The paperwork never ends The Archives
October 1-15, 2006 Archive Index

Sharon L 10-2     why a fluttering in chest after taking Atacand?
Linda K's 10-2 reply to Peter T's 9-30     potassium drink
Edward M 10-2     internal gas and late-day fatigue questions
Debbie B's 10-2 reply to Donna V's 9-30     seeking biventricular pacer (CRT) info
Elaine F's 10-2 reply to Chris J's 9-30     condolences, very sorry to hear this
Linda K's 10-4 reply to Edward M's 10-2     burping experience, activity level
Doug H's 10-4 reply to Edward M's 10-2     burping experience, seek back-to-work experiences
Joy K's 10-4 reply to Edward M's 10-2     burping experience, schedule matters
Scott B's 10-4 reply to Edward M's 10-2     burping experience, regular exercise can really help
Vicki R 10-4     seek experiences with Plavix and Zocor
Tony M 10-4     CPAP experience and more
John D 10-4     seek ICD experiences
Roger H's 10-4 reply to Linda K's 10-2     I use that veggie juice a lot
Lowell P 10-4     seek kidney artery angioplasty experiences with fatigue
Doug H 10-4     seek physical activity at work experiences
Jerry B's 10-5 reply to Tony M's 10-4     apnea experience, VPAP
Jerry B's 10-5 reply to John D's 10-4     ICD and quality of life
Ben B's 10-5 reply to Vicki R's 10-4     some possibilities
Marty C 10-5     second try at answer for BNP questions
Cheryl C's 10-5 reply to Doug H's 10-4     work after heart failure experience
Kris P 10-6     seek ICD experiences
Scott B's 10-6 reply to Cheryl C's 10-5     retaining fluid
Judy M 10-6     seek experiences with feet problems
Pat R 10-6     how can my BNP be normal with low EF?
Cheryl C's 10-7 reply to Jon's 10-5     energy levels, odor sensitivity
William J 10-7     seek EECP info
Jon's 10-7 reply to William J's 10-7     EECP info
David W's 10-9 reply to Kris P's 10-6     telling the doc could be important
Mike C's 10-9 reply to Kris P's 10-6     ways to encourage your father
Joyce W 10-9     felodipine and Cozaar question
Jon's 10-9 reply to Joyce W's 10-9     felodipine and Cozaar
Lori A 10-9     seek weird event monitor experiences
Jon 10-9     updates, moderating
Lori W's 10-9 reply to Jon's 9-22     getting test results
Jon 10-12     for Coumadin (warfarin) users
Cheryl C's 10-12 reply to Scott B's 10-5     shortness of breath, diuretics
Jon's 10-12 reply to Cheryl C's 10-12     diuretic use, getting rid of symptoms
Suzanne C 10-12     lisinopril in Panama suspect
Jon's 10-12 reply to Suzanne C's 10-12     lisinopril in Panama
Susan 10-12     lots of questions about my heart and meds
Jon's 10-12 reply to Susan's 10-12     groin injury, CHF, meds info
Mary C's 10-12 reply to Lori A's 10-9     event monitor experience
Leslie K 10-12     is EF measurement right if heart rhythm is weird?
Jon's 10-12 reply to Leslie K's 10-12     no
Sarah K 10-12     seek experiences waiting for transplant
Kit C 10-12     shouldn't I be taken off the calcium channel blocker
Jon 10-13     deaths in Panama
Valerie R 10-13     seek barium enema experiences
Jimmie R 10-13     seek optimization clinic info
Jon's 10-13 reply to Jimmie R's 10-13     pacemaker optimization
John D 10-13     how do I extend my prognosis and life?
Jon's 10-13 reply to John D's 10-13     a few ideas

Sharon L, October 2, 2006 - Hi everyone, I hope people are donating. I'm trying to do it regularly but need to write myself a reminder as I am forgetful - old age at 48! Why do I have a fluttery feeling in my chest at night before I go to sleep? It happens after I take my Atacand (candesartan) at about 10:30 at night. I'm seeing my doc soon, but wanted to get some ideas.

Linda K's October 2 reply to Peter T's September 30, 2006 - Hi guys, When my doctor told me I was low on potassium, I started drinking an 8oz glass of low sodium Knudsen Very Veggie every morning. It has 35mg sodium and an almost astonishing 740mg of potassium and it tastes really good. It also makes a great low-sodium soup base.

Edward M, October 2, 2006 - Hello again. As I become more aware of my CHF symptoms, I am wondering whether others in class 3 have similar experiences. I'd appreciate hearing from any of you who go through either or both of these - 1) Gas: I have a sense of flatulence, frequently burping and passing gas. I've tried Prilosec and a couple of other suggested aids, but nothing seems to improve the situation. (2) Late day fatigue: Whether it's a good day or a bad day, in the late afternoon, some time about 5:00 PM, I become extremely weary and cannot even face the ordeal of going out to a restaurant for an early dinner. I can't wait for bedtime, which is usually about 9:00 PM.

