CHFpatients.com - The Beat Goes On Heart Failure Message Board

Search This Site

The Beat Goes On

This is a moderated heart failure forum. Caregivers and loved ones welcome. Post a message here. Posts will not show up immediately - please be patient. Old posts can be viewed at The Archives. All posts can be viewed by anyone on the web. Posts may not be medically accurate. Any post can be refused or edited for any reason.

Updated January 22, 2008, 11:45 AM, CST

To donate without PayPal or credit card, send a check to

CHFpatients.com, Inc.
4 Castlewood Court
St. Peters, MO. 63367-2408

Jon, September 4, 2007 - Hi everybody, According to my local pharmacy and my cardiologist, generic Coreg should be available locally pretty much everywhere by tomorrow. So if you have a Coreg prescription and it's not Coreg CR, I would ask my pharmacist about obtaining Coreg in the generic version at a much lower price. I hope it helps, Jon.

Jon, September 4, 2007 - Hi Everyone, I know it will be tempting to answer every post on the forum when I first restart it. However, in order for me to continue learning the software and to maintain the forum at the same time, I would appreciate it if everyone answered by e-mail whenever possible.
This will give me time to continue learning the software while I maintain the forum. The learning curve is more ferocious than I thought possible, and using it in a 1995 freeware HTML editor does not cooperate well with modern speech software. I cannot afford to upgrade my HTML editor, therefore I must simply learn to deal with it. This means I have to learn to do things in a way the software is not meant to do things.
Give me time and I will get it done. Thank you all for your patience.Jon.

Jon, September 21, 2007 - Hi Everyone, I am sorry for the delay. I thought I was coming down with a serious mental illness as well as increased physical illness. It turned out that my testosterone level jumped from mid-normal to twice high-normal in one month (up to 1445). The symptoms were severe, so much that I stopped driving, much less trying to get the heart forum back up.
Now that I have adjusted my Androgel (testosterone supplement), I hope to be back to my usual irascible self soon and can then continue with getting this forum back on track. Go figure - no one said it would be easy. <g> At least, my new health problems have given me a personal insight into all of your lives who suffer with multiple chronic illnesses so I guarantee that my empathy level is much higher and I will be doing more research into other illnesses that many CHFers suffer over time in addition to their heart failure.
Again, thank you all for your patience. On another topic, apparently, Disability Determinations has decided I qualify for SSD without a hitch as long as their review doctor doesn't muck things up. They don't think he will. The extra income will make my stress level much more manageable, and that will help me keep things going once they're going. Of course, I have to wait 5 months for that first check so that's going to be very, very tight. Jon.

Joe H, October 17, 2007 - Hi, I'm glad to have discovered this forum thanks to a posting I made on My Regence. I have CHF, with an EF of 7 to 30% and a regurgitant mitral valve. I'm on Coreg, Lasix, potassium, Lisinopril, simvastatin and Coumadin. Last June I had an ICD implanted in my chest to protect against sudden cardiac arrest and to pace my heart. Since this is a progressive disease, I pretty much know that it will eventually cause my death through multiple organ failure. So, I'm having some trouble coping with the long-term effects, given that my case is complicated and I don't know how long I might last. If anyone knows of a resource that would help me cope effectively without getting depressed or morbid, I would be grateful. Thanks. hansenjb@comcast.net

Jon's October 17 reply to Joe H's October 17, 2007 - Hi Joe and Everyone, First of all to everyone, I'm sorry about the incorrect dates, but I actually did these posts yesterday. Then I got the chance to get some medical testing out of the way. Also, I am still working my way backwards through posts received, so please have patience. Thank you.
     First of all Joe, I believe that you have found the resource you are looking for. As to this disease absolutely leading to death long-term, I would like to point out that I have multiple serious chronic illnesses including heart failure and am still leading a useful and enjoyable life, 13 years after getting heart failure. My EF when I got heart failure was 13%.
     My current illnesses include fibromyalgia, heart failure, rheumatoid arthritis, peripheral neuropathy, osteoarthritis, bursitis, chronic depression, anxiety attacks, chronic insomnia, carpal tunnel syndrome in both wrists, hypogonadism, and a few other odds and ends not really worth mentioning. So as you can see it is indeed possible to keep on going even with heart failure and other illnesses over a long period of time.
     I am not saying that everyone will keep on going like the EverReady Bunny, but not everyone with heart failure faces certain death from multiple organ failure either.
     To everyone, it's certainly nice to be back. I don't know how erratic or consistent posts will be for awhile as I adjust to the task, but it feels good to sit here and do this again. Jon.

Julia W, October 17, 2007 - Hi all, I'm just wondering if anyone knows if there is a world record for how long a person has lived with a mitral valve replacement. I have a close friend who had his replaced in 1988 and next year will be his 20th year living with the replacement. We are all keen to know how this rates. Cheers, Julia. walman.julia@saugov.sa.gov.au

Glenn M, October 17, 2007 - Hi everyone, I have CHF and would like to know if using a testosterone amplifier (17HD) is safe. I have been working out hard and I am even looking to use creatine and some whey protein. Please give me your opinion. gmerr24@aol.com

Jon's October 17 reply to Glenn M's October 17, 2007 - Hi Glenn, I have not updated my personal workout page for a long time, but I now do powertraining - not powerlifting. You can refer to the bodybuilders bible by Arnold Schwarzenegger for more information on power training.
I do take creatine monohydrate but not just for my muscles, also for my heart. See Nutrient Stew in the Nutrients section for more information on that. I also take arginine for my immune system. I know nothing about 17HD, but I do know that there is no such thing as a real testosterone amplifier. I take a prescription testosterone gel called Androgel to combat my own low testosterone level. Aside from prescription treatment, you simply will not get a real testosterone increase from any product. Jon.

Bob Skuster, October 17, 2007 - Hi all, I am having very weak and stiff muscles in my lower legs. When I stopped using Lipitor, the problem got a little better but returned when I started using Vytorin. Could the weakness and stiffness be caused by my low ejection fraction? Currently, my ejection fraction is 35 to 40%. If other people are having a similar problem, I would like to hear about different ideas to resolve the issue. Thanks, Bob S. rjskusters@msn.com

Mike M, October 17, 2007 - Hello everyone, Does anyone know if there are any drugs or supplements that would give a false low ejection fraction reading on an echocardigram? I have never seen this addressed anywhere but have read that calcium channel blockers and even Coreg could actually make heart failure worse over the short hall. I take a lot of heart meds and supplements, and always wondered about this. My ejection fraction has been all over the place for the past 4 years. mmervan@ptd.net

Ken N, October 17, 2007 - Hi all, I had an ICD implanted 3 years ago and from time to time experience pain in the pocket area. I have self-treated with amoxicillin, and it clears, but eventually the infection and pain will reappear. This is of course worrisome to me. Now my doctor has given me Clindamycim but the cautions of danger and possible death using this antibiotic really, really worry me.
Who has experience with ICD pocket infection? How was it? How was it treated? Which antibiotic was used? Please volunteer your experience and advice. You can e-mail me directly. Thanks. kennoetzel@aol.com

Brenda T, October 17, 2007 - Hi all, I was diagnosed with DCM in 2002. I just found out I have uterine cancer and I have heard chemo affects the heart. Will chemo hurt me? Any info or links would be appreciated. Thanks, Brenda. hissandtell@aol.com

Jon's October 17 reply to Brenda T's October 17, 2007 - Hi Brenda, yes. Chemo is a known cause of worsening heart failure or heart failure onset. Oncologists are supposed to do an echo before you begin chemo and then do regular echoes at specific intervals to check your heart function and steer treatment. If your oncologist does not do this I would seriously suggest getting a second opinion or a different oncologist. Jon.

