Jon 9-16 posts and page updates
Joe S 9-16 question about arm fatigue
Elaine 9-16 seek similar experiences
Joe 9-16 hard time getting my Coreg
Phyllis W 9-16 seek Plavix experiences
Mary 9-16 can you have bypass surgery with a very low EF?
Myrtle C's 9-16 reply to Herbert L's 9-14 Tricare For Life & more
Ben B 9-16 has anyone gone off disability & back to work?
Patrick 9-16 what about TrimSpa for losing weight?
Jon's 9-16 reply to Patrick's 9-16 it has ephedra in it
Craig B 9-16 does anyone else have these work problems?
Sandy's 9-16 reply to Mary's 9-16 bypass with low EF experience
Clara D 9-16 my CHF experience
Donna H's 9-17 reply to Ben B's 9-16 EF doesn't tell the whole story
Stan's 9-17 reply to Ben B's 9-16 trying to do too much
Scott Brown's 9-17 reply to Craig B's 9-16 coping with diuretics and more
Joanne 9-17 nice to know I am not alone
Myrtle's 9-17 reply to Craig's 9-16 jobs and more
Myrtle's 9-17 reply to Jon's 9-16 thanks for BNP test info
Mari 9-17 screening for peripheral vascular disease
Tracey C 9-17 familial cardiomyopathy
Cindy's 9-17 reply to Mari's 9-17 is that the right Url? thanks
Ben B's 9-17 reply to Donna H's 9-17 it's not my choice
Jon 9-17 mailings
Craig B's 9-18 reply to Scott Brown's 9-17 Lasix, fluids, Slow-K question
Cat 9-18 vasopeptidase inhibitor questions
Jon's 9-18 reply to Cat's 9-18 vasopeptidase inhibitors
Craig B's 9-18 reply to Ben B's 9-16 EF, disability benefits & more
Mary 9-18 has anyone had a heart PET scan?
Jon 9-19 Coreg shortages report, mailings
Kathy 9-19 NSAID question
Jon's 919 reply to Kathy's 9-19 NSAID use in CHF
Dorothy Powell's 9-19 reply to Ben B's 9-17 my Disability insurer experience
Janet TB 9-19 what does lung congestion feel like?
Jon's 9-19 reply to Janet TB's 9-19 just one experience here
Janet TB 9-19 hard being sick but not looking sick
Judith Miles 9-19 Jim died yesterday
Jon's 9-19 reply to Judith Miles' 9-19 sincere condolences
Derald G's 9-19 reply to Tracey C's 9-17 is it this study?
Derald G's 9-19 reply to Clara D's 9-16 bundle branch block and more
Myrtle 9-20 test don't tell the whole story & more
Beverly 9-20 EECP for me?
Jon's 9-20 reply to Beverly's 9-20 I don't know
Dorothy Powell's 9-20 reply to Derald G;s 9-19 bundle branch block
Mary 9-20 confused about EF (ejection fraction)
Tammy 9-20 what should a young person expect from CHF?
Scott Brown 9-20 Coreg should come in 50mg tabs
Scott Brown's 9-20 reply to Janet TB's 9-19 lung congestion
Scott Brown's 9-20 reply to Craig B's 9-18 fluids & potassium, stomach cramp question
Scott Brown 9-20 exercising may help
Frank Smith 9-20 muscle and potassium questions
Jon's 9-20 reply to Frank Smith's 9-20 muscle and potassium
Jon 9-20 mailing list
Tracey C's 9-20 reply to Derald G's 9-19 I'm not sure
Rob P's 9-20 reply to Scott Brown's 9-20 chest wall spasms & more
Clara D's 9-20 reply to Derald G's 9-19 sudden death pacemakers & more
Ruthie A's 9-20 reply to Scott Brown's 9-20 GERD possibility
Kathy 9-21 cause versus prognosis question
Jon's 9-21 reply to Kathy's 9-21 I don't know
Dorothy Powell 9-21 Coreg availability, thanks
Dave Ks 9-21 reply to Derald G's 9-19 my LBBB experience
Jacky 9-21 beta-blockers and depression
Ben B 9-21 cath news, update, disability
Jon 9-21 prayer request
Giorg's 9-21 reply to Scott Brown's 9-20 Coreg sizes & seek Coreg experiences
Sherishe 9-21 seek support and info
Ernie D 9-23 seek panic attack suggestions
Huey 9-23 wire pieces in body after surgery?
Bernard 9-23 shortness of breath
Derald G's 9-23 reply to Scott Brown's 9-20 peripheral edema?
Vernellia R 9-23 seek CHF doc in general Dayton area
Scott Brown's 9-23 reply to Giorg's 9-21 when I take my meds
Jon's 9-23 reply to Derald G's 9-23 peripheral edema
Ginny 9-23 seek heart recipients
Jon 9-23 mailings
Liz D 9-23 pain and strange feelings
Jon's 9-23 reply to Liz D's 9-23 please head to the doctor's now
Russell 9-23 this has been one big shock
Jon's 9-23 reply to Russell's 9-23 you are understood clearly here
Roz W 9-23 fake air and shortness of breath
Jon's 9-23 reply to Roz W's 9-23 fake air and shortness of breath
Dorothy Powell's 9-23 reply to Ernie D's 9-23 a friend's similar experience
Mike 9-23 why the wait for SSD decision after hearing?
Dan 9-24 EF is fine now - am I fine too?
Jon's 9-24 reply to Dan 9-24 figuring it all out
Liz D 9-24 doc says it's nothing, what now?
Jon's 9-24 reply to Liz D's 9-24 it's your call, your life
Scott Brown's 9-24 reply to Liz D's 9-24 don't take such big chances
Norma's 9-24 reply to Ernie D's 9-23 my panic attacks
Jon 9-24 to Russell
Sheryl 9-24 to Russell
Mike's 9-24 reply to Liz D's 9-23 get more tests - really
Liz D 9-24 wake-up calls
Jon's 9-24 reply to Liz D's 9-24 thanks for understanding
Ernie D's 9-24 reply to Norma's 9-24 thank you & I figured it out
Scott Brown's 9-25 reply to Russell's 9-23 it gets easier with time & more
Jon 9-25 mailing for diabetics, prayer request
Jon 9-27 update
Wayne 9-28 tests accuracy question
Kathy 9-28 arrhythmia or palpitations
Jon's 9-28 reply to Kathy's 9-28 arrhythmia, palpitations, trigeminy & more
Craig B 9-28 Liz, getting medical attention & more
Jon 9-28 back later with more
Janet TB's 9-28 reply to Liz' 9-24 lung possibility
Janet TB 9-28 pulmonary hypertension & more
Jon's 9-28 reply to Janet TB's 9-28 pulmonary hypertension and Coreg dose
Jon 9-28 tax exempt status
Derald G's 9-28 reply to Dave K's 9-12 scary experience & more
Janet TB's 9-30 reply to Jon's 9-28 is MUGA okay if you have PVCs?
Jon's 9-30 reply to Janet TB's 9-30 MUGA and PVCs
Cat's 9-30 reply to Liz' 9-24 SOB, DHF, flu - questions
Jon, September 16, 2002 - Hi everyone, Sorry but posts will be a bit late today. I was polishing off huge updates on the BNP Test page and Exercise FAQ page. Jon.
Joe S, September 16, 2002 - Hi, Although I am feeling better and better since my aortic valve replacement, certain arm movements really bother me. It seems like any movement, even head high, fatigues me quickly. Any ideas? Joe S. firstname.lastname@example.org
Elaine, September 16, 2002 - Hi folks, Okay, to refresh your memory, I was the one with CHF after knee replacement surgery and had the awful cough with Zestril. My Zestril has been changed to Avalide and this is much better.
Monday I had a left heart cath and an arteriogram for peripheral vascular disease. As I was very sedated, the only thing I remember about the heart cath was a very puzzled cardiovascular surgeon trying to figure out what in the world happened to throw me into CHF. It turns out that as I suspected, it was doctor error and fluid overload.
The big thing was that both my iliac arteries were blocked and he did a balloon angioplasty on me and inserted 3 stents. Has anybody here ever gone through this? I need to compare notes since the doctor has not returned my phone calls. It's not an emergency, so please don't worry. ElaineM43@aol.com
Joe, September 16, 2002 - Hi, Regarding a possible Coreg shortage, I take 15.625mg twice a day. The pharmacy had trouble getting 180 each 3.125mg pills. They came in a week late and were in little boxes of shrink-wrapped pills of 7 per sheet and they have to be cut off with scissors. I live in Michigan. email@example.com
Phyllis W, September 16, 2002 - Hi, I don't post very often any more but I still try to keep up with web site. I have a question. Does anyone or has anyone taken plavix? If so, did it make you real tired or did you have any other problems with it? How long have you taken it and didn't it bother you at first? Thanks. firstname.lastname@example.org
Mary, September 16, 2002 - Hi, Has anyone known of anyone who has ever had bypass surgery with a very low EF, like 18%? Thank you. email@example.com
Myrtle C's September 16 reply to Herbert L's September 14, 2002 - Hi Herbert, Tricare for Life is no help for me because we have BC/BS, which has a much more expensive copay for meds. Tricare For Life won't allow us to use their Rx service because of that. We hesitate to drop BC/BS since the government has renigged on several health programs in the past. My post really was aimed at people who hope for (and expect) help from the government in some form of Rx costs. This is just a ploy which will never happen in my lifetime.