Debbie B's October 2 reply to Donna V's September 30, 2006 - Hi Donna, I am glad to hear you are a pro BiV pacer gal. My mom will be getting one soon too. She had her mitral valve replaced last year and now she needs her heart back in synch. Her EF is around 30% and I hope the pacer at least helps her feel better.
     I would appreciate any info on these pacers. Thanks so much! Debbie.

Elaine F's October 2 reply to Chris J's September 30, 2006 - Hi Chris, I'm so sorry for your loss. I too have been around here for awhile. I don't post very often but read daily. I think all of us here credit this site for a part of our "still being here." This place is truly a lifeline. My prayers are with you; a loss to one of us here is a loss to all of us here. God bless you, He is our strength. Elaine.

Linda K's October 4 reply to Edward M's October 2, 2006 - Hi Edward, I'm so glad someone else out there is burping! I thought I was losing my mind for awhile. Before I got diagnosed I kept telling doctors about it and their reactions ranged from perplexed to unconcerned. I have absolutely no idea why and nobody in a lab coat seems to know either, but when my heart failure symptoms are kicking up, I get very burpy. It is also much worse when lying down. By the way, I was a class three when diagnosed, though I am doing considerably better lately. Whenever my other symptoms subside, the burping goes down with it. Unfortunately, whatever causes it seems unaffected by any of the usual treatments.
     Unlike yours, my fatigue comes early in the day, and I often have a hard time getting out of bed and going. I usually get my best buzz of energy quite late and it's causing me to keep some weird hours. I definitely need more sleep on average than I used to, which I guess is not surprising, since my body is working harder than it used to just to do ordinary things. You might also want to talk to your doc about whether you are getting a good quality of sleep. If everything looks ok, don't worry about how much you are sleeping, just give your body what it needs.
     One last thought - what is a typical day for you? I have noticed that physical activity really bumps up my energy level. The more I sit, the more I want to sit.

Suzanne C's October 4 reply to Edward M's October 2, 2006 - Hi Edward, The gas is pretty bad 24/7, no matter what I eat and I am constantly burping. I feel like I am going to blow up and my stomach is badly distended. The fatigue for me starts at 11 in the morning and seems to get worse as the day progresses. I need a nap every day. Suzanne.
Jon's note: If you take Lasix now, switch to torsemide to see if it helps the stomach distension.

Doug H's October 4 reply to Edward M's October 2, 2006 - Hi Edward, Welcome to the club! The gas is most likely due to your meds as if you will read side effects, most say nausea, stomach upset, etc. Being tired, it has been over a year for me, and I usually an ready for a nap at 3:00 PM. Of course I do start work at 7:00 AM. I am not working full time and I don't know if I could handle that, at least not yet.
     I would like to hear from others on their work schedules and if they ever got back to where they were before episodes and if they did how long did it take?

Joy K's October 4 reply to Edward M's October 2, 2006 - Dear Edward, The gas problem for me is that it seems "stuck" in the pipes and causes a very uncomfortable feeling in my chest. I have also found that during these times my PVCs occur more frequently. I have tried many proton pump inhibitors and over the counter liquids and pills, with no jumping up and down success story. I have had moderate relief with Beano. The fatigue for me also seems to come around that 5:30 PM time slot and is not assocaited with eating or not eating food.
     I can have a short period at around 8:00 PM of energy but fall quickly back to that horrible stage of every muscle and bone hurting in my body and that awful fatigue that makes me dizzy. I have tried going to bed early but cannot fall asleep. I am a chronic insomniac since chemo therapy 13 years ago. The drugs I was being given at that time required me to make sure my bladder stayed fairly empty. It was well known for causing bladder cancer. So I was very consistent and a good patient able to wake up every 3 to 4 hours to urinate. Now that was a success story - no bladder cancer. Of course, no one said anything about the heart.
     I wish I could tell you that "such and such" worked great for gas and fatigue but I remain in the learning lane after several years of heart failure. Since being on CoQ10 I believe that has helped my own energy capacity. I do know that I have to be on a schedule for activities. When I get off my usual schedule then I find my fatigue is much worse.
     Are you able to take short periods of rest during the day without sleeping? I find these helpful with fatigue. Have you been tested for reflux problems? I was and everything was normal. I hope the Beano helps. Joy.

Scott B's October 4 reply to Edward M's October 2, 2006 - Hi Edward, There are several reasons why gas can be part of the symptoms for CHF. The number one cause has to be the meds. A potassium supplement like Slow-K is a prime offender but the other meds seem to contribute as well. I also suspect the reduced blood supply to organs (such as the digestive system) contributes to the problem although I have not heard a doctor admit this. I also find diuretics can cause lots of gas symptoms.
     With regard to being fatigued at supper, I get exactly the same thing, sometimes earlier in the afternoon. Sometimes later in the day I get a second wind but the afternoon is always the worst for me! I just push myself through it although it can be an ordeal. The first thing I do when I push through the door is to lie down on the couch.
     I have a few tricks which work reasonably well for me. I drink something with caffeine (everyone should check with their cardiologist to to determine how much caffeine, if any, they are allowed to have). At least you will not need to constantly fight the feeling of falling asleep.
     Finally, I exercise regularly and since I have been doing this my fatigue window is far less and less severe (once again, done within the recommendations of a physician). Best of luck. Scott B.