Bob M, October 17, 2007 - Hi, I have a seemingly difficult problem. I am extremely allergic to sulfa, so Lasix, Demadex and Bumex all make me ill. I tried Edecrin and still was vomiting. When I go 48 to 60 hours without a diuretic, I cannot breathe due to pulmonary edema. My quality of life is unbearable.
I do not mean to to whine, but there seems to be nothing available for me. I made a halfh-earted attempt at ending my life but I have prayed so hard for 7 years for an answer. I have tried compounding my diuretic to a lotion form to no avail and have even dried suppositories, but day or not successful. I have been looking and seeking help everywhere possible. I was wondering if any others had some feedback that would be helpful. Thank you. Hawkdog86@aol.com

Jon's note: Have you tried thiazide diuretics?

Elaine J, October 17, 2007 - Hi, Am I in the Twilight Zone? In May of 2006 I had complete heart block, ICD implant, CHF with DCM and an EF of 30%. I started on 20mg Lisinopril, 160mg aspirin, 10mg Paxil, and was titrated from 3.25mg to 50mg Coreg BID over 12 month's time. The higher my Coreg dose, the worse I felt. Up until May of 2007 I was routinely walking 3 miles a day with no problem and going up 39 steps to my front door with no problem. I had no fluid retention at all. my blood pressure averaged 105 over 65.
In July of 2007 I started having a lot of difficulty breathing going up stairs. An echo early in August of 2007 showed mine EFin the high 50s, with no longer any LV enlargement. Cardio docs said this was great and lowered my lisinopril dose to 10mg and my Coreg dose to 25mg twice a day. Within one week I began having fish-flopping in my chest. My ICD showed short runs of A-fib. I went to the emergency room 8-18 with fast, irregular heart beat, faintness, and confusion. Doctors added 0.125 digoxin and 325mg aspirin. Now I can't walk more than about 6 blocks without heavy discomfort and must stop every 3 to 4 stairs and rest. I still retain no fluid, and my blood pressure averages 110 over 68. I'm really discouraged. What is going on? Any ideas appreciated! eljerome@sonic.net

Lori W, October 18, 2007 - Hi all, I would like to know if anyone has experence with weight gain. I had my second open heart surgery, valve replacement, in Feburary of 2006. Since then I have steadly gained weight. I have gained about 50 pounds so far. I am on a lot of different meds and working out is hard due to shortness of breath and fatigue. Has anyone else had this problem with weight gain? I am at a loss at what to do. I have cut way back on what I eat and I never have between-meal snacks. If anyone has any thought about this please respond. waltershenry@bellsouth.net

Estelle A, October 18, 2007 - Hello, I see a cardiologist for CHF and A-fib. My blood pressure continually runs very high. My cardiologist doesn't seem concerned about this at all. The majority of my readings are between 140 over 67 to 190 over 80. I tried to find a cardiologist in my area who specializes in CHF but there are none that I can find. I keep returning to the office to bring this problem to their attention, but they don't seem to be concerned. I think the BP is too high.
I am on Coreg, Clonidine, Diovan HCT, Hydralazine, Pacerone. Has anyone else experienced uncontrolled hypertension? Any input will be appreciated. Thank you. est731@aol.com

Mitch M, October 18, 2007 - Hi all, Does anyone get off Lasix and do okay or do you take them for life? Is it safe to take them for long periods of time? Will I start swelling? Will my body get rid of the fluids on its own? I've been off my Lasix 2 weeks and seem okay but I don't think I go to the bathroom often enough. I try and keep fluid intake down to 64 ouncees a day and sodium intake down between 500 to 1000mg daily although some days I go over that; then I pay for it in the way I feel. Any help, please? Thank you. info@bigdoggraphics.net

Ally K, October 18, 2007 - Hi, I am new here. I am trying to find support and information after being diagnosed several months ago with chemo-induced CHF. My EF is between 5 and 10%. I had a pacemaker/ICD implanted last month to control a secondary problem of arrhythmia after a failed ablation attempt. Now they are recommending the Heartmate II pump. I meet with the head of the transplant unit at Massachusetts General Tuesday.
I am wondering if there are any of you out there with similar circumstances; especially the chemo factor, which they use to qualify all their answers - it seems to be the wildcard. I am 42 and have 4 children and my quality of life really stinks. I spent most of the summer in and out of the hospital, usually arriving by ambulance. Any and all input would be so appreciated! Thank you, Ally. aknapp1965@comcast.net

Paul R, October 18, 2007 - Hi, This is my first time to this CHF forum. This is a great site, very informative. Anyway, does anyone know if amiodarone (Cordarone) causes or exacerbates diastolic function? I take it for a-fib associated with hypertrophic cardiomyopathy. Thanks and take care. Paul. paul.rogers@arts.monash.edu.au

Betsy W, October 18, 2007 - Hi all, I was wondering if it was difficult for any of you to get a diagnosis. I have been going to doctor after doctor for the past 4 to 5 years begging for someone to help me. I have been diagnosed with sleep apnea, asthma, insulin resistance, Polycystic Ovarian Syndrome, endometriosis, Chronic Fatigue Syndrome, fibromyalgia, irregular heartbeat, high blood pressure, high cholesterol, GERD, hiatus hernia, gall stones, ulcers, Irritable Bowel Syndrome, fluid retention, chronic sinusitus, osteoarthritis, insomnia, an "unknown" immune system disorder, etc. The list truly goes on and on.
I am a 40 year old female and I was perfectly healthy up until a few years ago, when I seemed to just begin falling apart. I gained 80 pounds in 6 months without changing my diet, I feel as if my chest is in a vise constantly, I am incredibly short of breath (especially when lying down and worse on my left side), I have a nagging cough especially at night or if I bend forward, I have palpitations, headaches, chest pain, swelling of my feet, ankles, hands, and abdomen, I am nauseated most of the time. Basically I have no life anymore.
I keep telling my doctors that something is really wrong with me but I just get treatment (14 different meds) for a bunch of little things instead of finding out what the big underlying problem might be. Does any of this sound familiar to you? I am not a hypochondriac, I am not stressed out, I am not having panic attacks, nor am I imagining all of these ailments - all of which I was told by a couple of doctors. Betskw@aol.com

Jon's note: This sounds very familiar to me - my rheumatologist and primary care doctor are still looking for my underlying immune system disorder, but they both believe it exists, to my advantage. One thing jumps out at me. Why are you retaining fluid? That's the question to push forward for an answer.

Sue K, October 19, 2007 - Hello, I started my mother recently on a daily dose of 50mg of CoQ10 and found her to have really low energy. Just walking seemed to be a struggle for her, dragging her feet. I stopped giving her this supplement after a few days and found her back to her normal energy level. Can anyone tell me if they have experienced this same effect? suek1158@msn.com

Bunnie R, October 19, 2007 - Hello everyone, I was diagnosed with CHF five years ago. I also have a defibrillator. I could never get any information on diet, etc. If my husband and I asked the doctors, we were told low sodium, but that isn't enough. I have been to the hospital twice since February with pulmonary edema and finally someone came to me and gave me the information. I didn't know that low sodium is 2000 mg a day. I didn't know I'm not supposed to drink more than 64 oz of fluid a day. So I tried to not use much salt but I've never felt very good.
So this time the nurse told me that if I cut back on the sodium and fluids, I shouldn't be so tired all the time. Wouldn't that be nice? I can't imagine not being tired all the time. It would be nice to go home from work, and actually be able to do something besides sit in my chair.
There are many people here at my job that don't really understand why I can't do the things I used to do. It's very frustrating and difficult. I mean, I get winded just walking down the hall. I'm so happy to have found this site. I know there are many people who have CHF but I've always felt so alone. It's nice to be able to see what others like me have to say and feel. Thanks for all of this. breynolds@ara.com