I sent you a great ranting letter about Tricare For Life but the address you sent me didn't firstname.lastname@example.org
Ben B, September 16, 2002 - Hi, I have a cath on Thursday. Unfortunately, my dad recently caught a staph infection and died as a result of a cath, so my family is not so happy about the turn of events. I'm only a little concerned about the procedure but my mom could use prayers because she is a little upset. Basically, my doctor is getting the squeeze from the disability companies who are trying to cut me off. It seems they no longer care about his opinion of my health, only test results. So he is ordering up all sorts of tests for me.
He has been really good about everything, including the "can never work at any job ever" line and the Tom S' special about being "terminal." They just don't care, they want empirical data. I hope SSD, who is also reviewing me right now, isn't so tough. I think if you are over 50 you have a better chance of passing reviews than if you are younger (45 in my case). As a matter of fact, I thought I read something somewhere about having no reviews at all on SSD after age 55 or so, but maybe I'm mistaken.
I am sort of coming to the conclusion I may just have to go back to work or at least give it a shot. If Stan can work full-time, hunt and fish with an EF of 15%, I should probably give it a shot at 35 to 45%. Heck, I just don't know. Plus, there is the little problem of no longer having a job at a time when it is hard to find one, even if you don't have to explain almost 4 years of Disability.
Once again I'd like to hear from anybody else who has gotten off disability and gone back to work, or is planning on it. There were a few people who corresponded with me before about themselves or their husbands trying to get back to work, but once it became a reality for me they didn't seem that interested in continuing the conversation. email@example.com
Patrick, September 16, 2002 - Hi, I have been hearing great testimonies from friends about how well the Trim Spa product works at helping to lose weight. They say it is very effective, but I'm wondering if anyone has heard of any side effects or bad happenings from those who are on CHF meds. Thanks, Patrick. NarleyHarleyGuy@webtv.net
Jon's September 16 reply to Patrick's September 16, 2002 - Hi Patrick, TrimSpa contains ephedra, which should not be taken by anyone with a heart condition, including heart failure, sorry. Even TrimSpa's web site says so. Jon.
Craig B, September 16, 2002 - Hi everyone, To look at me, you may see a fairly normal looking guy, maybe a little on the overweight side, maybe a bit of grey that wasn't there last year. The problem is that trying to work at a normal job has just been impossible. Apart form having to visit the bathroom every 15 to 20 minutes half an hour after taking my 80mg of Lasix (lasts about 4 hours) and then needing to "rest" after about 4 to 5 hours up, the shortness of breath if any activity is started and the general tiredness of self, I am completely normal.
My specialist writes a note for Centrelink (Australian Social Security) that I am capable of light duties. This would be great if I could get a job that allowed 20 toilet visits in the first 4 hours at work, supplied a rest break every 2 hours, and required me to lift nothing heavier than a light bag of groceries - plus gave me flex-hours and 3 days off per week. These jobs just don't seem to exist and if they do, I can't seem to find one.
So now Centrelink has granted my Disability pension and for that I am grateful. I just hope that my own specialist sees it the same way when I next visit him, and I can convince him too that a "normal" job is very difficult for me. We (me anyway) don't seem to have quite the option of getting a specialist that we like/dislike - we don't really have a choice;not without paying, something I can't afford. We have to be happy with who we get. "Finding" the right one for me at least isn't even an option.
Does anyone else have the same situation with their jobs and their medications interrupting that job? Craig. firstname.lastname@example.org
Sandy's September 16 reply to Mary's September 16, 2002 - Hi Mary, Yes, my hubby had his triple bypass when they found his EF at 15%. He did have a balloon pump put in 2 days before the surgery. If you have any questions, give me an e-mail or post here! :-) Sandy. email@example.com
Clara D, September 16, 2002 - Hi, Thanks to Derald and Ruthie for sharing their experience and advice with me and special thanks to you Jon, for making this site possible. I think I've read just about everything on it by now and I can't begin to tell you what a great help it has been. My own history is different from any I've read about here, so maybe it would be of interest.
I'm 69 and have always been very active, doing all my own house and yard work, hiking, strength training, etc. At my annual physicals for a couple of years I had told my doctor that I seemed to tire more easily. Since she had also been hearing a slight heart murmur from time to time, she decided last October to have an echo done. The result was a diagnosis of DCM with a 14% ejection fraction. She started me on enalapril and referred me to a CHF specialist who doubled my dose of enalapril and ordered a cath. It confirmed the low ejection fraction and also showed basically clear coronary arteries. Unfortunately, the CHF specialist and I were not a good match and I returned to my internist for care.
By now I had a terrible cough and major fatigue. I thought it was disease progression. As I did more research I began to suspect the drug, and finally after two months decided to discontinue it. All my symptoms disappeared. At the urging of my doctor I restarted the drug at a much smaller dose and the symptoms promptly reappeared. So I discontinued it again and started myself on Coenzyme Q10, first at a very small dose and then gradually worked up to 50mg three times a day. I also made sure I got a rest every day and started to exercise again. I soon felt better than I had in a couple of years.
However, friends and family urged me to see a cardiologist and I found one I liked who was into integrative medicine. He approved of the the CoQ10 and said 150mg was the right dose, and started me on Cozaar. This was in May. I lasted 2 weeks on that drug. I had severe insomnia and diarrhea. Then he unexpectedly gave up his practice and I was again without a cardiologist.
By now I knew I needed a CHF specialist and I think I've found a very good one. I saw him for the first time last Friday. Having now been stable for almost a year since being diagnosed, he thinks I have probably had this condition for many years and for some reason my body has continued to compensate. I have had an LBBB since at least 1977, when it showed up on an EKG. My LBBB didn't appear on an EKG done in 1973. Fortunately, I save copies of all my medical records. He thinks the LBBB was caused by the DCM, so the DCM goes back at least that far.
As a first step, he wants me to try Diovan, which I will do, starting with a very low dose. He also plans to do periodic echos to monitor my mitral valve and will replace it if necessary. The echo done on Friday showed that my EF was still low, but the condition of my mitral valve has gone from moderate to mild! Why? Who knows?
The fact that I don't have coronary artery disease, diabetes, or high blood pressure, don't abuse alcohol or drugs, don't smoke, and that I exercise, am not overweight, and eat a decent diet are all in my favor. I also have been trying various relaxation exercises and I'm on a friend's prayer list. Maybe the CoQ10 is responsible. I forgot to take it once for 24 hours and really crashed. It took almost a week for me to get back to normal. That's my story. I hope it helps someone. firstname.lastname@example.org
Donna H's September 17 reply to Ben B's September 16, 2002 - Hi Ben, I was very interested in your statement that if "Stan can work full-time, hunt and fish with an EF of 15%, I should probably give it a shot at 35 to 45%" because my husband has an EF of 30 to 35% yet he is unable to work at all. SSA keeps trying to get him "retrained" as he was a cop and they think he can do a desk job, but I am not sure they are right.
He "works" in my store half days. I am not a very tough boss but he doesn't get any pay either. He is free to rest any time he wants. If he doesn't feel like working at all, that is fine too. I don't think he is going to find many jobs like that.
He also has Sick Sinus, a couple of valves that are slightly leaky, a-fib, a pacemaker, and of course an enlarged, weak heart. He would love to be able to hunt and fish again but just isn't able. Sometimes the EF just doesn't tell the whole story. I wish you the best in going back to work. I know it must be frustrating to not be able to do what you want to do. email@example.com
Stan's September 17 reply to Ben B's September 16, 2002 - Hi Ben, Please don't push yourself because I have. I am very lucky. My doctor did not want me to work and offers to take me out every time he sees me. Only attempt to go to work if you feel up to it. I get very tired and have to rest often. My job is very understanding. I also find that if I don't take one day a week and do nothing but rest, I am no good for anything. I also said I pretend to hunt. Every time a deer comes near I get excited and cough, scaring it away. I just go through the steps and enjoy myself. We cannot be superman with our conditions. firstname.lastname@example.org
Scott Brown's September 17 reply to Craig B's September 16, 2002 - Hi Craig, The degree to which CHF affects people is different from case to case. When I was first diagnosed I felt the same as you. The meds have really helped but I still have lousy days. Starting a new position would be crappy. I work in an office and they are very understanding of my condition as well. I was lucking to beat a round of layoffs.
This is how I manage to make it through the day: I try not to take Lasix at work. If I need to take Lasix, I will take it before or after work. I never take Lasix more than once a day, but I take 120mg and it usually works well. The effects of Lasix last for roughly 6 hours (it is a contraction for "LAsts SIX" hours). For me, the frequency of washroom visits is the greatest somewhere between hour 2 or 3. I try my best not to be caught somewhere between at these times. If I start work at 9:00 AM, I might set the alarm for 5:30 AM, take my Lasix, and start washroom calls at about 6:15 AM.