Vicki R, October 4, 2006 - Hi everyone, After 40 years of diabetes and many other health issues, I had a heart attack in June. I was told after several tests that I have CAD. My cath states severe diffuse disease of entire vessel segment of the LAD and LCX. There is more but too much to type. I have several blockages but the problem is my arteries are way too small to put in the needed stents.
     I was put on Isosorbide Mononitrate tabs at 30mg and I am on metoprolol at 50mg twice a day. I am also on meds such as two types of insulin and Actos. I also only have one kidney due to cancer in 2003. The doctor put me on Plavix but I had a reaction and was told to stop the Plavix for now. I would like to hear any comments that you folks might share with me about Plavix and Zocor.
     I am 58 and need some hope to hang in there. Thanks for any help or ideas. Vicki.

Tony M, October 4, 2006 - Hi, I have been away from the computer lately. My neck still is hurting from the Level 4 neck resection and now I have a 6 inch rod in my neck and I do know it is there. I cannot swallow properly and have had two operations in the past year on it. They turned me loose too early on the first operation and I broke the hardware loose.
     I also wanted to add that when I went to the University of Pittsburgh last January for a stem cell study I was found to have a nodule on my left lung and the doctors here in my state had missed it so for the past 4 years I went untreated for the lung issues because they mimic the heart problems.
     I came back and in May I finally got in a sleep study and they found I was blacking out in my sleep. I kept telling everyone I was passing out in my dreams and danged if I wasn't right. They put the CPAP on a setting of 22 for me and that's lot of air, folks. At first my body hurt from all the breathing and then a month ago I would wake up and be gasping for air. So two days ago over the weekend they did another one and found out I was holding my breath for 16 seconds for every two minutes I slept. The lowered the PSI to 18 and that worked. My brain had figured it out so they tricked it with the change. I also got the ramp lowered to 3 from 5 which is a lower pressure so you can go to sleep and then it kicks it up to 18 after 20 minutes of starting up. I cannot take that much air in while I am trying to go to sleep so they have a way to make it go up slowly. I even got a print out that showed the before and after.
     If you have a CPAP and you don't feel right, go back like I did and try it again because you can overcome the thing and it might not be working as well as it should. The sleep tech said that heart patients have the hardest time sleeping. You cannot get quality sleep holding your breath like I do. I have both central and obstructive so that is a lot tougher. Central apnea is the brain turning off. They a BiPAP machine but it is a true breathing machine and costs a lot more than a CPAP and my insurance will not buy two in one year. I was lucky they could change up my machine.
     I also have gone through 3 different masks. If they don't seal right they leak and whistle and wake you up and with me when I wake up even if it's only one hour of sleep that's it - I have to get up. Even with the machine working a 4 hour night is a long night of sleep for me. I write down how long I really sleep and average it out and its 2.75 hours per night.
     People think that when you get a CPAP you'er fixed but it's still a puzzle to get the settings right and the mask to fit right. I want to say hi to Debra S as she helped me get in the Pittsburgh study and I think the world of her. I didn't get stem cells but I got a serious problem found while up there getting tested. They also have a opening left for me to come back once they are sure the lung spot is not coming back. Tony M.
Jon's note: There is also now a VPAP machine that is very complex for serious apnea problems that don't respond well to the other machines so if you never seem to get your apnea properly corrected, ask a board-certified sleep specialist about it.

John D, October 4, 2006 - Hi, I am interested in a few opinions. My EF has dropped continually since my CHF was diagnosed in late 2003. My EF then was 28% and now the most recent EF reading was 20%. My doctor mentioned a possibility of an implantable defibrillator but also mentioned it would not improve my quality of life. Does anyone have a thought to share please? Thank you.

Roger H's October 4 reply to Linda K's October 2, 2006 - Hi, It's funny that you mentioned that very veggie juice. I use that all the time in my chili and a lot of stuff I make. I keep two ar three bottles on hand most of the time.

Lowell P, October 4, 2006 - Hello, I had angioplasty on one of my renal arteries two weeks ago. Since then I have been feeling sooooo tired. As far as I know all went well with the angioplasty, however it remains to be seen if my kidney function is improved. There was a 95% blockage to the kidney and a stent was put in the artery. I wonder if there could be any correlation between the angioplasty and the fatigue. Comments, anyone?

Doug H, October 4, 2006 - Hi, I would like to hear from others on how much work-related physical activity they are able to handle, in terms of hours and type of work. I just passed the one year mark since my episode of sustained V-tach. I was diagnosed with viral DCM, got a BiV pacer with ICD, am on amiodarone (Cordarone), Lisinopril, and metoprolol, and a statin due to hyperlipidemia starting to set in. Some weeks I can tolerate my schedule, doing stress tests, etc,..., at a cardiovascular lab, working from 7 to 3:30 two to three days a week. Other weeks by the time 3:30 rolls around I just want to go to bed. They are now wanting to add some duties that require moving to other floors frequently. I am really not sure I can keep up the pace or if over time my stamina will increase. Thanks.