James N, October 19, 2007 - Well, With a mere 2 months remaining on my COBRA, I finally found a job with health benefits and they start right away! Although things look great, I'm a realist and like to be prepared for the worst. How long does one have to work at a job in Ohio before COBRA comes available again? noctaire@infobin.org

Bobbie L, October 19, 2007 - Hi everyone, I need a specialist in the Palm Harbor, Florida area (near zip code 33761) - this is the greater Tampa Bay area. I got caught in the "you're cured" trap when meds brought my EF up to normal. Unfortunately, my husband was told I was cured too!
I have a hysterectomy pending in 2 weeks (on an as-soon-as-possible basis) and post-op work up showed that my cardiomyopathy is back with EF back down to 40% and diastolic dysfunction, but I cannot take diuretics due to kidney impairment so I need a cardiomyopathy specialist pretty fast.
Any and all input would be appreciated. I am also near Clearwater, Safety Harbor, Oldsmar, Dunedin. Bl@mindspring.com

Tracy J, October 19, 2007 - Hello, I am not sure what's wrong, but I fear it may be CHF. I'm a 41 year old female and with a history of supraventricular tachycardia and high blood pressure for which I take Cardizem. My father died 20 years ago at the age of 57 from sudden cardiac death. Two years ago my PCP did an ultrasound of my heart and said it was working fine but there was some mild thickening from my blood pressure being high. I didn't know that put me at risk for CHF until I started checking out symptoms on the Internet and doing some research recently.
     I hope I'm not just scaring myself. I am overweight and just stopped smoking about a month ago, but I only smoked about 3 years. It's a strange story. Basically I picked it back up after quitting when pregnant with my first child over 20 years ago, when my husband was deployed. In the last 2 weeks or so, I've had constant phlegm in my throat up into the back of my nose, but no actual nasal congestion, and periodic bouts of just not feeling "right" or feeling that I needed to breathe more deeply than usual. I haven't really had any unusual fatigue and I walk my neighborhood in the evenings and don't really get too winded. I don't have to stop or start wheezing or panting, and I catch my wind pretty quickly after I stop walking.
     Yesterday though, I had an episode of feeling lightheaded when I got out of the car. It went away quickly and I was fine afterward, but it scared me. I've had pain around my sternum for years and am taking Nexium for GERD. I have a quarter-sized stone in my left kidney and am afraid to have the lithotripsy until I get my heart checked, but I could't get an appointment with the cardiologist until the 21st. I'm worried about waiting, but I really don't feel bad enough to go to the emergency room. I no longer trust my PCP because he keeps telling me nothing is wrong.
     I called the cardiologist's office to see if I can get in any sooner and they said they'd call me back, but I haven't heard from them yet. Should I go to the emergency room even though my symptoms are pretty vague and I'm not feeling just horrible? I'm really concerned over the phlegm in my throat and the feeling of "tightness" in my chest. I thought maybe allergies, but I know that CHF sometimes is misdiagnosed as allergies or asthma or a cold, etc. Can anyone relate to these symptoms or have any advice?
     God bless Jon for this web site. It is a wonderful site! merrycat86@aol.com

Ken N, October 19, 2007 - Hi Jon, I've been checking in on your site from time to time over the years and I was shocked to read that you went off SSD. You did not write the particulars except that your high EF may have caused the doctors to only weakly support your continuing on SSD. I hope you will post more detail on your SSD review and reasons they removed you from SSD and perhaps on your appeal of the ruling. Meanwhile get the right doctor to write the correct words to get you back on SSD. Thanks, Ken. kennoetzel@aol.com

Jon's October 19 reply to Ken N's October 19, 2007 - Hi Ken, It was just the increased EF number period that terminated my Disability. None of my doctors had any say in the decision, it was purely Social Security. Everyone should know that if you're terminated from Social Security and then reapply with a new claim within a certain number of months, you do not have a waiting period for the check or the Medicare coverage. So when this disability application was approved, I had my check and my Medicare card within two weeks.
     My current PCP wrote a letter and filled out a number of forms for my disability attorney that very strongly supported my claim. My specialists preferred to rely on my medical records alone. Fortunately they all keep very good medical records, and my rheumatologist even types in all my symptoms and comments while I speak them. Of course I also immediately brought in both my federal Senators and my federal Congressperson to apply pressure to Social Security at once.
     It helped that I had 4 conditions that each alone qualified me for disability this time. I never appealed to disability termination last time. There were simply no terms on which I could do so because as far as Social Security is concerned once you're EF is "normal" you are no longer disabled, period.
     Please bear with me as I continue to learn this speech software. If any of my sentences have an odd word here or there, it's just due to bad proof reading. This is amazing software but it's intensely complicated to learn. Jon.

Karen K's October 19 reply to Mitch M's October 18, 2007 - Hi Mitch, I am a 64 (soon to be 65) year old woman, diagnosed with cardiomyopathy in 1991. My EF was at that time 17%. It is now about 40%. I am very well compensated. I don't have shortness of breath (as a rule) and didn't think I retained fluids given that I weigh myself daily and my weight is relatively stable.
     About a month ago, I had my six-month appointment with my CHF doc. I am seen at a highly recognized university hospital heart failure clinic. I suggested that perhaps since I did not appear to be retaining fluids and given my kidney function is not as good as it should be, perhaps I could try eliminating the 40mg of Lasix I was taking 4 times a week. The day after my appointment I received a call suggesting I also eliminate the Aldactone (12.5mg three days a week) since my kidney function was not improving.
     So, I gladly eliminated these two meds. Here comes the kicker. One night I woke up and went to the bathroom, came back to bed and although I couldn't call it shortness of breath, something wasn't right. However, it went away and I continued on with my regular Sunday. The following Tuesday night, I had a brief episode of the same symptoms and the next morning (Wednesday) I woke up and took my dog outside. Again I had those same odd symptoms - not what I would call shortness of breath but more a feeling of not being able to take in the air as I normally did. I know this sounds odd, but that's how it felt. I had zero chest pain. It was 6:00 AM in the morning.
     I've been divorced the past 3 years and live alone. I was really frightened so I called my daughter, who put everything on hold and took me to the emergency room. They "claim" I was gray. I've never been seen so quickly in an emergency room nor had such immediate attention. I was also told I has a small amount of fluid in my lungs although by my weight that morning, I would never have known it.
     Eventually, I was admitted to the ICU where I was on oxygen for the first day and basically under observation. On day 2, I had a thallium stress test (no blockages, yea!) and was released from the hospital but told to start taking my Lasix 4 times a week and check in with my heart doctor at the University of Iowa, which I did. They decided I should continue as advised by the hospital in my home town, which I did. Incidentally, my kidney function did improve while I was off the diuretics.
     Then, surprise! Last Friday night I was on call for a volunteer position I have with our local domestic violence program. At about midnight I was awakened from a very deep sleep by my phone ringing. I needed to go to the police department for a domestic violence call. That same strange feeling came again but I went and did my thing at the police department. That took about an hour and when I returned home, I had no symptoms. I climbed back into bed, was just about asleep and the phone rang again - another trip to the police department - no symptoms at all.
     Where am I going with all this? Well, I've talked with the University of Iowa staff again regarding my symptoms. They do sound somewhat like I'm having a panic attack but that has not been verified. I've been treated for a very long time for an anxiety disorder but when I had panic attacks before, I didn't feel as though air wasn't getting to where it belonged. For now, everything is still on hold. The University of Iowa staff did not ask to see me and this week I feel really good. I did tell them that I'm traveling to Arizona next week. Basically, they are stymied as am I.
     I do know that I am under a lot of stress due to assorted life situations and I know my body well enough to know how it reacts to stress. Usually I can tell myself either the stress will soon end or I back off a bit. That's what I've done this week - eliminated some of the stress and am now praying that I'm fine when I go to Arizona next week.
     I guess there are 2 things I would emphasize. 1) Get to know your body very well, and (2) Become your best friend and advocate. You might want to reconsider eliminating any meds. Hopefully my ramblings have made some sense. Karen. karenk@machlink.com