There are other ways to get rid of fluids. One way is a good sweat from a workout. I find I am always very thirsty after a workout, so it has advantages and disadvantages. Take lots of potassium when you take a water pill. I tried to do this naturally with orange juice and bananas but over the long-term, Slow-K will help to ensure you do not get too low. If you are low on electrolytes, you will feel awful (50% of my tiredness can be tracked to potassium deficiency from using duiretics). Do not take Slow-K on an empty stomach unless you like indigestion and heartburn - yuck!
Reducing fluids is just as important as taking diuretics. If you can get down to a litre a day, you are not going to need much duiretic as frequently. I make my drinks boiling hot or ice cold, as appropriate. It seems to make them more refreshing and last longer.
Weight is the tell-all about when you need to take diuretics. Weigh yourself every morning so you know where you stand. Try to guess your weight before you check it. This will help you to equate what you eat with what you weigh, sodium ingestion causing water retention. The better you know yourself, the better you can cope.
Do not take diuretics after 6:00 PM and never after 8:00 PM. You will be up all night going to the washroom, and that is going to mess up your sleep as well. With good planning, this should never happen. I hope there are some suggestions that work for you here. I still get caught in cars and the water pill is kicking into full swing about 2 hours after it was supposed to start. It happens to all of us. All we can do is minimize the number of times that happens. Scott B. email@example.com
Joanne, September 17, 2002 - Hi, This is just a note to say I have enjoyed reading your posts. I am glad to know I'm not the only one dealing with heart problems. I am battling fatigue. I have cardiomyopathy, diastolic dysfunction and am on many different medicines. I just started on atenolol a couple of months ago. I have been on Lasix for about 30 years now. I have a good ejection fraction, around 60, but my E to A ratio is less than 1. Joanne. firstname.lastname@example.org
Myrtle's September 17 reply to Craig's September 16, 2002 - Hi Craig, I don't have a job problem, only nly because I am 65 and hubby is retired. If I had to make a living I can't imagine what I would do. My doctor thinks I am doing fine. It saddens me to know how difficult it is for you. My prayers go out in your behalf. Let us know how you make out. God bless. email@example.com
Myrtle's September 17 reply to Jon's September 16, 2002 - Hi Jon, Thanks for the update on the BNP test. I had that test and the results indicated I was doing much better then I felt. Your info about taking meds and results for the peptide values provide an insight to my situation. Thanks Jon, for keeping on top of all these tests, etc. I don't know how you could do this without our Lord's help. He blesses us all through you. firstname.lastname@example.org
Mari, September 17, 2002 - Hi, I just wanted to pass along that the week of September 22 to 28th is National Week for Screening for PVD (peripheral vascular disease). The Legs for Life is providing free screenings that week and since a lot of the people here have problems with their feet burning and legs hurting, I wanted to pass this along. The web site is www.heartcenteronline.com/ads/legsforlife.cfm and you can find a free screening site in your area from there. I have my own appointment on September 26th and the agency said not too many people have called for their service, Mari. MS254@aol.com
Tracey C, September 17, 2002 - Hi everyone, As you know, both my mother and myself have cardiomyopathy. She was diagnosed about 10 years ago with an EF of 30%. She refused to take any medications until about a year ago when she began taking a small dose of an ACE inhibitor. Her EF has risen to 47% and her heart is back to normal size.
I received a copy of her echo yesterday and you could interchange our reports. We have abnormal movement in the same exact spots and our EF is the same. Our cardiologist entered us into a familial DCM study so we are awaiting the results, but I don't think there will be any surprises. It keeps me optimistic that she's doing so well 10 years after diagosis and it gives me hope that I also will not worsen, but remain where I'm at. Take care everyone. email@example.com
Cindy's September 17 reply to Mari's September 17, 2002 - Hi, Thank you for the info on vascular testing week. I was wondering if perhaps the address was incorrect. Would you mind rechecking this address? firstname.lastname@example.org
Ben B's September 17 reply to Donna H's September 17, 2002 - Hi, Thanks for your good wishes folks, but I think you don't completely understand. I'm not pushing myself. My insurance company and possibly the government are pushing me off Disability. The SSA may let me stay on but the insurance company is bound and determined to kick me off. I will fight them, but I'm also thinking about the possiblity of work as well. I hope it doesn't happen to anybody else, because it is a bit frightening. email@example.com
Jon, September 17, 2002 - Hi everyone, Another mailing is ready to go out so if you haven't signed up for the Heart Info mailing list, you can do so at www.chfpatients.com/lists.htm. Jon.
Craig B's September 18 reply to Scott Brown's September 17, 2002 - Hi Scott, Wow, Great response. I really know what you mean and see that Lasix (lasts six - never realised that) really does affect all of us differently. I find that mine usually starts working within one hour.
My other huge problem is cutting down on fluid. Before I was diagnosed with IDCM I was a real fluid drinker. I love the stuff, three 600ml bottles a day of water, milk on my cereal, the occasional beer, orange juice and fruit consumption during the day that I estimated to be 4 liters per day. It's been hard, but most days I can maintain about 2 litres now.
What is Slow-K? I wonder if we have that here in Australia? I have to admit, it has been almost a year now and no one (docs or specialists) have actually mentioned my potassium or electrolytes levels, although I have had blood tests once since I returned home from my initial hospital visit. Thanks again, Craig. firstname.lastname@example.org
Cat, September 18, 2002 - Hi, Has anyone heard anything about the new class of drugs called vasopeptidase inhibitors, like omapatrilot, vanlev, or fasidotril? I would appreciate any info. Cat. email@example.com
Jon's September 18 reply to Cat's September 18, 2002 - Hi, I haven't kept up on these drugs for the reasons below, so if anyone needs to correct me, please feel free. Vanlev is omapatrilat. Other drugs in that class include sampatrilat, mixanpril, and gemopatrilat. I know that aladotril was being tried in animal studies as far back as 1994 to 1995. In October of 2001, fasidotril was still in phase 2 safety trials, as far as I know.
In late 1999, the IMPRESS study with omapatrilat versus lisinopril showed a small benefit for all risk end points combined, but no effect on exercise tolerance. This led to OVERTURE starting in spring of 2000 for omapatrilat versus enalapril.
Earlier this year, it was decided that this drug carried too much risk of angioedema for the small extra benefit it gave CHFers. It caused only a 5 to 6% relative improvement (a much smaller real benefit) by slightly reduced risk of death or hospitalization for heart failure than Vasotec (enalapril). Omapatrilat has the same risk for cough and more risk for dizziness and low blood pressure than ACE inhibitors.
I stuck my info about this drug class on the archived New CHF Meds page when it started looking very unlikely that these drugs would be valuable to CHFers any time soon. There is some more info in my zipped text files here.
OCTAVE and OPERA were heart-related trials in this area but not for heart failure and OVERTURE for CHF showed that the NEP inhibitor was as good as ACE inhibitors for heart failure, but no better. See Circulation 2002 Aug 20;106(8):920-6. Jon.
Craig B's September 18 reply to Ben B's September 16, 2002 - Hi Ben, I see you are 45. I know what you mean about being at an age where you potentially have years of work left in you. I have just turned 40. Since I have not been working, it seems to some people that maybe I should be. I guess they just don't understand exactly how I feel or how I am affected by my condition or my drugs (see my bio - Craig Booth).
I think Jon has mentioned it a few times about EF that sometimes regardless of the number, it's more important how we actually feel. My EF is currently at 30%. Most times I feel okay as long as I am only pottering about around my home. I don't know how Jon does the things he does and thank God he can actually maintain this site.
I hope it all goes well with your disability payments, Ben. It seems a little unfair to have been on it so long, and now they want to kick you off. It's a pity they don't seem to realise that this condition is not going to clear up overnight. Hang in there Ben, There's a lot of us in your same boat and we're all praying for you too. Feel free to e-mail me anytime, I'd love a chat with you. Regards, Craig B. firstname.lastname@example.org
Mary, September 18, 2002 - Hi, Has anyone ever had a heart Pet Scan done? email@example.com
Jon, September 19, 2002 - Hi, The FDA was wrong. GSK (Smith-Kline) says they did have a shortage of 3.125mg and 25mg Coreg tabs due to a change in production, but they thought they had it covered already. They say they sent doctors and pharmacies a letter about it and if so, your pharmacy should have had that information last week. If you still have problems getting your Coreg Rx filled, tell your doctor to talk to his GSK rep, who can get you fixed up immediately, or talk to me and I'll see if I can put you in touch with someone who can help but I cannot guarantee anything.
Many thanks to my own CHF doc, Doctor Porter, who helped me out on this one. Also, of course, my thanks to all of you who posted and e-mailed me to show me the pattern in the first place!
By the way, I have not (yet, anyway) heard any indication that 25mg Coreg tabs are not going to be made anymore. I think that sprouted from the production change just completed. They are still being made.
Also, more mailings will be going out this week, so if you want to receive them, sign up here. Jon.