Jerry B's October 5 reply to Tony M's October 4, 2006 - Hi, This may be a matter of semantics but you're not holding your breath - you're not initiating a breath. I also have central and obstructive sleep apnea and have been on BiPAP for a year. You're probably not going to feel that much better when you wake up because the problem hasn't been fixed. I use a device that fits in my nose and although my pressures aren't as high as yours I have no problem falling asleep.
     Jon's right, the next new thing is VPAP and I will be looking into that soon.

Jerry B's October 5 reply to John D's October 4, 2006 - Hi John, Unless you have a pacer component in your ICD, your quality of life won't be greatly improved. Unless of course it fires and gets you out of a life threatening rhythm, then it will be greatly improved. Luckily mine hasn't fired yet, but knowing that it's there is a comfort.

Ben B's October 5 reply to Vicki R's October 4, 2006 - Hi Vicki, I know it is a scary thought, but can they perform bypass surgery? Also, what about EECP? It's not completely proven, but an alternative. Out here in California they have a place called the Whitaker Wellness Center that explores all types of alternative therapies.

Marty C, October 5 reply to Vicki R's October 4, 2006 - Hi, Does anyone else have their BNP checked at every visit to the heart failure clinic-doc? I am having a lot of shortness of breath, but my doc is chalking it up to psychological causes due to my BNP staying below 50. I've dealt with stress for many years and don't see any change in that area to correlate with the shortness of breath. He told me there's no way my heart condition can be deteriorating further when the BNP is this low. My EF is still 35% as of last November, my LBBB still causing constant PVCs, Coreg is still sapping my energy for about 3 hours after taking it. I did press for and get scheduled for another echo. I appreciate your comments. Marty.

Penny R, October 5, 2006 - Okay, I saw my new primary care doc (an internist) on Monday and am seeing a cardio this Tuesday for an echo, then a week later I get my blood work done. The doc put me on Diovan HCT 160/12.5 (gave me a bag full of samples) and I started taking them, but when I checked the drug out on the Internet (the sample bottles had no patient info) it said that you should not take them with aspirin (I take 81 mg a day), that it is not for use with heart failure patients or patients with liver problems (I have NASH, non-alchoholic steteo hepatitis).
     It is not that he was not told of these conditions, after all he is doing the echo to check my EF and a liver panel to see the status of my liver disease and I was not warned about taking the drug with my aspirin therapy. Now I don't know if I should stop taking it until I see the cardio or just take it with the aspirin or stop taking the aspirin.

Cheryl C's October 5 reply to Doug H's October 4, 2006 - Hi everybody, I was diagnosed with heart failure 17 months ago with an EF of 20% and no positive cause unless a virus got me. I went back to work full time after one month and have worked steadily since. My job is a sit down job as a bookkeeper at a local winery, so it's not overly strenuous.
     Last December a new echo showed an EF of 55 to 60% but I have continued on with 12.5mg Coreg BID and 10mg Benazepril. I haven't been on diuretics since I came back to work but my daily sodium intake is only about 500 to 1000mg. If it weren't that low, I don't think I could get by with this. Even with a high EF, I still get short of breath carrying things and can't stand on my feet all day without terrible fatigue for several days after.
     Right now we are in the middle of grape crush and every morning our building is full of carbon monoxide from the fermenting grapes. After the juice goes into the barrel, this stops but for right now, I can't stay in the building unless it's aired out thoroughly. No one else is affected by the fumes as quickly but I was warned about this by my cardiologist. He called me the "bird in the cage" - like they used to carry into mines to test the air. If I keel over, everyone else knows to scram. <g> The heat and humidity also affect me adversely and I seemed to be failing fast after a recent flu shot. It was only 5 days but I had terrible fatigue and was very short of breath. It seems to have passed now and I continued to work through it, but it wasn't much fun.
     I wasn't affected by the short last year at all, so maybe that wasn't it at all, but it was scary. Some days I feel great and can do anything and other days I get very fatigued by evening. I still force myself to walk on the treadmill for 30 minutes every night because it does help in the long run (as does CoQ10), but some nights I'm not sure if I'll make the 30 minutes until I hear the beep that it's finally over.
     Sometimes I think we just have to try things to see what works for us at the moment and not worry about next week, next month, or next year. Good luck, Doug. Cheryl C.
Jon's note: Hi Cheryl, The new HF guidelines support what you say precisely- "Patients with a very low EF may have no symptoms, while patients with normal EF may have severe disability." See I have the same problems - can't use shower cleansers and after-shaves and such.

Kris P, October 6, 2006 - Hello all, My 65 year old father had an ICD implanted exactly one year ago. He is in class 4 CHF. He has had his ICD zap him now six times since June. I am very concerned. He does not let the doctor know about these zaps. I think this is crazy. My mom says he now fears going into the hospital. He really has been through so much suffering. Has anyone here had so many zaps in such a short period of time? I'm very curious. Any info would be greatly appreciated. Thanks, Kris.

