The paperwork never ends The Archives
April 1-15, 2005 Archive Index CHFpatients.com

Sabrina B 4-1     update - husband had a small stroke
 
Becky S' 4-1 reply to Jacky B's 3-31     statistics and our experience
 
Karen K's 4-1 reply to Jacky B's 3-31     statistics and my experience
 
Marty T's 4-1 reply to Jennifer G's 3-31     Coreg
 
El R's 4-1 reply to Jennifer G's 3-31     heart hurting, Coreg
 
Becky S' 4-1 reply to Beverly H's 3-28     Oklahoma specialists
 
Norma L's 4-1 reply to Cathy D's 3-30     families who don't understand CHF
 
El R 4-1     should I try this?
 
Roger H 4-2     Coreg, online resources
 
Roger H's 4-2 reply to Jacky's 3-31     stats, how you feel and more
 
Cathy D's reply to Norma L's 4-1     low sodium eating and outings
 
Bill Owens 4-2     seek dialysis experiences
 
Susan D's 4-2 reply to Jacky B's 3-31     stats, hospice care and more
 
Paul G 4-2     seek Xanax experiences
 
Tom S 4-2     seek a grip on my personal prognosis
 
Sandy N's 4-3 reply to Tom S' 4-2     living with heart failure
 
Rosemary B 4-3     thank you for the web site
 
Jon's 4-3 reply to Rosemary B's 4-3     thank you for writing
 
Terry L 4-3     seek postal address for making a donation
 
Jon's 4-3 reply to Terry L's 4-3     our snail mail address for donating
 
James N 4-3     seek pacemaker/transformer conflict info
 
Jon's 4-3 reply to James N's 4-3     resources
 
Pam S' 4-3 reply to Paul G's 4-2     meds for insomnia & depression
 
Jon 4-4     credit card donations should work now
 
Lowell P's 4-4 reply to James' 4-3     electrical transformers and implanted devices
 
Becky S 4-4     seek CRT pacer/ICD information
 
Jon's 4-4 reply to Becky S' 4-4     implanted devices information
 
Wayne R's 4-4 reply to Paul G's 4-2     sleep is critical
 
Giorg 4-4     heart rate during exercise question
 
Jon's 4-4 reply to Giorg's 4-4     exercise heart rate on beta-blockers
 
Jon 4-4     credit card donations problem
 
Pam S' 4-5 reply to Jon's 4-4     heart rate and exercise
 
Sandy N's 4-5 reply to James N's 4-3     pacemakers and transformers
 
Doreen K 4-5     blood cholesterol levels
 
Jon's 4-5 reply to Doreen K's 4-5     blood cholesterol levels
 
Pat Y 4-5     easy donation reminder
 
Jon's 4-5 reply to Pat Y's 4-5     letters of receipt at year end
 
Tom S' 4-5 reply to Sandy N's 4-3     taking my time & enjoying it
 
Mary Anne 4-5     seek experiences & info on arginine
 
Bill H's 4-5 reply to Giorg's 4-4     heart rate and exercise experience
 
Becky S' 4-5 reply to Jon's 4-4     more on hubby and question
 
Jon's 4-5 reply to Becky S' 4-5     Jon's improvement heart-wise & more
 
Mike C's 4-5 reply to Paul G's 4-2     my Xanax withdrawal experience
 
James N's 4-5 reply to Becky S' 4-4     biventricular pacemaker experience
 
Barb N's 4-5 reply to Bill Owens' 4-2     diabetes drugs and heart failure
 
Paul G 4-5     thanks to all who replied
 
Patrick 4-6     cheap source for ACE inhibitor
 
Vicki J 4-6     seeking Parkinsons's Disease web site
 
Becky's 4-6 reply to James N's 4-5     your post was very encouraging
 
Becky's 4-6 reply to Jon's 4-5     my husband is at least feeling better
 
Giorg 4-6     supplement use
 
Karen K's 4-6 reply to Paul G's 4-5     Xanax experience and more
 
Michael H 4-6     does anyone have foot pain?
 
Sharon L 4-6     does anyone take coversyl (perindopril)?
 
James N 4-6     CRT pacemaker experience
 
James N 4-6     pacemakers and electrical transformers
 
Becky's 4-7 reply to James N's 4-6     that's excellent!
 
Susan D 4-7     what about NSAIDs?
 
Julie G 4-8     seek best brand of CoQ10
 
Lowell P 4-8     how do I reduce BNP level?
 
Jon's 4-8 reply to Lowell P's 4-8     BNP level
 
Clara D 4-9     ICD questions
 
Jon's 4-9 reply to Clara D's 4-9     need for an ICD
 
Diane K 4-10     seek similar serious heart experiences
 
Peter S' 4-10 reply to Clara D's 4-9     consider risks versus benefits
 
Bill B 4-10     seek New Jersey heart failure doc
 
Laura S 4-11     where do you get heart failure swelling?
 
Jason M's 4-11 reply to Bill B's 4-10     northern New Jersey heart failure doctors
 
Candace W 4-11     seek Florida heart failure doctor
 
Oliver E 4-11     has anyone gotten a rash from ACE inhibitors?
 
Norma's 4-11 reply to Susan D's 4-7     taking pain relievers and more
 
Jon 4-11     credit card donations
 
Jennifer G 4-12     thank you all, update
 
Shellie W 4-12     what will happen to my dad?
 
Jon's 4-12 reply to Shellie W's 4-12     edema, mental function & more
 
Norma L 4-12     why am I more short of breath now?
 
Jon's 4-12 reply to Norma L's 4-12     some possibilities
 
El R 4-12     update, question about pulmonary hypertension
 
Bill H's 4-12 reply to Oliver E's 4-11     I get a rash also
 
Bill H's 4-12 reply to Laura S' 4-11     edema in places other than legs
 
Barb N's 4-12 reply to Oliver E's 4-11     ACE inhibitor side effects
 
Sandy N's 4-12 reply to Candace's 4-11     Florida CHF docs
 
Sandy N's 4-12 reply to Laura's 4-11     swelling in the abdomen
 
Sandy N's 4-12 reply to Julie G's 4-8     CoQ10
 
Sandy N's 4-12 reply to Becky's 4-6     being able to breathe
 
Sandy N's 4-12 reply to Clara D's 4-9     device implant experience
 
Clara D 4-14     ICD decision and some good news
 
Donna H 4-14     seek Health Buddy experiences
 
Shellie W's 4-14 reply to Jon's 4-12     update on my dad
 
Mike F 4-14     seek info on different pressures in arms
 
Richard B 4-14     seek biventricular pacemaker experiences
 
Susan A 4-14     seek ideas on giving employer medical info
 
Peter S' 4-14 reply to Sandy N's 4-12     ICDs, doctors, statistics
 
Mary Anne M 4-14     blood pressure, implanted device questions
 
John E 4-14     do I really have CHF or not?
 
Paul G 4-14     update and seek Mirtazapine experiences
 
Lori K's 4-14 reply to Julie G's 4-8     CoQ10
 
Lori K 4-14     seek experiences switching beta-blockers
 
Marsha H 4-14     how low a blood pressure means meds switch
 


Sabrina B, April 1, 2005 - Hi Jon, I posted several days ago about my husband's CHF and elevated blood pressure. We went back to the acute care clinic Monday and still really didn't do anything for blood pressure other than tell that it may take a couple of days to adjust to the increased meds, start taking the Lasix every day as may help with blood pressure (not because of fluid retention), and gave nitro patches to use in case BP went 180 or above. To answer some of your questions, he keeps an irregular heart beat but they say okay if rate is controlled and it is, trying to do low sodium as much as possible, and supplements he takes are magnesium/calcium and CoQ10 at 60mg.
     As far as the clinic - nope, is nurse practitioner run and really only has one doc. I wonder if clinic is just for general education, check lab levels, and have the nurse practitioner answer questions to keep patients out of the doc's hair. Well, we went to our local emergency room this morning - my husband ended up having a small stroke. I am so majorly aggravated with the VA - I feel like I did everything possible to get someone to pay attention to my husband's blood pressure and felt that it was a sign something was wrong, but no one seemed to want to do anything other than cover up a symptom. Thanks, Sabrina. lavenderbliss@myfam.com


Becky S' April 1 reply to Jacky B's March 31, 2005 - Hello Jacky, Your post brought back so many memories, from 8-1/2 years ago when my husband was diagnosed with an EF of 15 to 17%. My husband, who'd always been so fitness-minded and athletic, said, "What do I need to do?" The response was "Make a will." That was the end of that visit.
     The next visit, two weeks later, he shared that five-year statistic with us. Wow! We were floored. I discovered this site and read every post in The Archives, I believe. I received hope here. That's what I want to offer you. Granted, we're not dealing with something mild here, but every day is another day. Enjoy it as much as you can and know that you may have thousands more just like it!
     Like Jon says, there are so many variables and every case is different. For the last 8 years my husband has had lots more energy than I do. He's been able to work part-time. He enjoys life. Really, no person knows when his or her last day will come, you're still in that category but I personally would discard that 5-year statistic completely. We lost sleep and joy we shouldn't have lost just over that statistic! RebeccaG99@aol.com


Karen K's April 1 reply to Jacky B's March 31, 2005 - Hi Jacky, It's highly likely you will receive many responses to your post. Just add me to the list. I was diagnosed with CHF in 1991 with very few symptoms. My internist referred me to a cardiologist who scheduled a heart biopsy and cardiac catheterization. When the tests were completed, my (ex)husband asked about my prognosis. He was told I would start going downhill within a year and require a heart transplant within 5 years.
     Do the math! It's now 2005. I see a heart failure specialist every 6 months. I am pretty much symptom free. I do watch my salt intake and diet. I have one stay in the hospital since being diagnosed and that was for pulmonary edema, which I assume is associated with the heart failure. Other than that, I very rarely retain fluids and my weight stays stable. I take it every night and again in the morning. Statistics are just that - statistics! Based on?
     I can't believe a nurse would tell you Coreg is not recommended for heart failure. I found out about Coreg on Jon's site and once it had been approved by the FDA for treating heart failure I armed myself with a lot of documentation and approached my internist. I was the first person in my hometown to be put on the medication. I now go to the University of Iowa Heart Failure Clinic because of recommendations that each of us should be seen by a heart failure specialist.
     The first two years following my diagnosis I was a basket case because I allowed myself to be. I now do pretty much whatever I want and can keep up with the best of them. Take care. Karen. karenk@machlink.com


