The paperwork never ends The Archives
March 1-15, 2006 Archive Index CHFpatients.com

Vicki W 3-2     thank you all
 
Sandy N's 3-2 reply to Ben B's 2-28     that's great news!
 
Jane H 3-2     up-and-down EF, can terror affect EF?
 
Tom S 3-2     seek ICD experiences
 
Joseph A 3-2     seek Maze procedure experiences
 
Scott B's 3-2 reply to Ben B's 2-28     that's good news
 
Jean R 3-2     could my CHF be coming back?
 
Tony M's 3-2 reply to Debra S' 2-28     I'm still here
 
Jon 3-5     thank you
 
Sandy N's 3-5 reply to Tom S' 3-2     ICD/pacemaker experiences
 
Peter S' 3-5 reply to Tom S' 3-2     ICD/pacemaker experiences
 
Julie B's 3-5 reply to Tom S' 3-2     ICD/pacemaker experiences
 
Jeannine L 3-5     can I have another child?
 
Ann M 3-5     seek vertigo experiences with CHF meds
 
Jon 3-7     haven't given up yet
 
MaryAnn H 3-7     what supplements should my son take?
 
Diane S 3-7     seek metformin experiences
 
Brenta D's 3-7 reply to James N's 2-26     seek ICD/pacemaker improvement experiences
 
Carol K 3-7     will I be on these therapies forever?
 
James B 3-7     how can I control my edema?
 
John 3-7     does anyone get anxiety from ACE inhibitors?
 
Mike C 3-7     does neurontin cause side effects in CHFers?
 
Tom S 3-7     thanks to all for replies
 
Sandy N's 3-7 reply to Ann M's 3-5     vertigo experience
 
Stephanie H's 3-7 reply to Tom S' 3-2     ICD experience
 
Natalie W's 3-7 reply to Jeannine L's 3-5     pregnancy and CHF experience
 
Rosie O 3-7     how can I help my dad get some sleep?
 
Joseph P 3-7     seek a-fib experiences and info
 
Holly 3-7     could sure use some encouragement
 
Carla's 3-7 reply to Jeannine L's 3-5     pregnancy and CHF experience
 
Marilyn V 3-7     glad I found this site
 
Hanna S 3-7     seek Social Security information
 
Roger G's 3-7 reply to Tom S' 3-2     ICD experience
 
Maryann H 3-10     further information on my son
 
Heather S 3-10     still here
 
David W 3-10     even after time, improvement is possible
 
Clair 3-10     seek suggestions
 
Jon's 3-10 reply to Clair's 3-10     for what it's worth
 
Jon 3-10     I could sure use your help
 
Jen O 3-10     seek ideas for nursing assignment
 
Scott B's 3-10 reply to James B's 3-7     diuretics
 
Jon's 3-10 reply to Scott B's 3-10     general diuretic information
 
Marian V's 3-10 reply to Rosie O's 3-7     sleep issues
 
Cecilia C 3-10     supposed phone interviews offered
 
Bud J 3-10     implanted device experiences
 
Jon's 3-10 reply to Bud J's 3-10     implanted devices - educate yourselves first!
 
Jon 3-14     been a little sick
 
Peter S 3-15     stress test measurement questions
 
Jon's 3-15 reply to Peter S' 3-15     stress test measurements
 
Bill M 3-15     seek milrinone, Primacor, inotropes, IV drug experiences
 
Jack D 3-15     metformin, diabetes, and more
 
Steve B 3-15     does belly fat make CHF worse?
 
Bart B 3-15     seek CHF doc in Arizona
 
Jean R 3-15     EF got seriously bad after stopping meds
 
Roger G's 3-15 reply to Scott B's 3-10     Lasix doses
 
Candy K 3-15     what could this feeling be?
 
Brian M 3-15     where is all the info?
 
Jon's 3-15 reply to Brian M's 3-15     try these pages
 
Kay G's 3-15 reply to John's 3-7     don't accept anxiety as a side effect
 
Jenny B 3-15     seek suggestions on my dad's pain
 
Barb N's 3-15 reply to Diane S' 3-7     metformin experience
 


Vicki W, March 2, 2006 - Hello, My husband has a long list of medical issues which I may get into later. I went online looking for some information on ejection fractions, and ended up at this site. What a wonderful lot of information. I have learned more from reading what you have all posted than from all the doctors. Thank you all. gabs07@comcast.net


Sandy N's March 2 reply to Ben B's February 28, 2006 - Hi Ben, For heavens sake, never say you're sorry for bragging. We all should be dancing in the streets when we are able to feel better. CHF is not nice and I too have experienced the horrible sickness, and am also able to brag that I feel so much better now that I'm in my third year. I have a great doctor and have taken it upon myself to do the right things for my health. My down days are few now. Life is wonderful! bleuskiiisgrl@yahoo.com