Scott B's October 6 reply to Cheryl C's October 5, 2006 - Hi Cheryl, Shortness of breath is the number one symptom for me that I have to take a water pill. When I need a water pill, I can be gasping to catch my breath sitting still. When I take a water pill, I play 3 hours of continuous badminton and do not get winded. I would personally consider taking a water pill a few times and see if it makes a difference.
     Regardless of low sodium intake, your body tissue can still retain fluid. I have heard your lungs can get coated with a thin lining of mucous and make it more difficult to breathe. Scott B.

Judy M, October 6, 2006 - Hi, I have not written your site in a few years but I have a question. Has anyone had problems with their feet? I don't mean the usual swelling but do their toes hurt? Feet hurt when you rub them but it feels good to rub them? I don't know if this has anything to do with my heart condition or something else. Just wondering.

Pat R, October 6, 2006 - Hi all, Some background: July of 2001, I was diagnosed with CHF/IDCM with EF of 20% by cath and 25% by echo, with unknown BNP level. Over the course of the next 4 years I went up to a high EF of 56 in 6/2005. Late summer I have started to feel worse shortness of breath with a 10 lb weight change. Some days sweats all the good stuff.
     I had an echo last week with EF of 36% and a nuclear test (more to see if blockages exist) with EF of 45% (was told EF in nuclear stress test not too reliable). I had a BNP which just came back at 7, which pretty well matches the other 4 to 5 BNP tests over the years. My question is, if I have IDCM/CHF how can my BNP be so low? Or is it if you have a high BNP you have CHF but a low does not rule it out? Any thoughts?

Cheryl C's October 7 reply to Jon's October 5, 2006 - Hi Jon, Absolutely you are right and of course I had to be one of the exceptions to the rules. <g> Mostly I feel absolutely normal, but last year I did volunteer to work a sixth day at one of our wine festivals as the cashier. I stood on my feet from 10:30 AM till 7:30 PM with only a 30 minute break for lunch. The next day I really paid for it. It can only be discribed as the feeling of a terrible hangover with an emotional breakdown. I was overly emotional all day, being short tempered with my husband, my geese, and my parrot. None of them appreciated my apologies much! It took me about 5 days to feel "normal" again, and I will never do it again!
     Funny that you mention a problem with shower cleaners, after shaves, etc. I've been having from with cleaners, insecticides, and perfumes for years. It caused me terrible breathing problems ad once I was taken from work (in Illinois) to the hospital by ambulance. The attendants could have cared less about my breathing problems. They were far more concerned with my blood pressure, which was 170/140. My blood pressure was never higher than 130/90 on a daily basis, except for this.
     Anyway, I'm glad that I'm not the only one who can't be around strong odors. Do you think it may have something to do with being a former smoker? Cheryl C.
Jon's note: I don't think so but have nothing to back that up with, just an opinion.

William J, October 7, 2006 - Hello, Has anyone on this board knowledge of Enhanced External Counterpulsation (EECP), a non-invasive treatment for Cardiac Disease?

Jon's October 7 reply to William J's October 7, 2006 - Hi William, Follow the link in your post and that article includes the Url of a web group for EECP. A just published study shows a small benefit for CHFers, but mostly just for those with ischemic heart failure. It is good for angina and possibly for diastolic heart failure as well. Jon.

David's October 9 reply to Kris P's October 6, 2006 - Hi, How can the pacemaker/ICD help if you don't inform the doctor? The doc will find out when he checks the device but he should be told. Your dad's meds may need adjusting or some other problem. There is not much sense in having a device and not telling the doc if it goes off. I hate going to the hospital too, but sometimes it is necessary to help us in the long run.

Mike C's October 9 reply Kris P's October 6, 2006 - Hi Kris, Your father is afraid of dying. He is afraid of surgery and he loathes the thought of more bad news from the doctor while he dreams of the days none of this bad stuff was going on and he wants to return to those days. So he is avoiding the painful part of going to the doctor because a trip to the doctor will mean more bad news, more medication, or some sort of hospitalization and a plethora of tests.
     Make sure you father has a good, compassionate well-trained cardiac team. If he does, you can do two very helpful things: Surround him with love, literally - close in on him and hug him and let him know that he is not alone, that he will be with the both of you through this whole episode. The next thing is to tell him your mom will call the doctor. Let your mom talk with the doctor frankly and let the doctor know he is frightened and doesn't want to come in.
     Being realistic, I think they will perform an outpatient painless echocardiogram and toggle his medications.

Joyce W, October 9, 2006 - Hi Jon, I am both a diabetic and CHFer. Recently protein was found in my urine. My kidney doctor perscribed Cozaar and told me to stop taking felodipine. I am concerned about stopping the felodipine. My heart doctor is on vacation and I have tried to find this info on the internet. My CHF is well controlled. I also take lisinopril, methyldopa, Coreg, theophylline, paroxetine, allopurinol, Vytorin and Lasix.
     Have you ever heard of any adverse drug interactions between Cozaar and felodipine? One is an ACE inhibitor and the other is a calcium channel blocker.

Jon's October 9 reply to Joyce W's October 9, 2006 - Hi Joyce, According to the package insert, there is no proven interaction in general between ARBs (Cozaar is an ARB) and felodipine. However, all CHFers who require a CCB should take amlodipine first and see if it does the job; it is the only CCB proven not to increase risk of death in CHFers. Jon.