Marty T's April 1 reply to Jennifer G's March 31, 2005 - Hi, I was 43 when diagnosed with CHF and I basically felt great except for occasional PVCs. It was only the results of the echo that showed my EF under 30% (and a lousy family history!) that put me on Coreg and Altace. One month after being on Coreg, I felt like the cure was worse than the illness. I was exhausted, confused, and scared - but I think I like my doctor better than yours! He took the time to explain to me that Coreg works the same way as a governor on a motor does.
     In case you don't know what a governor does, here's an example. The go-karts at amusement parks in the US have governors on them, which limit their speed to around 18 mph. The little buggers are capable of going much faster, which I learned when I moved to Germany, (I'm in the Air Force) and took a ride at a local go-kart track. It was easy to spot my fellow Americans on the track! They were the ones all crashed into the barrier on the first curve after flooring the gas pedal just like back home. They needed governors to protect them from themselves, just like your heart does when you have cardiomyopathy.
     Unchecked, your weakened heart will wear itself out by pumping too fast as it tries to compensate for the decreased EF. By taking Coreg, you end up limiting how fast your heart will pump, and lowering your blood pressure. With an already weak pump, welcome to the world of lower horsepower! (i.e. tired, foggy thinking, memory issues, dizzy, and plenty more)
     The good part is that once we stop your heart from working as hard as it can all the time, it can rest and hopefully regain some of its former strength. Nothing is more effective at accomplishing this than Coreg. We'd all love to get where Jon is with Coreg, when the EF is recovered to the point where we can get some horsepower back by lowering the Coreg dosage. There's my shot at it, hope it helps. Blessings, Marty. marty.culleton@rs.af.mil
 
Jon's note: One comment - when I went to full-time work I worsened until I re-raised my Coreg dose, and now I have returned to class one while still working. So Coreg dose may or may not be lowered down the road for a CHFer but my horsepower is back only while on full dose.


El R's April 1 reply to Jennifer G's March 31, 2005 - Hi Jennifer, I know that my heart hurts when I am too active, and lately since I have been "in" CHF that happens often. My doctor explained to me that is is "just part of having a congested heart and not to worry." As far as feeling tired from Coreg, it may take some time for you to acclimate to the meds. My doctors refer to it as my having compensated well, meaning that I no longer feel like I will black out if I stand up too quickly and that I am able to walk around and function (somewhat) with a blood pressure of 80/60.
     It is still not possible for anyone to hear a blood pressure on me without a doppler, mine is so faint. My BNP keeps fluctuating up and down, back up again. I am at the point now where I am looking forward to the surgery in the hopes it will help me, and I just want it over with - 26 days and counting. elpiscado@aol.com


Becky S' April 1 reply to Beverly H's March 28, 2005 - Hi Beverly, we live in the Oklahoma City area. I don't even know a CHF specialist here. When we've mentioned finding one to our primary care physician and the heart specialist who've cared for my husband, etc, everyone has said, "Oh, I don't think there really is such a thing." Well, I trust Jon more than that info but for 8-1/2 years now we've just used what we have. I thank God that everything has gone well, but loving my husband as I do, I'd feel so much better if he actually had a doctor who specializes in what he has - CHF! If you discover a good specialist in Oklahoma, let us know. God bless you. RebeccaG99@aol.com


Norma L's April 1 reply to Cathy D's March 30, 2005 - Hi Cathy, You are so fortunate that your family understands where you are coming from! I went to my granddaughter's home for Easter and she had ham and all the fixings with salt! Needless to say, I ate light but still suffered for it. My family does not get the meaning of CHF! Personally I think every one should go low, or no salt. nvl@pennswoods.net


El R, April 1, 2005 - Hi everyone, I forgot to add my good news. My little miniature dachshund won her second blue ribbon last weekend in an agility trial! It was a 3-day trial, 2 runs per day. It is very disapointing not to be able to run with her. My husband had that honor. It is my hope that my surgery will help me enough that I can resume running with her. I want to know what it feels like to cross that finish line and know we did it!
     I did try on one run and it wore me out pretty badly. I am thinking that might not be a wise thing to be trying to do till they get me fixed up a bit. There is another 3-day trial the 8th, 9th,and 10th. I am wondering if it could be harmful for me to try? I am not running all out, just walking fast, breaking into a little jog at some points but it is start and stop too, as she has obstacles which allow me a few seconds to catch my breath. The whole run is under 70 seconds. Any thoughts? Do I dare try? elpiscado@aol.com


Roger H, April 2, 2005 - Hi Jon, So glad you are back! I haven't posted, but have been reading about every day. I feel I am one of the more fortunate. In June, 2001, I had my second bypass and got CHF. I was off work 4-1/2 months. I have missed one day of work since I started back. I was taking 80mg Lasix a day and as I worked the sodium level down, I'm now taking in about 300 mg sodium and haven't had to take a Lasix pill for 7 weeks now. My PCP and the cardiologist are thrilled at my results. I work out an average of 4 times a week.
     I'm also type 2 diabetic - diet and exercise - no meds for that and running in the 90s for readings. I am taking Coreg 25mg twice a day among other drugs and vitamins. I'd say Coreg is one of the best things the cardiologist did for me! The No Salt-Lowest Sodium Cookbook helped me a whole lot. Then one of the joys too was finding this web site! Thanks so much for being here! A check is on the way. rkharmony@highstream.net


Roger Hugh's April 2 reply to Jacky's March 31, 2005 - Hi Jacky, In May of 1997 (47 years old) I was diagnosed with CHF. The gereral practitioner told me of the 5 year stat, although he meant well, and had me having a heart transplant any moment. I have received excellent medical care, exercise regularly, and with the good Lord's mercy am doing quite well. I continue to work a full-time job and now can walk two miles on a treadmill in less than 28 minutes when I try - this is a big deal to me.
     In many ways, I am better off today than I was in May, 1997. I first leaned from this forum that how I feel is more important than numbers and one can throw the "stats" out the door. I have mentioned before that I have never asked for my EF result but found out it was 60 (I think it was) just recently when the doctor mentioned it in passing and how well I was doing. My faith, excellent medical care, exercise, and this forum make the difference - and the support of my wonderful family. rjdhugh@mtco.com


Cathy D's April 2 reply to Norma L's April 1, 2005 - Hi Norma, Actually, whenever we visit others I take stuff I know my hubby can eat. That way I know he will get a healthy meal and most of the time nobody even notices what he's eating. Most of our family thinks of CHF as some kind of heart attack, therefore if he "looks fine" and isn't obviously sick, there must not be any problems, right? (Not right!)
     They have no idea of the high wire act he walks with his meds and diet, and I don't expect them to accomodate him. On vacation I know I will be cooking most of the meals, and that's okay. Our families are pretty amazed that my low-sodium cooking is pretty delicious and our kids (and hubby!) hardly even miss the salt. georgecd@worldnet.att.net


Bill Owens, April 2, 2005 - Hi everyone, Well, I had MI number 2 last April and have been in class 3 CHF since. I have been unable to walk more than 25 steps without a rest and this makes getting anywhere kinda slow. Well now I am seeing a nephrologist in 10 days and may start dialysis. Being diabetic too for 25 years , I am curious what kind of prognosis this portends for me?
     I am on Coreg at 6.25 mg and have not been able to stand the increase doctor wanted. I also take Lasix, zaroxolyn, actos, insulin, K-dur, Vytorin, Cozaar and CoQ10. Has anyone had good response to dialysis? For that matter, can you ever get off it after starting? bryan55@exchangenet.net


Susan D's April 2 reply to Jacky B's March 31, 2005 - Hi Jacky, This whole subject of "how long" has been particularly potent to my family as we have an 88 year old member diagnosed in late January with end-stage heart failure and a recommendation for hospice care.
      I asked the doc "how long" and he looked at his watch, tapped it, and said, "Oh, from now until then." I found this really rude, and pressed him. He said, "Maybe one to two years, but honestly, no one knows. I recommend hospice so that life can be lived in the best possible way."
     Like many, I thought of hospice as a certain sign death was tomorrow. Not true. Heart failure is a bit new on the hospice front but I strongly urge anyone with end-stage to embrace the service. They will stay for as long as necessary, it is not limited to 6 months. It does not mean you are out of here next Wednesday afternoon.
     It is also true that a mortality figure based across all patients with CHF is useless. I have no doubt our family member has far less than 5 years. I also have every reason to believe he has had CHF for some 25 years, even if not diagnosed. So his mortality with this disease is probably going to fall in the 25 to 27 year range, a whale of a lot different from 5 years. When people ask me now, "How long does he have?" I tell them the same thing the doc told me: "Oh, from now until then." That is how much time we all have, CHF or not. duetfarm@mindspring.com


Paul G, April 2, 2005 - Hello, I'm a 31 year-old male with DCM, an ejection fraction of 15 to 20%, and an MVo2 of 30 to 35 ml/kg/minute. According to my excellent CHF specialist, I'm class one and have mild symptoms (leg tiredness once in awhile). I currently work full-time as a professor at a local university, exercise every day, and am the proud father of twin toddlers.
     Last fall, I began having problems sleeping due to my hectic schedule. After talking to my CHF specialist in late December, I began taking a low dose of Xanax (0.25 to 0.5 mg per day) to help me sleep. The medicine did wonders for me! I slept well, and my body felt more energized and refreshed. My leg tiredness vanished.
     When I saw my CHF specialist last week, he told me that he wanted me to stop taking Xanax because it's highly addictive. I wish he would have told me this in December! He also told me that it's a dangerous drug for young people. So for the past week or so, I've managed to go down to 0.125 mg per day, but I feel very tired and anxious. I haven't been sleeping well, and my exercise tolerance seems to have dropped a little.
     I called my nurse, who told me that I'm experiencing withdrawal symptoms and need to see a psychiatrist. She's not worried about my heart because the doctor just checked me out last week. I've already made an appointment to see a psychiatrist. Has anyone else experienced withdrawal symptoms from Xanax? Do I need to see my CHF specialist? I'm worried because my fatigue is similar to what I experienced 3-1/2 years ago when I was diagnosed with DCM. Thanks. Paul G. pwgleason@stritch.edu
 
Jon's note: Who cares if it's addictive when it drastically improves your quality of life? Why does the fact that it is addictive contraindicate its use? Coreg is addictive in a very real sense for many CHFers. Does that mean we shouldn't take it? What is more debilitating than improper sleep? Nothing, not even heart failure itself.