Jane H, March 2, 2006 - Hi, In October of 2005 I had the misfortune to be referred to an internist at Hopkins who, seeing my high blood pressure and an irregular EKG he did in the office, immediately put me on 25 mg of Toprol-XL and sent me down the hall to a cardiologist, who found favor with the Toprol-XL. My symptoms then were some discomfort in my windpipe (later found this was acid reflux) and a little chest pain/discomfort when I pushed the lawn mower. I'm age 65, female, weigh 100 lbs, and quite active.
     Within a week I developed increasing symptoms of heart failure (who knew?). In early November at a stress test a week after starting the pills, my EF was 45%-. There followed the next week an echo showing an EF now 30 to 35%. Then, one month later in December, a heart cath (sheer panic attack with much severe pleurisy-type chest pain/lungs for a month after that) showed an EF now 20 to 25%. In the meantime I had stopped the Toprol-XL.
     Another echo within a week of the cath showed EF at 15 to 20%. All this with increasing symptoms of fluid in my lungs and breathlessness not seen before. The cardio doing the cath thought I had left bundle branch block/dilated cardiomyopathy and mitral valve leakage. Needless to say, I was terrified and no one offered much hope. I started Coreg about 2 months ago at 3.125mg once a day plus 20mg Lasix with immediate improvement. I also started CoQ10 and vitamins. Now, I also exercise multiple times a week on treadmill, weights, and speed walking with no problems.
     I finally got the word from the cardio about a month ago that there are no arhrythmias so no need for ICD or surgery. He had previously vowed I needed both. Lots of terror kind of for nothing.
     I have asked for a second opinion from Cleveland Clinic regarding fixing the leaky valve and they asked for a TEE, which showed a normal valve, only a mildly dilated upper left heart but an EF of 25 to 30%. The rest looks pretty normal, a far cry from the dire pronouncements of the heart cath cardio's assessment, who thought I could drop dead at any moment. Since then I've seen 2 cardiologists in my hometown, who pretty much say, "Just take your pills."
     I am baffled by this up and down EF. Clearly I am climbing stairs, exercising hard, not breathless - not perfect but a whole lot better. Does terror affect EF? I noted on the report from Hopkin's cardio that the blood pressure variation seemed to affect mine at the TEE? I admit I had a panic attack during the cath and also during the third echo that was to be followed by a TEE, but was not. For the last TEE I was pretty sedated and that was better.
     No one seems able to really explain what's happening and I have come to hardly trust anyone, at this point. hssmdpets@aol.com


Tom S, March 2, 2006 - Hi everyone, My cardiologist, who is never one to turn down a paying customer, has finally decided that I am a candidate for an implantable cardioverter defibrillator (ICD) now that Medicare has included my class of patient in an apparent study of the devices. I would be interested in hearing from those who currently have the device and their experience with it. According to the cardiologist, I may also be a candidate for a biventricular type device which causes the heart to squeeze a bit more effectively.
     I have heard some horror stories about ICDs and that they can pack an unexpected punch that practically knocks the implantee out. I also am a bit wary when I am currently seeing TV advertising by ambulance chasing lawyers who are trying to start another highly profitable (for them) class action lawsuit against ICD manufacturer Guidant Corporation. Thanks for any information you can give me. bigheart@muchomail.com


Joseph A, March 2, 2006 - Hi, Has anyone had a Maze procedure done for a-fib? chfeer@earthlink.net


Scott B's March 2 reply to Ben B's February 28, 2006 - Hi Ben, I think I speak for a lot of people when I say the people on Jon's site are very happy for your recovery. By relating your story, it also gives us hope that we can get better as well. I hope people continue to share their positive stories of recovery. Thanks, Scott Brown. kitchenerguy@rogers.com


Jean R, March 2, 2006 - Hi, I was treated for idiopathic cardiomyopathy in 1999. I did well on medicaions. In 2004 my internist stopped the maintenance dose of Coreg. This past month I have had shortness of breath, cough, fatigue, rapid heart rate. I am having several tests. I think it is CHF again because the symptoms are identical as in 1999 but am having a hard time getting the doc to listen to me. What do you think? drrusch@ties2.net
 
Jon's note: He did not follow the official treatment guidelines which say you should stay on your beta-blocker for life even if heart function returns to normal. You need to get back on a beta-blocker and you need a new doctor who knows how to read.


Tony M's March 2 reply to Debra S' February 28, 2006 - Hi, I want to Thank Debra S for helping me to get into Pittsburgh's study. I didn't get my stem cells but they found out I have a lung issue that causes carbon dioxide to stay in my lungs when I exhale. I also have a couple of small nodules on my lungs so the stem cells are out of the question while I have a lung tissue problem so they want me to have my lungs checked out.
     I am a nonsmoker and always will be, but I have had cardiomyopathy since 2001 and complained of shortness of breath since it started. At Pittsburgh they figured out I had a low ejection fraction. My fainting had always been done when my ejection fraction was up and they figured it out - it was my lungs and they had been bad all along. I was not getting treatment all along either. So when I felt good and took off I fell out from feeling good.
     I had an upper body scan and they saw a 4mm nodule and I have a high carbon dixoide level that stays in me when I breathe out so I have a feeling of fainting very easily when doing something. I also am a 1/4 Native American. My mother's grandmother was full-blooded Cherokee and my dad's grandmother was 1/2 Blackfoot. So with having darker skin I didn't look like I was low on oxygen the way most people would.
     Since this started I have had 6 surgeries and pain would make my blood pressure run up and that makes me color up when I should be paler when my oxygen levels are low like on most people. That's how most doctors missed it but I still should have had a blood gas test and it would have been all that would have been needed. The fact when this all happened I told the cardiologist I couldn't smell anything and at Pittsburgh they were dumbfounded that the doctors here didn't jump all over that. They claim right after a viral attack that losing your sense of smell is a sign or warning that you had lung problems. I guess they don't teach the same everywhere but I do have some new friends in Pittsburgh and some good ones everywhere else, and also on Jon's forum. Take care, Tony. ynotmyrick@yahoo.com


Jon, March 5, 2006 - Hi everyone, I just wanted to say thank you to the 16 people who made a donation to CHFpatients.com in February. Since it's my only income, I greatly appreciate it. February was a very tight month income-wise.
     I seem to have gotten the flu, exactly the same as I got roughly a month or so ago. It seems my body can't shake it so it comes back in a really nasty cycle. Hopefully, at some time the stuff will die and leave me be. For now, it has really knocked me down but I did get some info up on the New Page the other day.
     More posts tomorrow as I start catching up again.Jon.