Kathy, September 19, 2002 - Hi, Yet another question. What is the reason for not using Indomethacin for rheumatoid arthritis pain with Coreg and lotensin? Does this apply to all NSAIDs? Thanks. firstname.lastname@example.org
Jon's September 19 reply to Kathy's September 19, 2002 - Hi Kathy, It's not mainly because of the heart meds, but because of the heart failure. NSAIDs cause you to retain fluid, and obviously that's risky business when you have CHF. Also, see the articles about NSAIDs and CHF at Heartbytes. ACE inhibitors and NSAIDs don't mix too well, although both can be taken. Jon.
Dorothy Powell's September 19 reply to Ben B's September 17, 2002 - Hi Ben, I just wanted to pass this info along. I had a stroke in 1995 and finally realized that I was not going to function as I once had. For example, I would read telephone messages and later realize I had read the notes but had not returned the calls. I could list many more problems.
I talked to my disability representative several times. He really didn't tell me just what I needed to do. I talked with my internal medicine doctor several times. She finally referred me to a neurologist. The neurologist referred me to a psychologist who did a series of tests to determine my IQ. Once the specialist determined that my IQ was 79, I was immediately approved and have since been designated as long-term.
The disability coverage company sent a representative who visited me at my home. He was required to look at my medicine bottles to determine if I was actually taking the meds. Once he was satisfied, his advice to me was to promptly respond to any requests from the disability company. I hope this information is useful to you. Best wishes in your efforts. DPowell@aol.com
Janet TB's September 19, 2002 - Hi Everyone, I have a question for those of you who have had chest congestion. How did you know? What does it feel like? Janet T.B. email@example.com
Jon's September 19 reply to Janet TB's September 19, 2002 - Hi Janet, For me, it's a very weird feeling. I could breathe in air okay but it didn't seem to be doing me any good, like all the air I was taking in was really fake and gave me no benefit. I hope that makes some kind of sense. Jon.
Janet TB, September 19, 2002 - Hi Everyone, Picking up on a theme I see woven through here, I think one of the hardest parts about having CHF is that it is largely an invisible condition. Because we don't look sick, why wouldn't we work, why wouldn't we do XYZ, you name it? I work part-time by choice given that I have a baby at home, although my choice may someday be taken from me. However, like you all, I have more than my share of doc's appointments (for example, 3 on Tuesday alone next week). My boss has been more than accommodating (I am very lucky), but I get icy looks and questions from other staff about my absences and it's none of their business.
I don't look sick even on a bad day when I pull myself up the stairs using the railing. I used to take those stairs 2 at a time without a hitch. Sometimes able-bodied people don't understand. What an eye-opener for me, a former able-bodied.
As an update, I had my 7 month follow-up echo last week. The results were unchanged so I am still hanging out in the 30 to 35% EF zone. I was really disappointed although I know things could have been much worse. Keep on keeping on, everyone. Hugs to one and all! Janet T.B. firstname.lastname@example.org
Judith Miles, September 19, 2002 - Hi, Just to keep profiles current - Jim Miles passed away yesterday, September 18th. He had a very bad spell on Sunday and went downhill very, very quickly. He died peacefully. Thank you for all the information and TLC we both have received on this site. Keep up the good work and God bless you all, Judy Miles. email@example.com
Jon's September 19 reply to Judith Miles' September 19, 2002 - Hi Judy, My most sincere condolences. Jon.
Derald G's September 19 reply to Tracey C's September 17, 2002 - Hi Tracy, Is the study at Oregon Health Sciences University conducted by Dr. Herschberger? firstname.lastname@example.org
Derald G's September 19 reply to Clara D's September 16, 2002 - Hi, I've got LBBB too. The doctors act like it's no big deal although I read a study once that said if you have LBBB, and have a heart attack, your chances drop in half of surviving. With your ejection fraction it sounds like you would be an ideal candidate for a biventricular pacemaker. It could definitely improve your EF and help you tolerate medications also. email@example.com
Myrtle, September 20, 2002 - Hi Jon, Once again my thanks for the new mailing about how tests don't always indicate how much disability we senior citizens have. The doctors I have seen are all in their 40s and can't understand my complaints of fatigue, chest pain, etc. I know how I feel and they will only understand if this ever happens to them. God be with you. Your work does help me so much. firstname.lastname@example.org
Beverly, September 20, 2002 - Hi Jon, I would like your opinion about using EECP treatment on an LAD that has had 8 angioplasties, 2 stents, 2 radiations and one artherectomy to try to keep it open. The artery is so mushy and weak that the interventionist won't work on it anymore. I also have coronary artery spasms during some procedures that are hard to get to release. My doc does not believe in EECP and logic tells me that the hard rushing volume of blood would cause the faulty artery to blow. My angina is not such that I can't do most of what I want. What's your opinion? Thanks. email@example.com
Jon's September 20 reply to Beverly's September 20, 2002 - Hi Beverly, I don't know. Literature and detailed technical data on EECP has not been as easy to get as that on other device therapies. If your angina is okay, why mess with it? Jon.
Dorothy Powell's September 20 reply to Derald G's September 19, 2002 - Hi Derald, I just wanted you to know I was diagnosed with LBBB in 1997 and CHF in 2001. The doctor did not seem concerned about the LBBB and said something like, "Oh, you just have a LBBB; now we know why your EKG changed." I didn't know I needed to insist on more information about a LBBB. I at least could have understood the possible relationship of LBBB and CHF. I have found that the more I know, the more I know how very little I do know - or something like that! Best wishes. DPowell806@aol.com
Mary, September 20, 2002 - Hello, I am still confused about a person's EF. Does this measure how weak your heart muscle is? firstname.lastname@example.org
Tammy, September 20, 2002 - Hi, I'm 34 and a female. I had a TIA in December of 2001. Is there anyone out there my age? It seems like all the material for CHF is related to the elderly. Since I only recently discovered I had CHF, I'm not sure what else to expect at my age. email@example.com
Scott Brown, September 20, 2002 - Hi, What we need is a 50mg Coreg tablet that costs less than the sum of two 25mg tablets. For people over 187 pounds who can tolerate the higher dose, we are being made to pay much more than we should have to pay. I can see why the manufacturer is not in a hurry to do this, since it means less money for them. How about a campaign to get Coreg available in 50mg tabs? I heard they are available this way in Europe. Can anyone confirm? Thanks, Scott B. firstname.lastname@example.org
Scott Brown's September 20 reply to Janet TB's September 19, 2002 - Hi Janet, I ditto on Jon's definition completely, you take in the air and exhale. Almost immediately, you need to breathe again because you feel like you didn't take in enough air. It feels like you are running after awhile, but you could be perfectly still.
If you feel this way and you take a water pill, it becomes easier to breath again, sometimes back to what feels normal. This would confirm your suspicion. If you breath in deeply and can hear crackles, it means your lung tissue is absorbing fluids. This can happen to any tissues in a CHFer. I have heard two additional explanations for why we get short of breath. I think both apply to varying degrees depending on your condition.
The membranes in the lungs which process air get coated with mucus so the air fills your lungs but the oxygen extracted is less, depending on the degree of congestion. Number two is that as the heart becomes larger it requires more oxygen from the blood to function. After the heart robs your blood of more oxygen than normal, your oxygen level is depleted further than normal by the time it returns back to the lungs for more oxygen. I hope this helps. Scott B. email@example.com
Scott Brown's September 20 reply to Craig B's September 18, 2002 - Hi Craig, I just turned 33 and have an EF of 24 at last check. I was a huge fluid drinker as well! I would drink two 7-11 Super Big Gulps when I had the chance, in my pre-CHF days.
Low potassium will show up in your blood work but that only gives a snapshot. When you have a bowel movement or urinate, your potassium situation can change quickly and dramatically. If your potassium is low, you could feel tired and nauseated. If you ever get cramps or muscle spasms, there is a good chance it could be potassium related. To my knowledge, Slow-K is slow-release potassium. K is the chemical symbol for potassium. Do not underestimate how much better you will feel.
I wonder if anyone has had a problem with stomach cramps? I had a cramp-like feeling at the top of my stomach. It felt almost as high as my heart. I was so uncomfortable after 4 hours that I needed my wife to drive me to the emergency room. It does not appear this was directly related to my heart. For the past month I have noticed a lot of heartburn, which I do not usually have. My meds have not changed but I wonder if this could be a side effect. I have also had an annoying sore throat and thought it might be the Altace. It is bad enough to be annoying but not bad enough to do anything about it.
Any thoughts would be appreciated. I don't think drinking milk the rest of my life is the answer. Scott B. firstname.lastname@example.org
Scott Brown, September 20, 2002 - Hi All, I was just speaking to a local person from the hospital writing her master's on CHF. She was mentioning that EF does not map very closely to how a person feels and what their abilities are. A recent study suggests that skeletal muscle plays a large role in how well you feel. I assume this means that exercising to build and maintain muscle mass is the best way to beat the deficit of a low ejection fraction. I thought I would pass that advice along. Thanks, Scott B. email@example.com
Frank Smith, September 20, 2002 - Hi Jon and everyone, This is an if you were me question. My muscles have been screaming for months and because of my peripheral vascular disease and weak heart, I am confident that because I take 80mg furosemide daily (but don't forget that 10mg of enalapril also keeps some potassium in my body), my muscles are starving. I have not been taking a potassium supplement because I get a minimum of 5 grams of k-rich foods daily, which is more than the average well person gets. I am concerned that a supplement, say 750mg daily may be too much.