Lori A, October 9, 2006 - Hi all, I am really curious about something. I am on an event monitor for 30 days. I just put it on 2 days ago and the thing keeps going off by itself. When it first happened I just erased the episode, thinking I'd hit the button accidentally. After the next 2 times I called in reports. They said, "Oh, you just must have moved."Well, since then it's gone off by itself a whole lot more than I've had any symptoms for which I'd manually trigger the thing. It goes off when I'm sitting perfectly still, when I'm asleep, sitting, walking, doing absolutely nothing. It's a bit un-nerving.
     They don't say a word at the call center when I phone all these reports in. For all I know, it's completely normal but what if it's not? Anyone else have an experience like this? I'd appreciate any response.
Jon's note: Get in touch with your EP doc immediately, even if it makes some people mad. Regardless if it's a defectively set-up monitor or if it's your heart, either way, you need to see the EP doc now. Call center people have no medical training - disregard their comments entirely.

Jon, October 9, 2006 - Hi everybody, The New Page has been updated regarding stem cell trials. Also, in case you wonder why this message board remains "moderated" when so few are these days, one reason is this: I've weeded out 500 spams in the past week alone. <g>
     There are also mailings on the way but I'm trying to put together a television stand for our downstairs room and I don't assemble such things fast anymore. ;-) Jon.

Lori A's October 9 reply Jon's September 22, 2006 - Hi Jon, My last couple of EF measurements were 40 and then 45%. No one has ever said anything in terms of a number about my QRS interval. They have commented that it is very wide and the LBBB is very obvious on EKG. I guess that's a question I need to ask, huh? The docs never volunteer info like that.
     After my last emergency room visit for chest pain, it was still unexplained and I looked on this site for a referral for a new cardiologist. I found one and so far, they seem much more on top of things. I guess I just don't know what questions to ask. Thanks for the info!

Jon, October 12, 2006 - Man, I hate bad days, you know what I mean? Anyway, all those who take Coumadin (warfarin) may want to take a look at this pdf file, which is a new (October 6, 2006) medication guide endorsed by the FDA for that drug: I was going to send it out as a mailing but I am still too tired. Jon.

Cheryl C's October 12 reply to Scott B's October 5, 2006 - Hi Scott, I'm not sure about needing a diuretic when I get short of breath. I weigh myself every morning and if any difference shows at all from the day before, it's only 1 pound. When I originally went into the hospital, most of my retained fluid was in my stomach, but of course by then I had fluid in my lungs too.
     For the last 17 months I have been able to lie completely flat to sleep with no problems. I do notice however, some coughing in the morning when I get up. If anything, my problem seems to act more like bronchitis than anything. That's why I wondered if it may relate to being a former smoker. I actually had quit a couple of months before being diagnosed with HF, mostly because I thought that was causing most of my coughing and discomfort, but also because I had tried several times before and failed in my attempts.
     Here's a question for you Jon, and anyone else who has the same problem. If most of your retained fluid ends up in your stomach, can your doctor find distended neck veins? If so, then I definitely don't need a diuretic, because my neck veins never seem to be distended. I don't want to take a diuretic and chance messing up on electrolytes, if I don't really need it. So far I have been able to keep all the electrolytes in perfect balance within the normal range.
     I sort of think that I just may be one of the lucky ones who will always be a little short of breath. Gasp! <g> When people tell me how good I look and that I don't look sick at all, I just walk a little faster or pick something up and carry it. I can change their minds in a hurry. <g> Cheryl C.

Jon's October 12 reply to Cheryl C's October 12, 2006 - Hi Cheryl, Since CHF affects so many bodily systems, some people will always have some symptoms even when heart function is normal. With that said, some things come to mind.
     First, diuretics and low sodium diet are not the only way to combat fluid retention. Regular exercise is another way because it allows the skeletal muscle to improve its use of oxygen, a system always worsened by HF.
     Second, if heart function is not normal, more aggressive meds treatment can improve heart function, which will reduce symptoms in most people, so always be on top of your treatment to be sure you are as close to the guidelines as possible in your case. Also consider that even with normal heart function, neurohormonal systems that go out of whack with CHF can also benefit from more aggressive meds treatment in some people. For instance, adding Inspra may help some people who are on all the standard meds at target dose.
     Diuretics are only for symptom relief so you are quite right that if you don't need them, you should not take them. Diuretics that aren't really needed make you sooooo tired and do throw your electrolytes out of whack. Personally I think daily morning weighing to determine fluid retention is more reliable than shortness of breath for when to take a diuretic. However, that's not going to be the case for everyone. We all react a bit differently to the same influences so never forget to play around with what works best for you - just keep in touch with your doctor. I do better taking my beta-blocker (Toprol-XL) at the opposite end of the day from my ACE inhibitor (fosinopril) while others do better taking them together or 2 hours apart.
     If you do retain fluid, and it's usually in your stomach, don't forget that the guidelines agree that torsemide is far more effective than Lasix. Jon.

