2002. The lawyer I thought I had, said he cannot help me. After reviewing my medical records he said I went from class 3 to class one and the doctor also stated my heart failure and IDCM was probably caused from alcohol. I admit I was a big beer drinker but before my CHF started I was sober and had been sober for quite awhile. So I'm looking for a lawyer. Do I have a chance?
     I recived long-term disability from UNUM but after reading the earlier posts about getting cut off with no notice, I'm getting worried. Can SSA deny disability because my condition "probably" was caused by alcohol? I am still looking for a lawyer. If anyone has any tips, let me know. Thanks. jamburns@msn.com


Jon's August 20 reply to Jim Burns' August 20, 2002 - Hi Jim, I don't know if it would help you at all, but take a look at: L. Djousse, R. C. Ellison, A. Beiser, A. Scaramucci, R. B. D'Agostino, and P. A. Wolf. Alcohol consumption and risk of ischemic stroke - the Framingham study. Stroke 33(4):907-912, 2002. It is also found here: Walsh CR, Larson MG, Evans JC, et al. Alcohol consumption and risk for congestive heart failure in the Framingham Heart Study. Annals of Internal Medicine, Feb. 5, 2002;136(5):181-191. Jon.


Richard M's August 20 reply to Donna H's August 19, 2002 - Hi Donna, Are you telling us that since the placement of the pacemaker the doctor has not seen the person who had it done. Something is wrong with this whole picture. After the placement of the pacemaker the doctor should have seen him at least once, if not more.
     Did the doctor work on the settings a couple of days after the placement? You said, "He has had no follow-up with his cardiologist since his August 2nd surgery. Is this normal?" NO! Do you know what his pacemaker was set at? Malczewski@attbi.com


Bill B, August 20, 2002 - Hi ya, I am needing a support group to talk face to face with other CHF/cardiac patients. I moved from Austin to the Dallas/Fort Worth area in Texas, Bedford to be exact.
     I read a post about sweating. Man, it is horrible to just be sitting here and get soaked. I don't know if it's meds or not, but I sure have a lot more sympathy for someone going through menopause. :-) I am still fighting SSD. My appeal is in Virginia now. I am still looking for a job but I get turned away a lot. I just had my 46th birthday! Yea me! Yea God! Have a great day and God bless, Bill B. fedx44@yahoo.com


Derald's August 20 reply to Jim L's August 19, 2002 - Hi Jim, I'll ask my wife - she's an audiologist. However, I think you can also check with a pharmacist to see if your medications are "ototoxic." derald@earthlink.net


Derald's August 20 reply to Margaret's August 19, 2002 - Hi Jon, Don't forget staggering meds too. My blood pressure and pulse were getting way too low until I started staggering. Now I am half as tired for twice as long. <g> derald@earthlink.net


Derald's August 20 reply to Joseph's August 17, 2002 - Hi Joseph, I didn't get cardiomyopathy until after I quit smoking. Hmmmm, coincidence? <lol> derald@earthlink.net


Kate, August 20, 2002 - Hi, This is my first post and also I'm just learning how to use a computer, so please bear with me. I have IDCM, CHF, pacemaker, and I am class 3 and end-stage CHF. I'm in the randomized ACORN trial, in which they inserted a mesh sock on my heart 5/1 to control my heart's growth and hopefully improve pumping. My EF is now at 13% but I still drive, fix meals, and still can enjoy some activities with my family. This seems to surprise my doctor but he encourages me to do what I can and to stop when my body tells me to. I'm also a Type 2 diabetic and am overweight.
     My main question is, how can someone who doesn't have energy exercise to lose the needed weight? I have cut down on eating and have lost 50 lbs in the last year, but seem to be stuck. I have been told that a heart transplant is out of the question due to my size. I have had some of the testing for transplant and went into failure, and that is when the trial was suggested. I am the first person in Nebraska, the 7th person in the USA and the 22nd person in the world to have this done. They still are saying that I'm too large and that if "numbers" keep going down, there is nothing else they can do. Any suggestions would be welcomed. I just signed on today so I hope to hear from anyone. kathrynstull@yahoo.com


Ben B's August 20 reply to Jim Burns' August 20, 2002 - Hi, I do not think the problem with your disability is what caused your CHF. Class one is the problem. Are you really class one? This means you have no symptoms. You are going to have a heck of a time getting disability if you have no symptoms. On the other hand, this class description is basically due to info you give your doctor. What have you told your doctor? You ought to stress your symptoms to him and if he won't cooperate, get another doctor. What are your objective measurements, such as EF, ventricle size, etc.? bdbrinkman@juno.com


Dorothy's August 20 reply to Pamela's August 20, 2002 - Hi Pamela, Thank you for your explanation. You are so very lucky that you did not have heart damage. Dorothy. DPowell806@aol.com


Dave, August 21, 2002 - Hello all, So far this site is by far the most informative CHF locale I've found on the web. I'm new to this whole CHF deal. I'm 30 years old and was just diagnosed 2 months ago with an ejection fraction of 25%. I appear to just be starting a journey many of you have been on for a long time. The docs think I got CHF virally. I guess it doesn't much matter why or how you got it.
     My point is that up until just a few days ago I was able to walk almost 2 miles in 30 minutes, had enough energy to actually be of some use to my wife and kids, had a positive outlook, etc., then seemingly overnight I've just got zero energy. I feel absolutely exhausted. There is no fluid in the lungs when I take a deep breath and no swollen ankles. It seems harder to breathe and I know I couldn't do my daily walk. Is this normal within the "ups and downs" of having CHF? Do I need to go see my doc? This has been a real mental blow, even if physically I am all right. dstuart@us.ibm.com


Jon's August 21 reply to Pat R's August 20, 2002 - Hi, The CHF doc I spoke to replied as follows. Everything is paraphrased by me and any mistakes are mine:

I'll bet my ride home in a blizzard that there are detectable cardiac abnormalities in this patient. When the patient says meds push BP too low, does that mean "too low" for the patient to tolerate, or just a low reading that worried the docs and nurses? The leaky valve are another reason to be on Altace or a similar drug. As far as low heart rate causing relapse into heart failure, a low heart rate may be beneficial, indicating that the sympathetic nervous system is not overactive and is not currently increasing the heart rate. I would be much more concerned if the resting heart rate were 103.
     However, slow heart rate could be a marker that the impulse generating system of the heart is a bit sick and not running at an appropriate rate. Altace should not be stopped because of slow heart rate and is a protective agent that reduces the chance of deterioration. I would be very concerned about any patient not on an ACE inhibitor like Altace with a history of cardiomyopathy and no specific reason to avoid an ACE inhibitor. A dose of 2.5mg Altace at bedtime should be beneficial and should not cause symptomatic low blood pressure. I can't give specific advice, but the above opinions are general principles that I rigorously adhere to.

That's what he said. I love good doctors who speak English too, and this one is very good. :-) Jon.


Donna H's August 21 reply to Richard M's Augsut 20, 2002 - Hi, I think I may have worded that wrong. The doctor saw him the following day in the hospital before sending him home. I thought that we would go back in a week or so to make sure everything was all right since his medications changed drastically after they put in the pacemaker.
     I called the hospital and he was given an appointment with a Nurse Practitioner and she set an appointment with the cardiologist for next week. We were not told what his pacemaker was set at but I will try to find out then. While he was in the hospital he got wonderful care but once he got home, we have difficulty getting in touch with the doctors. Because he is going to a VA hospital and has no insurance, we just do the best we can.
     Some days he feels better than he has in years, then the next day he feels terrible again. I am thinking that may be partially due to the change in medications. herdrich@grm.net


Brenda C, August 21, 2002 - Hi all, I just got out of the hospital after a short stay because of my swollen left leg. My doctor was afraid that the swelling was due to a blood clot, but after all the tests it turned out to be due to a "Baker's Cyst" behind my knee. I must admit that I have never heard such a thing and I was wondering if anyone else has. I have been put on a high dose of antibiotics, which the doctor said should allieviate the problem. Thanks and God bless all. whatsup@citlink.net


Jon, August 21, 2002 - Hi everyone, I had an errand today so it will take while to get the rest of the posts up. Tomorrow I have to take a dawg to the vet, so I'll be a little slow tomorrow too. Jon.


Norma, August 21, 2002 - Hi all, For the past 4 days I have been suffering from a swollen tonsil which makes swallowing painful. My doctor says it's just a virus, so no antibiotic, but I seem to be getting weaker and my fever goes up and down. As I am so determined not to become as sick as I was when in CHF, I am going to take the antibiotic anyway. He gave me a prescription in case the virus went to my chest, but gave me instructions not to take it unless this happened. Isn't that rather like closing the stable door after the horse has bolted? I would appreciate any feedback from anyone who has gone this route.
     By the way, thank you to the lady who suggested I may be allergic to whitening in toothpaste. I stopped using it and am much improved. This site is invaluable and I read it every day, Norma. normadroz@aol.com


Pamela's August 21 reply to Dorothy's August 20, 2002 - Hi Dorothy, Thanks. I suppose I am lucky, but I also think another reason I got better is because of the beta-blocker, ACE inhibitor, and exercise combo platter. All 3 will be a part of my life forever, no question! Plus eating well and all those other things we're supposed to do. :-) chibutter100@yahoo.com


Rick T, August 21, 2002 - Hi all, This is my first post here. I have idiopathic DCM and an EF of 13%. I have been told by my doctor that I am a good candidate for a biventricular pacemaker with a defibrillator. Does anyone here have one of these? Do you feel that it has improved your situation any? Thanks, Rick. ricktripp@centurytel.net


Richard M, August 21, 2002 - Hi, Can anyone answer this? I put a few pounds on and started to diet. Now when I start working out, my blood pressure drops very low, to about 85 over 40. What causes this and is this going to cause me any problems? Malczewski@attbi.com