My doctor is clueless because when I told him all of this, he checked my blood potassium level and he said it was okay but he doesn't seem to understand that the contents of your blood does not necessarily deliver enough electrolytes to your organs and muscles. I asked him to take a biopsy of my starving muscles but he said it was not necessary. I hate arrogant doctors. How many mg of potassium would not be toxic, in your informed opinion based on what I have told you, and do you think that over-the-counter k-capsules are just as effective as a K-Dur type product? Thanks, Frank. firstname.lastname@example.org
Jon's September 20 reply to Frank Smith's September 20, 2002 - Hi Frank, K-dur is slow-release and over-the-counter potassium supplements are not. It's huge and important difference. Rx potassium (slow-release) comes in all mEq sizes so getting the proper one should not be difficult, but should be done according to blood tests. Unlike magnesium, blood levels of potassium are fairly indicative, although not perfect, measures of body stores.
Just a couple of reminders - be sure you are getting enough magnesium and calcium. Also, if you are taking a cholesterol-lowering drug, make absolutely sure you are checked for this being a side effect of that drug. Jon.
Jon, September 20, 2002 - Hi everyone, I have more mailings ready to send out and more coming, so if you want to be on the Heart Info mailing list, you can sign up here. Jon.
Tracey C's September 20 reply to Derald G's September 19, 2002 - Hi Derald, I'm not sure who it's through, I'll have to get the information from my doctor. He just arranged for our blood to be taken, etc. I'm hoping to hear back from them soon. It should be interesting. Take care. email@example.com
Rob P's September 20 reply to Scott Brown's September 19, 2002 - Hi, I am a 41 year old male. I have had the same problem you describe including the heartburn. I have had 4 intense episodes during the last year. My heart failure doc and the emergency room doc diagnosed it as chest wall spasms. They claim it had nothing to do with my heart. I am taking Altace, Norvasc, metoprolol, furosemide and APO-K. They all said there was nothing they could give me for it except for Tylenol 3.
I happened to mention it to my rehab doc and he prescribed one mg antivan sublingual. I slip one under my tongue when I can feel the attack starting and I find that it greatly lessens the intensity of the pain and the duration to the point that I can keep working while the attack is happening. firstname.lastname@example.org
Clara D's September 20 reply to Derald G's September 19, 2002 - Hi Derald, I've talked to my cardiologist about a biventricular pacemaker but he thinks that would only be indicated if I had symptoms which I do not currently have. Wouldn't you think that an ejection fraction of less than 15% for a year now would be symptom enough?
I've also asked about a Microvolt T-Wave Alternans Test which identifies patients with non-ischemic dilated cardiomyopathy who are at risk for sudden cardiac death. As far as I'm concerned, sudden death might be a blessing considering the alternative, but I'd like to know just what my risk is because I'd like to babysit my grandchildren but I worry about putting them at risk. What if death came while I was alone with the two-year-old or driving any of them? Well, it turns out that my cardiologist is familiar with the test and has used it but says it doesn't work if you have a LBBB. My bad luck, but maybe it could help someone else.
I try to keep a positive attitude, learn as much as I can, question everything (you have to be your own advocate), and stay active. It helps me feel a little more in control. Thanks for your concern, Clara. email@example.com
Jon's note: If you don't have a long QRS duration on EKG, the CHF pacemaker will probably not help you regardless of EF - see the link in this post
Ruthie A's September 20 reply to Scott Brown's September 20, 2002 - Hi Scott, Regarding the heartburn, stomach discomfort, and sore throat, have you talked with your doctor about checking for GERD? You have described the symptoms I experienced before being diagnosed with GERD and before I began taking medication for the reflux.
The danger in letting reflux disease run away without intervention is that the lining of your esophagus changes, which can lead to a deadly form of cancer - not fun in my book. There are several causes of GERD but with me it is caused by the myriad of medications I take. I never had a problem until I was diagnosed with CHF and started taking all these meds.
My advice it to run it by your doctor. Ask for an upper GI test to see if you are suffering from reflux. If so, there are several medications on the market that can help. I hope it all works out for you, Ruthie A. firstname.lastname@example.org
Kathy, September 21, 2002 - Hi, Someone told me that if the cause of your DCM is viral, which mine is, the likelihood of complete recovery is much higher. Is this true? email@example.com
Jon's September 21 reply to Kathy, September 21, 2002 - Hi, Cause does affect prognosis. I have an article about it here. However, I can't afford to subscribe to journals so I cannot access the full text of the original article. I don't know any specific numbers on the viral cause versus prognosis question. Sorry. However, I believe that non-ischemic cardiomyopathies in general are considered to have a better prognosis because there is usually less physical damage to the heart muscle. Jon.
Dorothy Powell, September 21, 2002 - Hi Jon, I received my Coreg from the mail-order prescription company this week. Maybe the shortage has been resolved. I thought you might be interested. By the way, I've intended to thank you for translating the medical-ese into plain English. I've just read your "translation" on pacemakers and it was very concise and understandable. Thanks for all your efforts - you are appreciated. Best wishes to you and yours, Dorothy. DPowell806@aol.com
Dave K's September 21 reply to Derald G's September 19, 2002 - Hi Derald, I have LBBB as well. It was diagnosed with my original problem, with CHF. It was supposed to be no big deal. I also had a problem with passing out because of low blood pressure which studies could not pinpoint. Two years after diagnosis I got tired, sat down in my Lazy Boy, and started to pass out like from low blood pressure but while sitting. I threw myself from the chair and woke up on the floor. It turned out that LBBB had turned to total AV heart block with a heart rate of 15. I was able to roll to the phone and call 911, who sent an ambulance to cart me off to the hospital for a pacemaker. It was a close call. The reason I passed out apparantly was because heart pretty much stopped and recovered some when I hit the floor. Good old Dave, who hopes to get a litte older. firstname.lastname@example.org
Jacky, September 21, 2002 - Hi, I saw my cardilogist yesterday and questioned whether I should be on beta-blockers having read all the info on this site. He said he would not put me on a beat-blocker at the moment because they have a tendency to be depressive and he does not think that is a good idea for me at this time. He is right! However, there may come a time when I have to take them. Interestingly, there was a post on another board from someone who cannot take beta-blockers for that reason. At the time I wondered if the doc knew what he was talking about. I guess he did. I really do trust his judgement. Jackymwb@aol.com
Jon's note: To find common experiences, please do not forget to search The Archives
Ben B, September 21, 2002 - Hi, I just had a cath yesterday. Good news for cath patients - some places now use new collagen based dressings that speed up the healing time so you don't have to lay still for so long. Before, I had to lay still for 6 or so hours, but this time only 2 1/2. I had the cath at 9:00 AM and they let me go at 2:00 PM. Maybe other people already know about this, but it was news to me!
As far as my results, my doctor basically told me that my arteries are okay and he said, and I quote, "That heart is beating pretty strongly, we may have a tough time convincing the insurance company to keep you on disability with that." After they shot the big flood of dye in there, the radiation tech even said, "Wow, that's pretty darn good." He hasn't actually come up with the EF number yet. He wants to analyze the tapes with some expert they have over at the hospital, so we'll see.
The reason he ran the tests was to see what's up. What he basically told me was that he could relay what I've told him about symptoms, and send on the test information. I can't really expect him to be more certain if I'm not even certain myself.
Anyway, I am happy that my heart seems to be better. As far as disability, more than anything else I'm frightened that my disease could take a turn for the worse at any time. Still, I guess disability is for disabled people, not for people who may become disabled again. I guess I just have to wait and see what happens to me. At least my doctor is buying me some time. email@example.com
Jon, September 21, 2002 - Hi everyone, This is a prayer request for me - not because of my heart failure, thankfully. ;-) I have a face-to-face meeting Thursday afternoon with CHF docs and heart transplant professionals to discuss a collaboration that would offer extended services to readers at this web site.
Please don't pray for success, but rather for me to be listening to - and obeying - Jesus' desires for both me and this web site. This may not be what He wants me to do and if not, I don't want it to succeed. If it is what he wants, I want to be sure and do whatever I can to make it work.
Sometimes I get so caught up in trying to to keep this huge site current that I lose track of the one thing that counts - whether or not I am aiming all my efforts at helping people the best possible way, not just plastering information online. So, prayers requested often between now and then. Thanks, everyone. Jon.
Giorg's September 21 reply to Scott Brown's September 20, 2002 - Hi Scott, Yes, in Europe Coreg (called Dilatrend because it regulates the heart's dilation trend) is available in 50 mg tabs. It is sold by Boehringer Mannheim. However, they sell 15 tabs of 50 mg at the same price of 30 tabs of 25 mg so it does not help.