Sandy N's March 5 reply to Tom S' March 2, 2006 - Hi Tom, All I can say about my ICD/Pacemaker is that it has helped me more than I thought it could.The prochedure was easy and I was out of the hospital in 24 hours. Healing at home was a snap. I have not been zapped yet; when it does zap me, it will be because I need it! I have so much more eneregy now and my heart is beating at a more normal rate than when I was first diagnosed with CHF.
     It has been a year and 3 months since being implanted and I think it was the best thing my doctor did for me. I also got a postcard from an attorney asking me to sign up for the class action suit against Guidant. Why on earth would I want to do that? My brother did not have the good fortune to have such things 18 years ago, when he died from heart failure. I wish you the same healing I found with mine. Good luck to you! bleuskiiisgrl@yahoo.com


Peter S' March 5 reply to Tom S' March 2, 2006 - Hi Tom, to ICD or not to ICD is an interesting question and I think you are quite right to explore the pros and cons. I, and I am sure others, would be happy to comment, but perhaps you could be more specific as to exactly what your cardiac problems are, what reasons your doctor gave you in recommending an ICD, and what your echo or other tests show as your estimated ejection fraction. PeterSperl@cs.com


Julie B's March 5 reply to Tom S' March 2, 2006 - Hi Tom, I've had a BiV pacemaker for almost a year now (March 10th). Two months after I received it, I had my first and second shocks. I was aware of the first shock. I know many people have had different experiences but mine didn't hurt at all. It just felt like something flipped in my chest. I felt I was going to pass out so I laid down. It was after I laid down and had passed out that I got the second shock. My heart rate had reached 300 so I am a firm believer in these devices! If I hadn't had one, I would have died. If your doctor thinks you need one, I'd tell him to schedule it! Good luck with your decision. jbeery827@one-eleven.net


Jeannine L, March 5, 2006 - Hello, I have IDCM and am currently class one with a 43% EF. I am 30 years old and would like to have another child. However, my previous pregnancy left me in class 3 with a 30% EF. I take digoxin, lisinipril and metoprolol. I understand that I can't take an ACE inhibitor during pregnancy, but I don't think I can stop taking it now that I'm on it. Doctors don't seem to like to give a straight answer when it comes to pregnancy. My OB told me when I was in class 3 not to have anymore children but now that I'm feeling well, I'm wondering if it is an option. Unfortunately, my OB left the area. Does anyone else have any experience with this? Thanks, Jeannine. jeannine_lewis@yahoo.com


Ann M, March 5, 2006 - Hello all, Yesterday I was diagnosed with vertigo. The reference information says it could be caused from taking medications such as Lasix and Aldactone, both of which I'm taking for CHF. It just doesn't seem fair. Does anyone else get vertigo from their meds? OptimeAnn@Yahoo.com


Jon, March 7, 2006 - Hi all, As you have noticed, I have been under the weather. The virus/infection question has apparently been decided in favor of me having an infection in my head (how's that for leaving an opening for jokes?!) and I am on my second round of more serious antibiotics. We'll see how it goes. Jon.


MaryAnn H, March 7, 2006 - Hi Jon, What vitamins should my son take who has IDCM? Right now he is taking Coreg, Altace and a baby aspirin. He also takes 150 mg of CoQ10. I have read about L-carnitine and rose hips. Is this something he should be taking? He does not have heart failure now and a BNP test showed he never was in heart failure. Any suggestions would be appreciated. maryannhall1958@hotmail.com
 
Jon's note: How old is he and what caused him to be diagnosed - what sent him to the doctor and made cardiomyopathy apparent?


Diane S, March 7, 2006 - Hi everyone, I am 43 and have CHF with an EF of 35 to 40% for 6 years now. I also have diabetes type 2. I know there are risks with metformin, I am considering it anyway. My question: Is there anyone out there who is or has taken metformin? cotu@sbcglobal.net


Brenta D's March 7 reply to James N's February 26, 2006 - Hi James, I too have just received an ICD/pacemaker and I have noticed some slight improvement in my shortness of breath since I got it about 6 weeks ago. But I am nowhere near where I would like to get. How long did it take for you to notice how much better you felt? bdavis66@midsouth.rr.com


Carol K, March 7, 2006 - Hello, I had COPD, CHF, hypoxemia, anemia and pneumonia. I am on oxygen all the time since September 17th, when I went to my doctor and my oxygen level was 68%. He immediately called an ambulance and sent me to a hospital. I was in for 6 days with pneumonia. I went for my checkup as I was tired and had swollen ankles and legs. I never had any heart problems before.
     I wonder why he put CHF on my medical papers. Do you think I will have to be on oxygen for life? I smoked for 42 years, 3 packs a day before I went to hospital when I quit cold turkey. I am never going back. I do crave cigarettes a lot though. The doctor told me 4 years ago I had emphysema. Now he doesn't mark that down. I wonder why.
     Are any of you on oxygen also? I am 68 and live by myself. I am on albuterol 4 times a day and budesonide 2 times a day with one Lasix once a day. Do you ever get off these meds? Please try to answer me. Thanks. ckuehn5056@aol.com


James B, March 7, 2006 - Hi, I had my heart and kidneys go haywire because of too much diuretic. Now the doctors won't give me enough to keep my lower legs and feet from swelling. Does anybody have a clue? I am taking 120mg Lasix in the morning and 80mg in the evening. I used to take that much Lasix plus 5mg zaroxolyn and 12.5mg Aldactone twice a day. jamesallen@gci.net


John, March 7, 2006 - Hello, Does anyone else get very anxious from the ACE meds? My doctor says that can be as frequent as the cough side effect. Marine0311@aol.com


Mike C, March 7, 2006 - Hello, Does anyone know if Gabapentin (Neurontin) have any side effects for someone with CHF? emike_c@hotmail.com
 
Jon's note: It causes edema (swelling) in a significant number of non-CHF patients so it is likely to promote fluid retention in CHFers.