Ann, August 21, 2002 - Hi, I found this link for evaluation of denied or disputed UNUM disability claims. I don't know how good it is. www.consumerfraudlawyernetwork.com/. rothwella001@hawaii.rr.com


David A, August 21, 2002 - Hi, Has anyone else experienced tingling and numbness in their left shoulder and arm? I know this has been discussed in the past, but I need a refresher course.
     I experience this every once in awhile. Yesterday, this started in the early evening and lasted until after bedtime. My wife and I were headed out last night but the discomfort was such that I asked her to turn the car around and drive home. This morning these symptoms no longer exist.
     I have cut caffeine consumption dramatically, but the last few mornings I have had a cup or two each morning. Could this be a contributor to this feeling? How about tension? I do not have CAD. This type of sensation has occurred before, but usually passes within an hour or two, or when I am distracted.
     A quick story: I have had a Medtronic ICD for 3 years, never firing once (making me a Joey). Last month we were on a driving vacation from California and were in Seattle, Washington for a few days. The vacation had been fairly active so far, with driving, experiencing the smoke from the Oregon fires, walking all around Portland, Oregon, eating, a side trip driving to Mount St. Helens to the observation area at 4,500 feet.
     Anyway, on our first full day in Seattle we went up the Space Needle, walked around the grounds of the Seattle Center, rode the monorail, took a bus to Pike's Market, walked the water front, went back to the market and had dinner and then were picked up by the hotel shuttle. After arriving back at the hotel, my ICD fired twice (now I was a Roo) and sent me to the floor after blacking out for a moment. The Seattle Fire Rescue was called and I ended up in Harborview Medical Center for almost 3 days, first in the emergency, then a ward floor, and then transferred to cardiac ICU for observation. We canceled the remainder of our vacation.
     Upon release I was on crutches with an injured knee as a result of the therapies from my ICD, resulting blackout, and fall. My wife drove all the way back home while I was moaning about my knee pain (it was ugly looking too), taking oxycodone and referring to her as driving "Mr Daisy" back home.
     It pays to know your illness! The Harborview hospital staff I dealt with were impressed with my knowledge of CHF and I was allowed to tell them when my medications were needed. They did practically every blood test known, including a BNP. Most everything was normal and I did not have a heart attack. One thing I know is that I overdid everything on this vacation and was very excited about being back in Seattle. I was born there and haven't been back for about 30 years.
     The two big lessons I got from this vacation are: Know your illness, and pace yourself when on vacation - try not to get so fired up. Best to all and thank you Jon, for your site. DEZEN@worldnet.att.net


Michael G, August 21, 2002 - Hi all, I just wanted to give an update to those who have responded to me in the past. I saw my cardiologist this morning and she did schedule cardiopulmonary testing for me to establish a target heart rate for exercise and see if I have any underlying pulmonary disease that may be affecting my breathing with the use of Coreg. She is also going to repeat an echo just to doublecheck that things are going okay. I am hoping that all will be fine or at least there will be a reasonable explanation for the breathing difficulties I have experienced after intense exercise. Thanks, Mike. michaelgabay@hotmail.com


Caroline S' August 21 reply to Kate's August 20, 2002 - Hi Kate, You asked about how to exercise to lose weight when you don't have any energy. First off, I think losing 50 lbs in a year is really significant, so congratulations! My EF was not as low as yours so I don't know if my comments will apply, but I hope they help. However, I have lost 30 pounds and hope to lose more.
     When I started exercising in December of 2000 I had no stamina, and due to foot and knee problems I really could not walk for long enough to get a cardiovascular effect. My solution is a stationary exercycle. I use an airdyne. However, any stationary bike which lets you take the resistence down to zero could work. I started out doing what I could, which I think was 3 minutes. I rode slowly and I progressed very slowly. Eventually I went from 3 minutes to 4, then 5, etc. I stopped if I didn't feel right.
     Over many months, doing this 4 to 5 days a week, I very gradually built up stamina. As I felt a little better, I started trying to walk faster. If I felt up to it, I would go up a flight of stairs rather than take the elevator. I can now do over 30 minutes on the bike at one time. Listen to your body. Be sure your doctor says it's okay to do this. Good luck with it. cxscott@aol.com


Myrtle, August 21, 2002 - Hi Jon, I am still amazed at how well your web site works. I pray for you to be able to continue this work. You have helped so many people and continue doing so. omie@axs4u.net


Caroline S, August 21, 2002 - Hi, I just recently found this site and am happy to have already learned quite a bit. I do have a question. Is there any research that anyone has seen about the long-term effects on health of cardiomyopathy where the EF is below normal but above 40%? I am interested in any information on this. I am also interested in details on best approaches to improve heart function and avoid other effects on health for those of us in this situation. My problem apparently was caused by viral illness and also untreated high blood pressure.
     Also, is there any sort of guidance about generally what kind of activities a person can do at an EF of 30, 35, 40, 45, 50%, etc? I realize that there will be variations depending on other conditions. Thanks. cxscott@aol.com


Jon's August 21 reply to Caroline S' August 21, 2002 - Hi Caroline, The previous theoretical "model" of heart failure was based almost exclusively on heart function and since EF is the easiest measure of heart function to make, that was the basis for most studies, with 35% and under signifying "real" heart failure.
     The current model of CHF is the "neurohormonal" model, where it is known that heart failure involves many, many bodily systems besides the heart itself. In CHF, the actions of all these heavily involved systems affect the patient, not just heart function. Therefore, you will find measures other than EF to be prominent in later studies - things like quality of life, exercise ability, neurohormonal levels in the blood, etc. There is a narcolepsy drug being considered for a trial in CHFers regardless of EF (I think), and my CHF doc asked me about being in a trial only for CHFers with an EF over 35%, so times are changing.
     In fact, things that used to be considered classic hallmarks of heart failure - EF measurement, congestion in the lungs and such, are now considered only one small part of diagnosis, treatment and prognosis. This is wise!
     Unfortunately, the medical community in general is a lot like the federal government, filled with bureaucratic tendencies and weighted down by so much incoming data that no quick reaction to the data flood is possible. For those reasons, many doctors have not yet gotten and fully digested the message. Who can blame them? This is why it is critical to have a heart failure specialist rather than a general cardiologist or internist or MD.
     My EF was 13% at diagnosis and went up very slowly over many years. It took 6 years to get up to 40%. However, I functioned much better at 13% than I do now at 40%, for many reasons. Physical fitness level is one part. Also, over the years all those neurohormonal changes, the change in skeletal muscle type distribution, the endothelial dysfunction, gas exchange changes in the lungs, and much more - al those bodily systems I mentioned earlier - have had time to wear me down by not working quite as they should for years now. So, don't think about EF as more than one of many indicators of heart failure "degree."
     For all these reasons and more, there is absolutely no way to say even in general how a person "should" function with any given EF. I hope this helped. Feel free to ask questions. ;-) Jon.


Bob's August 21 reply to Dave's August 21, 2002 - Hi Dave, My name is Bob and I am 46 years old. I was diagnosed with CHF and cardiomyopathy with an EF of 20% nearly 3 months ago. You need to see your doctor immediately because no swelling in your ankles, etc., doesn't necessarily mean you do not have fluid retention. I had no swelling on my first visit with my cardiologist but he had me lie down and turn my head to one side. He then pressed on my liver and looked at my jugular vein on the side of my neck. He told me that I had fluid retention up to my ears and it was not detectable any other way.
     Pacing yourself is important and you will have days when your energy level is very low, often because you have overdone it the day before. Are you limiting your sodium and fluid intake daily? Are you weighing yourself daily? How do you know that there is no fluid in your lungs? Having a sudden change in your energy level needs to be checked out by your doctor immediately.
     I was originally diagnosed with bronchitis and asthma last October, but in May I got the flu and couldn't shake it. I entered the hospital with severe pneumonia and was put on a ventilator and put to sleep. When I woke up 6 days later in the ICU, I shockingly discovered that in addition to pneumonia, I also was diagnosed with CHF, CM, and ARDS (Adult Respiratory Distress Syndrome). I feel very fortunate that I am here to be typing this.
     I have always considered myself to be a positive person, but I have had many incidents since my diagnosis where I have been scared, depressed and negative. I recently had an echocardiogram which indicated an increase in my EF to 40%. It has given me a positive charge in my everyday life and I am very blessed to have my wife and soulmate and two sons who support me every minute. I am still trying to know my body, which is something I don't think we men do enough. I think the key to living with CHF is knowing that we are in for a lot of peaks and valleys, which really are nothing more than what real life is like. Hang in there! morses4@msn.com


Dave's August 21 reply to David A's August 21, 2002 - Hi David, One possible reason I'm aware of is a herniated disk between vertebrae in the upper region of your back. The herniated portion of the disk places pressure on the nerves running to your arms and hands. This can cause everything from numbness and tingling to severe pain. A spinal x-ray can easily find a severe herniation. An MRI is sometimes required to find a smaller but, nonetheless bothersome, herniation. dstuart@us.ibm.com


Jon's August 21 reply to David A's August 21, 2002 - Hi David, I almost hate to even say it since it is so obvious, but you have made sure it's not a heart attack or TIA, right? Jon.