Karen K, October 20, 2007 - Hi, If you are having trouble coping, I would suggest you find a trained professional to counsel you because it sounds as though you are very depressed. This is treatable! I take Prozac daily and likely will the rest of my life. If nothing else, check out the web site below to find a deprression hot line in your area. I know how hard it is to accept what you've been dealt. I spent two years in total fear of dying. I will soon be 65 and I still have no intention of leaving this world yet. Try www.healthyplace.com/Communities/Depression/suicide/crisis_centers.asp.
Your post really does frighten me because it sounds as though you are giving up. Please, please reconsider your way of thinking. Find someone to talk to about your situation. Post on Jon's site as often as you want. There are a lot of wonderful people there who would not judge you but rather offer support and suggestions. Karen K. karenk@machlink.com

Marty C, October 20, 2007 - Hello, One person posted who was having a lot of trouble coping with their illness. I'm very sorry to hear that you're feeling so bad. I have felt the way you describe. You asked, "What do you do when you don't want to go on living? Because it's too much - the disease, the meds, the treatments, the everything."There are so many ways to answer your question, but I want to tell you this more than anything else: You are not alone. This is a tough and sometimes overwhelming illness, and it brings most of us to our knees at some point.
God put you on this earth for a reason and He will not take you until your purpose here is accomplished. Recognize that feelings change and you never know what's around the next bend in the road. Despite the burden of this illness, we all have to believe there are wonderful things yet to come in our lives, and each new day may hold a breakthrough, or at least a reprieve of your symptoms and feelings.
Ask God to show you the reason you're still here, and understand there are better alternatives than throwing in the towel. If you need someone to talk to, there are many good and willing people here who will respond. Please e-mail me if you need someone to listen who understands. God bless, and don't give up. Marty. padre45@aol.com

Pam L's October 20 reply to James N's October 19, 2007 - Hi James, COBRA is not triggered until your eligibity for group coverage terminates (such as when employment ends) and you convert group coverage to individual coverage. However, if you have maintained COBRA coverage and you then become eligible for coverage under another employer's group plan, you may be able to "bridge" or "port" with no waiting period or little to no exclusion for pre-existing conditions. Many states have such "portability" laws.
Insurance coverage is an important benefit. You should consult an employment lawyer for an opinion and to learn your rights. Be careful what you ask HR (human resources) - dangerous to let them know you have a health condition that might require you to use sick leave, FMLA (Family Leave Medical Act), or other benefits. pjones@shreve.net

Ann L's October 20 reply to Brenda T's October 17, 2007 - Hi Brenda, Oh yes, chemo can adversely affect the heart. Certain chemicals are more heart-toxic that others. Every oncologist I have heard of does everything to insure that the particular drugs you must take are within the doses that your heart can withstand. Pretesting must be done on even healthy hearts, and it's very expensive testing.
Nevertheless, heart damage does occur with this method though it is rare. I have a 30% EF as a result of my treatment. My oncologist had been practicing for 12 years when I became the third patient - and he has hundreds of patients. There was a site I very much liked but few postings were there so I seldom go to it any longer.
Have a serious talk with your oncologist but I am certain you already planned this. For me, five years later, I still have the cancer and I still have the heart damage, but the best part is I still have a great life with lots of physical activity, travel, and involvement with others. It's surely tough to face both problems at one time. Very. annlau@davtv.com

David Wilson, October 20, 2007 - Hi Jon, I am glad to see the heart forum is back up and running. I have missed it. For you newbies, take heart. I have had CHF since 2000 and I don't even worry much about my ejection fraction anymore. I function pretty well and can work part-time. I feel pretty good most of the time.
On the subject of Coreg, your dose can vary over time. I worked up to 50mg twice a day, then down to 25mg twice a day and now was reduced to 12.5mg twice a day because I have low blood pressure now. Years ago my blood pressure was too high but now it runs way too low. Yesterday it was 83 over 53, which is pretty low even for me. CHF and other medical problems we get are not easy, but we can cope and can get better over time. wilsond537@aol.com

Debra S, October 23, 2007 - Hi, I know how hard it can be to cope. I am anxious and weak-feeling every day of my life. I too feel that it is hardly worth it. I had a second heart attack in July; no damage, but a stent and was on Plavix for a short time. The drug made me feel awful so I was taken off it after 2 months. The battery in my device had to be replaced in August - quite a summer.
My doctor at Cleveland Clinic is now talking about heart transplant or an LVAD. I wonder if anyone on this forum has had an LVAD for long term and how they feel. I would like any info.
Jon, I am so glad to see you back. I saw on another forum that another reader had his transplant. I hope he is doing well. Debra. r_steinberg@sbcglobal.net

Gatha E, October 23, 2007 - Hi all, I am glad to see you back, Jon! Has anyone out there on Coreg 25mg gotten terribly cold after taking the medication? I can take it and need a blanket (in Texas in the summer) an hour after taking it. Thanks for your help. jell855859@aol.com

Mary C, October 23, 2007 - Hi Jon, Wow, I almost lost hope you would get the speech software to work. I should have known better. Jon you are like a Timex watch. Remember the old commercials. How's Mad Jack? Huge, I bet. I am doing well. I am so happy you are on SSD again. It is sad that you need it to survive. Welcome back Jon, and others.
Remember, I have stress-induced cardiomyopathy. Well, I am on another round of doctors and tests. I am seeing a psychiatrist for depression. Coreg is the culprit, but I need it as per my CHF specialist. I see a lot of people are depressed on this board. Just remember besides the illness and lifestyle changes, it is the medicine we need to take that can also screw up our brain chemistry. Get a specialist for this also, since a PCP can only do so much. I am finally finding depression relief. Good luch everyone. Jon, I am still praying. MHCARRS@aol.com

Sue K, October 23, 2007 - Hello Jon, In July you mentioned that you went through a bout of kidney failure and extreme med changes. I'm my mom's caregiver. My mom has kidney issues and I would like to know what you went through and how you were treated. I know she is not taking enough Lasix because she coughs all the time and at times I can feel the rattles in her lungs when I put my hand on her back. However, the heart specialist is hesitant in increasing her Lasix due to her kidney issues. Any words of wisdom here? suek1158@msn.com

David Wilson's October 23 reply to Marty C's October 20, 2007 - Hi Marty, I was able to get a month's supply of Coreg for only 4 dollars at Wal-mart. Many heart meds are on their 4 dollar a month program. Marty, it does get better but not overnight. Coreg really helps the heart but it takes a lot of time to get better. Don't get depressed. Maybe you need a pet. At my low point years ago, my heart doc told my wife to get me a pet and make me take care of the pet. We got two chihuahuas and they helped. I had a reason to get out of bed, they needed to be walked and fed, and they gave me lots of love. Every time I have been in the hospital, the dogs are always so glad when I come home, they miss me. They say people with pets live longer lives. I think it is true. wilsond537@aol.com