Tom S, March 7, 2006 - Hi everyone, First I want to thank you all for taking the time to give me good honest answers about an ICD. It has pretty well sold me on the merits of the unit even though I was a bit suspect at first. For Peter, my EF was measured via cath as "immeasureable" a year ago. Echos are not terribly reliable for measuring EF so they do guesstimates when they get as low as mine. The latest guesstimate is around 15% or 20%. I know it probably is somewhere between a 5% and a 10% primarily because I can't walk more than a few feet without my heart racing and getting out of breath. Thanks again and I am taking your responses plus others I have received via direct e-mail seriously. Best wishes to all. bigheart@muchomail.com


Sandy N's March 7 reply to Ann M's March 5, 2006 - Hi Ann, I woke a few months ago with a bad case of vertigo. At the time, I had no idea what was wrong except I could not get up, I was that dizzy. I made it downstairs to the sofa and got very sick (vomiting). I had My ICD checked the day before and thought maybe it was from a wrong adjustment by the technician and after 3 hours with it I called 911. My doctor kept me in the hospital for three days until all signs of vertigo were gone.
     I do take all the usual meds for CHF but my cardio and a neurologist both said it had nothing to do with meds or my ICD. It was common for a person with CHF to get this once in awhile, they said. Mine lasted for almost 24 hours. I for one hope to not get it again. They both said it was a classic case of vertigo and was not uncommon. bleuskiiisgrl@yahoo.com


Stephanie H's March 7 reply to Tom S' March 2, 2006 - Hi Tom, As you have probably read elsewhere on this site, there is a difference between an ICD, ICD/pacemaker, BiV pacemaker, etc. If you are considering a plain old ICD, it will not make you feel any better physically. It is like having your own personal emergency medical technician onboard should the need arise, to get your heart back into a normal rhythm. It only "works" if it needs to.
     I had my ICD implanted in December of 2004. The procedure itself is fairly simple. It was done as an outpatient, although I did have to stay in the hospital for 23 hours. Fortunately, I have not been shocked, but have a friend who has been shocked a couple of times and yes, it did knock him to his knees. Me personally, I would rather take the risk of being knocked to my knees that experiencing sudden cardiac death.
     You should also consider going to an electrophysiologist for a consultation, and I am surprised that your cardio doc didn't refer you to one. Good luck in whatever decision you make. howsares@saic.com


Natalie W's March 7 reply to Jeannine L's March 5, 2006 - Hi Jeannine, I do have an experience with pregnancy and CHF. I am 42 years old (diagnosed at age 35) and have CHF and have an ICD. I am 100% paced. At 38 I got pregnant and was told it was a high-risk pregnancy with a 40% chance of dying during childbirth. I was also taking an ACE inhibiter which I stopped with no problem. I also discontinued some other meds (klonipin) even though the doctors said they would not hurt the baby. I did continue to take diuretics.
     I had my son 6 weeks early. He was fine. The birth went perfectly with no complications. Nine months later my ICD went off for the first time. I started to gain a huge amount of water. It took a few months to figure it out but my heart had deteriorated and now 3-1/2 years later, I need a heart transplant. Was it because of the pregnancy? Who knows? I think it played a part in it but I probably would have reached this point anyway. The pregnancy just hurried it along. It's a seriouse decision. Having the energy to take care of a baby when you have CHF can be really hard! I hope this helps. Take care. clanwilson@earthlink.net


Rosie O, March 7, 2006 - Hello everyone, Dad is at the end-stage of his heart failure. He is 74 years young and I say that because his spirit has always been at age 30 or so. He has been in heart failure for some years now. He suffered a minor stroke at the beginning of October of 2005 and had a minor heart attack at the end of that month. He's had his ICD since July of last year and it hasn't kicked off ever. I've ordered him a hospital-type bed so he can sleep, which he doesn't. I bought him the 24 hour monitoring service in case something happens and nobody hears him, which he finally started wearing. We watch his weight daily, monitor his blood pressure daily, and he takes his meds like clockwork. We've done everything humanly possible for him and wish I knew what else I can do for him I would.
     For the past few months (getting worse now) he cannot sleep. He takes a strong sleeping pill and it works for about one hour and then he's up. I tried to give him Xanax, hoping that would help but it did nothing. He says he has a jumpy stomach (of which he was tested and they said his esophagus is a little inflamed for which they gave him some pills - but nothing. He just can't sleep.
     I think it's due to the fact that he knows he is so ill and is afraid. I've asked him and he says no but I don't think he would ever share that with me, knowing how I worry about him. Any advice would be greatly appreciated. oboyrosie@aol.com


Joseph P, March 7, 2006 - Hi, I have had a-fib all my life and I cannot honestly tell if I am in a-fib or out. What do you do then? The machines and docs say I am in it constantly. Why can't I feel them as some of you discribe? I have had the works to get it to stop and everything is always temporary - ablation, cardioversion, meds, now a Maze procedure. chfeer@earthlink.com


Holly, March 7, 2006 - Hi all, I haven't posted in awhile but have been keeping up. There really is a lot of good info and advice on this forum. I just had a second Vo2max test last Monday and didn't do as well as I was hoping. I scored a 15 when I was at 18 in July, 2005. My doc was a little discouraged but I just have to keep trying! I have been having a lot of chest pain again and had another cath done last Friday which showed my 3 stents to be open but they are concerned with the way they look on the outside and want to start to follow that. Has anyone ever heard of problems on the outside of stents? I know I keloid scar and I was wondering if maybe that was what was going on. I have to have a CAT scan in a few months to check. I still am having a hard time with all ACE meds because they drop my blood pressure to levels that make it difficult to function.
     Any words of encouragement would be very welcome at this point! Thanks for listening. Holly. holly92756@zoominternet.net


Carla's March 7 reply to Jeannine L's March 5, 2006 - Hi, I used to frequent this board from time to time and again, want to thank Jon for putting this all together. As far as getting pregnant, I began this journey 2 years ago when I was diagnosed with viral cardiomyopathy with an EF of 20%. I went from doctor to doctor (including 3 high-risk OBs) and each told me absolutely not! Even after my EF reached 40% and my heart had reduced in size back into the normal range.
     So I ended my ride with a hysterectomy in December, 2005. I couldn't ride the rollercoaster anymore. I know this probably isn't what you'd like to hear, but I don't have any children so thank God every day for the one you have and live each day to the fullest. carrob03@yahoo.com