I have a question if anyone can help. When I take Coreg too late in the morning, like at noon, I almost faint after lunch. Instead, when I take it at 10:00 AM I have almost no problem with my blood pressure. Does it happen the same to some of you guys? I try to take Coreg at 10:00 AM or before, but I was told by my doc to take it at least 2 hours later then my ACE inhibitor, in order to avoid a sum of the effects.
Since I wake up at 8:30 in the morning, sometimes I cannot make it to take Coreg too early. Anyway, I think that is better to take Coreg and ACE inhibitor together then take Coreg late in the morning. Does anyone agree? Thanks. Bye. firstname.lastname@example.org
Sherishe, September 21, 2002 - Hey, I love this website! Okay, I am 33 years old with peripartum cardiomyopathy. I was diagnosed 2/2002. My EF is 40%, which is down from 47% at diagnosis. I am on 3.125mg Coreg BID and 5mg Altace daily.
I need a heart failure specialist in the Atlanta, Georgia area. Does anybody know anyone? Also, is anybody out there as young as I am? I am an RN and a little scared to return to floor nursing. I have thought of requesting a Vo2max test to see if I can withstand the stress. My cardiologist said perhaps cardiac rehab for 3 months but he makes me feel like this is no big deal because I only have mild heart failure. I realize it could and can get worse, but isn't it still a big deal?
I have 3 kids and I am on the go all the time. I am asymptomatic but worried about the falling EF. I would be happy to hear that I may be able to live a long time with the proper management. I am just looking for support. Thanks, Sherishe. Smarrfive@wmconnect.com
Ernie D, September 23, 2002 - Hi Jon, I've been reading the message posts for a long time and have learned much from you and the others who post. I do have a question about something which has been bothering me for quite some time. I am having a very bad time with severe nervous, panic-type attacks. I don't know what to do about these attacks. They seem to happen at any time without reason. Can you or anyone help me find out what I can do? It would be very much appreciated. My CHF is fairly stable and my EF hangs in around 30%. email@example.com
Huey, September 23, 2002 - Hi, Has anyone ever heard of broken wire pieces from the rib cage after a triple bypass? My husband has at leat 12 pieces floating around all his body and nobody wants to operate on him again. Can anybody help me with information? This is like top-secrect among doctors. Nobody is talking or wanting to redo the surgery. Please help. firstname.lastname@example.org
Bernard, September 23, 2002 - Hi Jon! Your description of SOB is perfect. "Fake" air that doesn't benefit tells it like it is. Bernard in Louisiana. email@example.com
Derald G's September 23 reply to Scott Brown's September 20, 2002 - Hi, Ditto. I've heard similar, periphrial muscles can degenerate too and you're a likely candidate if you're a CHFer. Has anybody heard of peripheral edema? firstname.lastname@example.org
Vernellia R, September 23, 2002 - Hi, I am looking for a heart failure specialist in the Dayton-Cincinnati-Columbus area. Any recommendations? email@example.com
Scott Brown's September 23 reply to Giorg's September 21, 2002 - Hi Giorg, I take my Coreg and ACE inhibitor just before bed. This was suggested to me because if you are going to experience side effects, they happen while you are sleeping instead of noticing the effects while you are awake. I take the morning Coreg dose alone. Thanks, Scott B. firstname.lastname@example.org
Jon's September 23 reply to Derald G's September 23, 2002 - Hi Derald, I think the main thing is not to let your muscle disappear or change fiber type, rather than to build more mass. ;-) See the exercise page for more. Peripheral edema - I am guessing - refers to edema in the arms and legs, hands, ankles, and feet. Jon.
Ginny, September 23, 2002 - Hi, Are there any heart transplant recipients spouses visiting this message board. My husband is 33 and received his heart in 12/00. I really could use someone to talk to about the problems we are facing. email@example.com
Jon, September 23, 2002 - Hi everyone, I have several more mailings ready to go and these may be of broader than usual interest. If you want to receive Heart Info mailings, sign up here. Jon.
Liz D, September 23, 2002 - Hi, I have mild COPD and an enlarged left ventricle. My EF fell slightly on my last echo and my LV size went up from 1.4 to 1.6. However, my cardiologist didn't think this was a problem right now.
Well, I was out doing my paper route and I got a debilitating, under the left breast chest pain that lasted at least 10 minutes. I couldn't take a deep breath and the pain was severe. I couldn't move, drive, or anything else without making the pain worse. I didn't have my car phone but instead of thinking oh, I should go to the ER, I became curiously detached and determined that I was going to finish the route.
I tried to hold the pain in with my left arm, drove with my right arm and delivered the paper very, very slowly. I was sweating slightly because it was so painful! The pain let up so I could finish the route. Now I feel very tired and sleepy and still detached, like I don't know what to do, like maybe I imagined it. Now I'm asking myself, what happened? What do I do? Is this typical of angina or a heart attack? Is this a warning?
I will be going to the doctor pronto but I appreciate you all reading this. It was the most bizarre experience. MaryAstor@aol.com
Jon's September 23 reply to Liz D's September 23, 2002 - Hi Liz, Get to a doctor right now. It sounds like you experienced shock as far as the detached feeling and sweating. Get to an emergency room. Later - after seeing the doctor - maybe you can elaborate on the heart size measurement. Jon.
Russell, September 23, 2002 - Hi, In July I found out I had CHF. I went from healthy to sick in a nanosecond. I have an EF of 20 to 23%. I do get tired about 4:00 to 5:00 PM. At age 55 this has changed my whole outlook on life and that of my family. It has been really difficult for me. I don't how to be sick. This has so hard, Russell. firstname.lastname@example.org
Jon's September 23 reply to Russell's September 23, 2002 - Hi Russell, Having been whacked with heart failure at a very healthy age 36, I know what you mean. I can reassure you on one point. It is possible to make the adjustment and live amazingly well for a "sick" person. I'm not saying any of it will be easy but it can be done, and most of it can become habit (life style changes) so that pretty soon it seems a lot easier than it is. Once you manage the mental/emotional adjustment and realize that you're a lot slower now, but certainly not dead, the rest follows.
Ask all the questions you want - we know what it's like. We may not have all the amswers but at least we know where you're coming from. Jon.
Roz W, September 23, 2002 - Hi and oh yes, indeed. I needed that most descriptive phrase so many times in response to my doctor's smug report on the clarity of my lungs. I want to sob, "But why, then, SOB?" Now I know - fake air! Exactly. Thanks once more, Jon. RWarriston@aol.com
Jon's September 23 reply to Roz' September 23, 2002 - Hi, Well, this one seemed to strike a chord. I remember when being "short of breath" thinking to myself, "I can feel plenty of air going in but it ain't doing me one little bitty bit of good." That's why I say it felt like "fake" air. Just had to be. ;-) Jon.
Dorothy Powell's September 23 reply to Ernie D's September 23, 2002 - Hi Ernie, A friend had the same problems. As it turned out, he had been taking Lipitor, a cholesterol-lowering medication. The doctor took him off it and his anxiety attacks gradually leveled off and he has not had attacks in months. I hope this is helpful. Good luck, Dorothy. DPowell806@aol.com
Mike, September 23, 2002 - Hi, I had my SSD hearing today. They asked me a few questions and then asked the doctor if I met the listing level impairments now and at the time I quit working. He said I met them both.The judge then said I would get his written decision in 40 days. My lawyer said that means we won. It was short and painless. I am still having a hard time believing it's over. Why don't they just tell you the decision at that time? Any thoughts? email@example.com
Dan, September 24, 2002 - Hi, I'm really confused. My EF went from 35 to 67 or 68%. Does it mean I am getting better? If so, why do I still have my weak spells and pain? I'm really confused! firstname.lastname@example.org
Jon's September 24 reply to Dan's September 24, 2002 - Hi Dan, I hate to say it, but it depends. The cause of your CHF and whether that cause has improved along with your EF, other illnesses, level of physical fitness, drug side effects and more all play into how you feel, and also how "well" you are. You need to have a sit down face-to-face with your CHF doc and get all your questions answered to your satisfaction - he knows your "details" and that is why you pay him. Make him earn his money. ;-) Jon.
Liz D, September 24, 2002 - Hi all, Jon, thanks for your concern and your response. I did go to my PCP immediately after I posted. By the time I got to him, I was back to normal and he didn't hear or detect anything abnormal and his feeling was that it was stress related, a charley horse, or I had a panic attack. Well, I did panic after I got the pain and it didn't let up for awhile. That's why I went into shock. However, my cardio had given me the all-clear a month ago, so I guess that's another reason I felt it wasn't serious enough to go to the ER.
My PCP and cardiologist think the echo is the gold standard for detecting heart problems. I'm not so sure anymore, especially after yesterday. I have never been hit this hard nor this long with chest pain before and it was without a doubt the mother of all chest pains. Now I feel vulnerable and nervous. I'm getting my insurance switched over so that I can go to a specialist at Cleveland, but that won't happen until January.