Joseph's August 22 reply to Rick T's August 21, 2002 - Hi, Rick I have an ICD and I feel more comfortable with life since I carry my paramedic in the ICD. It is a good insurance policy. I really don't know how I survived without it, Joe. joeandol@shawneelink.net


Joseph's August 22 reply to Dave's August 21, 2002 - Hi, I have an ICD and I have been warned not to let anyone do an MRI on me because it is magnetic and will affect the ICD, Joe. joeandol@shawneelink.net


Mel G's August 22 reply to Dave's August 21, 2002 - Hi Dave, When I read your post I thought, "Oh, I can relate to that" and then, "I'll reply with (hopefully) some words of wisdom." <g> Then I read Bob's reply. He said it so well, particularly about the fear, depression, and anxiety. I don't think any one of us has escaped those feelings.
     The other point, about knowing whether it's because you overdid it the day before, had too much sodium, are having a side effect of meds, feel emotionally down, have progressive symptoms, are just learning how to listen to your body or are getting worse. Gosh, I found with all the variables it was 6 months of confusion before I could pin down what was even a likely cause for feeling suddenly pretty lousy. Even at that, I wasn't necessarily correct. Needless to say, worrying that it is a worsening of your CHF and that death is imminently on your doorstep is awful. It doesn't help you at all to worry like that but I found that sometimes that's just the way it was with me.
     In the weeks and days leading up to my diagnosis, I was walking 12 to 15km a day, paddling another 10km a day and doing lots of landscaping and gardening. By the time I got out of hospital after acute CHF, serious pulmonary edema, and an EF of 21%, I was unbelievably weak, and very down. Even 3 months later I could barely walk 300 meters and when I went Christmas shopping, my husband pushed me around in a wheelchair! Yeuch.
     My cardio said that I should have been "scampering" around by February but I just couldn't do it. By March I was feeling better, and by April or May I was walking 5km a day. Oh man, that felt so much better. I still don't understand how I was able to do so much when I was obviously getting very ill last year.
     So Dave, everyone is an individual and we all heal at different rates, react to meds differently, and have different emotional lives, but with this group there are a lot of us who go through the same things, or very close to the same things all the time. You can gain a lot of strength by just hanging out at this site, and applying the ol' "tincture of time" to your symptoms - and of course following all the docs' recommendations.
     Best of luck, and I'm hoping for improved health for you. falmouth@bigpond.com


LaRae T, August 22, 2002 - Hi Jon and all who read these posts, I have recently had 2 valves replaced (mitral and aortic) that were genetically flawed and causing heart failure. About 4 months after surgery I started seeing black spots on my right eye so I went to an opthamologist who diagnosed my problem as "temporal arteritis." I was given large doses of prednisone (100mg reduced to 60mg a week later). I was given a biopsy of my temporal artery and a check of my carotid arteries. Both turned out negative.
     I have been trying to wean myself off the prednisone, which has been very difficult, ever since. Suddenly last week I started to lose sight in my right eye again. After a visit to the opthomologist and many tests, I have been told that a piece of cholesterol broke loose from one of my repaired valves and is caught in a vein behind my right eye. My arteritis doctor and my opthomologist have said there is nothing they can do for me. I have called my heart doctor and have yet to hear from him.
     I am very worried since I was given the impression by one of my doctors that this piece of cholesterol could break out and travel to my brain, resulting in a stroke and brain damage. My eyesight is significantly impaired also.
     Has anyone ever had this problem? What can I expect and can anything be done to ease this situation? Will I have a stroke or what? I would really appreciate any information I can get from all of you, LaRae. LaRaePT@msn.com


Mel G's August 22 reply to David A's August 21, 2002 - Wow, quite a story. I'm glad you're okay after the "shock" of being back in Seattle. :-) I think your recommendation about "knowing about your illness" and taking things in stride are important ones. I'm really sorry to hear you got two zaps that knocked you off your feet.
     Have you figured out the arm pain? Could it be a lack of blood flow resulting from a too-tight seat belt over the shoulder or anything like that?
     I'm 10 months post-diagnosis of CHF and DCM and feeling quite well, until yesterday that is. I went to my cardio who says I've had a significant run of ventricular tachycardia. With my family history (mother died of SCD after DCM) he's now booked me to fly to the mainland (I live on an island) next week to have an ICD implanted. I asked about CRT (bi-ventricular pacing) but he thought (the EP doc will know for sure) that with my QRS complex no longer than 100ms I probably wouldn't benefit much at all from that aspect of it. Apparently if you have LBBB or a wide QRS you can sometimes feel significant benefit from CRT along with the ICD. Do you have this?
     Have you had an interrogation yet? Do you know why the zapper fired? I hope you're feeling better these days. falmouth@bigpond.com


Judy H's August 22 reply to Margaret's August 20, 2002 - Hi, My husband (EF about 15%) has been taking his prinivil in 2 doses for quite awhile (20mg BID). He has a problem with low blood pressure. He also staggers prinivil and Coreg, so that he doesn't take both too closely together. This has worked for him. jmh@bright.com


Vicki, August 22, 2002 - Hi everyone, I haven't posted in a while but thought my recent experience might be of interest to some considering getting off your meds. As you may know, I was diagnosed with cardiomyopathy in February of 2001. At the time, my EF was 40 to 45% and it was assumed that the cause of my problem was probably viral in nature.
     In February of this year my EF was up to 60 to 65% and my blood pressure was real low. I felt terrible: depressed, dizzy and spacey-headed. My cardiologist had said that I was to remain on my meds for life. I was on 5mg Zestril, 25mg Coreg twice a day, and 0.25mg Lanoxin. My internist disagreed with my cardiologist and thought I could maybe - with careful monitoring - get off my meds. He thought that I should seek a second opinion, which I did. The second opinion doc thought that it would be worth the try going off my meds as well.
     To make a long story short, as of July 8, I have been off Coreg and Lanoxin. I remained on the Zestril. I had an echo done yesterday and the tech was nice enough to tell me the results. I see the doc next week to formally hear them. However, in just about 6 weeks time my EF has dropped to 48 to 52%. I am shocked at how fast this happened, when by all accounts I seemed so normal. I guess the handwriting is on the wall and I expect to be going on Coreg again. Boy, do I dread it, but as my dad says, "It beats the alternative."
     I'm thankful that I was monitored closely and now I know that I will be on the meds for life no matter how lousy they make me feel. Thanks for letting me vent. I hope my experience will help others in the same situation. God bless you all, Vicki. Snevetsii@aol.com


Linda, August 22, 2002 - Hi, I just wanted to add a reminder that you can have severe heart failure with a normal or even a high EF. That is my case. My EF is 55% but I am in class 4 heart failure. My Vo2max is 11.
     The culprit in my case is restrictive cardiomyopahty. My heart is very strong and pumps very hard. I can sometimes even feel it through my chest; but my heart muscle is so stiff that it can't relax enough to refill adequately with enough blood to support my physical efforts. So a high EF isn't the only indicator of heart failure. zame@earthlink.net


Kathy, August 22, 2002 - Hi, Thanks for this web site. Boy, I'm taking an unwanted crash course in cardiomyopathy and CHF! I have a question about taking meds with food. How much food? What kind of food? What would happen if I don't take it with food? I take Coreg, Lotensin, Digitex, Lipitor, aspirin, Lasix and Protonix; generally at 7:30 AM and Coreg and Lotensin at 7:30 PM as well. I have never been a breakfast eater and putting food in my mouth before about noon makes me nausous so it's very hard to take my meds with food most days. Evening meds are usually taken with supper or if a little later, with a snack but again, is a slice of watermelon enough? Thanks, everyone. kathyh@linkny.com


Jon's August 22 reply to Kathy's August 22, 2002 - Hi Kathy, I haven't looked this up; I am just talking from personal experience. My only med that should be taken with food is Coreg. If you don't, it can really jack your blood sugar levels, which would affect some people greatly (energy disturbance, stomach pain, etc.) and others not at all. CoQ10 should also be taken with some fatty food like a spoon of low-sodium peanut butter or a few nuts, or something. Very little food is required. I don't know if fruit would be a good choice for Coreg. Jon.


Roz' August 22 reply to Vicki's August 22, 2002 - Hi Vicki, Your post brought back memories of my days on Coreg and my gratitude to the physician who found alternatives for it. Please reread Jon's comments in his note to Caroline (8/21) on the relative importance of EF in evaluating CHF. And best wishes for lots of those "good days." Roz. RWarriston@aol.com


Jon, August 23, 2002 - Hi everyone, I could use a little help. I am having a hard time getting this site listed at Yahoo's directory. If people with the time and inclination could send an e-mail to Yahoo staff just wondering why www.chfpatients.com is not listed under "heart failure" and secondly "cardiomyopathy" at Yahoo, it might help. If you'd rather call them, see this page: http://docs.yahoo.com/info/address/ (or 408-349-2000 as I got it thirdhand so use this number cautiously)
     Please be really nice and not too insistent - this is just meant to remind them that this is a site that can really help people if people needing it can find the site. I just want the site to help as many people as possible - I lose money on this sucker so it's not a greedy motive. <g>
     You can also write or call them at: Yahoo!, Inc., 3420 Central Expressway, 2nd Floor, Santa Clara, CA 95051. ... Main Corporate Telephone (408) 731-3300; Fax (408) 731-3301; User Support Telephone (408) 731-3333 - Extension #1 for information on submitting a new URL (I don't know if that last number and extension is only for paying users or for anyone with a site, so use that number cautiously).
     Just ask if they have had a chance to review the www.chfpatients.com web site and briefly explain how the site would add value to their directory by providing unique and sought-after content. Jon.