Marilyn V, March 7, 2006 - Hi, I have been looking for a congestive heart support group for a long time. I found Well Spouse Assoc and it is great but there are not many who have CHF. Finally this morning I found this site. Thank goodness. I'm the caregiver of a man aged 64 who has CHF and has had it for almost 10 years. He is in the end stage of the disease. I hope that this site can help us cope. It is not easy at times as you all know. Thanks for being here. Marilyn. vogskeeter@earthlink.net


Hanna S, March 7, 2006 - Hi, My husband passed away a month ago from heart/lung failure. Social Security tells me that I may be entitled to survivor's benefits. Are those benefits based on the amount he got under disability ($700+ per month) or are they based on what he would have received under normal Social Security retirement? If so, how do I find out what that amount would have been? Any other information you may have would be appreciated. hanna@televar.com


Roger G's March 7 reply to Tom S' March 2, 2006 - Hi Tom, I had my ICD implanted in July of 2005. Why? Because I have had a few episodes of syncope (passing out) and I have had some high heart rates as well as an EF of about 15%. The procedure was quite painless as well as the recovery. Have I been zapped yet? Not yet but it is also set to start pacing when my heart rate goes below 45, which it has done a few times. Do I feel better? No, but it is nice to have an ICD onboard 24 hours a day. Good luck with your decision. rogergthree@earthlink.net


Maryann H, March 10, 2006 - Hi Jon, My son was diagnosed at age 22. He had no symptons at all and went for a college physical at college for swimming and they found he had quite a few PVCs and was in bigeminy, and sent him right away to the hospital for an EKG, chest x-ray and echo. His EF was 15 to 20% with an enlarged heart. His heart is no longer enlarged and his EF is now 55%. mahall1958@hotmail.com
 
Jon's note: Honestly, he could take creatine monohydrate but the only supplement I would call necessary at this time for him is magnesium in small doses.


Heather S, March 10, 2006 - Hi dear friends, Never lose heart. I am still here (from 1999), still on oxygen 24/7 and still letting people know that this is the best heart site on the web. I turn 60 this year. Jessa is now 21, has a degree and is off to Europe this year. Danielle is 18 and has just begun university. Mike is still nearby and very supportive and Dave has moved on to make a new life for himself. I made many friends on this site. Sadly, Bill Drummond has died, but although we will never meet, my friend Roz has become my kindred spirit. My thanks still go to Jon for this tremendous contribution to humanity. Heather. heather46@ozemail.com.au


David W, March 10, 2006 - Hi, I just want to tell everyone to have hope. I have been doing great. I started a job Monday and no one even knows I am disabled. I am not as fast on the computer as the others but I am still able to learn. I am on full-time training for a month, then go to my part-time shift of 9:00 AM to 2: PM five days a week. I have to drive 35 miles but it is kind of fun. I never thought with my weak ticker I would look forward to working again but I am.
     It took a long time to get better but I got there. My EF probably is not that great but if I feel good and can function better, who cares? I just want to give the people who are having a hard time the knowledge that you can get better with your meds and doing what the docs say. It doesn't always happen overnight. It can take years like it did for me. If you don't have much of a heart left like me, you just have to get what you have left working good. It can be done. wilsond537@aol.com


Clair, March 10, 2006 - Hello, My wife was diagnosed with chf last November. Her EF was 10 to 20%. The cardiologist told us then that 1/3 of patients get better, 1/3 stay the same and 1/3 get worse. She had a echo done on 01/20/06 and we were told it was basically the same, maybe more toward 20%. Two doctors at the office told us that since she did show any sign of improvement yet she would not get any better. While listening to them talk I felt like we were getting a death sentence. It was a nightmare. They both recomended an ICD be installed. I asked my insurance company to send her to the Cleveland Clinic, which is 300 miles away. We were hoping to get on their heart transplant list.
     After all the testing we were shocked when they told us that her EF was 35% and almost all her test results were normal. They thought her chances of getting much better were very good. They made some changes to her meds and recomneded a rehab exercise program. They aslo strongly recommended to hold off on the ICD for 3 months to see if she gets better. Since returning home, her doctors are still telling her she will not get better and should have the ICD implanted now, leaving us in the middle.
     We decided to wait. Right now we are arguing about her doctors. I want to find a new office but she's been told some nurse friends that we're going to the best place in town and should not leave them. I have the feeling right now that her doctors would love to see no improvement so they can say I told you so. I am also concerned about her meds. She is taking Coreg and Atacand along with some diuretics and I think, potassium. I've read in this site and others that an ACE inhibitor is strongly recomended. We found out early on that the ACE drugs gave her a fairly bad cough and she cuts hair in a salon and the coughing bothered people. So her doctor put her on an ARB. Should she go back on the ACE and live with the cough or is the Atacand good enough?
     Also is anyone else on Atacand? If so, how are your results? One thing I've found from reading posts here and other sites is that heart failure treatment seems to be very inconsistent. I'm sure this is partially due to no two cases being completely the same, but it would appear to me that there should be some standard procedures when fighting this problem. clair.weber@us.abb.com


Jon's March 10 reply to Clair's March 10, 2006 - Hi Clair, There are very clear standards - they are called the "official treatment guidelines." The problem is that doctors don't read them and when they do, they rarely follow them accurately. See chfpatients.com/faq/guidelines_99.htm .
     I say stick with the Atacand. It is in compliance with the guidelines. On the other hand, I suggest seeing a different heart failure specialist as soon as possible. Jon.