David Wilson's October 23 reply to Lori W's October 18, 2007 - Hi Lori, I just wanted to comment on your comment about "working out." The fact that you are short of breath and fatigued may be the best argument that you need to work out more. With CHF, we are on a slippery slope. If you exercise (weight training, aerobic fitness) you will burn caleries, feel more energetic, and you will have less shortness of breath.
     Why? As your conditioning improves, your body will become more efficient at using the oxygen you take in, and it does not take long to see this effect. Often, shortness of breath is caused by fluid or mucus in the lungs, a condition which becomes more apparent while lying down.
     Talk to your doctor about the types of exercise which are safe for you. Perhaps there is a program available to you for medically supervised exercise. I thought I would never be able to play badminton again. While I rarely play singles, I am now able to play doubles 3 times a week, 3 hours a night. Yes, I am very tired after, but I can do it. If I ever miss a week (during holidays), I rapidly lose the benefit and begin feeling fatigued, bloated, etc.
     When you are tired, the last thing you want to do is push yourself but if you start small, you can do it and still feel really good. When I was first diagnosed, I had problems working a simple 8 hour day and now 8 hours is no sweat - so to speak. Scott Brown. Scott.Brown@sunlife.com

Jon, October 23, 2007 - Hi everyone, to Sue K, not all my meds changes at that time were due to kidney failure. For my failing kidneys, I was taken off my ACE inhibitor and my diuretic. I radically reduced my sodium intake, and switched to drinking nothing but water. I also reduced the amount of food that I was eating by 50%. My kidney function is still not normal, but my doctors and I have agreed upon a level of function that we now consider "baseline" for me, and that's what we shoot for.
     Our puppy, Mad Captain Jack, is fat and sassy just like Jack. ;-) Here are some pictures from the middle of August, a couple of months ago. Now nearing the end of October, he is about 9 months old and about 110 pounds, and also way too smart for me (as Jack would no doubt say is also like him). <g> if I told you just how smart he really is, no one would believe me, literally. See the pictures at www.chfpatients.com/jack/jack-08-16-07.jpg, www.chfpatients.com/jack/jack-08-16-07a.jpg, www.chfpatients.com/jack/jack-08-19-07.jpg, www.chfpatients.com/jack/jack-08-19-07b.jpg, and www.chfpatients.com/jack/jack-08-19-07c.jpg.
     Just as a general note, I honestly believe that daily weight lifting is one of the things that has kept me going despite all my various illnesses. I also take supplements, including creatine monohydrate and L-arginine, as well as calcium and vitamin D because of prednisone intake. The arginine helps boost the immune system, and creatinine helps build muscle mass and is also good for heart failure. Unfortunately, the therapies used for rheumatoid arthritis are often bad for people with heart failure, so my doctors and I are always striking a balance. So it goes.
     I am going to continue struggling to do this heart forum for several weeks while I try to catch up on my 140 still-backlogged e-mails. Please be patient. Jon.

Ann L, October 26, 2007 - Hi everyone, What has been the experience in switching to the generic of Coreg? I am waiting for my end-of-the-month visit with my cardiologist. I tend to favor generics and love Wal-mart's price of 4 dollars. Yet, I remember the specialist at Johns Hopkins telling me he wanted me to go with the brand name because it contained some small additive he wanted me to have. I can't remember what that was. annlau@davtv.com

Carol, October 27, 2007 - Hi all, I am so glad to read everyone's posts. I was interested to read posts about depression. My CHF was diagnosed in January of this year. I had been suffering from it for at least a couple of years unknown to me. I ended up in the emergency room (I thought I had terrible allergies or asthma) and had an EF of 12%. I am now up to 40% with meds. My cardiomyopathy has an unknown cause as I have no blockages.
     I have had depression and anxiety most of my life (from puberty) and have been thankfully treated for almost 15 years (I'm 61 now). My treatment has been life saving, but I have wondered if my life stresses could have been a factor in my condition. My 35 year old daughter is bipolar and also has cardiomyopathy. I also have other family members to worry about.
     Even though I have my ups and downs, I find that it helps me a great deal to keep involved with my family and interested in what is going on in the world: working on my laptop, doing genealogy, playing solitare and mahjong, going for a few days at a time in our RV with my husband and 2 small dogs. I can't exercise much because I have severe arthritis in my knees and am just waiting to be allowed to have new knee joints. My savior has been to keep busy. Finding a hobby, taking care of pets, anything to keep your brain working keeps your mind off your illnesses and focused on learning new things. I even considered learning Spanish, but I seem to have my plate full at this time.
     At my age, being involved also may help stave off dementia or Alzheimer's disease. Sometimes I can't believe how busy I am. I am currently fighting a flea infestation. These things may seem silly, but I am so busy that I need to live to 100 to get everything done that I'd like to do. Well, for what it's worth, that's what I do to keep going.
     Another weird thing I do is watch the weather channel late at night if I have insomnia and don't want to think about my condition. This helps me a lot. Depression is a terrible thing and even worse when your health is poor. You can keep busy even if you have to be in your recliner a lot like I am because of my knees. Good luck to everyone who is coping. hollidaycj@cox.net

Jon, October 27, 2007 - Hello everyone, I have finally gotten my bio updated to reflect my current meds. I have also updated my weights workout. I appreciate everyone's patience. If anyone has noticed major progress in the field of heart failure, whether it be meds, diagnosis, or other treatments, please feel free to e-mail me so I can check it out. Until I get caught up on my e-mail, my research is going to be limited because of time constraints. Thank you all, Jon.

Janet W, October 30, 2007 - Hi Everyone, I have CHF, CM, and an ICD implant. I have had CHF for 7 years and had been doing really well with ups and downs as we all do, but I was battling along. Then I started to get terrible shortness of breath all the time so had an ICD implanted 6 months ago. I was doing well and felt fitter than I had in a long time, but now my breathing has gotten worse again and I am lightheaded all the time.
I have been on long-term prednisone and my specialist wanted me to put them up to see if that helps but it hasn't as of yet. I am starting to think that my heart is as tired as I am. I was told that I would need a heart transplant in the near future - maybe that is closer than I thought? I really just needed to express my feelings to people who understand what this all feels like. Thank you for listening, Jan. janwill24@optusnet.com.au

Lowell P, October 30, 2007 - Hi everyone, I tried Coreg at 25mg twice a day a couple of years ago and I became very tired and had difficulty walking any distance like more than a block. I switched to metropolol in the AM and Avapro in the PM. This helped the fatigue. My blood pressure stays good at about 125 over 70 or less. However, my EF stays unchanged at about 30%.
I think I should have given my body more time to adjust to Coreg. I read reports from folks with much improved EF with Coreg. My PCP doesn't want to change to Coreg. I have been to a cardiologist here too and I simply don't like him, period! He did not want to change to Coreg either. Maybe I should be content with the 30% EF and count my blessings. Anyone care to comment? I'd like some opinions. Lowell. Lpepper3m@3aol.com

Richard A's October 30 reply to Anne L's October 27, 2007 - Hi Ann, I sent the following to my cardiologist, but he has not yet found the answer and so has suggested that I stick with the branded version for now.
"Dear Dr., I don't want to pick nits but thought that it might be critically important that I check with you again. In answer to my earlier question about generic carvedilol, you had said, 'Carvedilol generic is fine.' So, when I told my pharmacy that I'd accept generic, the brand I got was from 'Doctor Reddys laboratories LTD' - one of 14 manufacturers now approved to make generic carvedilol. However, when I checked further on the web, it turns out that Doctor Reddy's version is 'carvedilol form-2 as manufactured in Andhra Pradesh, India,' and that 'Carvedilol can be isolated as two polymorphic forms, depending on the method of preparation. The two polymorphic forms are designated Form I and Form II.' I do not know what form the original Coreg (from Smith-Kline Beecham) is. So of course, my question is can I (we) trust this generic to provide the proven benefits of the original, or should I insist on good old Coreg? I surely would appreciate your thoughts and advice."
Does any one out there know anything about this twist? Thanks! PS. I also told my Dr, "After all, I probably can't afford to play blackjack with Mother Nature (especially while also taking an ACE inhibitor)." richard.adamo@sri.com