Joseph's August 23 reply to Vicki's August 22, 2002 - Hi Vicki, I have had at least 4 echos in the last 2 years, and the tech who does the test is not the person to tell you what your EF is. My doc was very upset when I told him what the tech said on one of my echos. The doc made sure this did not happen again. The tech, I am sure, tried to help, but if he read it too high you will feel great and then your doc says it is less and then you are depressed. So please don't place too much stock in what a tech says, Joe. joeandol@shawneelink.net


Dave's August 23 reply to Mel G's August 22, 2002 - Hi Mel and Bob, Thank you so much. Your experiences are invaluable to me. I have to be honest, I'm scared; not so much for me but for my 29 year old wife and 4 beautiful children. They didn't exactly sign up for this. I went to the ER last night, where they did the usual stuff: EKG, vitals, chest x-ray, listened to my heart and lungs, etc. Everything checked out good.
     Bob, the doc even did the fluid retention test you spoke of without me asking her to specifically perform it. She was very thorough. She even instructed me on how to have my wife perform the test at home. The ER doc's take on the whole situation was more or less the "exhaustion/fatigue caused by CHF" that seems to be lasting a little longer than you are used to.
     At any rate, I called my regular cardio and had a regularly scheduled echo pushed up to this Monday just to make sure everything is okay. To all of you, thank you so much. Again, with me being new to this, this can be some seriously scary stuff and your words of wisdom and stability are soothing and helpful. dstuart@us.ibm.com


Margaret D's August 23 reply to Kathy's August 22, 2002 - Hi Kathy, Boy, I know what you mean about eating before noon. I have spaced my meds apart just for that reason. I take my morning meds at 10:00 AM, Prinivil at noon, then the twice daily stuff at 10:00 PM. I'm not a morning person anyway. I force down at least half a banana, a piece of bread (no sodium of course) or half a container of yogurt at least with the Coreg. It not only can affect your blood sugar, but the most important reason to take something with food when it is directed as such, is to slow down the absorption of the drug. Side effects like low blood pressure can be much worse if the drug is absorbed too quickly. Verapamil is that way also. So it is really important to take Coreg with food. mdavis10@tampabay.rr.com


Gail, August 23, 2002 - Hi, My question is about wanting to drive 1,000 miles, and staying awake to do it. I often get so tired that I must close my eyes and sleep comes on with very little notice. Is this from CHF or meds' side effect? gailshouse@hotmail.com


Tracey C, August 23, 2002 - Hi everyone, Has anyone gone on a cruise since being diagnosed? I'm wondering specifically about the food siutation. Did you have any problems with the food they served? Did you bring your own? Is there a huge selection or did you have to special-order prior to the cruise? Any input would be great. Thanks and have a great weekend, Tracey. 2tcollins@cox.net


Sharon, August 23, 2002 - Hi, I wanted to ask if anyone here has used or heard of a new drug for CHF called Natrecor. If you have, what was your experience with the drug? Thanks, Sharon. updegraff2000@yahoo.com


Lisa, August 23, 2002 - Hi, This is the best site I have ever been to! Thank God for this site! I got a virus 3 to 4 days after my third baby was born. Two days later, I stopped breathing and was in ICU on a respirator. I was then diagnosed with PPCM and CHF. That was February 23, 2002.
     Anyway, they thought I wouldn't make it, but thanks to God, I am here! I have been feeling like my old self until the last 3 days. I have been very short of breath and am feeling really weird. I am terribly lightheaded and my chest hurts and feels tight. Also, my legs just hurt but there appears to be no swelling. I know this is normal in CHF but it seems to be more bothersome than usual. What should I do?
     Also, I wanted to ask a question about disability. I was turned down from disability. What did you do after you were denied? They denied me because I had improved since treatment but I can't afford much more treatment since I have no insurance. They took the word of a chiropractor (who they sent me too) over my cardiologist. Government is funny! If you can give me some pointers, that would be great! Thans so much! we-asil@juno.com


David A's August 23 reply to Jon's August 22, 2002 - Hi, Thanks Jon, for the heads up about TIA and heart attack. It seems to have been neither of those. Regards to you and everyone on the board. DEZEN@worldnet.att.net


Tom S, August 23, 2002 - Hi, This has been one miserable summer for me, having spent most of it flat on my back with an EF that has been bouncing around in the low teens, and incredible fatigue. I can only compare the fatigue to "flight" dreams we all have, in which we are trying to run away from something or somebody but feel frozen in place and can't get away. It's just that bad. Sometimes I can't even click the computer mouse, my hands feel so paralyzed.
     I am not digging for sympathy - I wonder if anybody has been in a similar situation this summer. I live near Charlotte, North Carolina and the temperatures have been in the 90s for the most part. We have had mostly code yellow, orange and red ozone days.
     I also wonder if supplementary oxygen might not alleviate some of the fatigue I feel. I mention the supplementary O2 idea primarily because I will be seeing my VA doctor later this week and she usually is receptive to any ideas I may have to improve my condition. I also suggest it because of the very nature of the fatigue, which feels the same as if I had run a marathon and hit the wall, with the accompanying muscle pains that come with that feeling. Thanks for any ideas. bigheart@muchomail.com


Susie O's August 23 reply to Tom S' August 23, 2002 - Hi, It has been miserable I think all across the country, but I know what you mean about the fatigue. I'll go outside and feel short of breath, and my chest aches before I'm halfway where I'm going, outside walking. I go out before the day heats up but still feel this way, I guess from the humidity.
     My ankles aren't swollen but my legs (below the knees) feel like they are half again the size they should be even though they are not really swollen to look at them. They do swell, but they get so hard they hurt. Oh well, so much for my pity party. I hope you get some ideas to help you out the rest of the summer. texlady1@hotmail.com


Dorothy's August 23 reply to Margaret D's August 23, 2002 - Hi Margaret, I wanted to pass this along to you for what it is worth. I had been on verapamil prior to being diagnosed with CHF. The doctors took me off it. I think they said it could increase the heart rate. Good luck! DPowell806@aol.com


Elaine's August 23 reply to Tracey C's August 23, 2002 - Hi, I have not been on a cruise since the May incident with my CHF, but we cruise often and you shouldn't have any problem at all. Depending on what cruise line you are going on, there are a couple of things you can do or look for.
     If you are concerned about sodium content, ask your travel agent to request a low sodium diet for you at least 3 weeks before sailing. Other than that, there are normally selections on the menu that are designated heart healthy and of course the amount of fresh fruits and vegetables, along with fish, is amazing on nearly all the ships these days.
     By the way everybody, I am scheduled for an angiogram (cath) and arteriogram on the 9th of September. It's almost a done deal that I will need a femoral-femoral bypass and the cardiac doctor shudders to think what my heart looks like. September may turn out to be the longest month of my life. (sigh) ElaineM43@aol.com


Caroline S' August 23 reply to Lisa's August 23, 2002 - Hi Lisa, Please get a lawyer to help with your disability claim. Being turned down on the advice of a chiropractor over a cardiologist is incredible, and an appeal is a reasonable thing for you to do.
     As to the symptoms you describe over the last 3 days, I suggest you call your cardiologist right away and describe them. I know its the weekend now, so I'd call the doctor's emergency number and talk to whichever doc is on call for his office. cxscott@aol.com


Dorothy P, August 24, 2002 - Hi all, I know the heat is bothering a lot of us. I have posted this before, but I don't think it can be mentioned too often. My doctors say 40 to 80 degrees is the ideal temp for CHFers and I have proven them to be correct. :-(
     Once I got too hot going from a very cool car to a builders' supply that only had paddle fans. I got too cold going from my home out to a car, probably not more than 40 feet, the temperature was in the upper 30s. Both times my heart rate went to 170 and I had to go to the hospital where they used an IV and meds. Luckily, my heart went back into normal rhythm each time. I have learned I can go out in the cold by holding a heavy scarf or muffler over my nose and mouth. I haven't solved going out into the heat so I stay home. Good luck to each of you! DPowell806@aol.com


Loretta D, August 24, 2002 - Hi, I have a question about swelling. Every time I see my doctor, he checks for swelling in my ankles. I do not swell in my ankles and never havem but I do swell around my stomach and arms. The doctor always dismissed this. Just 2 weeks ago after swelling for 2 days (I know because I could hardly walk those days), I lost 8 lbs overnight after I took additional Lasix. Does anyone else have similar swelling? lorettad7@comcast.net


Jon's August 24 reply to Loretta D's August 24, 2002 - Hi Loretta, Yes. I swell first in my stomach, then face, then hands. I have only swollen once in my ankles and that was my initial CHF episode when my entire body swelled up like the Goodyear blimp.
     According to Success With Heart Failure, page 44, swelling occurs in the back, stomach, face, hands, feet and ankles, internal organs like the liver, and even the genitals. Dr. Silver says that if you swell in your ankles, you are already swollen internally because that occurs before the ankles swell. The fact is that people get edema differently - at different rates, in different places, from different triggers. So you are not alone by any means.
      This is another reason to have a CHF specialist. Regular docs never believe we can swell in our gut and not in our feet, but that's how it always happens to me, too. Jon.


Shirley, August 24, 2002 - Hi, I was diagnosed with CHF five years ago. I now have a pacemaker and take my meds: Lanoxin, Imdur, lipitor, Accupril and an aspirin a day. I am curious if anyone else suffers from numb feet and hands due to CHF. Poopsie214@aol.com


Joe S, August 24, 2002 - Hi, Well, it has now been 5 months, 2 weeks, and 4 days since they gave me a new aortic valve. Some amazing things have happened:

  1. My ankles are so thin I can see the bones after 63 years of thinking all ankles looked like that.
  2. My stomach has shrunk 3 to 4 inches. Now they believe me when I tell them it wasn't from overeating.
  3. My weight has gone down 35 lbs and I haven't done anything to cause it - it's fluids.
  4. For the first time in my life, I can now walk up some small hills and at a fairly rapid pace.
  5. However I have also found out major problems can set me back quite a bit. A company stole a huge sum out of my checking account on Monday and all week I felt rotten with high blood pressure again.
  6. This scar sure takes a long time to heal.