Jon, March 10, 2006 - Hi everyone, I am sorry to be on-and-off on the message board posts but my own health is not good. I am scheduled to present "A Patient's Perspective" at a national medical conference on "Ethical Issues in Care for Persons with Advanced Heart Failure" middle of next month. This is not a theoretical exercise. I am listed with NIH as a presenter. I'm giving this talk unless I'm too sick to travel. Bear with me please.
     This has nothing to do with any posts or e-mails I have received but I pretty upset about how doctors view us as heart failure patients. Doctors aren't listening, not really. I have a possibly once-in-a-lifetime chance to influence some of them. I won't go off on them, which would accomplish nothing at all. I know their language and I will put that into use.
     Patients listen to patients. It is time doctors did as well. I have the numbers to back me up on this. Almost 3 million of you talk to me one way or another each year. Show me a cardiologist with this volume of input. Please, e-mail me at conference_ideas@chfpatients.com with whatever you want a roomful of world-class heart failure cardiologists to hear. I can't over-stress this. What do you need from them? I don't need rants, I don't need gripes, I don't need specific problems - I need what you believe they need to hear from real CHFers to persuade them to treat their CHF patients more effectively.
     I can tell them my patient perspective, but that invalidates the whole point of running this web site, the whole point of 10 years of very hard work. I want to give them your perspective. I can't do that if you don't give it to me! So cough it up, guys. Read our privacy policy. Nobody's going to see your message but me, my wife, and my daughter if any of them - all seasoned heart failure veterans. No one else, period, for any reason, ever.
     I don't make any money off this trip and presentation. They pay for hotel, meals, and plane fair. I pay for the energy and stress involved and any incidental expenses. I want to make it count and I need your help; not money, rather your honesty. Please e-mail me at conference_ideas@chfpatients.com with your thoughts. Unlike most web sites, I guarantee a real person - me - will read every word and take it seriously. There will be no replies but I will incorporate your thoughts into my presentation. You count, you matter - I will see to it.
     For years, I have had a truly excellent heart failure specialist. None the less, I see the need for such doctors to hear it straight from the horse's mouth, so to speak, because even he makes me want to scream at times. Hey, the doctor hasn't been born who can intimidate me, and I mean to say what I mean to say, so please, put your words into my mouth. Together, let's start making a difference.
     This puts me waaaay behind on web site updates that need doing. Thank you for your seemingly everlasting patience and support. My readers are quite simply the best and anyone who says differently can deal directly with me. If it weren't for you, I would honestly have quit doing this site years ago. I really hate being corny so I'll just take this chance to say thank you. You've made a bigger difference in my life than I ever will in yours. Jon.


Jen O, March 10, 2006 - Hello, I am a nursing student, set to graduate in August. I am currently researching for a presentation on CHF and the effect it has emotionally on patients and their caregivers. It would be helpful if you could respond with different emotions you have had since diagnosis, your coping mechanisms used to survive with this disease, and any observations or suggestions you have so that nurses can better care for you. I wish you all well. Thanks for your input! j.j.owen@tcu.edu
 
Jon's note: Please respond by e-mail.


Scott B's March 10 reply to James B's March 7, 2006 - Hi James, You state that you are taking 120mg Lasix in the morning and 80mg in the evening and that you used to take that much Lasix plus 5mg zaroxolyn and 12.5mg Aldactone twice a day. Is there a reason you take Lasix every day (twice a day)? Perhaps Jon can chime in here, but it seems like you were taking an awful lot of duiretic to be taken day after day.
     Do you follow a low-sodium diet (sodium promotes water retention)? Do you have fluid restrictions (typically, 2000ml (2 litres) is the limit, but 1-1/2 litres might be more effective for you. For myself, I was taking too much diuretic and I was feeling lousy because of it. My electrolytes were getting washed out with the sodium (in urine). I cut back my duiretics almost in half and now, 40mg is more effective for me than 80mg. While this is not possible for everyone, weighing yourself on a regular basis will lead you to the proper levels.
     Your weight (on a digital scale) will also confirm that you are retaining water at the same time you are experiencing swelling (confirming the swelling is indeed CHF-related). There are also other strategies you could investigate for reducing swelling (special stockings, elevating legs at certain times, etc.) Could you be more specific on what "haywire" means? I wouldn't be surprised if there was dehydration involved.
     Thanks, Scott B. kitchenerguy@rogers.com


Jon's March 10 reply to Scott B's March 10, 2006 - Hi everyone, I'll chime in but only in a general way. There a lot of things about diuretics in general that doctors don't seem to know or more probably, don't tell us CHFers. These are in no particular order but apply to diuretics:
     Aldactone (spironolactone) is not a diuretic when taken at 25mg per day or less. Yes, it does help us live longer but not due to a diuretic effect.
     Over-using diuretics will wear you out like nobody's business. They are not a required drug - they are "symptom-related." That makes them as Scott points out - necessary if you have fluid retention but not unless you have fluid retention.
     If you take diuretics, make very sure you have regular blood tests for blood electrolytes. See chfpatients.com/tests/routine_tests.htm for more on that. This is critical. Why? Blood potassium levels help control your heart beat. Too much or too little can lead to possibly fatal heart beat problems. Diuretics make you pee and potassium is one of the substances that exits along with all that pee. Other diuretics, like Aldactone, cause you to retain too much potassium, leading to equally dangerous high potassium levels. The only way to know is those regular blood tests. One every 2 weeks when starting diuretics is good. After stabilizing your heart failure and diuretic dose, one every 3 months will do unless you change a drug dose.
     Managing chronic CHF is a tightrope ride between dehydration and fluid rentention for most of us. Be alert for lightheadedness, excess fatigue, insomnia, and other symptoms that come with CHF but get worse with dehydration. Don't hesitate to call your CHF doc about these symptoms and don't allow a nurse of any kind to put you off - talk to your CHF specialist!
     Finally, all diuretics are not created equal. In my opinion, and this is backed up by trial data, torsemide (Demadex) is superior in every way to furosemide (Lasix) and I cannot understand why Lasix is still the drug of choice, unless it is sheer pressure by the manufacturer on doctors. I have taken torsemide for years at my own request and find it far superior. Lasix is less effective when taken within 2 hours of food - torsemide is unaffected by food. It lasts for at least 10 hours versus 6 hours for Lasix. Toresmide is 4 times stronger. You tell me, why aren't you asking for it?
     Finally, pay attention to Scott - a low sodium diet matters! I speak from 12 years of heart failure experience here. Jon.