Tom S, April 2, 2005 - Hi Jon, After reading your post concerning statistics and life expectency I was no closer to getting a quantitative grip on my particular future. A little over three weeks ago I had both an echocardiogram and a heart catheterization after several classic CHF symptoms reared their ugly heads forcing me to make a run for the Emergency Room. After x-rays, the echo, heart cath and numerous pokes of needles to draw blood, and nine days hospitalization, the bottom line was I had gone from an EF of about 20 to 25% to "immeasureable." The cardiologist said their best guess was an EF of 5% to 10% and that while he originally thought a special pacemaker would give me about 3% more function it wasn't worth what I would gain.
     So I of course asked the question how long I had to live. I got the usual runaround and never got a full answer. It was some mumbo jumbo about 50% die in two years, etc. So here I sit unable to plan much, on supplemental oxygen and trying to do as much as possible as I can with five kids ages 11 to 17 still at home. Have you got any better statistics so I can do a bit of fine tuning my family's futures. bigheart@muchomail.com
 
Jon's note: I wish I did. You currently fall into a very little-studied group so I doubt there are any stats that would meaningfully apply to you. I am sorry. However, based on your situation to date, I suspect you are too stubborn to die!  ;-)


Sandy N's April 3 reply to Tom S' April 2, 2005 - Hi Tom, I was told by my doctor not to make any long range plans and to have a great time with my kids and family each and every day day. It took me almost a year to lose the fear and now I can do just that. He also told me that he has several patients going on 12 and 16 years with CHF. You have young children who need you now, so try not to deny them (you or your time), while you're busy worrying about tomorrow. Tomorrow will take care of itself. Please don't let fear hold you back. Good luck to you and your family. bleuskiiisgrl@yahoo.com


Rosemary B, April 3, 2005 - Hi Jon, I just wanted to let you know that your web site was, and still is, invaluable to us. My husband and I sent a check and received your response in the mail today. We both have heart failure - our treatment started four years ago - and your site helped us through the struggle with the medications. We are 88 and 89 years old, and heard of your program from our Kaiser CHF booklet. Thank you so much. Our prayers are with you and your family and all CHFers everywhere. JBOYJMS@aol.com


Jon's April 3 reply to Rosemary B's April 3, 2005 - Hi Rosemary, Thank you for taking the time to write. When I get e-mails and posts like this, it makes the effort easier! I hope you and your husband are doing well managing your CHF.
     You might mention to your Kaiser representative that since they consider our educational services valuable, it wouldn't hurt them to make a corporate donation once in awhile. Thanks again, Jon.


Terry L, April 3, 2005 - Hi Jon, For those who need it (me - I don't like Paypal or credit cards online), would you post a snail mail address for donations, please? Many thanks for your work here, Terry. talopez@lava.net


Jon's April 3 reply to Terry L's April 3, 2005 - Hi Terry, No problem. The information is located at chfpatients.com/about.htm and is as follows: CHFpatients.com, Inc. 11007 E. 83rd St., Raytown, MO. 64138-3536. Checks should be made out to "CHFpatients.com, Inc." Donations made from inside the USA by American citizens are usually tax deductible since we are a 501(3)c non-profit corporation with both the IRS and the Missouri Department of Revenue (if you live in Missouri, you get twice the bang for your buck).
     Send us your postal address with your donation and you will receive a letter of receipt. If you make more than one donation during a year and want one letter of receipt at year end showing your total annual contribution, just ask and we'll mail you one.
     We've tried to make this information easily available but that is harder than you think. <g> The logo in the upper right corner of many of our pages leads to a page with this information. The "Make A Donation" line near the top of our site index also leads to the information, as does the "About CHFpatients.com" link on the site index. I am open to any suggestions how to make it more obvious without being crass. Jon.


James N, April 3, 2005 - Hi everyone, So we're looking at this great house. It's got everything we need and we really like it. However, there's a telephone pole in the back yard with a big old transformer on it. The pole is about 20 feet behind the house or thereabouts. Everything I've read says this should be fine with a pacemaker, but I thought I'd toss it out to the board anyway. Any thoughts? jnj@spamcop.net


Jon's April 3 reply to James N's April 3, 2005 - Hi James, I really don't know the answer. Because a house is such a major investment, you want to be certain. I would contact the manufacterer of your specific pacemaker and get it in writing, as well as contacting your local electrical utility company about it. In the meantime, don't forget to use the links page to access other forums dedicated just to device implant recipients like www.implantable.com/ - and of course, I hope someone answers here! Jon.


Pam S' April 3 reply to Paul G's April 2, 2005 - Hi Paul, I agree with Jon 110%. Quality of life is the key. I am 41 and have taken Klonopin for sleep and anxiety for several years and haven't had any addiction issues. There are several drugs known as benzodiazapenes such as Xanax, Ativan, Klonopin and Valium. These drugs were abused in the 1970s and are now controlled substances. Most doctors do not want to prescribe them even though they are very helpful in certain circumstances. It is best to see a psychiatrist who specializes in medication management. They are much better at diagnosing and treating sleep, anxiety and depression and are usually up-to-date on mental health drugs. I am so grateful for my psychiatrist and have referred several friends to her.
     She has helped me find the right combination of drugs to treat chronic depression and anxiety. This is a trial and error process during which I've experienced side effects and withdrawal, too. Some docs downplay drug withdrawal but it is very real and can be scary. You're on the right track. Hopefully the psychiatrist will help with your sleeplessness. Let us know. Good luck to you. pam_smallwood@yahoo.com
 
Jon's note: I still take low-dose triazolam for "stand-alone" insomnia myself, prescribed by my cardiologist.


Jon, April 4, 2005 - Hi everyone, It was brought to my attention yesterday that our credit card donation system was not working. It is working now. If anyone has any difficulty with it, please drop me a line immediately so I can work on it some more. Thanks, and posts are coming up in a couple of hours. Jon.


Lowell P's April 4 reply to James' April 3, 2005 - Dear James, Regarding your concern about the transformer in your back yard. These transformers are usually only large enough to serve 3 or 4 houses. Pretty small. The only real concern is for folks who live directly beneath high voltage power lines, greater than 169,000 volts. Our voltage is usually, if not always in the USA, 115/230, for houses that is. This is nothing! You are no doubt in closer contact with higher voltage sources as you stroll through shopping malls and high rise buildings. Behind those doors with the warning "High Voltage" signs are filled with very large transformers.
     If you would feel better, it wouldn't hurt to get some guidelines about how sensitive your device is to a lot of things. I guess that without knowing I would be concerned more about garage door openers and radio controlled model planes. Actually I wouldn't worry at all. I was an electrical engineer for 30 years. I'm a candidate for an implant too but this is the least of my concerns. Lpepper3m@aol.com


Becky S, April 4, 2005 - Hi Jon, What do you know about the biventricular defibrillator pacemaker and its use to improve low EF? rebeccag99@aol.com


Jon's April 4 reply to Becky S's April 4, 2005 - Hi Becky, The gateway to implanted device pages is located at chfpatients.com/implants/implants.htm. The pacemaker page there has our information on that, for the most part. Be sure to use the Site Index for easy access to our web pages. Jon.


Wayne R's April 4 reply to Paul G's April 2, 2005 - Hi Paul, I haven't posted in a long time but I've been doing very well. I attribute my DCM experience in large measure to sleep apnea. As you can find out from many previous posts and articles, sleep apnea and the resulting sleep deprivation can and does precipitate heart failure if left unchecked.
     Anyway, more to the point, initially wearing a CPAP mask created anxiety and in general was just plain miserable. My doctor prescribed alprazolam (generic Xanax) to help me relax and fall asleep. I've been taking it every night since and sleeping well has been a major factor in my recovery. I don't know how addictive it is, but I don't find myself wanting to take some any other time than at night so I don't care. Sleep is what is addictive and I guarantee that you cannot survive without it. Best of luck, Wayne. whreos@earthlink.net


Giorg, April 4, 2005 - Hello all, I have a bycicle machine but I am not sure about the training I should do. I am 30 years old, between class one and two, and my EF is around 35%. How many beats per minute should I keep? I usually train at 130 bpm/120 watts - is that too much? Could I go higher? I sweat a lot, so I think it is okay not going higher. Thank you. giorgclunei@hotmail.com


Jon's April 4 reply to Giorg's April 4, 2005 - Hi Giorg, If you take a beta-blocker, heart rate during exercise means very little. See a post from the Archives Search Page. The specific post is located at (let it load) chfpatients.com/archives/archive2-2002b.htm#Jon2-18b. Jon.


Jon, April 4, 2005 - Hi everyone, Well, I was wrong about credit card donations working. They only work in the Firefox browser. After spending one hour on hold to talk to Paypal's tech support (I am vastly unimpressed), I discovered that they introduced a problem into their own system with a system "upgrade" that does not allow an amount to be entered when trying to donate via credit card. They do not know when it will be fixed. Literally unbelievable.
     You can donate by check or by using a Paypal account but not by credit card unless you use Firefox as your browser, as far as I can tell. I am terribly sorry, mainly because this is going to drastically reduce our ability to keep everything running money-wise.
     Again, I am sorry but there seems to be nothing I can do to make this work. Jon.