Hey, why doesn't everyone get their aortic valve replaced? Joe S. jes@gbis.com


Myrtle, August 24, 2002 - Hi, My CHF was diagnosed 5/2 by cath. My EF is 35%, down from 50% after the infarct I had in 1991. I have edema, an enlarged heart, and blood pressure still too high. My energy is worse then in May or June. My meds for CHF are: 20mg Lasix, 10mg potassium chloride, 3.125mg Coreg twice daily, and 40mg Diovan. My cardiologist put me on the Diovan, I couldn't tolerate ACE inhibitors. I think he will suggest increasing the Diovan, which when I began taking it, I slept during the day one to 2 hours plus 9 hours at night, and was weaker than now.
     Any suggestions would be appreciated. I can't even do the minimum without having brain dysfunction and needing to nap for an hour or more. God be with you. omie@axs4u.net


Joseph P's August 24 reply to Lisa's August 23, 2002 - Hi Lisa, I think everyone is turned down the first time. My first time I was sent to a shrink, then to a medical doctor for a physical, and I had a lot of things wrong with me but they turned me down. I refiled for reconsideration, which I call the second step. I was turned again even though I was worse. I refiled the third time, which is a hearing with an administrative law judge. Before I went to that, I was approved. Good luck and hang in there, because it will take several months. It took me a year and half before I started to receive payments, Joe. joeandol@shawneelink.net


Jacky, August 26, 2002 - Hi, I just read an article about a blood test for CHF called BNP - B-type natriuretic peptide. Any info would be appreciated. Jackymwb@aol.com


Kelina, August 26, 2002 - Hello everyone, I am 32 years old and have been diagnosed with cardiomyopathy and CHF. I have also had a previous cardiac arrest and have an EF of 32%. I was wondering if there were any other young people out there going through the same thing. There are days that I can't even walk into the next room without being short of breath and my heart racing with chest pain and paroxysmal a-fib.
     My doctors have me on digoxin (Lanoxin), Lasix, metoprolol, nitro patches, potassium chloride, and magnesium supplementation. I'm having a difficult time adjusting to not being able to be as active as I have been, and am probably going to have to quit school and work. Is there anything I can do to get my life back? I'm wanting to get my EF back up and to not feel so fatigued all the time. I'd welcome any help to learn how to deal and cope with my illness. Thanks, Kel. kelimar@ALLTEL.net


David A's August 26 reply to Mel G's August 22, 2002 - Hello Mel and thank you for your post. Yes, Seattle was an electrifing city to say the least - "shock it to me." I haven't figured out the arm pain yet, but it has not returned since before my August 21st post. Good luck with your ICD implant. By the way, what island do you live on?
     You will do fine and be up and about directly. I'm sure your EP (electrophysiology) doctor will provide you with pros and cons with regards to your requirements and the need for biventricular pacing. As I'm sure you will, ask the doctor every question you can think of about the EP study and if need be, reason for the ICD implant.
     As a matter of fact I do have LBBB, one of a number of challenges I've been blessed with, and have discussed pacing in the past with my EP doc.
     As far as interrogation of my ICD, I have that done every 3 months by the EP staff. While I was laid up in Seattle, the hospital called in the Medtronic representative and my unit was interrogated there as well. They basically check your settings, adjust them as necessay, look for sustained events and resulting therapy, if any.
     They think the reason my unit fired was that I was running a lot on adrenaline and this had a direct impact on my heart. As a result, my Coreg has been adjusted upward from 25mg BID to 31.25mg BID. The hope is that this increase in Coreg will decrease the effect of adrenaline on my heart and so far, so good. It has been 5 weeks since my ICD fired.
     Please let me know how things go. Regards, David A. Dezen@worldnet.att.net


Shauna Y, August 26, 2002 - Hi Everyone, I have been feeling rather poorly, like many of you have been lately. The doc increased my Lasix again. I am just having a terrible problem keeping fluid off. I am keeping within the fluid and sodium restrictions, but probably have been doing too much. So I am cutting back on some of my activity, especially in this awful heat and humidity. I have been experiencing awful dizziness lately and just can't figure it out. I have a metabolic panel done every 2 weeks right now, and my potassium levels, etc., are all normal. Any ideas? I would really appreciate anything that someone may know, that could help me. Thank you, and God bless. yorkieraj@aol.com


Nancy S' August 26 reply to Jon's August 23, 2002 - Hi Jon, I tried to send an e-mail to Yahoo and I got one back saying that I posted it to the wrong address. I've looked at different ones but am still not sure where to send it. Can you give me the addy please? I'd really like to help because I know this site helps! Thanks for this, and for being here for us, Nancy. ns1@alltel.net


Jon's August 26 reply to Nancy S' August 26, 2002 - Hi Nancy, Well, Yahoo tries very, very hard not to ever have a real person respond to anyone ever, for any reason. This is causing them bad press but they are stuck in that groove. You can try every address on the page I gave in my last post http://docs.yahoo.com/docs/pr/contact.html) or try webmaster@yahoo-inc.com or webmaster@yahoo.com. This is why I also gave snail-mail and phone contact info in my post - because Yahoo staffers are so deliberately slippery.
     Personally, I never use the Yahoo site for anything anymore because other search engines are better and the Yahoo directory is always out of date. However, a lot of first-time surfers do use it so I suppose I should be listed there. ;-) I wish I could give you a sure-fire e-mail address, but they deliberately make it impossible. Jon.


Frank Smith, August 26, 2002 - Hi, To all of those, including our friend Jon, who struggle with physical and emotional pain, DL-phenylaline, as it pertains to endorphins and enkephalin, is a source to all who have grown weary of medical tradition and medicines which are a necessary help and a detriment to our well-being. If one can focus on the power of the brain and the fact that it controls every human function necessary for life, then we can understand how the chemicals in the brain are so dramatically important. If you are so inclined, just type any one of the words I have capatilized into a search engine and follow your nose/brain. If you have any questions, I'm here. Later, Frank. marquasmith@nethere.com


Jon's August 26 reply to Frank Smith's August 26, 2002 - Hiya Frank, I know I'm being ornery here but I can't help myself. What do you think about this theory: The brain is just a user interface for the mind? And the mind is,....? Jon.


Jim's August 26 reply to Vicki's August 22, 2002 - Hi, I tried slowing down on Coreg and felt CHF coming back. I did this on my own. I won't play around anymore myself. I have weighed more than ever since being on Coreg (4 years). When diagnosed, I weighed 230 and now I weigh 260 to 280. I also wonder about the spaced-out feelings I get. I go off into my own little world and stare blankly at whatever is in front of me. People talk to me and I can hear them but I don't always respond. I wonder if this is a form of depression. JDDJJ3817@aol.com


Myrtle, August 26, 2002 - Hi, I didn't make myself clear in my post of the 24th. I want to know what I should ask or tell my doctor when I see him on Tuesday, 8/27. Dr. R. thinks that the Diovan is the way to go and I am feeling worse since I started all the meds listed in my 8/24 message.
     Does anyone have any suggestions as to what to ask, how to explain that I am so much worse? I know going off the meds isn't the answer, but I don't know what is. This is unnerving for me. Any suggestions appreciated. omie@axs4u.net
 
Jon's note: Do you stagger your med-taking times? take food just before the meds?


Jon, August 26, 2002 - Hi everyone, More posts later - I have to run an errand that may take a couple of hours at least and if I don't cook today, I have no decent food to eat! <g> Jon.


Michael's August 26 reply to Kate's August 20, 2002 - Hi All, It has been awhile since I posted but I am still doing well. Kate, I too had a problem walking; in fact doing even "normal" stuff before CHF, as a result of being almost 300 lbs and smoking.
     I thought I had a sentence of death for quite awhile. I lost 30 lbs of water in the hospital and have lost an additional 70 in the last year. I believe cardiac rehab helped me tremendously. They started me out slow on the treadmill at 2.2 miles per hour. I graduated at 2.7 with a 1% grade for 20 minutes. I now do an average of 20 minutes at 3.7 on a flat grade with an additional 10 minuters at a 5% grade. I could barely walk from my chair to the bath last August.
     They also taught me about portioning my food. I always thought 12 to 16 ounces of meat was a portion, not 3 to 4 ounces. Anyway, restaurants serve way too much. I hope this helps and please forgive me if there are any errors because I just got a new keyboard and the letters are paler - I am a visual typist.
     I am waiting to hear on my echo done last Thursday. The doc seems to think my EF should be higher because I feel better, Michael. kamikaze99@charter.net


Elaine WB's August 26 reply to Lisa's August 23, 2002 - Hi Lisa, I see some of the others advised what I advise: Get yourself a lawyer and refile. It took me 3 1/2 years to get mine. I tried on my own without any help and finally had to get a lawyer. It still took another year and going to their psycholgist. I still had to go through to the review with the administrative law judge to have mine completed. I got back pay from the date I originally filed. That helped some, but it was still a hassle. My lawyer had a set fee that he collected from the back pay out and that was only if I was approved. If I didn't get anything, neither did he. I probably would have never gotten it without his help. The money is yours that you have paid into Social Security and by rights you should have it. Good luck! bewblack1946@hotmail.com


Michael S, August 26, 2002 - Hi there, This is to anyone who has been turned down for Disability by any government agency. I was denied VA (Veteran's Administration) Disability in 1982 because they said the condition was previous. Thank goodness for a VA doc that cared. I was told that a clerk looked at my records and not a doctor. Also, it doesn't matter if it was pre-existing or not, it just has to be aggravated by the service so I have re-filed for that, plus I have just been made aware that there are some other things to go with also, not CHF-related although it may have contributed to it.
     I had to get a lawyer and go before an administrative judge, but did get SSD. The timeline may not make much difference as to when you get the award or denial. Different parts of the country take longer to process than others. I waited 2 years in Oregon and was told they had not scheduled a hearing yet. I called my old lawyer in Tucson and had it within 6 months. I am really grateful for this site. It helps me a lot. Go with God, Michael. kamikaze99@charter.net


Tom Reidman, August 26, 2002 - Hi, A clinical trial for patients with mild to moderate CHF, class 2 to 3 with ejection fraction of 35% or less, is still recruiting patients for EECP. This involves aggressive drug therapy versus drug therapy plus 35 hours of EECP, an out-patient non-invasive treatment. The trial is being done at 24 treatment centers across the USA. EECP just received a FDA approval for treating CHF. Please see www.eecp.com for more information about EECP in general, or you can contact me directly about the study. best regards. thomasriedman@yahoo.com


Michael G's August 26 reply to Jackie's August 23, 2002 - Hi Jacky, There is quite a bit published in the biomedical literature regarding the B-type natriuretic peptide (BNP) test. Basically, it is hoped that this rapid bedside test will aid doctors in diagnosing CHF when patients who have shortness of breath go to the ER. Now, it is simply a way for doctors to rule out other causes for SOB in these patients. Patients with CHF tend to have elevated BNP levels. I believe there is some thought that these tests may also play a part in therapy with Natrecor, which is actually a recombinant B-type natriuretic peptide itself. Natrecor therapy may interfere with the results of the test. Thanks, Mike. michaelgabay@hotmail.com


Derald G, August 26, 2002 - Hi, Does anyone know of a "poor man's" echocardiogram? I'd like to find a way of "'guestimating" my ejection fraction at home. deraldg@earthlink.net


Myrtle C's August 27 reply to Jon's August 26, 2002 - Hi Jon, Yes, I do stagger my meds and take food with them. I have printed some of things from this site to question my doctor about. At least he will know I want to know everything and not "let him do the worrying." I need to be an important part of my health plan. God bless us all and especially Jon. omie@axs4u.net


Jon's August 27 reply to Myrtle C's August 27, 2002 - Hi Myrtle, I try to throw those two reminders in there mainly because those were two things I forgot to do for a long time and they helped me when I finally got it right. <g> Jon.