Marian V's March 10 reply to Rosie O's March 7, 2006 - Hi Rosie, Your post about your dad sounds a lot like what I posted about my husband last August. He is 82, had an open-heart bypass 8 years ago, and his condition has gone downhill. When he was in the hospital last August, he was put on oxygen 24/7. At that time his condition was described as "end-stage" heart failure. He cheats on his oxygen sneaks outside or in the garage without it, but we are going for "quality of life" here and I don't make a big deal over it.
     He sleeps with it and uses it in the house. About sleeping, John has a lot of trouble with that, too. Does your dad live alone? That could make a difference. He might be worried about passing away in the night with no one around. Because we are going for quality of life, John and I have decided there is no big deal about sleeping all night. He isn't going anywhere in the morning. In fact, he gets up around 9, takes a couple pills with orange juice, goes back to bed & naps till 11:00. He takes Ambien, but what he does is, we cut them in half, he takes half, sleeps for maybe 3 or 4 hours, gets up, goes to the couch, turns on the television, watches for a while, goes back to bed and take the other half of the Ambien.
     He is also on Zoloft, which helps him to relax and not worry about not sleeping. We sleep in separate bedrooms. John sleeps with his cat Sparky, and I sleep with my cat, Streak. I know, Jon is a dog person, but we enjoy our kitties. Does your dad have a pet? Maybe you can tell your dad 8 hours sleep doesn't have to be all at night. That's for people who still have to get up and work for a living. Good luck, Marian V. queenie@coastalwave.net


Cecilia C, March 10, 2006 - Hello everyone, I am an associate at L.E.K. Consulting LLC, an international market research firm. We are currently conducting research on congestive heart failure in black Americans. As part of our research, we are trying to talk to black American CHF patients to get their views on CHF, the different treatments available, as well as treatment costs. The phone interview would last 15 to 20 minutes. To thank you for your participation, we are offering a compensation of 50 dollars US. So if you are a black American, have CHF, and are interested in participating in our research, please contact me at 617-951-9551 or email me at The deadline for the study is March 24th. We understand that these are difficult times for you, we really appreciate your participation in our study. I look forward to hearing from you. Cecilia Carriquiry, L.E.K. Consulting, LLC. 617-951-9551. chf_research@yahoo.com
 
Jon's note: Please note that this is not a toll-free number, which means you pay for the phone call. If it's not a scam, it should list a free number, a 1-800 number. Just a caution.


Bud J, March 10, 2006 - Hi, I have read many opinions relating to having an ICD implanted. I would recommend that you talk to your cardiologist about putting in a BiV (BiVentricular pacemaker). The BiV contains a pacemaker and a defibrillator so you get protection from that end. The thing is that BiV contains an attachment that is placed into your left venticle and can synchronize and coordinate the pumping action of your ventricles. I had a heart attack last year and could not walk 10 feet without gasping for breath. My EF was 20%. I had a biventricular pacer put in 5 weeks ago and I have felt so much better after the first few days. I exercise every day and do so many things I could not do before. It is fairly new but it can do wonders for you and your heart and your peace of mind. Budjoy4@aol.com


Jon's March 10 reply to Bud J's March 10, 2006 - Hi Bud, I have to weigh in here. There is a lot of confusion - which cardiologists are evidently not clearing up - about implanted devices. There are ICDs, pacemakers, combination ICD/pacemakers, BiV pacemakers, and combination ICD/BiV pacemakers. These are all distinctly different from each other!
     I could go through these one at a time here but I'd rather refer you to our implanted device pages, where it is all laid out in black and white. See chfpatients.com/implants/implants.htm.
     Current numbers show that about 1/3 of BiV pacer recipients don't get any noticeable benefit or get worse, 1/3 get slightly better, and 1/3 get very much better. There are no certainties here. ICDs will save your life if you have lethal ventricular arrhythmias but they won't actually make you feel much better if at all, physically.
     Educate yourselves, folks! It makes the difference between getting an 80,000 dollar piece of permanently implanted useless junk, or, drastically improving in many health aspects. Read, ask questions, demand answers you can understand, then make your decisions. Jon.


Jon, March 14, 2006 - Hi everyone, Well, I have a CAT scan of my head scheduled to see just how far this sinus infection has run amok. Until it's under control, I have no idea how far I will stay behind on posts. I'll do the best I can. This is the first day I have been out of bed for over 2 hours since my last post. Jon.


Peter S, March 15, 2006 - Hi all, Many of us are aware that ejection fraction (EF) can be measured/estimated by several different testing methods. A few weeks ago I had an echo that estimated my EF at 45 to 50% and only two weeks later had a cardiolite stress test that among other things showed an EF of 36%. I realize that EF can go up and down and there is some subjectivity to test analysis, but this seems an awfully broad range for just two weeks. Any comments? Comparing the two tests, is one generally considered more reliable than the other? This is probably more a question for Jon, but if anyone else has experience or information, it would be helpful. PeterSperl@cs.com


Jon's March 15 reply to Peter S' March 15, 2006 - Hi Peter, A nuclear stress test where actual exercise is used to stress the heart (rather than a chemical) is in general called "myocardial perfusion imaging." This is actually not used primarily to measure the heart's pumping and is not as accurate as a MUGA for that purpose even though they are in many ways similar tests. The stress test is designed to spot areas of the heart muscle that are not using as much blood "uptake" as they should. This usually means that this particular area of the heart has been or is currently being deprived of blood flow, pointing to a possible coronary artery blockage in the arteries that lead to that heart region.
     In general, an echo can have a margin of error up to +/- 8%, while a MUGA should be down in the no more than 2% off arena, while a cath should be pretty much dead accurate, please pardon the pun. I honestly don't know what the nuclear stress test margin of error is, but suspect it is much higher than doctors think it is.
     A chemical stress test, where no real exercise is used is less accurate yet for measuring heart function. Please keep in mind that all cardiac stress tests are designed for something other than measuring EF - that's why they don't do it as well. An abnormal result on a stress test means a more accurate, thorough test is needed - it is not an end result by itself.
     PET scans show an amazing amount of information but I rarely get into that because the equipment and procedure are both so expensive very few of us will ever have one. As far as I know, the American Society for Nuclear Cardiology hasn't put out new imaging guidelines for the heart since 2001. I hope it helps. Jon.