Pam S' April 5 reply to Jon's April 4, 2005 - Hi Jon, I searched on "perceived exertion" and didn't see any specific descriptions in your exercise section. I think it is useful information for folks taking heart medication. I have switched to this method because my heart rate is not an accurate indicator of how hard I'm working. I feel like I'm working hard but my heart rate will top out at 130 bpm. The explantion at this site is pretty good and might be worth including in your data files: www.cdc.gov/nccdphp/dnpa/physical/measuring/perceived_exertion.htm. pam_smallwood@yahoo.com
 
Jon's note: I must confess that in over 10 years of off-and-on endurance training, I have never used target heart rate. I guess my wife is right - I'm unusual.


Sandy N's April 5 reply to James N's April 3, 2005 - Hi James, My doctor and the rep from Guidant assure me that the high-rise electrical poles and transformers are okay for me to be under, they are so high they will not bother me unless I climb the pole and get within 12 inches to one. What did your doctor and rep from the manufacturer tell you? Best wishes to you. bleuskiiisgrl@yahoo.com


Doreen K, April 5, 2005 - Hi Jon, I was sooooo happy to see you back online! I have really missed this page. I was diagnosed about 12 years ago with cardiomyopathy (familial). Two of my brothers have died of this disease and one brother is celebrating his ninth year as a heart transplant recipient. I just turned 61 and have been feeling great. My EF has always been in the 35 to 45% range. Last month I had my yearly MUGA and was shocked to find out that my EF was 28%. Other than feeling a little more out of breath lately, I thought I was very healthy.
     I am on Coreg at 25mg twice a day, enalapril at 10mg in the morning and 15mg in the evening, Zoloft at 100mg for panic attacks, Lavoxyl at 50mcg for underactive thyroid, and a daily aspirin. I also take CoQ10 and multivitamins. My doctor just put me on Lipitor at 5mg. I have been protesting going on this for years but my cholesterol refuses to go down with exercise and diet, so I finally gave in. My first reading showed a reading of 190 down from 260 so I have to admit it is working, but I am still very nervous about using statins.
     I was reading an article in your HeartBytes section dated 12/09/2003 which stated that in a study of patients with chronic CHF, higher cholesterol level was linked to better survival than those with lower readings.It is a very interesting article to me and I am interested in your opinion. I noticed that you have a note at the end which you say, "this trial just raised questions - it did not answer any." Have you any more updated info on this?
     It seems ironic that my heart has gotten worse after using Lipitor. Maybe I am just over-reacting to a bad MUGA scan reading but I still would like to tell my doctor that I want to go off Lipitor. Thanks again for being here. I hope my donation reached you. We sent it via of our credit card as soon as we found you were up and running again. God bless. Doreen_Mawson@mchsi.com


Jon's April 5 reply to Doreen K's April 5, 2005 - Hi Doreen, We did receive your donation - thanks! In fact, this was after the supposed PayPal problem started so maybe it still works part of the time.
     My CHF doc wants me on a statin but I don't consider my own cholesterol levels bad enough to merit that treatment. I think now that I have a physical job and still exercise every day, I will see enough improvement.
     Have you considered taking Vytorin or Zetia? Zetia blocks intestinal absorption of cholesterol to lower your levels, while Vytorin combines Zetia with low-dose statin to get more effect while not taking high-dose statins.
     The article at Heartbytes wasn't specific enough to really answer any questions about cholesterol levels and CHFers. It does raise interesting issues, though, especially since very low blood cholesterol levels are also associated with mildly reduced mental function. Are current target cholesterol levels too low in general? In CHFers? In CHFers without coronary artery disease? Etc? I would like to see a trial address these issues but with pharmaceutical manufacturers making billions on statins, asking such questions isn't likely to be done in a trial anytime soon. Jon.


Pat Y, April 5, 2005 - Hi Jon and everyone, On my computer I printed envelopes to CHFpatients.com. Inc. with the address. I put these envelopes with my first of the month bills. Now I can remember to send my monthly check. This month I added a comment that my check would be my receipt. However, I would like a yearly accounting of donations after my December check was received. Maybe this method will help others who have memory difficulties like I do.
     I want to see this site continue as it is so valuable to many of us. Some in the medical profession are surprised at how educated I am about IDCM and CHF. I give credit to Jon and his site. PTYoumans@aol.com


Jon's April 5 reply to Pat Y's April 5, 2005 - Hi Pat, Thanks for your support! Our policy is that if you ask for an annual itemized donation receipt at the end of the calendar year, we will send you a letter by post (snail mail). Please ask with or after your last donation of the year, since many people don't want this. The receipt letter will also include our EIN (employer identification number) for tax deduction purposes with the IRS.
     Make your doctors earn their money, I say - get educated! <g> Jon.


Tom S' April 5 reply to Sandy N's April 3, 2005 - Thanks Sandy, I've been through that phase as well having just turned a three day death sentence into 10 years. It's strange that my body does not seem to want to keep going but my mind spins along as if I were a teenager. My mother used to complain about her frailties saying what a terrible thing it was to have such a young mind in such an old broken down body. That's the one thing I could truly agree with her, but I am not quite as gloom and doomy as she was.
     Because of my condition I get to sit and really take in all that surrounds me. Do you really know how beautiful a smile can be on the face of a child or young person? It is so genuine, so pure, so unadulterated as to rank as a work of art. Add love to that and it is pure magic. The blues of the sky, the grays, whites and patterns of the clouds, the sun playing off the trees, birds engaged in a raucous chase, the music of the earth and man, everything animate and inanimate, drawn from nature's palette - all things that come to a sharper focus, and seem to envelop the soul when you have time to see. bigheart@muchomail.com


Mary Anne, April 5, 2005 - Hi all, Does anyone have any info or experience in taking arginine (amino acid supplement) for nitric oxide? If so, have you found it worthwhile and how would it react with Coumadin, beta-blocker and ARB? Any info would be appreciated. mameredith@nauticom.net


Bill H's April 5 reply to Giorg's April 4, 2005 - Hi Giorg, I'm 55 and in class 3 with a-fib. I just wanted to let you know that when I was in cardiac rehab I would get my heart rate up around 160 just to see what would happen. The nurse wasn't real pleased but I told her it was a guy thing. One more thing - I lived. bj5250@yahoo.com


Becky S' April 5 reply to Jon's April 4, 2005 - Thank you Jon, My husband had one of the biventricular defibrillators (Medtronic InSync) put in this past Saturday. He was hospitalized early Friday morning. I just wondered what experiences you were aware of. The info you directed me to helped; it certainly made me more cautious in my hopefulness. My husband is feeling better, though. It's the first time in years that his ankles/legs haven't been swollen. It's too soon to tell much, of course.
     I think we're looking at heart transplant or no heart transplant. He said no to being put on the list eight years ago, but he still felt good then. Thank you so much for this site. I do plan to contribute.
     What happened in your case, Jon? I admit I didn't come to the site for a long while and when I returned, I realized the site had been down and restarted and you apparently have returned to work. I assume that means your heart is much better? Rebeccag99@aol.com


Jon's April 5 reply to Becky S' April 5, 2005 - Hi Becky, This is the short version. <g> A few years ago, my EF improved to 45% and then roughly 24 to 30 months ago (if my shaky memory serves) it went clear up to 55% (normal). However, I felt bad and still had significant edema despite low sodium eating and losing most of my extra body fat (30 lbs) through eating Atkins style.
     I returned to weight training and much heavier supplement use. About 6 months maybe after starting that, I began serious treadmill walking again. I have been tremendously strict about sticking with it and making progress ever since. The exercise turned me around and I began feeling better. By late 2004, I was feeling a lot better.
     I now work 8 hours a day at a container print shop, come home, eat a snack and lift weights. Then I take my supplements, shower, and sit down to do the web site until about 8 in the evening usually. Bedtime is between 8:30 and 9:00 PM every night. I no longer walk the treadmill because I now print bases instead of lids at work so it is quite a continuously physical job (base printing is a one-man show, no feeder).
     What specifically helped me improve? I did just about everything in The Manual myself, literally, and my heart function luckily returned to normal. The Manual is not me just blowing smoke - it can work for a large percentage of CHFers. Lots of amino acid supplements and exercise are what I credit with feeling better when improved heart function alone did not accomplish that. I cannot stress enough that if you can safely exercise with heart failure, do it! I recommend doing some resistance training before doing the treadmill. I honestly believe this makes it easier to stick to walking the treadmill down the road, and also that it improves quality of life a bit more quickly. Jon.


Mike C's April 5 reply to Paul G's April 2, 2005 - Hi Paul, I hope this helps. Feel free to e-mail me if you want a breakdown of how I went 6 days Xanax-free. I am 47 years old and was diagnosed as having panic attacks back in February of 2002 following an ER visit because my heart rate soared. By the time I got to the ER and after an injection of Ativan (same class as Xanax) my heart rate and rhythm returned to normal. Diagnosis was panic attack/anxiety. I was prescribed Xanax at 0.5 mg three times a day.
     To cut to the chase, I was in a-fib with a fast ventricular response. The a-fib resolved on its own before I got to the ER and the fast ventricular response responded to the Ativan. I wouldn't go anywhere without my Xanax and would take double the dose before my meals for fear of having a panic attack during my meal. When the correct diagnosis of a-fib due to a left atrial enlargement was made, I was well into the advanced stages of Xanax addiction.
     I tried to come off Xanax. I went 6 days without it after a long decrease in dose down to 0.125 mg for several weeks. I went through every symptom you can imagine, including major depression. On day 7 I had a real panic attack from the withdrawal and I was sure I was going to die of a heart attack. I had to take something like 4 mg of Xanax and even then all I could do was lie in bed for two days. That was how sick I was.
     If Xanax works for you and you have no problems with it (being addicted) then don't worry about it. If your doctor freaks out about it, change doctors. You can't just stop taking Xanax once you are addicted without some real potential problems. Believe me, you put an awful lot of strain on your heart when you go through withdrawal, even someone with a healthy heart. My psychiatrist told me he worked in a rehab unit and he said Xanax was the most difficult drug to stop. I agree with him. For anyone else who reads this, if you just started Xanax or are trying to get your hands on Xanax beware because you might regret it later if you think you can just walk away from it. I even lost custody of my child during my divorce because I was on Xanax. emike_c@hotmail.com