Suzanne C, October 12, 2006 - Hi all, I was just reading on the Yahoo page that it is suspected that 21 deaths in Panama may have possibly been caused by bad batches of a drug called Lisinopril Normon, which is made in Spain and is an ACE inhibitor carried under the names Prinival and Zestril here in the US. Suzanne.

Jon's October 12 reply to Suzanne C's October 12, 2006 - Hi Suzanne, Thanks for the heads up! Readers here are the best source of new info for all of us. As you said, Panama gets its lisinopril from Spain, and lisinopril made there is not sold in North America. If you live in other countries (Asia, Europe, South America, etc), you might want to talk to your doctor about this. On the other hand, the cause of death in those 20 people is from toxicity not ever seen with ACE inhibitors so the drug may well have nothing to do with their deaths (unless it was contaminated at the Spanish factory somehow). If it was the cause, I would expect to hear reports from quite a few countries but you never know since only one batch might have been affected. Jon.

Susan, October 12, 2006 - Hi everyone, I am a 63 year old woman who went to the family doctor to have my meds for migraines changed. The doctor did an EKG to be sure the new meds were okay and found my heart beat to be abnormal. I was sent to a cardiologist and then sent to have an echocardiogram and stress test performed.
     In the interim, it was decided that my heart could not tolerate the stress test and a heart cath test was ordered. Now, 5 days after the cath, I am bruised from my groin almost to my knee and am experiencing extreme pain in my groin. The cardio doctor said this may last up to several weeks before it clears. He has prescribed an ACE inhibitor (lisinopril). They found a 30% blockage, some at top of heart and some at bottom but were not concerned at this time. The lower part (left side) of my heart isn't pumping properly nor is a part of the lower right side. The doctor says there is scarring in those locations, possibly a result of chemotherapy from 1988.
     How does the ACE inhibitor work? What are the damage to my body (the side effects are really scary)? What I've read says it is for high blood pressure, which I have never had. Does anyone reading this take lisinopril and if so how does it affect you?
     Prior to this whole fiasco I was mowing 2 acres of land twice a week, keeping house, moving large objects and walking for exercise, etc. I have had no shortness of breath, no arm or shoulder pain and no heart trouble symptoms. I have been diagnosed as having heart failure - how can that be? The cardiologist says I can keep doing whatever I was doing before. Does that mean there's nothing wrong with me? Why do I need medication? I felt wonderful before this all started. Now I have headaches, upset stomach and inability to sleep due to pain in my groin. If you have any coments or suggestions, please write. Thanks! Susan.

Jon's October 12 reply to Susan's October 12, 2006 - Hi Susan, First, the groin problem is not normal!! Get a second opinion immediately. There should not be more than a bruise the size of a quarter and a small bump after a groin cath.
     Follow the links in your post to get the info you need - it's all there. If you have more questions after reading them, try following the links in those pages and also ask here. You might have had what is called a "silent" heart attack - that's a heart attack that does not hurt or cause symptoms when you have it. Just in case that happened, you should have been started on a beta-blocker first, then the ACE inhibitor, and that's another reason to get a second opinion immediately. I am, by the way, basing that on the guidelines for treating heart attack patients as published by the AHA/ACC meant for all American doctors to follow. However, it is well known that chemo can cause heart failure many years after it's given.
     I have taken an ACE inhibitor (2 different ones) for 12 years without problems although some people have to switch to ARBs while a few can't tolerate either one. If you are black, you should take a drug called Bidil, which is a combination of 2 older drugs that works much better in black people than ACE inhibitors. These are standard meds for CHF, with or without symptoms. The links in my reply should help as well. Get to another doctor right away about that groin! Jon.

Mary C's October 12 reply to Lori A's October 9, 2006 - Hi Lori, I just completed an event monitor of 30 days. I really liked mine. I kept it in a bag and when I had an event I pressed it on my chest and recorded the event. Then I would call them and fax it in. The people on the other side were nurses trained in telemetry, called Lifewatch. I hope you get it all figured out. Do like Jon said and go to an ER and get the scope from a doctor.

Leslie K, October 12, 2006 - Hello everyone, This is my first time to post but I have been reading for a year since being diagnosed with cardiomyopathy. Reading everyone's posts have been very encouraging and has helped me learn so much. I have been shy to write in, but now I have a question I am hoping to get help with.
     I just had another echo and my EF was down. I was expecting that it may even be up to normal, since I have been feeling and doing better. I started at 18% a year ago and went up to 31% in six months. This latest test was 24%.
     Is the test accurate for this measurement if the patient is clearly having a panic attack with fast pulse rate and a feeling that the heart is jumping all over the place. The tech said my heart rate was very variable, and that was a new thing for me. I can imagine that adrenalin would constrict the arteries and I think that might affect the pumping and the left ventricle, but I have not found any information yet about this.
     Thank you Jon for all you have done to make all this available to us.

Jon's October 12 reply to Leslie K's October 12, 2006 - Hi Leslie, It sounds a lot like a-fib although it could be just about anything. The effect on echo results would be the same, though. A-fib and other arrhythmias radically reduce the accuracy of EF measurement. My own CHF specialist said he doesn't do EF readings when the heart's rhythm is out of whack, like with a-fib, since he knows it won't be accurate anyway. Jon.