Ann D's October 30 reply to Jon's October 27, 2007 - Hi Jon, It's great to see you back and I think that you're doing great with the posts for just learning new software. To everyone, learning constantly also helps with depression, which I suffer from also. The depression was made worse in 1999 when my only child died at the age of 23 from a severe asthma attack. I also have asthma and emphysema, so there are times I get really scared, but then I find something, anything, to do to keep my mind busy. I found that if I do that, I can't be scared or depressed. it seems that my brain really can't concentrate on two things at the same time.
     I understand that some depression is a chemical imbalance in the brain, having studied psychology in college, but being busy and thinking or learning, about anything, still helps. nyway, I have not noticed a difference in my depression with taking any of the heart meds so I guess my PCP finally got the right medication for me. There are so many meds out there and dosages that it takes patience and perserverance.
     The only problem I have had with heart meds is that several months ago I had to stop taking lisinopril because it was affecting my potassium and kidneys. I was told that this only happens to about 2% of CHF patients but was later told that was because of the combination of drugs I was taking. My advice is to keep busy with different things, whether they're physical or not, and I believe it will help you feel better and live longer. I read, do computer things, lots of crafts, and online jigsaw puzzles. I do the online kind because I have 3 cats that would just love to steal the pieces from a real one.
     By the way Jon, love the pictures of Mad Jack. I love Rotties anyway. I would really love to hear some of your stories about how smart he is when you get the chance. I hope everyone starts feeling better and hanging in there. Love to all. adicocco@bellsouth.net

Karen K's November 5 reply to Richard A's November 30, 2007 - Hello, Just thought I'd add my 2 cents regarding changing from Coreg to its generic, carvedilol. I'm on my second month of the generic. I don't know who manufactures it. My guess is the pharmacy would tell me if I asked. When I mentioned the generic to my doctor, the only stipulation made was that I not take the extended-release carvedilol. I have not noticed any real difference since I went generic. Karen. karenk@machlink.com

Jon's November 5 reply to Eileen H's November 5, 2007 - Hello Eileen, The MIBI test is a stress test, and the MIBI stands for "2-methoxy isobutyl isonitrile," which is a chemical used to stress the heart. A "gated" test indicates a type of test called a MUGA, but with the chemical injected to give the same result as if you had exercised without actually exercising. You can read more about this test at www.CHFpatients.com/tests/muga.htm.
The movie camera usually takes pictures of your heart at rest first, and then the chemical is injected to simulate exercise, after which more pictures are taken. You don't say whether your EF was measured at rest or during the exercise portion of the test. The EF should rise during exercise or when stressed by the chemical. If done at rest, this test is usually very accurate at establishing EF. Jon.

Betsy R's November 8 reply to Betsy W's October 19, 2007 - Hi, I'm another Betsy (Betsy R) and my birthday is the day you posted your question (October 18). I've just been diagnosed with CHF today. I was previously diagnosed with type 2 diabetes (insulin resistance also), severe obstructive sleep apnea, GERD, kidney stones, chronic sinusitis, osteoarthritis, high blood pressure and cholesterol, complete hysterectomy (told me before surgery that it was ovarian cysts and-or endometriosis but after surgery that it was uterine tumors). I have constant nausea too.
     My health changes hit me in my early 40 s too, with sudden weight gain without diet or exercise change (most gain in abdomen). People kept asking when my baby was due! I have been trying to find out what was causing my sudden weight gain and abdominal swelling for 10 years. Doctors just kept telling me to lose weight (although I am bony everywhere else) and get better control of my diabetes. Finally, my chiropractor told me I might be lactose intolerant and cutting out milk did help some with the amdominal swelling. By the way, almond milk is the best tasting milk substitute.
     Last week my ankles and feet suddenly swelled up and I got shortness of breath that was much worse when lying down. Those two symptoms in combination with diabetes were what got the doctor to do tests for CHF. She has also suggested that part of my problem may be food allergies. I had already stopped drinking milk because it bloated me, but she said to stop cheese also and reduce my salt intake.
     Are you being treated for the sleep apnea? When they put me on a CPAP at night, it helped some with day time fatigue and shortness of breath. It also helped some with headaches and concentration, especially short-term memory problems. bar@brws.com

Eileen H's November 8 reply to Jon's November 5, 2007 - Hi Jon, I was diagnosed with HF due to an unknown cardiomyopathy the day after Memorial day. Since then, I have had 3 echoes, the last done the week of Labor Day - all indicating an EF of 10 to 15%. I had an MIBI on 10 to 15 with pictures at rest, treadmill, then more pictures.
The report my doctor received from my cardiologist said the following, "The MIBI did not show any evidence of ischemia. Of note, the gated portion suggested an EF of 55% which is a bit surprising. Another echo in the next few months will likely be needed to sort this out." Also, he said, "Sshe did exercise for us today and she reached a workload of 7.7 METs, her VO2 was 17.1 mL/kg/min, reflecting about 125% of her age, gender, and size predicted maximum."
Any comments, thoughts, or ideas? This is very confusing and I don't know whether to feel hopeful or not! Thanks for your input, and this great site! Eileen. 2danes4boo@comcast.net

Jon's November 8 reply to Eileen H's November 8, 2007 - Hello Eileen, This is very confusing for one reason. I must assume that what the doctor refers to as being "gated" results indicate EF during exercise. If this is the case, it is very good that your EF rises greatly during exercise. Your Vo2max is low, since a reading of 14 or lower qualifies for heart transplant, and a more usual reading for a healthy middle-aged woman would be about 30. On the plus side, exercise alone will definitely increase Vo2max results. You just have to stick with it. Be sure to clear any exercise plan with your doctor first. Jon.

Renee R, November 8, 2007 - Hi all, My husband has dilated cardiomyopathy. He is 50 years old and was diagnosed this past June. Last week he had a St. Jude's ICD put in Tuesday. On Wednesday after being released from the hospital, the lower lead penetrated the heart wall, causing constant extreme pain. He was rushed back and they re-did the surgery and moved the lead. He is really wiped out and upset about the entire thing - double surgeries, etc.
Has anyone else ever had this happen? Or do you know of anyone that has had one of the leads penetrate the heart and what the outcome is later on? Any thoughts or insight you may have would be most helpful. Thank you. Renee. drinwi@charter.net

Debra S, November 8, 2007 - Hi Jon, I am finding it impossible to send messages to anyone through the board using their e-mail addresses. Have you heard this from anyone else? It goes to some strange program. Debra. r_steinberg@sbcglobal.net

Jon's note:Hi Debra, This is the first time I've heard of this. Has anyone else had this problem?

Peter S' November 8 reply to Richard A's October 30, 2007 - Hi, About ten days ago, my refill for Coreg (25mg twice a day) from my pharmacy plan came in as the generic version. I didn't think much of it since I have always assumed a generic was pretty much the same as the original and the FDA had to pass on it, etc. However, whether by sheer coincidence or not, my daily pulse reading suddenly went from a steady 60 to 65 to a somewhat erratic 50 to 54, that is with some pauses and PVCs. My blood pressure went down to 91 over 78 from a usual 107 over 68, although has recovered a bit. My exercise tolerance is diminished.
Maybe something else is at work, but starting the generic Coreg is the only variable I can think of in my daily life since the begining of my new symptoms. I have mild to moderate pulmonary hypertension, CAD, and an EF of 45%. A lot of people are being switched to the generic version of Coreg. It would be interesting to learn more. PeterSperl@cs.com

Jon, November 14, 2007 - Hello everyone, Well it seems I found one drawback to speech software. <g> If your voice gets really hoarse from sinus congestion your software doesn't understand you very well. <lol> But here I am again, unfortunately once again backlogged on my e-mail. However, I will get caught up so don't be afraid to post.Jon.