James N's April 5 reply to Becky S' April 4, 2005 - Hey Becky, Definitely go through the material on the site about implantable devices. In 2003, my EF was at 20% or less and dropping. I gave in and had a BiV pacer implanted. As of 6 months ago, my EF was 45%, an amazing turnaround. I go to the cardiologist for an echo tomorrow so I'll post an update afterwards. Y'all be thinking positive thoughts and the like for me! jnj@spamcop.net


Barb N's April 5 reply to Bill Owens' April 2, 2005 - Hi Bill, Just a brief word about Actos. It is one of a group of drugs called TZDs which work as insulin sensitizers. Per the prescribing information, it is not recommended for anyone with Class 3 or 4 heart failure and can induce heart failure in people with heart disease, particularly when used in conjunction with insulin. Post marketing surveillance also showed an increased incidence of heart failure even in people who had no pre-existing evidence of heart disease. It definitely promotes edema. Given these factors, I would question whether it is the best choice for a person with diabetes and heart failure. You might want to discuss this with your doctor.
     I was on a different TZD (which was pulled from the market because of liver toxicity) and insulin for awhile but found heart failure and blood sugar were both easier to manage with just insulin and diet. That said, I'm pretty compulsive about monitoring sugars and take 4 shots per day. protoplasm2@aol.com


Paul G, April 5, 2005 - Thanks to everyone who responded to my post on Xanax withdrawal. I was so miserable on Monday (after getting only 3 hours of sleep Sunday night) that I called my doctor, who told me that I could take my normal dose of Xanax until I see the psychiatrist, at which point I need to find a non-addictive medication. After taking my normal dose last night, I feel almost 100% recovered. I got about eight hours of sleep and feel great. I taught two classes this morning, graded papers, met with students, and even took my twins to the park. I'll keep you posted on what the psychiatrist says when I meet with him next week. Best wishes to all, and thanks again. pwgleason@stritch.edu


Patrick, April 6, 2005 - Hi everybody, While cruising Google I found the cheapest place for benazepril (the generic for Lotensin). It's a lot cheaper even than any of the Canada pharmacies and it's right here in the good ole USA. Since this ACE Inhibitor is cheap I'm assuming they have others at a cheap price too. It's too bad they don't have Coreg. They sell 100 tabs of 40mg benazepril for 32 dollars with free shipping. Check 'em out at www.drugplace.com/index.asp?PageAction=VIEWPROD&ProdID=348.
     Also, what e-mail address do I use to make a donation through Paypal? God bless. Patrick. NarleyHarleyGuy@webtv.net
 
Jon's note: Click the "Make a Donation Here" button near the top of this page to use PayPal to donate.


Vicki J, April 6, 2005 - Hi, Does anyone know of a site similar to Jon's, but about Parkinson's Disease? I told her how Jon went into great detail but in plain English so everyone can understand. Your help would be greatly appreciated. Thanks! vj6464@aol.com


Becky's April 6 reply to James N's April 5, 2005 - Thank you, James! I pray your echo reveals wonderful news. Your post was so encouraging. After being stable at 15 to 17%, my husband's EF dropped to 14% sometime during the last few months. When we went into the hospital around 1:30 AM Friday, Elton's cardiologist said his heart was barely moving and we'd better make our family all aware of that and that he needed to reinstate talks with the transplant people and that there was this "new" pacemaker that might help. I've been afraid to let myself hope too much. Yet, I started posting because Jacky asked about the 5-year statistic! I know better than to let statistics frighten me. In this moment of near-death, I too need prayers though. Thank you again James, for your post. Your sharing your experience blessed me! rebeccag99@aol.com


Becky's April 6 reply to Jon's April 5, 2005 - Thank you Jon, for giving me your update. My husband has a lot of heart damage that he has had from the first diagnosis 8 to 9 years ago. We don't know what caused his problems, I lean toward a viral infection. Whatever, I'm not sure how much he'll ever get to exercise again. Funny though, he used to play all sports but he especially loved competitive badminton (like in the Olympics, not like in the backyard version). Of course, he's not played in at least 8 years. He's not even mowed a whole "small" yard in that time!
     But when my son called today to check on him (following his device implant over the weekend), I heard my husband say, "I'm feeling great - ready to play badminton!" He can dream on, but at least I got a better idea as to how well he feels right now. One other positive is his twice saying, "It's so much fun to breathe!" rebeccag99@aol.com
 
Jon's note: That last comment counts for so much more than most non-CHFers will ever know!


Giorg, April 6, 2005 - Hi Jon, First of all, thank you about your answer about heart rate during exercise. Second, I read your page about supplements and you convinced me about two of them: Taurine and L-arginine. I already take, under cardiologist's prescription, L-carnitine. Just a question to you and everybody who takes those supplements - could I become addicted? Should I be very careful if one day I decided to quit taking them? I decided to go on supplements, because my energy level is getting too low for working, and I need to work! I will let you know if supplements work for me. Actually I have to say that I did not see any difference with 2000mg L-carnitine per day. Thank you. giorgclunei@hotmail.com
 
Jon's note: Hi Giorg, You're absolutely right that no one supplement will work for everyone, it's a matter of trying them and seeing if some will work for you specifically, and which ones.


Karen K's April 6 reply to Paul G's April 5, 2005 - Hi, I feel compelled to enter the Xanax discussion. Way back, prior to my CHF diagnosis, I was prescribed Xanax for panic disorder. My doctor had me taking 4 mg a day (that's a high dose).
     Several years into my diagnosis, I realized I was severely depressed. My doctor kept telling me I could take as much as 8 mg of Xanax a day (I rebelled against this). Because of my CHF, I asked to be hospitalized to go through a change in medication. I was in the hospital about 10 days on the psych ward. I was weaned off of Xanax and it was replaced with Librium (same class as Xanax and also considered to be addictive. On leaving the hospital my dose was 100 mg a day.
     I currently am prescribed 20 mg a day with the authorization to take an additional 10 mg if needed. I take my Librium before I go to bed as I use it to help with my sleep and first thing in the morning. Most nights I only require 10 mg.
     My life has been very stress-filled over the past 5 years. My daughter in her 30s was diagnosed with breast cancer. I have gone through a very messy, hurtful divorce. If it hadn't been for the Librium, I think there were days I would have lost it totally. I worked with my doctor on my Librium and Prozac intake.
     For the most part, my mental health issues are a result of a chemical imbalance in the brain. I can actually feel the anxiety rise and know when to back away to take care of myself. As far as these meds being addicting, here's a good way to look at it. Diabetics take insulin because their body doesn't produce an adequate amount. Much the same way, those of us with mental health issues are due to a chemical imbalance in the brain. So, one can say the meds are addicting but then one would have to say that insulin is addicting because if a diabetic stopped taking the medication, their body would react poorly.
     I hope this makes sense. I am not ashamed of the fact that my body needs these medications to allow me to function more normally. The important part is that one should work with their doctors/psychiatrists to determine the best possible medication and dosage for them. Feel free to e-mail me if you have questions. Karen. karenk@machlink.com


Michael H, April 6, 2005 - Hi everyone, I'm glad to see the page back on my computer screen. I wonder if any one experiences pain in his feet. I visited a neurologist and he blamed my medicines. He gave me vitamins and there was a considerable improvement but after I stop them, pains begin again. Before I go go back on vitamins, has anyone had a similar experience? Thanks. michnhgavriel@cytanet.com.cy


Sharon L, April 6, 2005 - Hi all, Has anyone been taking coversyl (perindopril) for high blood pressure? I know someone who was on it and it made her very sick. What else is good? lyons@sasktel.net


James N, April 6, 2005 - Okay, I had my follow up appointment today with the cardiologist. We also ran an echocardiogram to see how things were progressing. A year and a half ago, my EF was at 20% and dropping. The left ventricle measured in at 6.5cm - it had started at 5.1cm about a year or two before. I was not really responding to medication and things were bad enough that I actually had problems walking 30 feet. We decided to move forward with a biventricular pacer.
     Today, my EF is near-normal to normal and the doc is calling it 50%. My left ventricle is down to 5.6cm. My blood pressure was 102/60. My weight is down 13 pounds. The doctor is considering taking me off Cozaar and furosemide. He's also concerned that my weight loss (which will continue) will drop my blood pressure too low for the Cozaar. I think it is quite reasonable to conclude that these BiV pacers in fact do something to improve the health of us CHFers. :-) jnj@spamcop.net
 
Jon's note: There's no doubt that a group of CHFers do benefit. Patient selection is everything so if anyone is considering this implant, be sure you fit the "specifications" first and you should have pretty good results. In my personal opinion, James, stopping ACE inhibitor/ARB or beta-blocker is a really bad move. The official treatment guidelines agree.


James N, April 6, 2005 - Hi everyone, Earlier I asked if anyone had any information regarding Medtronics pacers and transformers. Of course, I'd also inquired of the manufacturer. Here's their response:

Our tests indicate that our devices are extremely resistant to outside electrical interference. Pacemakers have a titanium case around them which guards against most types of outside electrical interference. Also, we have designed filters into our pacemakers that also block out many electrical interference signals. A transmormer will not interfere with the function of your pacemaker. You should maintain a distance of 12 inches from your implanted device and the transformer.