My PCP says that there aren't anymore tests they can run on me at least not without risk and I guess yesterday wasn't serious enough to warrant taking those risks. All I've had is a stress echo and a regular echo. The stress echo showed the hypertrophy and some irregularities on the exercise portion. The regular echo indicated mild regurgitation of the mitral and tricuspid valve but failed to measure the LVW in the interpretation I got. The tape, however, shows a decreased EF from 55 to 52 and LVW at 1.6 from 1.4 with normal systolic and diastolic function on both echos. Well, somebody please tell me how to argue with that, and if you have other suggestions as to how I can push these doctors to take me more seriously, I would appreciate it.
As I told my PCP, if it happens again, and I live to tell about it, you will run every test in the book! On the other hand, maybe I shouldn't wait until the next time. Thanks for any input. Jon, I am praying for you. That's not my strong point either. I just think what you do is that important! Liz D. MaryAstor@aol.com
Jon's September 24 reply to Liz D's September 24, 2002 - Hi Liz, Did he do blood work to see if enzymes that are high after a heart attack were elevated? Did he order a scan to see if a blood clot had caused a TIA? Knowing you had a heart attack is more than just knowledge - it allows treatment to stop further heart muscle from dying and possibly to reverse some of that damage to prevent serious heart failure down the road. However, treatment must be done right now.
I'd see my heart doc or go to an ER today. I have had a PCP blow me off as having a "psychological response" (meaning it was all in my head) and upon seeing a more skilled doctor the next day, I found that I had a definite physical problem that when resolved, relieved all my symptoms. Please don't see a PCP for a probable heart problem. See that cardio-doc today, just to be sure.
A month-old "all clear" means nothing at all regarding an acute episode. These happen to "healthy" people too, you know. I am having a hard time believing that after your experience, you're just going along with what this doctor is saying. Was it all in your head? If not, why let a doctor tell you it was? You know what you know. Why let a doctor who wasn't even there tell you that you don't?
Did your doctor lay out the possible risks of testing to you - for each test? Did he then ask you whether you think it is time to accept those risks? If not, he is making what could well turn out to be life and death decisions about you without even asking you for your opinion. Is that the kind of doctoring you can afford to have? Just food for thought.
You have had all the classic heart attack symptoms and no one is doing anything at all about it. That's how people wind up down the road in very serious heart failure that cannot be reversed. How does he know you have normal diastolic function from echo alone? Have you read the diastolic heart failure page? Cath is the only current gold standard for diagnosing DHF. It takes a CHF doc who is very experienced with DHF to even try diagnosing it from an echo - and there are very specific technical reasons in the medical literature why this is true.
You already know how to be taken more seriously, right? ;-) See another doctor and get another opinion. If it were me, I'd get copies of all my med records pronto in case I wanted to sue a doctor down the road, and people here know how rarely I let fly with that kind of talk. Of course, if it were me, I'd go to the county hospital if I had to and get those enzyme tests today, if it's not already too late.
I appreciate that you find this message board a useful resource, but when circumstances warrant it, never stop to use this in place of emergency medical advice from a doctor. Get to the ER. Really. Jon.
Jon's note: Please use units of measurement and full words rather than acronyms. I don't know what heart measurement corresponds to a possible 1.6 whatever or what LVW means.
Scott Brown's September 24 reply to Liz D's September 24, 2002 - Hi Liz, In reading your story, I hope other readers can see that you made a huge mistake. If you feel this kind of severe pain in your chest, you should be right into ER, where they can treat you promptly. You are obviously still with us, but you are essentially playing Russian Roulette with your heart. Always have a plan on how you could alert someone if something does not feel right. I hope everyone who reads this terse e-mail recognizes that your actions are totally inappropriate according to what you described.
I'm sorry if I sound harsh. You are lucky enough to know you have a heart condition. Many people do not have this luxury. Start accepting the fact you have a disability and stop taking chances with your health. I'm sure the people who want to see you live as long as possible agree with me. Scott Brown. email@example.com
Norma's September 24 reply to Ernie D's September 23, 2002 - Hi Ernie, I know how awful those panic attacks can be. I used to get them regularly in the early evening, but they gradually tapered off as I learned how to control them. I had to take a tranquilizer and a glass of warm milk and try to meditate by concentrating on my breathing. Breathe in to count of five, hold for count of five, then breathe out. Do this a few times, then just concentrate your mind fully on your normal breathing. Clear your mind of everything else and just breathe in, breathe out, and I think you will find your heart rate will slow down and you will become calmer. It's very hard at first not to let your mind wander into worrying, but just try to calmly go back to breathing, clearing your mind of all else. Let us know if this works for you as it has for me. Take care, Norma. firstname.lastname@example.org
Jon, September 24, 2002 - Russell, I answered your -email but it bounced, saying the domain did not exist. Jon.
Sheryl, September 24, 2002 - Hi Russell, I tried to reply to you but the e-mail address did not work. Working through the first year's emotions is hard and I wanted to give you some encouragement. Russ, can you check if you gave the correct e-mail address? Sheryl. email@example.com
Mike's September 24 reply to Liz D's September 23, 2002 - Hi, Don't believe what they said based on those tests. In 1989 I thought I had a heart attack; I saw my cardiologist and explained all my symptoms. He said it could be anything but that it probably was something like gas or a sprained muscle. Ninety days later I suffered a major attack that left my right coronary artery completely blocked. It seems it was partially closed and that caused the earlier attack. Get more tests! I should have, but I believed the doctor. Don't we all sometimes? firstname.lastname@example.org
Liz D, September 24, 2002 - Hi, Thank you all for blasting me back to reality, or as the saying goes, "Thanks I needed that!" I was so truly shocked Monday that I didn't know what to do. I could not believe it was happening! Not only could I not believe it was happening, but I became angry when the pain didn't go away as quickly as it had in the past, and I said to no one in particular of course, "The doctor said I'm fine and I am going to finish this route and nothing, including a heart attack, is going to stop me from doing my job!"
I trusted my cardio doc and I trusted my PCP because I'm the type of patient that believes what I'm told, mostly because I don't want any other answers, not because I cannot be confrontational. I've read this site and many others like it hundreds of times, The Manual, the blurb on diastolic heart failure, etc. I knew echos are subjective interpretations and that it was difficult to detect diastolic dysfunction on them. I knew of other tests that I should've been taking, given all my heart failure symptoms. I asked my cardiologist to do the enzyme tests, but no, he wanted me to be tested for hemachromatosis instead. He thought my upper abdominal tightness was caused by lung expansion and progressive COPD, not by heart problems. It sounded good to me and I bought it!
Well, it was a hard and disillusioning lesson I learned today. I do appreciate the comments that I got! I hope my experiences will help some other person avoid making the same stupid mistakes I made, made mostly because I have been in total denial for months now. Why? Because having both COPD and heart failure is a double whammy and I just wasn't ready to face a more tenuous future. Having said that, and experienced what I did yesterday, I know now that a tenuous future is preferable to no future. Thanks again for your insightful, sometimes biting, but sincerely well-meant comments. MaryAstor@aol.com
Jon's September 24 reply to Liz D's September 24, 2002 - Hi Liz, I get in a quandary sometimes about how "aggressive" to get when I think a message is critical. I say to myself, "Now, don't be rude" and immediately I reply to myself (so to speak), "But I have to get this point across because it's vital to a person's health in the very short-term!"
Like you said - and I appreciate you saying it - my comments were well-intentioned, but I know they at the least bordered on rude. Still, I was and am very concerned that you are not getting the post-heart attack treatment that reduces risk of permanent heart damage - assuming it was a heart attack.
Wishing you all the best, and I am sorry to have come across so harshly. Jon.
Ernie D's September 24 reply to Norma's September 24, 2002 - Hi Norma, Thanks for the info on panic attacks. It seems my problem was caused by medication for homocysteine control: FOLTX, which is folic acid, B-6 and B-12 combined. This lowered my homocysteine levels but has been causing severe nervousness and panic attacks for the last 6 months. I stopped this medication and the insomnia, nervousness and panic attacks stopped within 24 hours. I wish I had thought to do this sooner.
Now I must tell my doctor what the problem was. I have been taking folic acid alone at the same dosage without B-6 and B-12 and have no problems, but my levels stay somewhat higher. Thanks again for the info, Ernie D. email@example.com
Scott Brown's September 24 reply to Russell's September 23, 2002 - Hi Russell, It gets easier to deal with the psychological aspect of the disease over time. You are still useful, and people around you will be understanding. You need to accept the reality of this disease and know that you can still have an enjoyable life regardless of some limitations.
The chances are that meds will help you feel much better. I'm 33 years old with an EF of 23%. I could not get out of bed last year. Now, I have all kinds of activities and I am back to full days again. Give it time - and know that you will likely feel much better in the future than you do right now. Scott B. firstname.lastname@example.org
Jon, September 25, 2002 - Hi everyone, I have a mailing aimed at diabetics to go out late tonight so if you're interested, sign up here. Another one on clinical trials and one on CoQ10 are scheduled for later this week.
Alos, please pray for me to listen to Jesus when I am at the meeting tomorrow. It's a "feeling out" meeting with CHF doctors, cardiologists, and a heart transplant coordinator, at the least. My goals and theirs are fuzzy right now so pray also that if we are to work together online, it will quickly grow into something useful for all of you. That's really all that matters. Thanks.