Eva, August 27, 2002 - Hello all, I feel the need to vent. I am a class 3 CHFer with an EF of 30% and have been turned down for Disability the 6th time. Man, what do you have to do?!
     I have had this since I was 42 and I am now 48. It has been a long, hard battle and I have thought many time about stopping all treatment and letting nature take its course, but I want to live. I want to be healthy, happy, and pretty again. My weight has soared to the highest it has ever been and I am so afraid it is even harder on me than my actual heart condition. I think I can live with all the other side effects of this illness except the weight gain.
     At my hearing I got the impression the only reason the judge listened to me was for entertainment. I know how all of you feel. We have been robbed of life and what was to have been ours (money) in case we needed it. Cisssy99@aol.com


Jon, August 28, 2002 - Hi everyone, Sorry for the disappearing act. My web host blew 2 routers. Jon.


Derald's August 28 reply to Eva's August 27, 2002 - Hi Eva, First, get a Social Security lawyer if you haven't. Second, maybe you ought to see a psychiatrist about depression. deraldg@earthlink.net


Ben B, August 28, 2002 - Hi, If anybody sees a little black cloud, look underneath and you'll see me. After getting a note last week from the UNUM LTD company saying that basically they were going to cut off my benefits because my EF crept slightly above 35%, I was happy to receive a little brown package from the SSA today saying they are now going to review me. I swear these guys are in cahoots.
     I think I still qualify for SSD based on other criteria, but who knows? I am trying to take a breath on this, but to tell the truth, I am not sure I am up to a two-front battle on this one. In many ways, I am not quite so certain I am in the right as I have improved clinically and have been feeling somewhat better. It is all so sudden and scary, especially in this job market.
     Although it is a bit premature since everything hasn't settled yet, I was really wondering about 2 things. I read once that even if you are cut off from SSD, they give you 6 months more benefits to make up for the ones they held back.
     Also, has anyone ever collected unemployment after collecting Disability? Has anyone else ever actually been kicked off Disability? Has anyone ever actually gone back to work after Disability, and has anyone ever considered it as even a possibility? Thanks a lot. bdbrinkman@juno.com


Jon's August 28 reply to Ben B's August 28, 2002 - Hi Ben, You should indeed get the 6 months of payments if you lose your SSD. It is supposed to be "transition" money until you find work. Jon.


Jon, August 28, 2002 - Hi, A reader has offered 4 unopened bottles of Puritan's Pride brand Q-SORB Coenzyme Q-10, 120 mg softgels with an expiration date of 02/2005. If anyone is interested in them, please let me know, and include your snail-mail address. First come, first serve. Jon.


Myrtle C, August 28, 2002 - Hi, I saw my cardiologist yesterday and gave him print outs from this site on some of the tests, etc. He suggested that I get the BNP blood test and another echo. My symptoms are so much worse and when he sees me he says, "You don't look sick." What does sick look like? It is like the woman who had the inscription on her tombstone: "I told you I was sick." ;-) Gallows humor? I pray an answer will be found. omie@axs4u.net


Joanne R's August 28 reply to Eva's August 27, 2002 - Hi, I guess this might sound stupid, but you don't mention your doctor or your attorney and I'm certain that you seriously need both. If you have this support and it isn't working for you any better than your post would indicate, I think you should be looking for a different doctor and attorney - sooner rather than later! Courage, hang in there, and God bless. muddyrds@hotmail.com


Gloria, August 28, 2002 - Hi Everyone, This is the first time I've posted here, although I've been reading everything on Jon's site for over a year. This is the best site out there. Thanks, Jon! When I get afraid, I always check in and feel better. I've learned more about my condition here than anywhere else, including my cardiologist. I would have given up without this site.
     I'm 36 years old and I have a 10 year old son, a golden retriever, 2 cats (sorry Jon), a ferret, and a fish. I was diagnosed with IDCM in July of 2001. I had an echo showing my EF at 38% and by cath 27% at that time. Prior to diagnosis I was misdiagnosed like many of you. I had a EP study done at the time and it was determined I would not need an ICD. I went along for almost a year except for the initial shock, thinking this wasn't so bad.
     Then in June, while sitting on the couch talking with my parents, I had a cardic arrest - no warning. My father and fiance started CPR and called 911. I just bought my house 2 months prior and the fire station was on the corner. It just isn't my time - I was shocked twice and resuscitated. I spent 13 days in the hospital, 10 of them in ICU. Three of the days I was in a coma and 6 days on a ventilator. The shock caused my EF to drop to 15% but the cardiologist expects it to return to where it was prior to the cardic arrest.
     I now have an ICD/pacer. I feel good, I am just a bit tired like everyone with this disease. I am going for a transplant evaluation. My cardiologist would like me to get on the inactive transplant list in case I need one down the road. He said the wait wouldn't be as long that way. Hopefully, I won't need to go there! I no longer work and have applied for SSD. I can't drive for 6 months because of having a cardic arrest.
      My meds are 0.15mg Levoxyl, 100mg Zoloft, 2.5mg enalapril BID, 12.5mg Coreg BID, 25mg Aldactone, 20mg Lasix, 325mg aspirin, CoQ10, L-Carnitine, Vitamin C, and flaxseed oil. I have a hard time with meds due to low BP. Well, I've been long-winded so I'll close now. I just wanted to bring everyone up to speed since I've been reading about you for so long. Lots of hugs and I will continue to pray for you all. Fun2Glo@aol.com


Jon's August 28 reply to Gloria's August 28, 2002 - Hi Gloria, Ask your CHF doc about switching to Toprol-XL from Coreg. Toprol-XL is easier on people with low blood pressure because it has no alpha-blocking action. Jon.


Jon, August 29, 2002 - Hi everyone, I am sure many of you know this already but I could not announce it without permission, which I now have. Bill Drummond - the man who actually kicked me in the rear when I needed it and thus got this heart forum started back in 1997 - died Saturday after a long illness with CHF, stroke, and more. He will be missed.
     I have received permission to leave his bio up so he is not forgotten and I have updated it, along with these other pages on the site:

Jon.


Elaine WB's August 29 reply to Eva's August 27, 2002 - Hi Eva, I am sorry you are having such a horrible time and I know how depressing it can all be when it hits you all at one time, but I must add my voice to the others: Get yourself a new cardiologist. Only an insensitive brute of a person "claiming" to have your health at interest and taking your money for this supposed care would ever say that you don't look sick. As far as I know, the way you look has nothing to do with how the inside works, or doesn't work, as the case may be. It will be his loss, not yours.
     Also, get yourself a lawyer as Derald suggested, one that specializes in doing Social Security claims. I finally had to do so, and I firmly believe it's the only way I would have ever gotten mine, because frankly, if you look at me even now I don't look sick - whatever that means! I don't look sick on purpose. I try my best to put on my makeup and do for myself as I did when I was able to work. It makes a better frame of mind for me to function. I put a smile on my face and do the best I can each day to appreciate the one more day I have been given and enjoy it! If someone else has a problem with that, they can kiss a stump! This is my life and what I have left of it I do not intend to waste one moment of it listening to what someone else thinks I look like!
     Hang in there girl. You deserve to be treated as a human being, not an illness. If your doctor doesn't have the bedside manners of a buffoon, that's certainly not your fault and you don't have to put up with it. This is your life, not a dress rehearsal, live it! bewblack1946@hotmail.com


Elaine WB's August 29 reply to Ben B's August 28, 2002 - Hi Ben, I am having some of the same questions that you are asking now. My cardiologist says I can go back to work part-time if I want to and can find a suitable job. I really would like to do so. I am only 56 years of age and any amount that I can pay into my Social Security would help me later as I age. You will note I am planning on aging some more! <g>
     Social secuirty has informed me that if I go back to work, my SSD will be stopped and I will not have any Medicare benefits. Thus far, it's been no problem. I still have not found a job and am about ready to quit looking for right now. I am planning to return to university this coming January and finish up my course work for a degree in Nutrition and diabetic care management, while refreshing my Spanish as well. Here in Texas, Hispanics are the largest and youngest growing population of diabetics. I believe I could be useful in that since I myself am diabetic and have lived with it for over 10 years. I am looking forward to returning to school and being busy, but at the same time it's risky business not being able to judge for yourrself how things will come out in the financial dilemma the country is experiencing now.
     The paperwork I have from SSA says that if you are unable to continue working, there is a "fast-track" that you can go through to reinstate your SSD. That helps a little mentally to know that is available, but I don't think it is a given. Although they say you do not have to reapply for the benefits; it's an updating procedure you go through. I have read it but with the Social Security-eze they use in their materials, it's not always certain that you are understanding what they are "saying" without someone to interpret their lingo!
     So if anyone out there has experienced this, please inform us. It would be gratefully appreciated to have some input for this new experience I am having! Thanks and best wishes to all. bewblack1946@hotmail.com


Jon, August 29, 2002 - Hi everyone, The CoQ10 went very fast. More posts coming, Jon.