Sarah K, October 12, 2006 - Hi all, I'm just looking for a bit of support - thoughts from those who have been here before. I'm 34, listed as status 1B for heart transplant on a dobutamine drip and am a newlywed. Due to size and blood type, the docs think the wait shouldn't be long. Easy for them to say, they aren't counting the minutes. Any advice on how to keep your head straight during this time? Thanks.

Kit C, October 12, 2006 - Hi, This is my first post. I was diagnosed with CHF a few weeks ago. My doctor had an echocardiogram done because of my shortness of breath. He said my heart was enlarged and I have significant CHF. My EF is less than 40%, but I don't know yet how much less. Three years ago I had a cardioversion done and I have been on Diltiazem since then. The procedure put my heart back into sinus rhythym. My resting pulse was high at about 90 but steady, and I felt fine.
     Tonight I was reading that CCBs are harmful to CHF patients. Why hasn't either my doctor or the person who is going to be my CHF "coach" with Kaiser (my insurance) taken me off the CCB? My resting pulse is currently a steady 120 (yes, 120). Shouldn't they be tapering me off this drug? I haven't met the coach yet, but I spoke to him on the phone and we have an appointment in about ten days. He has full information on what drugs I take. Could the prolonged use of the Dilt brought on the CHF?
     Realistically, how long can someone live with CHF if they take good care of themselves and follow the drug and diet regimen? Thanks.
Jon's note: There is only one CCB proven not to harm HF patients and that is amlodipine (Norvasc). See I'm in year 12 of my CHF. You should immediately be on a beta-blocker and switched to amlodipine if at all possible to reduce heart rate. Now.

Jon, October 13, 2006 - Hi all, I'm too out of it this morning to do posts yet but wanted to reassure everyone on lisinopril. The paper this morning said the cause of the deaths in Panama was caused by toxic chemicals found in Panamanian-manufactured cough syrup, not any heart meds. Jon.

Valerie R, October 13, 2006 - Hi, I have been told to get a barium enema rather than a colonoscopy. Does anyone have any experience with this? I realize if something shows up, I will then need a colonoscopy.
Jon's note: I can only say that I had one long ago and passed this time around.

Jimmie R, October 13, 2006 - Hi Jon, I just had an ICD implanted in July of this year and had very few improvements. I have BBB. While being checked I was told of what I think is a new thing, at least in our area - an optimization clinic. The only imformation I found on the web was for docs only and I had a hard time trying to understand most of it so if some one would point me in the right direction I would appretiate the help.
     I hope you feel better Jon and may God bless. I checked out your music and even found a church that includes it in their service. It is called The Rock. Thanks, Jimmie R.

Jon's October 13 reply to Jimmie R's October 13, 2006 - Hi Jimmie, It sounds like you may have a combination ICD/pacemaker device, since it is usually pacemakers that get optimized. "Optimization" is becoming much more widely used now and many heart failure clinics offer it as part of their device therapy. It's a process of testing you by echo and EKG while "tuning" or adjusting the software in your device through a desktop computer-like machine called a programmer. Some medical centers call the department that does this optimization "clinics" but I'm not sure why.
     Some device manufacturers now offer an "optimization system" that clinics can buy that gets the service available in a hurry, with tech support. I know Theralogic has one of these. Please note that usually only 3-lead (biventricular or "CRT") pacemakers can be optimized. Jon.

John D, October 13, 2006 - Hello all, Today is my first visit to this site. I look forward to really studying the posts this weekend, but for now I wanted to share a bit of my story. I'm 54. This past June I had a routine EKG at my diabetic doctor's office which was abnormal. This led in quick order to an echo, a stress test and an angioplasty. The cardiologist diagnosed "combination" dilated cardiomyopathy with 80% blockage in a main artery and an EF of 30%. They quickly started me on Coreg at 50mg, Altace at 10mg, Lipitor at 10mg, Tricor at 48mg, Plavix at 75mg, and aspirin at 325mg.
     My mother died of viral cardiomyopathy at age 65. Her final years were not pleasant, bless her heart. I watched the fatigue consume her life. A year ago, before the diagnosis and the medication, I was working at the office 12 hours a day and on our ranch every weekend. Now I'm lucky to spend two hours at the office and sleep most weekends. The doctor told me at best I have five years. I'm looking into CoQ10 other supplements and even a vegan diet to restore energy and live past the five year sentence. Any suggestions would be greatly appreciated. John D.

Jon's October 13 reply to John D's October 13, 2006 - Hi John, First, get a different doctor, and make this one a heart failure specialist. The 5-year stat is a standard reply from a doctor and it is wrong as an average life expectancy for a CHFer. See this post for why ( and the other article as proof (
     Personally, I think a vegan diet is in general a bad idea for most CHFers. Most dietary CoQ10, for example, comes from fish and meats like pork and beef, as just one example. Your aspirin dose is quite a bit higher than usual, with the usual dose being 80 to 85mg (baby aspirin size), especially when on another blood thinner as well, like Plavix. I hope it helps a little and I'm sure others can offer more. Jon.

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, 2005, 2006 Jon C.

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