Jon, September 27, 2002 - Hi everyone, I'm a bit tuckered out today due to a meds change a few days ago. It makes me twitchy and tired all at once, and that's a miserable combination. I am having hard time sitting and typing anything, so I'll be erratic for awhile.
The meeting went extremely well. In fact, much better than I had thought it could. I'll try to catch up on posts by end of today but can't make any promises. Jon.
Wayne, September 28, 2002 - Hi Jon, Which is more accurate: EF from MUGA or echo? Wayne. email@example.com
Jon's note: MUGA - but it's invasive
Kathy, September 28, 2002 - Hi Jon, Are arrhythmias and palpitations the same thing? I have been told I have PVCs, trigeminy, and at least one other arrhythmia but I can't remember what they said. However, I don't know if they are the weird feeling I get, especially at night when I'm wishing I could sleep. It feels like a fish flopping around on a dock. Usually, it's worst when I try to lie on my left side, but recently it happens when I lie on my right side too. Man, this is sooooo much fun! firstname.lastname@example.org
Jon's September 28 reply to Kathy's September 28, 2002 - Hi Kathy, The Medspeak glossary can often help and so can the medical dictionaries listed on the links page. However, these definitons never go far enough. Your post made me go back and improve mine. <g>
Palpitations are when you feel your heart beat real forcefully. Sometimes it feels like your heart is "in your throat." Arrhythmias are irregular heart rhythms or too-fast or too-slow heart beat speeds.
PVCs are when your ventricles beat really fast on just one beat so that it really does not get a "full" beat in - it's an incomplete heart beat really. They are sometimes called premature beats because the ventricles contract sooner than they should - before they are filled up with blood. These are not supposed to be dangerous but can drive you nuts. I had them for quite awhile and they made me very short of breath and lightheaded. After a PVC, your heart may pause while its electrical system resets. This makes the next heart beat feel really strong - a palpitation.
Trigeminy is an arrhythmia where the beats are grouped in a repeating pattern of threes, usually one normal beat followed by by two beats where the heart contracts too soon - PVCs. Usually this means your heart's natural pacemaker is not controlling all your heart beats - some other part of your heart is firing off some of them instead. The heart is an electrical animal, so to speak.
So, in a way all these are related but they are not the same. Fun, ain't it? Be sure to get your heart doc to nail down for you exactly what your heart is doing and why. Be sure it is not a dangerous rhythm. If it really interferes with your quality of life, something should be done, without doubt. Jon.
Craig B, September 28, 2002 - Hey Liz, Gee, I hope you are doing okay. I really know the feeling. Sometimes I wake up in the middle of the night (recently) with a strange feeling in my chest. I don't know whether it is my heart that is broken because my wife still hasn't returned (she left me in March) or if it is because my condition is worsening. I see both Jon and Scott very strongly - and rightly so - suggest an ER visit. I almost died myself because I too put off seeing anybody for way too long.
When I finally did, I discovered I had IDCM (Idiopathic Dilated CardioMyopathy) with an EF of 15% and very low oxygen in my blood. The attending doctors questioned wildly my reasons for not showing up at the ER earlier. My pathetic excuse was that the first three MDs I had seen were unable to discover my true diagnosis.
I have recently been awakening with some panic-inducing things going on. I was just sitting here 5 minutes ago all panicky and scared. My heart felt like it was wrapped in aluminium foil and was being toasted. Of course then I couldn't breathe very well, and my nose and throat were blocked, and things just seemed to get worse. I keep reading Jon and others saying, "See your cardio doc." I think to myself, "How do I do that?" I can't make an appointment with my specialist, he has to refer me. I of course alwsays forget that the quickest way to see the most specialised person is to vivit the ER!
Of course, a person with breathing difficulties is always a priority over most other ER things (broken arms, cuts, etc,...) If you are having trouble breathing, you will been seen pronto. It took me to read here again to just remember this! I now have calmed down, can breathe normally again and feel heaps better. I might note that since I still have been experiencing weird stuff I have an early appointment with my doc, just to make sure all is okay.
So the whole point is, yes I agree that this site is a great help. Jon and all the others that visit here are wonderful but the bottom line is that if you are in pain or have any concerns, don't hesitate to see the right people and get the right attention. It could just save your life. email@example.com
Jon, September 28, 2002 - Hi everyone, I feel better today and think I can get the rest of the posts up later today. I have to go somewhere with my wife right now but I'll be back with more later. I'll also be sending a mailing out tonight. Jon.
Janet TB's September 28 reply to Liz' September 24, 2002 - Hi Liz, By now I hope you have had a more serious appraisal of your experience. One thing I thought of when I read your description was my recent experience with a pneumothorax (collapsed lung). It came on suddenly and hurt very much although by the time I saw the doc in "Not-So-Prompt Care" it felt much better. The doc on duty ordered a chest x-ray and said it was normal, and also implied the pain was due to anxiety over cardiomyopathy.
Well, 2 days later as I'm literally going out the door for surgery that was totally unrelated to my heart condition, the Not-So-Prompt-Care nurse called me to say I had a collaped lung. I wonder if that could have been what you felt? Have you had any further tests yet? Your description sounded more heart-related, but I wonder if it wasn't lung-related. Good luck, Janet T. B. firstname.lastname@example.org
Janet TB, September 28, 2002 - Hi All, I saw my cardio doc Tuesday to go over my 7 month postdiagnosis echo report. One sentence that really caught my eye said there was evidence of mild pulmonary hypertension. I have never seen that in one of my echo reports. I asked the cardio doc about it and he said he would consider a pressure of 34 to be normal. Any comments?
Also, my EF has stayed pretty stable at 35% and the cardio-doc said he wouldn't expect it to rise in the future. However, I have been on a very low dose of Coreg all along, and raising the dose has only occurred through my efforts. I am currently on 6.25mg BID. Any comments? I will be seeing a specialist in the early part of October because I have not felt fully safe with my cardio doc's care of my health condition. Janet T.B. email@example.com
Jon's September 28 reply to Janet TB's September 28, 2002 - Hi Janet, Take a peek at the pulmonary hypertension page. Pulmonary hypertension is a state of high pressure in your lungs' blood vessels. An average pulmonary artery pressure (MPAP) higher than 25 mmHg at rest or a PVR higher than 3 Wood's units is considered PH. An MPAP of 26 to 35 mmHg is considered mild PH; 36 to 45 mmHg moderate PH; and over 45 mmHg severe. If you have no contraindications, I'd agree with you that you should get that Coreg dose raised too. Jon.
Jon, September 28, 2002 - Hi everyone, CHFpatients.com, Inc. is now officially a tax exempt publicly supported organization by the IRS. Your donations are now tax deductible. State Department of Revenue tax exempt status is coming for the state of Missouri but has not yet arrived. I'll have the documents posted online in a week or two, and our EIN is listed at the About page. Jon.
Derald's September 28 reply to Dave K's September 21, 2002 - Whoa Dave, Major scare! Even though my heart funtion is better, I still think that a pacemaker is a good idea, especially after reading your story. I want the one that's biventricular pacing plus a defibrillator. firstname.lastname@example.org
Janet TB's September 30 reply to Jon's September 28, 2002 - Hi All, Just to follow-up on the echo versus MUGA question. I had a MUGA when I was diagnosed and my EF came out to 46%. My cardio doc said he didn't believe it though, because I was having a ton of PVCs at the time. He said my EF was more likely 30 to 35% based on the echo.
I have also heard that a MUGA is more accurate. The specialist I saw at Cleveland Clinic said the MUGA is what they use in research to track change. Has anyone heard that lots of PVCs can mess up a MUGA? Janet T.B. email@example.com
Jon's September 30 reply to Janet TB's September 30, 2002 - Hi Janet, I sent out a mailing just last week about MUGA that addressed this issue. Here's a quote from that article:
Imaging is linked to the heart's pumping cycle. Images that are taken during irregular beats are rejected. That's why patients with multiple odd ventricular beats require longer scan times to gather enough "good data." MUGA is not suited for patients with a really irregular heart rhythm.
Cat's September 30 reply to Liz' September 24, 2002 - Hi, I certainly can empathize with Liz. I was diagnosed with emphysema 8 years ago and soon developed uncontrolled hypertension. An echo, MRI, and MRA revealed that I have plaque in my carotid arteries, mitral stenosis (moderate to severe regurgitation), and slight left-sided cardiomyopathy.
The symptoms were somewhat alleviated with help of medications, but lately I've been suffering from what many of you have described as the "fake air syndrome" especially at night. The critical care pulmonologist said the SOB was not due to lung disease and referred me back to the cardiologist. He said that "I was going in and out of DHF" and has made numerous med changes.
Any improvement has been short-lived, and I am still SOB with exertion and at night. Needless to say, I am really worn out and was wondering if I should insist that a diagnostic cath or other tests be done. Also, just before these current breathing difficulties, I had a flu like virus with joint pain, 104.6° temp, and am still running a low-grade temperature of 100.4° from time to time. I wonder if this caused it. Your input would be appreciated, Cat. firstname.lastname@example.org
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.