Tony M, November 14, 2007 - Hi Jon, I am glad to see you're back. I found myself with viral cardiomyopathy late in 2000. Two months later an all-terrain vehicle crashed on top of me causing me to have multiple surgeries on my neck (which is now fully fused with a rod screwed into all 7 neck discs), both shoulders, elbow and hand. I also had a colon infection and had 2 feet of colon removed. I was in pain and not healing so I went to Pittsburgh for a stem cell study in January of 2006 and was found to have sleep apnea to the nth degree so that now my sleep doc confides that I was about to die in my sleep when he tested me.
I now have almost normal ejection fraction instead of hovering in the low 20s to 30s as during the last 5 years. I returned to work at a geotechnical lab and work out with weights again. I take all the supplements Jon recommends as well as others including creatine, fish oil high in DHA, EPA, C0Q-10, L-Carnitine, and ribose. I also read Dr.Sinatra's new book about supplements and the newly found potential benefits of Ribose. I recommend this highly for those with fatigue and heart failure.
I hope this inspires others. I fired bad doctors, hired good doctors, read this site and followed my instincts in some cases. For now I live life as a new man and get up running while I can and living a strict life style which for me has helped. I advocate a sleep study to all those with heart failure even if you don't think you have it. I still have wobbly legs on some days but don't complain about it now that I have healed from the surgeries and have normal oxygen levels. Tony M. ynotmyrick@yahoo.com

Marty C's November 14 reply to Debra S' November 8, 2007 - Hi Debra, I've had difficulty using the e-mail addresses people post here on the site as well. The problem is that many people have very effective spam filters that only allow e-mail from people they've designated as "safe."
Everyone who posts here should take this into consideration if they want to hear from others with good information. Having a spam folder instead of setting your e-mail up to reject messages from unknown senders allows you to periodically check those messages instead of blindly refusing them. I hope this helps. padre45@aol.com

Jon's note: For what it's worth, I spend a lot of time composing replies to e-mail messages. When one bounces back because of such a spam setting, I refuse to reply further, and am very irritated that someone has asked me for information and then set an obstacle in the way of receiving it. It is a waste of my time and effort. I use Outlook and find that a combination of junk e-mail settings and the rules Wizard eliminates 90% of my spam.

Roger H, November 14, 2007 - Hi Jon and all, It is great having you back again. Back in March or so, I started with chelation in a study group. Next week will be the 30th IV treatment. In this trial, we will not know if we got the real thing or a placebo till the end of the study, which may be another year or so!
I've retired and gained about 5 lbs, even closely watching what I eat. I'm still at 300mg sodium intake daily and watch my carb intake, being diabetic, walking at least 2 miles per day and working out on the total gym but I am still having trouble with my weight! I'm with the Veterans Administration and they switched me to all generic, from my Cozaar, Coreg, and all the rest. I've been seen that a lot of you are cold after taking Coreg - me too. Now with the colder weather, I'm cold most of the time! Roger. rkharmony@bright.net

Terry H's November 14 reply to Peter S' November 8, 2007 - Hi, Since my reply, my beautiful wife tells me I have actually been on generic Coreg from the start. I started getting it from Canada and just switched to Wal-mart. Sorry, I didn't look that closely before. She takes such good care of me, I'm a lucky guy. haystks@diamondnet.us

Mark M's November 14 reply to Jon's October 27, 2007 - Hello Jon, A new paper just came out in NEJM on CRT for heart failure. There isn't anything revolutionary about it, but it's worth noting. I'll send you a copy, if I can figure out how to get you an attachment. Mark. moeglein@qualcomm.com

Jon's note: You can send attachments to me at the following e-mail address if you put the proper symbol in place of the word at and leave out the spaces - theform at CHF patients.com.

Robin, November 15, 2007 - Hello, My father went to the doctor last week because he could not breathe and got out of breath very easily. The doctor told him it's probably something coming on and gave him an inhaler. He went back today because it's not working. His doctor put him on a heart pill, potassium and a water pill. He wants him to rest for 48 hours in bed and if he is no better he will put him in the hospital. He thinks he has congestive heart failure. I am so worried about him and can't stand the sick worried feeling I have.
Is this going to kill him? Everyone is trying to keep me calm and is saying it will be fine, but I did some research and I don't like what I see. m2jm05@aol.com

Karen K's November 15 reply to Marty C's November 14, 2007 - Hello Everyone, I am one of the people Debra had problems accessing through the site. I don't know why but I do not have spam filters that would have caused her message to not reach me. I signed on just for the heck of it and tried sending a message to Debra from the site and had no problem. Karen K. karenk@machlink.com

Tony M, November 16, 2007 - Hello Jon, I am so glad you are back as I stated before. I just read Amy Silverstein's book "A Sick Girl." It's a very motivational book and informative to CHFers and to their family members. I read the book in 3 days it was so good.
This tough, sweet girl at first fought doctors, fought the medical procedures and finally relented to have a heart transplant 19 years ago at the age of 23, while enrolled in law school. She went on to finish law school and get her license, get married to her boyfriend who was there when she got sick the first time and realized she had a grossly enlarged heart. She details how even today she still has to wear a mask of sorts to hide the bad days so she can remain "normal" to her friends and family. It's compelling and motivating.
I realized my mindset to fight back to get well by looking for better doctors and exercise (she runs 4 miles daily) was similar to hers while reading the book. She is a very good writer and I think this a motivational must-read to all the forum readers of Jon's web site. Tony. ynotmyrick@yahoo.com

Richard A, November 16, 2007 - Hi Everybody, Thanks for all your comments. I'm actually "lucky" in that my corporate HMO insurance co-pays are basically 20 dollars per month for Coreg and 10 dollars per month for generics, so the difference is not all that great for now. I take 37.5 mg twice a day.
My cardiologist has said that the method by which Coreg reduces blood pressure is pretty well understood and pretty immediately noticeable and measurable. So, if you feel the same and get the same short-term results from generic carvedilol, you are probably okay in terms of blood pressure control. It is the reasons for the long-term benefits on cardiomyopathy (increased EF, reduced heart size, and ultimately increased survival rates) that are less well understood but that have been demonstrated over time for good old Coreg. The generics, if they are slightly different forms of carvedilol, may be just as effective (or maybe even better) but we don't and can't know that for sure yet.
That was the reason for my inquiry and why I'm probably going to stick with the branded version for now. Good luck to us all, and thank you, Jon, for all you do. richard.adamo@sri.com

Kate W, November 16, 2007 - Hello All, Has anyone gotten without a beta-blocker? I have had heart failure for 12 years up and down with EF from 10% to 35%. For several years I took a full dose of Toprol-XL. I was so sedated and tired I could not work and I gained 75 pounds. My husband left, so I had to work and now I take Coreg and usually take 3 to 6 mg or so twice a day. Everytime I go up in dose I can't function. I know it caused my weight gain due to high insulin. I do know about all the good stuff it supposedly does.
My question is, has anyone gotten a lot better without a beta-blocker, and while all the other right things? I forgot to take my meds yesterday am and went to work and felt so much better, like a normal person. Today I feel tired again. I wonder if I stopped taking it, could I feel better, was able to exercise and lose weight, and my blood sugar comes down, if in the end I would be better off. My BNP is normal. I also take 50mg losartan. I have the kind of doctor that just shrugs and says he doesn't know whenever I bring this up. kawh@wavecable.com

Jon's December 6 reply to Kate W's November 16, 2007 - Hi Kate, At a daily dose of three to 6 mg twice a day, it may not hurt you to stop taking the beta-blocker. Very generally speaking, a dose of 12.5mg twice a day is the low end of the effective dose range for Coreg. Some people genuinely cannot tolerate beta-blockers, while it takes many others a long time to get used to them. One of the things you need to beware of is an increased heart rate if you stop taking a beta-blocker. If your heart rate increases after stopping the drug, you need to see your doctor immediately.
The other obvious suggestion is to get yourself a new doctor as soon as possible. If you brought this up to him several times before and he continues to say, "I don't know" that means that he is not making any effort to find out - and that makes him the wrong doctor for anyone with heart failure. Jon.