James. jnj@spamcop.net


Becky's April 7 reply to James N's April 6, 2005 - Hi James, I cheer with you! I am so happy for you on your good report! Now, I just pray that God blesses my husband with significant improvement also. May God continue to bless you, James! rebeccag99@aol.com


Susan D, April 7, 2005 - Hi, I have read several places that CHF patients should not take Aleve or Motrin. What is the complication of these two drugs and what do you take for common aches and pains or arthritis? duetfarm@mindspring.com


Julie G, April 8, 2005 - Hi, My doc wants to put me on CoQ10 and said he did not know the best brand. Can anyone help? Thank you, Julie. mamagoehl@yahoo.com


Lowell P, April 8, 2005 - Dear Jon, I have been having my BNP tested every three of four weeks for several months. It was about 1200 near the first of the year (2005). It went down to 658 once but for the past few times it is about 900. Today the lab report said it was 882. I have been taking 40mg of Lasix every day and for about a month I have been adding 2.5mg of Metolazone every other day to the Lasix. Do you have any suggestions on how to reduce that number?
     I feel very well and can walk several miles with no SOB or fatigue. I do worry though, that my heart is failing more. I sure would like to hear from anyone who would share what their BNP is or has been. My doc says I have clear lungs and he is unable to provide an answer. Thanks in advance. Lowell in Arizona. Lpepper3m@aol.com


Jon's April 8 reply to Lowell P's April 8, 2005 - Hi Lowell, I haven't had my BNP tested in over a year, if memory serves. Are all your CHF meds at target dose? Have you tried taking both an ACE inhibitor and an ARB, along with a beta-blocker? How about Inspra? BNP is not very useful as a stand-alone indicator of anything once you get past initial diagnosis (yeah, I know lots of people will disagree, but that's my opinion). What are your echo and Vo2max results?
     You sound like you're actually doing alright, regardless of BNP results, since you have no significant symptoms. Why do you think your heart is weakening? I suggest that if it's okay with your CHF doc, you lay out and follow a regular exercise program. Eat low sodium, and follow the other advice in The Manual, and see how it goes over time. Jon.


Clara D, April 9, 2005 - Hi everyone, It's my understanding that cardiomyopathy patients are at greater risk for sudden death than the general population. Does anyone know of any research showing how much, or if the risk increases as the patient develops more heart failure symptoms and/or lower ejection fractions? Is there more chance of sudden death in patients with class 4 heart failure than with class one? Would the fact that I have non-ischemic IDCM and LBBB make a difference?
     I am again being urged to get an ICD and need this information in order to make a really informed decision. Yes, I know I should have asked my doctor but I wasn't expecting this discussion and didn't think fast enough! I'll be talking with him again but I would like to get some information independently first. Thanks for your help. Clara D. johndossett@nc.rr.com


Jon's April 9 reply to Clara D's April 9, 2005 - Hi Clara, Maybe others can point you to specific information. Our ICD page is located at chfpatients.com/implants/icds.htm. Also, use the links there and the links to other forums at chfpatients.com/links.htm#forums.
     If your EF is less than 30%, your risk for sudden cardiac death does increase and the likelihood that an ICD will prevent SCD does increase. However, if low EF is your only risk factor (no strokes, no family history of SCD, no dangerous arrhythmia or history of one), in my personal opinion an ICD may not be necessary. Jon.


Diane K, April 10, 2005 - Hi everyone, Here's my story. I am hoping someone has any information at all or any kind of similar story. My husband is 49 years old. About 1-1/2 years ago he had a small heart attack. Of course they fixed him up, gave him some meds and that was that. We kind of took it all for granted. Well, he stopped taking his meds and he didn't go back to his doctor for checkups. One month ago he had a massive heart attack. His left main artery was completely blocked. They did a catheterization and put a stent in but the heart attack caused a lot of damage. He was in CCU for two weeks with problems (mainly pulmonary edema, bleeding). He threw up a lot of blood so they had to stop his blood thinners.
     Anyway, somewhere during those two weeks the stent closed back up and no one knew it. He even came home from the hospital but started having trouble catching his breath so he went back about 10 hours later. The next day was when they decided to do another catherization and they found the closed stent. Of course the already damaged part of his heart was not moving at all and they couldn't unblock the closed up stent due to blot clots. So they had to do a test to see if they could get his heart to start moving again. If not, we were looking at a heart transplant situation.
     Well, they did get his heart to move some so they decided to do a quadruple bypass. They put in the balloon pump (almost thought they were going to have to use the LVAD, which they didn't). It has now been 13 days since the bypass and they did remove the balloon pump and now they are trying to wean him off of the IV medicines. The last one he is on is dobutamine. They tried to wean him off and he didn't do well so they had to turn it back up. His heart is very weak and we are just hoping that it can recover. I don't know, he has been in CCU for 29 days now. Frianne@aol.com


Peter S' April 10 reply to Clara D's April 9, 2005 - Hi Clara, Jon's response was right on. ICDs at the right time for the right problems are a legitimate and prudent step. I too have been recommended for an ICD as a survivor of a recent heart attack and having an EF of 38%, but without signs or experiences of heartbeat fluctuations.
     Why do I hesitate? (1) Since I am a borderline prospect (would not meet Medicare reimbursement criteria for example) can I take my cardiologist's recommendation as a pure medical judgment or more a cover your butt item to have in my file? (2) Even assuming purity of thought, what benefits versus risks are there in having an invasive object permanently attached to one's heart? These devices can malfunction, create infections, be improperly installed, require constant monitoring and battery-level checks, forever eliminate the use of MRIs in other diagnostic situations, are potentially able to create a severe shock if aggravated by environmental electrical surges, not to mention psychological anxiety [waiting for the miscued blockbuster shock that can hurl you against a wall if you are lucky enough not to be driving a car]
     Does all this mean one should not consider the option? Of course not, but make a reasoned and intelligent judgment on your own. If your doctor is good he will give you the bad news, but even with the best it is likely to be in small print. Read Jon's site thoroughly as a starter. I am a lawyer, not a doctor. PeterSperl@cs.com


Bill B, April 10, 2005 - Hello everyone, I am new to the site. My diagnosis of CHF was based on x-ray reports by a cardiologist. By going through this site I am pretty sure the class I was placed in is not accurate. I'd like to find a CHF specialist in my area who can first diagnose and then treat my condition. Please do let me know if any of you have visited and recommend doctors in the northern New Jersey area. If there are no recommendation in that area I am also willing to look in New York-Connecticut-Pennsylvania areas which are all within driving distance. eureka_0@hotmail.com


Laura S, April 11, 2005 - Hello, My name is Laura. I am 37 years old and I have had peripartum cardiomyopathy and heart failure for 9 years. I was wondering if anyone retains fluid in places other than the lungs and ankles. I swell in my abdomen, hands, and underneath my eyes, and my doctor thinks I am crazy. Is this normal in some people with heart failure? I have never been the text book case and it seems that the doctors tend to think that way. Any responses will be much appreciated! jeanbean892004@yahoo.com
 
Jon's note: I have always swollen in my abdomen, face, and hands, in that order. This is not the "norm" but it is certainly not unheard of.


Jason M's April 11 reply to Bill B's April 10, 2005 - Hi Bill, A great doctor in northern New Jersey is Doctor Tom Cock. I know the name is a little funny, but he is a fantastic doctor located in Hackensack, or Westwood Cardiology. Also over the GWB in New York City is a Doctor Cagin. I saw both of these doctors when I was diagnosed with dilated cardiomyopathy. E-mail me and I will give you their phone numbers. joot8@yahoo.com


Candace W, April 11, 2005 - Hello everyone, My grandmother was just diagnosed with CHF. Does anyone know of a great CHF doctor in or near Fort Lauderdale, Florida? I would really appreciate your reccomendations. Thanks so very much! gbcbct@comcast.net


Oliver E, April 11, 2005 - Hi there CHFers, Has anyone else experienced an allergy rash while on ACE inhibitors? I recently upped my dose of enalapril from 10mg per day to 15 mg per day and have now developed an itchy, red, prickly rash (feels like sunburn) on my upper torso and neck. My dermatologist is not convinced it is caused by ACE inhibitors but I can't think of any other cause. If anyone has had it, does it go? What worked best to treat it? Should I live with it at 15mg per day or reduce my dose back to 10mg per day and see how I feel? Thanks everyone! oliver.evans@bain.com


Norma's April 11 reply to Susan D's April 7, 2005 - Hi Susan, My doctor advised me to only take Tyenol. I had always taken Advil for a headache. I read later where the other pain relievers can intensify the other meds I am taking, such as Toprol-XL, Mavik, Crestor, or at least one of them, and throw me off balance. It may be that they don't work well together. I do take CoQ10 to offset the Crestor. I take a big perscription potassium pill too! Also, my doctor told me to take a good multi-vitamin and a good calcium pill. I go to Wal-Mart and get a caplet that has calcium, magnesium, and zinc in it, I take at least 5 a day of these. I get bad leg cramps if I don't take calcium! nvl@pennswoods.net


Jon, April 11, 2005 - Hi all, It seems that the credit card donations are working now. At least, it worked for me tonight by clicking the donation button at the top of this page and using the "secure checkout" option via PayPal. Jon.


Jennifer G, April 12, 2005 - Thank you to those who responded to my questions regarding Coreg and its tendency to cause the same symptoms, in the beginning, as CHF. I'm sorry I'm so late in responding back. Unfortunately, my grandfather that I mentioned in my earlier post passed away April 2nd. He was 88 and would have kept on going if his heart and kidneys had allowed him to do so. He needed a valve replaced about 4 to 5 years ago but refused it for fear that he would not bounce back from the surgery. He had adjusted to the routine of going in for liquid Lasix and breathing treatments whenever he couldn't get his breath. This time, according to his doctor, he had a mild heart attack which further damaged his heart muscle. His kidneys were also bad (according to Granddad, they always had given him trouble) so when he was put on IV medication to keep the fluid out of his lungs, his kidneys began to fail.
     I know this is detailed and our family is very sad, but I'm saying all of this to tell you thank you for this site and your posts and all of the wonderful information. I'm amazed at what the nursing staff didn't know about what my grandfather was going through, and especially by their absolute refusal to leave him alone when he was finally able to begin resting. I finally began printing out parts of The Manual for those who were staying overnight with my grandfather in the hospital, to help them relate. It helped them understand so many symptoms that no one was explaining to them or to my grandfather.
     Thanks also for the posts and e-mails that helped me better understand Coreg and staggering meds (that helped so much!) and for the analogy of the motor governor. Your encouragement gave me the determination to stay with all of the medication, and I'm happy to say that I was able to plant a few flowers in the garden this weekend and I can now walk down the hall at work without getting out of breath.
     Thanks again everyone and especially for Jon and your courage to research and create this web site, and your willingness to give the glory to God. jennifer@doublegates.com