Michael, August 29, 2002 - Hi, Can anyone suggest to me a device that can measure my pulse during exercise? micnhgavr@cytanet.com.cy


Tom S' August 29 reply to Ben B's August 28, 2002 - Hi, I am not sure what is going on with you or your disability provider, or even what your cardiologist has told them, so it's really difficult to comment on your particular case.
     In my particular case I have gone through the "review" process 3 times in 6 years, and at one time had an EF in the 30 to 35% range. Unfortunately, it has slipped back into the teens. I never had an adverse ruling from SSD during the review process, which consisted of filling out a couple of pages of forms.
     I did not spare the horses as far as telling them how debilitated I felt and total lack of energy I have when trying to accomplish any task. Something as simple as trying to peel potatos is a real chore for me. Anyway, if you are filling out the review form don't be shy about telling them just how lousy you really feel and how limited your activity really is. bigheart@muchomail.com


Gene, August 29, 2002 - Hi, I am new to the forum and am greatly impressed. Many thanks to you Jon, and to all that make it work. I am a 75 year old male, 5' 7" at 123 lbs and have had CHF for a few years. My medications in addition to supplements are: Coreg, Demadex, Lanoxin, Diovan, Coumadin and potassium. I have 3 areas of concern that perhaps you could address.
     1) I have been on Coreg for 14 months but have never been able to get the dosage up to the recommended 50mg per day (25mg twice a day) for individuals under 190 pounds, due to a "melt down." Also, I have difficulty adapting to the higher dosages due to plunging blood pressure (98/48) and a heart rate of 57. While admittedly not understanding all the involved parameters, I think that I may not need the same dosage as a 190 pound individual to achieve optimum results.
     2) During my daily morning walk there are times, especially while walking up inclines, when my legs and to some extent my arms will "sting and burn." Incidentally, I have a very early 90% stress oxygen level. My PCP tells me it is the lack of blood oxygen in my legs and arms causing this and that I should back off until the feeling subsides. Continuing will cause irreparable cell damage. My cardiologist tells me to "push the envelope" for that is the only way that I can improve my activity strength. Do I back off or push it?
     3) In view of the medications I take, especially Coumadin, is there a safe over-the-counter pain relief product that can be taken? The literature states that Tylenol is not a good choice for it modifies Coumadin's performance. Thank you, Gene. clever2@innet.com


Jon's August 29 reply to Gene's August 29, 2002 - Hi Gene, I hope others also reply. Is your cardiologist a CHF specialist? If you have chronic low blood pressure, Toprol-XL would probably be a better choice instead of Coreg. Toprol-XL does not have alpha-blocking properties like Coreg so Toprol-XL does not lower blood pressure as much. With Coreg, you do see less benefit the lower the dose, but that does not mean you lose all benefit by any means. Some is better than none, but more is better yet.
     I am not a doctor, but I would say that your exercise level depends on your risk factors and condition. If you do not have angina or irregular heart rhythms, you will probably need to push it to get benefit - just don't get crazy. <g> Muscle fiber types change in chronic heart failure and exercise is the only way known to slow or reverse such changes. Also, chronic CHF messes up your endothelial function and exercise may be the best way to stop those changes as well. The endothelium is the layer of cells that lines all our blood vessels and it plays many critical roles in bodily functions.
     I don't know about over-the-counter pain relievers so I sure hope someone else answers that one. ;-) Jon.


Pam, August 29, 2002 - Hi Jon and readers, I have CHF, DCM, and an EF of 35 to 40%. I used to have tons of PVCs all the time, then it went to just evening time, then it went away, but came back in the evening. It happens when I go to bed and lay down. I feel them throbbing.
     My cardiologist says my irregular heartbeat (PVCs) are nothing to worry about. I have had an echo recently, and my EF has gone up, heart size down, everything to the good. However, these irregularities are annoying. Does anyone experience this? Why would I get them only when I go to bed at night? Thank you for any responses. mattnpam@juno.com


Margaret D's August 29 reply to Gene's August 29, 2002 - Hi Gene, It sounds like you might have something called intermittent claudication in your legs. That's when you get pain in your calves when you walk. One treatment is to walk until you have pain, rest until it goes away, then keep walking some more. Eventually, you will be able to walk farther and farther without pain. It is caused by poor arterial circulation in your legs. Good luck! mdavis10@tampabay.rr.com


Derald's August 29 reply to Gene's August 29, 2002 - Hi Gene, I had trouble titrating to Coreg dose too. My pulse until noon is usually in the low 50s gaining to the 60s and sometimes 70s later in the day. I finally leveled out with a weird blood pressure between 110/40 and 135/50 and occasionally an 80/38. I generally feel okay at rest. The point is don't let it scare you unless you feel bad, other people have low heart beats and low blood pressure and do okay. Also, my cardiologist has a rule that is cleverly delightful, "If it takes you longer to recover from an activity than it did to do it - you've hit your wall."
     An interesting note to all who have left ventricular dysfunction. My pulse pressure (systolic BP - diastolic BP) has increased into the 60 to 80 range. I was concerned because of really low diastolic readings and found that high pulse pressures (normal is 30 to 40) are really a bad thing to have unless you're a CHFer with LVD - it's an indication the medicine is increasing your stroke volume, raising your EF. I hope I got this right! deraldg@earthlink.net


Derald, August 29, 2002 - Hi, You know what seems to be harder that getting Disability? Getting partial Disability! I've got about 4 good hours between 10: AM and 2: PM. I need the rest in the afternoon. Of course there are days when I don't feel good at all or might now feel better until the afternoon. Companies are dying to hear that you need to be able to work whenever you feel like it, and that there are a lot of times you'll be in late, leave early, or not show up at all.
     I'm sure that all of you are aware the Supreme Court is making it awfully hard for people to get Disability. One of the justices said, "If you can brush your teeth, you can work." Hmmm, how many companies out there are paying good wages for you to brush your teeth 3 times a day? deraldg@earthlink.net


Derald, August 29, 2002 - Sorry, one more vent. My mom at age 66, recently had a pulmonary embolism. Suspecting that her SOB was heart failure, they did an echo and her EF was 71%. She has drank, smoked and overeaten all her life. I read elsewhere that 65% was considered normal for an EF. Where are we getting the idea that 50 to 55% is great?
     For instance, if my mom is 71% perhaps I was about 70% when healthy. So going to 50% for me is like someone else going from 50% to 30% (although I've been 30%) as well. Does anybody have any thoughts on that? deraldg@earthlink.net


Jon's August 29 reply to Derald's August 29, 2002 - Hi Derald, An EF of 55% or higher is in the normal "range." That is 55% and up. Some people with severe heart failure actually have high EFs. That is simply a different form of heart and circulatory system dysfunction. Some people go through life with an EF of 45% and are extremely healthy and active. Different people have different "normals" and that's why a "range" is used in almost all medical measurements.
     Also, remember that EF is a percentage. If your heart fills incompletely, then a high EF may still leave you gasping for breath because it is a percentage of the amount of blood that fills your heart during relaxation phase. These are reasons why EF is only one measure of heart function, and certainly not an all-powerful way to view how badly off your heart may be. ;-) Jon.


Amelia's August 29 reply to Myrtle C's August 28, 2002 - Hi Jon, I am sorry to hear that Bill Drummond died, I know how much he meant to you. If I remember, Bill told me that his Rosie also has a heart problem. I pray she is alright.
     Myrtle, as for a doctor telling you that you don't look sick, well, in my book he's not so bright. They kept telling my husband the same thing and 9 months later he died from cancer. Are we supposed to go to the doctors in our pajamas, uncombed hair, dragging like something the cat brought in to prove how we really feel? Best to all, Amelia. amelias@erols.com


Robin Cantrell, August 30, 2002 - Hi, I came here a year ago and came back because I have a close friend with CHF and when I went to see her last night, she was feeling bad. She has been crying the past few days over some personal issues. I hear this is normal for someone with CHF. I told her about this site so I hope she comes on here so she can learn all about her condition.
     I feel so sad that she suffers with this condition. I wish there was some way I could help make it go away but I know I cannot. I just needed to tell someone how sad I am that this person I love is suffering with CHF. I enjoy this site, it has helped me to understand CHF better. Thanks Jon, for making such a wonderful site for us all to enjoy and learn from. Robin In Missouri. robinlea42@yahoo.com


Ben B, August 30, 2002 - Hi, Some people seem to have such a true honest empathy for others that they exude a charm, warmth and caring even across an electronic medium. I think Bill Drummond was like that and he will be sorely missed. bdbrinkman@juno.com


David B, August 30, 2002 - Hi, I'm a long time hypertension sufferer who has until very recently been taking a combination of Coversyl and Norvasc (mg/10mg) with 10mg Zocor. Prior to this combination of drugs, I was on Plendil and before that, I think more than 15 years ago, I was taking Betaloc. Due to a change in my employment circumstances here in Singapore, I've just joined the local polyclinic (community health centre) to help reduce my day-to-day living costs.
     The polyclinic physican was quite terse about the cost (to the Singapore public health system, of course) of Coversyl and promptly prescribed 10mg atenolol. Now, as this drug is a beta-blocker like Betaloc my feeling is that I'm going backwards in terms of effectiveness of treatment. Does anyone have any advice that I could judiciously use at my next session with the physician? dbeattie@qxd360.com


Jon's August 30 reply to David B's August 30, 2002 - Hi David, If you are saying that you are no longer taking an ACE inhibitor of any kind, then surely you have thousands of pages of info to support your need for one - along with some cost-effectiveness studies that support the wisdom of prescribing you one. Start at the ACE inhibitor page and then work through Medline, available through the Links page. Atenolol does not have the proven CHF benefits of other beta-blockers. Toprol-XL does, and is available in generic form (metoprolol succinate CR/XL). I'd push for an ACE inhibitor and Toprol-XL in your situation. Jon.