William J's November 18 reply to Tony M's November 14, 2007 - Hi, I was very much interested in Tony M's post, particularly the note about his participation in a stem cell clinical study in Pittsburgh. Tony mentions that as a result of that clinical study he has had a major heart recovery. I am very much interested in being included in a stem cell study and have found the process quite difficult. The protocol or "inclusion and exclusion" criteria can be difficult to overcome. In addition, many studies want you either to be totally healthy other than your CHF or have inclusive health problems such as angina, etc,..., which I do not have.
I understand that the studies are not so much to help the individual participating in the study but to reach conclusions to help the many after the study. I also understand that these studies are mostly funded by manufacturers or drug companies looking for positive facts. Some studies show great promise and others can be disastrous. Stem cell studies cover many areas and I wonder if Tony would share his experience in getting into the study with us. Budjoy4@aol.com

Jon's note: I could be wrong, but I believe that Tony was not actually in stem cell trial. As I remember it, it was the testing to see if he qualified for the trial that brought to light problems for which he was treated, and those treatments helped him. Tony, please correct me if I'm wrong.

Christine S, November 19, 2007 - Hello, Could someone please help me? My daughter is 30 years old. She was diagnosed with DCM in May of 2006 with an EF of 39%. She takes 6 meds including Coreg. She has not been to a doctor in a year but does take her meds.
What things can change in a year that she needs to be under a doctor's care? I know she needs to but she won't go. She says she is tired all the time more now. She is depressed and is single mom with 3 and 6 year olds. How can she rest with 2 kids? Would she be eligible for a caretaker of some sort so she can rest and then maybe eat better? I am so worried and stressed, I just don't know where to turn anymore. Any support would be so appreciated. I thank you, Christine-Sue. Oh, also, how long is it possible for someone to be in denial? Csue7782@aol.com

Peter S' November 20 reply to Terry H's November 14, 2007 - Hi Terry, Thanks for your comments about being okay with generic Coreg. My initial concern (my post of November 8, 2007) I now believe was overdone and I think other factors were at work. Nevertheless, I will be interested to hear how others of Jon's audience may react as their phramacy plans gradually moving them out of the brand name. PeterSperl@cs.com

Jennifer M, November 21, 2007 - Hi, I posted here last year when my fiancee was diagnosed with dilated cardiomyopathy. He was also diagnosed with stage 3 liver disease 08/15/2007 associated with his Hepatitis C and long suffering of alcoholism. I found him dead on our living room couch at 3:30 AM 10/07/2007. The preliminary autopsy showed congestive heart failure as cause of death. Toxicology is suggesting but not conclusive yet, morphine toxicity. Yet, he knew. He was telling me for the past month or so that if he passed away, to get placement of his children. He died one day before his 36th birthday and on his birthday I got placement!
     In September, we drove past the cemetary and he blurted out, "I am going to be there soon." He had recently asked me what kind of funeral I was going to plan for him. He told his best friend 3 weeks earlier what he wanted his children to have of his possessions. I believe the angels come down and prepare you, and I believe he was prepared. I don't fully believe you are prepared if it is accidental. So, I think congestive heart failure was primarily responsible.
     He was complaining for 2 months of weight gain, trouble starting the flow of urine, vomiting, shortness of breath and "just generally not feeling well." All they did was keep upping his diuretics. He was in doctor's office the Monday before he passed (the 1st). Clinic notes stated his heart rate was 100 (meds typically kept him at 82 or so) and stated he had tachycardia. The notes also stated "the weight seems to have come on quite rapidly" and "the weight gain is concernng" however "no clinical evidence of congestive heart failure." His EF had doubled in August and was at 33% from originally 15 to 18%. In August they also said his heart had shrunk to normal size. An X-ray on 09/20/2007 stated "heart normal in size." How then could the autopsy show "heart quite enlargened?" This doesn't make any sense? Does anyone suspect this was congestive heart failure that was undiagnosed, dismissed or untreated?
     They were concerned he was slipping into painkiller addicition as a substitute for alcohol, and he even admitted it to me, but also said he really was in pain and didn't feel right. I am thinking they maybe dismissed him because they thought he just wanted painkillers and didn't also look at actual physical obvious symptoms. I also think for him the painkillers were both to treat true pain and discmfort but also becoming an addiction. He had just been prescribed the morphine that Thursday (3 days earlier) and had previously been on oxycodone. I now find out how dangerous morphine is to someone with a weak heart because it weakens the heart. Why on earth would they prescribe that to him? Also to someone who they were concerned about addiction with? His primary physcian had first told pain clinic not to prescribe anything, then said okay with parameters. Then clinic walked him out with 150 morphine pills! None of this makes any sense! jennzoey@charter.net

Jon's note: I am very sorry for your loss. Morphine is often used in end-stage congestive heart failure because it is both a venodilator that reduces load on the heart and an effective way to combat anxiety.

Barbara R, November 26, 2007 - Hi, I went to see my PCP because I had been feeling fatigued. I had been experiencing heart palpitations and shortness of breath, but I really thought it was more of a consequence of peri-menopause and smoking. The PCP did a blood test that he said was specific for heart failure and it came back slightly elevated. I'm not sure what the test was (I am assuming it was BNP) but my score was 3.41. I was hoping someone could explain this score for me. I am 42, female and live in Canada. I am scheduled for an echocardiogram in a couple of days. Thanks, Barb. mabajara@rogers.com

Lori K, November 26, 2007 - Hi Jon, I have not posted in about a year but wanted to get feedback on a few things. I have had CM for 6-1/2 years and have asthma and adrenal insufficiency. I take Altace, Zebeta, Singulair, Cortef, Nexium, and Flovent. I take torsemide as needed. The last few months I have had lots of nausea, belching, dizziness and more SOB this past week. I have not gained weight. Does this sound like worsening CHF?
I get an echo tomorrow, so that will help me know more. I also really wondered if anyone has read the book "Sick Girl" by Amy Silverstein, a 19 year out heart transplant patient? Transplant was my hopeful final step if needed. She seems like she has hated every day of it. I wondered if she would be more accepting if she had been sick longer with CM? Anyhow, it is great to see you are still doing your thing. Jon, this site is a Godsend. Lori. thegoof86d@aol.com

Karen R, December 2, 2007 - Hello All, My husband was just diagnosed Friday with CHF and I am completely freaked. He is 52 and an avid outdoorsmen. This has hit me like a ton of bricks because he promotes health and I cannot believe he has this. I have no idea what we are in store for in the future. He bikes, skis, chops wood, hikes. Does this all stop now? I am having a really hard time getting my head wrapped around the fact that he has this disease. Can anyone tell me what your experience has been with this? karenmregan@prodigy.net

Jon, December 5, 2007 - Hello Everyone, I'd like to start this with a quote from Jon Ashcroft, "failure is not fatal unless you quit; getting knocked down is not embarrassing unless you allow it to keep you down." I seem to keep getting knocked down a lot lately, but I have no intention of letting it keep me down for good. Bear with me and let's see how it goes. Jon.

Jon, January 22, 2008 - Hello Everyone, Just a note to say I'm still here, just not very functional. It's certain now that another underlying condition is the root of most of my inflammatory problems and I have 3 doc appointments this week to work on finding out what it is. Until I am certain I can consistently keep up with posts, the form is down. I am sorry - but I do plan on being back. Thank you all for your patience. 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. No information on this page should be used by any person to affect their treatment or situation in any way. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.