Shellie W, April 12, 2005 - Hello everyone, I am so worried about my dad. He has CHF, diabetes and some degree of kidney failure. He is 60 years old and is in severe end-stage CHF. He is in complete denial about his heart problems. He refuses to go to the doctor most times so as of right now this is all we know. He's had four small heart attacks since October of last year. His weight is normally about 260. He is boney everywhere except his belly and legs. He has severe pitting edema all the way up to his thighs! He has oxygen at home and uses it 24 hours a day.
     How bad can he get? I've worked in the medical field as a respiratory therapist but I have to tell you I've never seen anyone with this much water on them. His abdomen is about 60 inches around! We are doing everything possible to get him to the hospital but he's not budging. He just cries all the time and begs for help, then refuses it. He is only able to barely walk from the bed to the bathroom, about ten feet. That's it for his mobility. He sits on the side of the bed 24 hours a day now.
     I'm so worried. We know he has some sort of mental problems as nearly everything he does makes no sense at all. I'm rambling. I guess my question is: How much water can a person have on them? His weight is now 325. We were able to get him down to 269 just a few months ago. Lasix is not really working anymore. He's on 80mg currently and won't go any higher for fear of losing his kidneys. Would dialysis be an option? The doctor said at this point we should just keep him comfortable - but how?! shellie@cleburne.com


Jon's April 12 reply to Shellie W's April 12, 2005 - Hi Shellie, I am sorry to hear your dad is going through so much. A person can retain an enormous amount of water but eventually the lungs fill or the heart slowly shuts down without some relief. He is being just as hard on his kidneys this way since his heart is no longer properly supplying his kidneys with the blood they require, thus slowly damaging them, probably far more than using IV diuretics to get the fluid off which would allow his heart to supply more blood.
     The usual - and really very easy - way to deal with this kind of severe edema is a 24-hour hospital stay using IV Bumex plus electrolyte replacements. A man can stay in the hospital bed and just use a portable plastic urinal. The urination is nearly constant until 40 pounds or so is off, then becomes intermittent.
     He must have IV diuretics because his abdominal lining is full of fluid so the oral pills do not absorb, thus they don't work anymore. Dialysis is an option. There is also a kind of filtration just for this situation - see www.chfsolutions.com for more on that.
     He doesn't make sense because his body is full of waste products that are a "natural" form of poison, his blood pressure is skewed and so are many of his neurohormones. It's up to those around him to get him to the hospital if possible because he does not understand what is happening to him. If you think you can get him to do it, I'll e-mail you my telephone number and he can call me at a set time and I'll talk to him about it all. Let me know. Jon.


Norma L, April 12, 2005 - Hello everyone, I have been taking my meds regularly, watching my salt and fluid, and walking a lot, and have even lost weight. Yet I am SOB more than I was. What am I doing wrong? nvl@pennswoods.net


Jon's April 12 reply to Norma L's April 12, 2005 - Hi Norma, There are a lot of possibilities. I'll touch some and hope others fill in what I miss. Dehydration is a major cause of both extra fatigue and shortness of breath (SOB). Deconditioning is another but hopefully your exercise is helping that. On the flip side, over-exercising without enough recovery time can also increase symptoms. You may need to space your sessions out more widely and maybe do some light resistance training on days you're not walking.
     Also, try adding some supplements. Since you're SOB, arginine or taurine are good possibilities, as is creatine monohydrate at about 5 grams a day. I don't know what your meds are but your meds treatment may need to be more or less aggressive so talk to your heart failure specialist as well. Finally, it is possible that your heart function is slipping - talk to your heart doctor about that possibility as well. Jon.


El R, April 12, 2005 - Hi all, I am just two weeks away from my surgery date to try for the 3rd time to place the left ventricular pacemaker lead - epicardial placment is the plan. I am getting nervous now. My EF is 20 to 25% with severe mitral valve regurgitation, mild to moderate tricuspid regurgitation, and mild pulmonic regurgitation. I also have pulmonary hypertension. My weekly BNP has been running in the 500s. I just hope this works and I can start to feel less fatigued. I just learned of the pulmonary hypertension and read up on the site about it. It doesn't sound like good news. Is it reversible? I am taking 80 mg Lasix now but it doesn't seem to have much effect, not like when they first upped the dose. elpiscado@aol.com
 
Jon's note: Whether PH can be reversed depends on whether the cause can be successfully treated (secondary PH). Talk to your cardiologist about it for sure.


Bill H's April 12 reply to Oliver E's April 11, 2005 - Hi Oliver, My scalp breaks out in a rash about once a month or so - it's almost like hives but isn't. I haven't found anything that helps so I can't help you there. I just wanted you to know you're not alone. bj5250@yahoo.com


Bill H's April 12 reply to Laura S' April 11, 2005 - Hi Laura, I retain fluid in my abdomen and face as well as my calves and ankles. Sometimes I think the doctors should research the subject a little better. bj5250@yahoo.com


Barb N's April 12 reply to Oliver E's April 11, 2005 - Hi Oliver, Yes, you can get a rash from ACE inhibitors. Listed side effects (per Drug Digest-online) include:

Side effects that you should report to your prescriber or health care professional as soon as possible:
 
decreased amount of urine passed
difficulty breathing, or difficulty swallowing
dizziness, lightheadedness or fainting spells
fast or uneven heart beat, palpitations, or chest pain
fever or chills
numbness or tingling in your fingers or toes
skin rash, itching
swelling of your face, lips, or tongue
swelling of your legs or ankles.

Good luck! protoplasm2@aol.com


Sandy N's April 12 reply to Candace's April 11, 2005 - Hi Candace, Consider Dr. Schneider in the Fort Lauderdale area. I don't have the address but I'm sure you can get it in the phone book. I now see a Dr. R. Walsh in the Clearwater area and they are both great CHF specialists. bleuskiiisgrl@yahoo.com


Sandy N's April 12 reply to Laura's April 11, 2005 - Hi Laura, I too swell in my abdomen when I get too much fluid. I'm a size 8, so I usually look pregnant when this happens. It's all part of the illness. bleuskiiisgrl@yahoo.com


Sandy N's April 12 reply to Julie G's April 8, 2005 - Hi Julie, CoQ10 comes in many brands. I look for one that does not have other ingredients, such as salt! The prices vary so you may just buy one that is at a good price. I found Wal-Mart has the best price so far. Read the label. Good luck. bleuskiiisgrl@yahoo.com


Sandy N's April 12 reply to Becky's April 6, 2005 - Hello Becky, Your husband's comment, "It's so much fun to breathe" - yes,he is so right. When I had my device implanted, it was like a new me! Best of luck to you both! bleuskiiisgrl@yahoo.com


Sandy N's April 12 reply to Clara D's April 9, 2005 - Hi Clara, Before getting my device implanted, I too asked the same questions about sudden death. My doctor advised me to not worry about statistics and that "I cound go, with the ones who do or the ones who don't." Just look at it this way, you have your very own paramedic with you while you waite for the human paramedics to arrive. You're sure to get many responses. Good luck with your decision! bleuskiiisgrl@yahoo.com


Jon, April 14, 2005 - Hi everybody, I am sorry the forum wasn't updated last night. My pooter crashed so hard it was bed time before I got everything running properly again. However, it is running fine now - go figure. Jon.


Clara D, April 14, 2005 - Hi, Many thanks to Jon and Peter and Sandy, and also to those who e-mailed me with information about ICDs. Thank God (and Jon!) for this site. What would we do without it? All the problems pointed out by Peter concern me, but I think what concerns me most is what happens in this disease, which is progressive, when you get to end-stage. I've read that even a "do not resusitate" order will not get an ICD turned off. To turn it off would take a separate directive. And who knows if it would be honored?
     I told my cardiologist last week that I would like to have an echo done before making up my mind about an ICD since it had been over a year since the last one. He agreed and the news is good! The report states that "LV function has improved slightly" but to me that huge since it's the first improvement I've seen since being diagnosed over three years ago. My EF has gone from less than 15% to 25%. My LVIDd has gone from 7.1 cm to 5.7 cm and my LVIDs from 6.6 cm to 4.7 cm.
     I'm still being told that with the low EF I fit the criteria for an ICD but the Medicare web site states that reimbursement is limited to patients who are class 2 and class 3. While everyone has bad days now and then and I'm no exception, I still consider myself class one so I certainly don't fit Medicare criteria. At this point I've decided that an ICD would cause me a lot of stress, and stress is what I try to avoid so for now at least, I'm going to continue resisting this option and just be grateful for the improvement, however slight, in LV function and the good quality of life I continue to have. I can certainly understand why others might reach a different decision. It's a decision that more of us will be asked to make now that Medicare has relaxed its criteria for reimbursement. johndossett@nc.rr.com


Donna H, April 14, 2005 - Hello all, My husband didn't qualify for the BiV pacemaker until after an AV node ablation. He was hesitant about the ablation but now we are very glad he chose to go ahead with it. Last year before the new pacemaker, his doctor told us his EF was 10%, give or take 5%. We just got his results from last weeks echo and his EF is up to 40%!
     The VA hospital has also given him something called a Health Buddy. The Health Buddy connects to our phone line and then is connected to a computer at the VA hospital. A scale, a blood pressure cuff and a glucose machine can be connected to the Health Buddy. Each day the machine will turn on and ask my husband a series of question and will send his answers, his weight and blood pressure to the hospital computer. If there are any major changes in his numbers, the hospital will call and talk to him. This is a tool to help patients monitor their health and help with communication between the patients and the hospital staff.
     We are having a little trouble getting it set up but I am going to work on it this evening. Has anyone else been offered a Health Buddy? What do you think of this new idea? herdrich@grm.net
 
Jon's note: This was mentioned on site in early 2000 while in trials. See chfpatients.com/heartbytes_old.htm#web_medicine for more.