Tom S, August 30, 2002 - Hi, Despite the fact we all are very aware of the particular fragility of life it is always sad to hear that another of our ranks has be reduced by yet one more soul. We all have hopes and dreams that perhaps somehow we will beat the odds and live a long and productive life than our true conditions will allow.
     Bill Drummond didn't mince words. He knew his condition and he knew exactly how he got there. If you don't believe me read his biography. For that reason I admired Bill for his honesty and grit. If I had toddy to tip I would raise it and give one last hurrah to a man who could have been nothing but a pleasure to have known.
     I knew him from a distance and feel cheated that I never had the opportunity to shake the hand of a man who walked so confidently in life and never seemed to fear being in the shadow of death.
     To Bill's loved ones we can only extend our expressions of sorrow in a feeble attempt to console them in their loss. Final peace has come to Bill as it no doubt will come to us all. "Well done, thou good and faithful servant: thou hast been faithful over a few things, I will make thee ruler over many things: enter thou into the joy of thy lord." Matthew 25:21 bigheart@muchomail.com


Pamela's August 30 reply to Michael's August 29, 2002 - Hi, If you go to the Sharper Image, you'll find a great pulse-taking system that consists of a watch and a strap that goes around your upper chest. The strap has a sensitive device on it that takes your pulse and transmits the pulse to your watch so that you can see the numbers as they change. It's somewhere around $150 and I can't remember the name of it, but they'll know. Good luck! chibutter100@yahoo.com


George S' August 30 reply to Michael's August 29, 2002 - Hi Michael, In looking for a heart monitor watch to use during exercising, I started by using the Google search engine at www.google.com. Type in the exact words with quotes "heart monitor watch" and you'll get a host of options. Some quick places to check are the ads (links) down the right side of that particular search results page.
     I've had a good experience with a fairly basic (not too many bells and whistles) version of the Polar brand, which is available at Best Buy-type stores for about 50 to $75. Best of luck. georgeselin@myppi.biz


Allen, August 30, 2002 - Hi everyone, I was wondering if anyone has heard of or currently uses anti-ACE peptide 500mg. It was recommended to me and I would like to know if this would interact with my ACE inhibitor (Altace (ramipril). Thank you and God bless, Allen. allenvicencio@hotmail.comM


Jon's August 30 reply to Allen's August 30, 2002 - Hi Allen, I have no idea if it would help or hurt. However, tell your doctor since it could change the effective dose of your ACE inhibitor. Jon.


Ruthie A, August 30, 2002 - Hi Jon, If my grief is anything near to yours at the loss of dear Bill Drummond, than my prayers are with you! When I joined this leaky boat in 1997, just a few months after it's conception, Bill was the primary support for this very scared and uninformed sick woman. He gave me encouragement, information, and a kick in the pants when I needed it, whether I asked for it or not! It is an understatement that he will be missed.
     Please extend my sympathies and heartfelt prayers to Rosie. Being married to Bill for so long must make her bereavement incredible. Please reassure her of my love and concern, as well as thank her for her willingness to share her husband with us. Thanks, Ruthie A. rlaba51@yahoo.com


Dawn B's August 30 reply to Amelia's August 29, 2002 - Hi all, I was only 34 when I was diagnosed with IDCM. The nurses and doctors would always say I looked too good to be sick. I finally realised that if I just had my shower and didn't fuss with extra grooming and wore comfortable clothes, not only did I look more how I felt, I wasn't as tired. gdbeckford@sympatico.ca


Margaret D, August 31, 2002 - Hi, Well folks, the unheard of has happened. I was diagnosed in mid-June with IDCM, applied for Disability in early July, and today I received notice that I was approved! Is that not incredible? My EF is 15%. The SSA office called about 2 weeks ago and said that they had not received any supporting documents from any doctors. She said to have the cath report faxed over as soon as possible and "then we can move quickly on this." I was skeptical but payments now start in December. Apologies all around to those still waiting! mdavis10@tampabay.rr.com


Margaret D, August 31, 2002 - Hi, It's me again! On another note, I was supposed to have an ICD implanted today. Because of congenital malformations of the vena cava or subclavian vein or some such thing that we didn't know about ahead of time, they were unable to do it. They tried both the right and left side without success. The electrician (electrophysiologist) even called the other guy in for a consult while he was in there. He said he has done about 100 implants a year and I was only the second patient that he couldn't get the ICD in on either side. Lucky me! Has anyone ever heard of this happening? These two are the premier electrophysiologists in the area. In addition, it took the anesthesiologist 3 tries to get the arterial line in. What a day! I guess the Disability approval is the consolation prize for the day! mdavis10@tampabay.rr.com


Amelia, August 31, 2002 - Hi everyone, I saw my CHF doc today for a "pre-op"exam before having the EP study. I wanted to know why it was so important to have this procedure since he said I was doing so well. I have left ventricular systolic dysfunction, SVT, first degree AV block, inter-atrial septal aneurysm with shunt, and TIA.
     They are hoping they can do an ablation, and study the extent of deterioration of my heart. Hopefully, they will be able to treat me with the proper meds to slow down the deteriorating. Two electrophysiologists, my CHF doc, and the anesthesiologist will be in the operating room with me.
     They don't know if I will need a pacemaker and if so, I don't know if it will be done later. I will be kept overnight. My CHF doc said the chance of my having another stroke was low. As for another cardiac arrest, well at least I will be in good hands. I have put this procedure off for awhile and finally came to terms with the hope that it will help me. I have been very emotional, but forgot to mention this to my doc. Is this part of CHF? Best to all, Amelia. amelias@erols.com


Amelia, August 31, 2002 - Hi again, Sorry, memory lapse is taking over. I forgot to mention that my CHF doc thinks I should go off premarin hormone, but he wants my gynecologist to make the final decision. New studies have shown that estrogen may cause heart problems. I would appreciate comments on this. Will an enlarged heart stay enlarged or become reduced at times? I ended up in the emergency room while taking Toprol-XL with extreme weakness, dizziness, and shortness of breath. My doc wants to wait till I have the EPS before putting me on another med. Best to all. amelias@erols.com


Jon's August 31 reply to Amelia's August 31, 2002 - Hi Amelia, Enlarged hearts can get smaller and they can also then get larger again. My own heart size went down drastically after a few years on meds but has recently enlarged somewhat again. Jon.


Mel G's August 31 reply to Margaret D's August 31, 2002 - Hi Margaret, I'm so sorry you've had to go through all that. During the (attempted) implant, were you under general or were you only sedated? It sounds a little traumatic to me.
     I've had much the same diagnosis as you (in October for me), although my EF was 21.6%. Recently I was flown to a hospital in another state and have been here for 4 days now, undergoing observation and an EP study. I am scheduled to go in the operating room Tuesday (48 hours and counting!) for insertion of an ICD. Anxiety? Whew, I guess you could say so. I would really wonder about anyone who wasn't emotional and anxious to some degree facing their future as a patient with DCM, CHF and an ICD.
     Once things have settled down a bit, then of course you try to adjust and live with your condition. The knowledge gained from this site as well as the wonderful people on this message board will help you invaluably with rehabilitation.
     I hope they are able to implant your "built-in paramedic" somewhere for you. I remember reading that the early devices were always abdominal, but that is done rarely these days due to the ease and popularity of the subclavian area. Perhaps they would do an abdominal implant for you? Wishing you all the very best. Please keep us posted. falmouth@bigpond.com


Norma's August 31 reply to Amelia's August 31, 2002 - Hi Amelia, Yes, I am convinced that hormone treatments caused my CHF. I had no family history of heart trouble, low blood pressure, had been checked for heart condition only 2 years previously and was declared sound. Six months after starting homone therapy, I was diagnosed with CHF and cardiomyopathy, and told I was class 4.
     The doctors couldn't explain it although I told them at the time I believed it was the medication. Three different cardiologists told me that hormone treatment would have helped, not caused my condition. That was in 1996 and now they sing a different tune. I am still class 4 according to all tests, but my heart muscle is flexible so I lead a pretty normal life except I take it a bit easier than I used to do.
     I am hitting a bad patch right now because of swollen tonsils that has debilitated me, but after 2 weeks, I feel I'm getting back to normal (for me anyway). Regards to all on this site who are not doing as well, keep your chins up, it will get easier, Norma. Normadroz@aol.com


Barbara F, August 31, 2002 - Hi People at The Beat Goes On, I have been back in the hospital for congestive heart trouble and it was so weird this time. My husband was awakened by me flailing my arms and tossing and turning with super strength, unconsious of what I was doing. He tried to stop me by holding my arms and holding me down while he called the paramedics.
     At one time I was aware he was doing so but could not speak and I was making terrible noises. I do recall the paramedics asking me my name and out I went again. At the emergency ward I was aware of my son being there and finally I came around and stayed that way. My doctor and my cardiologist both are saying I was confused and agitated and saturated with fluid in both lungs. I had been taking Lasix as needed, which had not been for some time. We had gone to Las Vegas for a reunion and we had been eating out so I was unaware of how much sodium I was taking in, although I have always been conscientious of my salt intake.
     Anyway, to make a long story short and a scary one for me, I was wondering if anyone else has ever had an episode like this happen to them? They had been adjusting my Coumadin dose for the last month. I am now back to taking my Lasix every day and naturally counting the sodium grams. It was just such a nightmare that I wonder if it was a seizure or stroke. I have asked both of the doctors and their answer is that I was gasping for air and agitated and confused. I go to see them both this week, Barbara F. Bfletch1017@msn.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.

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