Shellie W's April 14 reply to Jon's April 12, 2005 - Hi Jon, Thank you so much for your response. I am attempting to download the patient brochure on the system 100. I am not sure it's going to download for me but from what I can gather, this is a sort of dialysis. I will try to find more information out on this. I will be sure to ask about the System 100 tomorrow. I'm just wondering if this is available in all hospitals or something we would have to specifically request?
     My father cannot go under anesthesia because they say he would not come out of it, so our options are limited. With regular dialysis I know they have to put in a graft or make a fistula for you. If he has to be put under for that then dialysis is out. This maybe what we are looking for. Thank you for that information on it.
     I have news about my father. After nearly a month of my family and I begging him to go to the hospital, he finally called for help himself tonight. This came after he realized he could no longer get out of bed at all now. He is now in the hospital. At this point I don't know anymore other than they say he has over 50 lbs of fluid on him. He is a very controlling person so it is not easy to override anything he says. If we force him to go to the hospital, it gets very ugly for the hospital as well as for my family. It's best to urge but not force with him. Trust me on this. Thank you for all your help. I'll update when I know a bit more. shellie@cleburne.com


Mike F, April 14, 2005 - Hi Jon and everyone, Jon I have cardiomyopathy and CHF. I need some guidence on an issue no doctors in Florida can help find a answer. I had an arterial doppler done March 1, 2005. I got results back that showed pressure difference in my arms 170 on right and 152 on left. I went to a vascular surgeon and he thought the subclavical artery was blocked (I have suffered 2 major and 4 minor strokes). I had a subclavical angiogram done and it showed no blockage. Since all my doctors and several new ones just throw their hands up and say they are stumped. I have tried to research this and can find no info. Is there anybody that can help guide me in finding out info or direction on this matter? Thanks, Mike F. meatt@bellsouth.net


Richard B, April 14, 2005 - Hi, This is my first post and I'm hoping for some input on experiences with bi-ventricular pacemakers. I was diagnosed with CHF in 2000. I had a silent heart attack and ended up with an EF of 24%. I have since had 3 stents implanted, two in 2000 and one in 2003. My cardiologist has been treating me with a program of aggressive drug therapy, which has been working very well but now suggests that a BiV pacemaker might improve my EF and quality of life. He says EF improvement could be anywhere from zero to 10%.
     Have any other forum members had a BiV pacers implanted and what are your results? I'd like some info from the troops on the line in the real world. Thanks, Richard. senrab@pathwaynet.com


Susan A, April 14, 2005 - Hi all, What a pleasant surprise to see the site back up. When did this happen and how? It seems like the last time I checked it had closed and Jon was thinking he would be off to another job, and he was searching for funding to keep the site going. I am happy to see things up and running.
     I need some help with a work issue. My employer pulled me in last week for an investigatory interview for "performance issues." Today they told me that instead of going down the road of discipline, they would like to determine if my health is impacting my ability to do my job. Management is requesting that I sign releases of info for my cardiologist and primary care physician. They state they are concerned that my heart condition (DCM) and the medications I am taking to treat my health conditions (I am also post-breast cancer) are affecting my job performance. I told them I would probably be okay with signing the releases, but first I want a chance to review the letter and packet they intend to send to my physicians. I plan to continue to use the support of my union stewards and hope to get some guidance from my therapist who helped me get through my battle with cancer on how to best proceed.
     I feel like I am on a slippery slope at work. Any other thoughts or suggestions? Any comments on how you figure out if it's the meds and heart stuff, when you are working at a job where the volume of work is too high and everyone is having struggles to stay caught up, unless they are working overtime. I have made it clear to my employer overtime is not an option due to my health. Susan. flobirfly@hotmail.com
 
Jon's note: Personally, I would not sign a release for medical records for any reason to an employer. You really cannot know with whom the information will be shared or how securely it will be stored. Instead, plan a letter with your doctor that is sent to you that you then give to your employer telling them what you think they should know. If that doesn't sit well with them, contact a lawyer! (I hope others reply)


Peter S' April 14 reply to Sandy N's April 12, 2005 - Hi Sandy, Regarding your doctor's advice about ICD implants, it disturbs me that a doctor (presumably a cardiologist) can tell a patient not to worry about statistics, when it is the statistics from medical trials that in turn help him make professional decisions. Medicine is part art and part science. I wasn't there to hear his words, but I would much rather have heard him say, "Statistics give us direction, but we still need to make an individual judgment about an individual patient." But if that is your case, ask him for his reasoning, not a flip toss-off statement. It's great to have a mechanical medic with you if you need it, but do remember that anything mechanical can go wrong. See my April 10th reply to Clara if you have not already. PeterSperl@cs.com


Mary Anne M, April 14, 2005 - Hello, Is it significant if the systolic blood pressure is almost twice as high as the diastolic with a pulse of 69? I find this very often when I take my blood pressure and wonder if it is significant. This evening it was 147/64, pulse 74. The systolic pressure is often in the 130s and 140s. I take Cozaar at 50mg, Toprol-XL at 50mg and Lasix at 20mg and potassium. It has been recommended that I have a pacemaker installed or possibly an ICD. Any info on this, anyone? mameredith@nauticom.net


John E, April 14, 2005 - Hi everyone, In January of 2004 I went to the hospital with what I thought was pneumonia. The doctors said yes, I had a mild case but I also had CHF with an EF of 10 to 15% and that without a heart transplant I had about a year to live. The drugs I was given are Coreg (was already supposed to be on that for high blood pressure but wasn't taking it at the time), potassium chloride at 20 mEq, furosemide at 40mg, Aldactone (spironolactone) at 25mg, Lisinopril at 10mg, and digoxin (Lanoxin) at 0.125mg. When I got out of the hospital the major problems were (and still are) extreme fatigue with any physical work and in general being tired all the time, with leg pain that goes from tingles to someone please shoot me.
     I was driving a big rig across 48 states and now I'm on SS disability and my medical treatment is through the VA (which contrary to what I had heard in the past is a class act). The year has come and gone and I'm still here. Last month the VA did a 45-minute echocardiogram on my heart. I was impressed with the amount of time it took and figured whatever it was telling them had to be thorough.
     I got the echo results back the other day along with the results of all the blood work they did. Everything looked good and when it came to the echo, the doctor with surprise in her voice said, "There's nothing wrong with your heart and your EF is 50." So is someome pulling my tingly leg or what? Do you have CHF and then not have it?
     My question is, could the doctor in January of 2004 have been totally wrong? This brew of pills they gave me, each has it own degree of side effects and then in combination (there's a web site that does the figuring) the six drugs generate 1 minor, 7 moderate and 2 major drug interactions. Soooo from the time I got out of the hospital in January of 2004 I have never felt any worse or any better, just always tired with no physical endurance at all.
     CHF will cause these symptoms but all the research I've done on these drugs they gave me says the drugs will give me the same symptoms too. So with the latest test showing an EF of 50, do I really have CHF or am I just paying really good money for a drug-induced lookalike? I am supposed to see another heart doctor with the VA but in the meantime I'm curious to see if there are any opinions out there. I am sort of mad about living the last year with the mindset of a year to live if it's not really true. Thanks, John. jgevans2004@hotmail.com
 
Jon's note: You might want to read up on diastolic heart failure for starters, then make sure you see a cardiologist who treats mainly heart failure patients. See chfpatients.com/faq/dhf.htm.


Paul G, April 14, 2005 - Hello, I just wanted to make a follow-up post on my problems with Xanax withdrawal. Well, I finally saw a psychiatrist Monday and found out that I was having withdrawal symptoms because I suffer from depression in addition to anxiety and insomnia. Apparently, the Xanax temporarily treated my anxiety and depression symptoms (including insomnia and fatigue) but when I reduced my dose, they came back. The psychiatrist therefore thought that I should stop Xanax and take a more appropriate drug that treats both anxiety and depression. She had me start Mirtazapine, a non-addictive antidepressant. I'm currently taking 0.25 mg Xanax and 7.5 mg of the new drug right before bed.
     The hope is for me eventually to take 15 mg of the new drug and stop Xanax altogether. Does anyone have experience with Mirtazapine? Apparently, the drug needs to be in your system for a couple of weeks before it starts working well. Thanks again to everyone for their concern and responses. Paul G. pwgleason@stritch.edu


Lori K's April 14 reply to Julie G's April 8, 2005 - Hi Julie, my CHF doctor swears by Q-Gel, a form of Coenzyme Q10, that is said to have superior absorbtion and blood level. The 30mg geltab is said to be equivalent to 120mg of actual coenzyme Q10 after using it for a week or two. I buy it from Epic4health.com for 11 dollars a bottle of 60, and take one a day. It is the identical labeling and product formula that my local doctor sells for 40 dollars a bottle. Good luck and I hope this helps. Lori K. thegoof86d@aol.com


Lori K, April 14, 2005 - Hi everyone, and of course Jon. I am so happy this site is up and running again, I truly felt like something was missing in my life without it! I hope my donation helped and even more importantly, thank you Jon for your unbelievable committment.
     I was hoping someone might have some insight into switching beta-blockers and how to do it safely. I am on Coreg 12.5 BID. I have asthma and my new regular cardiologist thinks the Coreg may be aggravating my asthma too much and also it has caused me a 10 pound weight gain. My heart rate has been running in the 80ish range versus 60 lately. I need more beta blockade and my cardio doc wants me to add Zebeta (I used to be on this) to the Coreg and then go down on the Coreg and up on the Zebeta. I had my CPX (Vo2max) test yesterday so I should have more info on heart versus lung as the problem by tomorrow.
     Has anyone switched beta-blockers? How did the doctor do it? My EF was last at 48% in August and that has been stable for 4 years. I was on the treadmill for 15 minutes yesterday, and it was a modified Bruce protocol that was supposedly harder than the heart failure protocol. Today I am exhausted. Any help is appreciated! Lori K. thegoof86d@aol.com


Marsha H, April 14, 2005 - Hi, My doc added Diovan to Toprol-XL about 6 weeks ago. I have not done a good job of monitoring my blood pressure since then, but have gradually felt worse and worse. Today, my blood pressure in late afternoon was 80/52, which explains my increased fatigue. The Diovan was added after a mitral valve problem was detected and then partly resolved, but I am wondering what blood pressure reading would suggest that this is not the right combination for me. I have DHF with an EF of 35% and have had few symptoms other than this sleepiness that is really pulling me down. jeffsmimi@earthlink.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.

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