Bill M, March 15, 2006 - Hello, Are any of you taking the drug Milrinone/Primacor and if so, how long have you been taking this drug and what are you and your doctor's expectations? On this web site's Official Heart Failure Treatment Guidlines, under Treating the End Stage Heart Failure number 11 states that if on a pick line using an inotropic drug, it can be part of a plan to let a patient die with comfort at home. Your comments are truly appreciated. billmurphyaz@att.net


Jack D, March 15, 2006 - (Jon's note: This one is going up later than the rest because I originally held it back due to potential problems with metformin and CHFers but Jack e-mailed me with an expanded version of the post so here it is.)
     Hi all, About metformin? It's a great drug and like all drugs, 50% of the people who take it are going to experience side effects simply because they have been told what the side effects are. If they hadn't read about them, then they wouldn't experience them. Try metformin plus byetta.
     Now I'll expound on my comments. I take Metformin. I take the maximum dosage and have for several years. I also do diet and excercise. If you are worried about side-effects, well, some of them are psychosomatic. If you are worried about contraindications then instead of worrying about what might happen if you take metformin, think about the alternative. If you have heart problems then you most likely have a doctor who gives you blood tests from time to time.
     Remember that diabetes ruins your kidneys, makes you blind, makes your extremeties numb so you can't walk and you can't tell when your big toe gets cut off with a lawn mower. Diabetes makes you gain weight, increases your cholesterol, and contributes heavily to heart disease. Diabetes makes you very susceptible to infection through your skin.
     All of this can be controlled, slowed down, or maybe even prevented by taking metformin. Byetta helps rebuild your insulin receptors so you may need to use less drugs and the two in combination do great things. So if your question is about risks, I think the greater risk is worrying about what might happen as opposed to what is definitely going to happen if you don't take metformin. maddjak@hotmail.com


Steve B, March 15, 2006 - Hi, Does belly fat enhance CHF? stevebonds@aol.com


Bart B, March 15, 2006 - Hi all, I'm a fairly new CHF paient looking for a CHF specialist in Tucson, Arizona. I have a good cardiologist but he is not a CHF specialist. Any suggestions? Thanks, Bart. bart@stbartport.com


Jean R, March 15, 2006 - Hi, My echo showed that my EF is 10%. My cardiologist is puzzled as to why my symptoms did not show up sooner than about a month ago since it is so bad. I am now back on Lasix, Lanoxin, Coreg, spironolactone and feel much better already. Five years ago my EF went from 10% to 49% after treatment with Coreg so this time I will not let anyone stop my beta-blocker. I also have Crohn's disease and am taking 16 Pentasa a day, that following my 3rd surgery for a resection. Thanks for listening. drrusch@ties2.net


Roger G's March 15 reply to Scott B's March 10, 2006 - Hi Scott, You were questioning James' dose of 200mg per day of Lasix. The PDR tells us that Lasix has a maximum dosage of 600mg per day. rogergthree@earthlink.net


Candy K, March 15, 2006 - Hi, I have some symptoms associated with heart failure. I have a breathing problem, especially during activity. I am tired and sluggish, and am having a hard time losing weight even though I am sticking to a strict diet. I feel like I have a heaviness just below my breasts, mainly on the right side. I have been experiencing this for 8 months.
     I have had heart tests, a a stress test and echocardiogram plus some CT scans. They said my heart is fine. Is it possible they could have missed something? Please help. I don't know what to do next! kirganfarms@earthlink.net
 
Jon's note: Have your liver, kidney and lungs function been tested? You describe an area that could be affected especially by the lungs, liver or high right-sided heart/lung pressures.


Brian M, March 15, 2006 - Hi Jon,What happened to this site? Where did all the great links go to? I know it's been a while since I've been here, but I'm stunned! My condition has gotten worse, had to take early retirement from the pipefitter's union and am now fighting with SSDI. Can I still find the info about dealing with Social Security? Thanks and God bless! pipefitter5972000@yahoo.com


Jon's March 15 reply to Brian M's March 15, 2006 - Hi Brian, Try chfpatients.com/start_here.htm and chfpatients.com/index.html for pages leading to all the info that is still on the site - which is more than ever. Jon.


Kay G's March 15 reply to John's March 7, 2006 - Hi, In response to the question about anxiety and ACE inhibitors, I am age 45 with a diagnosis of an idiopathic cardiomyopathy at age 33. I have been on ACE inhibitors for nearly the entire time since my diagnosis: Capoten in the hospital, Vasotec for six years, an ARB Cozaar for 2 years, then added a beta-blocker and dropped the Cozaar for 2 years. All these drugs were taken without negative side affects. Intermittent episodes with Prinivil and Zestril both caused significant hive reactions. I had a one-night stay in the hospital nearly 2 years ago for a reaction after taking a Sudafed (also something you should never take!). In the hospital, they started giving me Mavik. I took it for 10 days total. In a follow-up visit with my doctor I told him about the unusually difficult time I was having with high levels of anxiety, feelings of paranoia, fears of the shower and water, fear of flying (I was a pilot before CHF), antisocial depressed feelings and significant fears of dying. I hesitated to tell him that I was developing suicidal feelings. He insisted that it was not the Mavik.
     I went home with a prescription for an antidepressant and a referral for a psychiatrist. Instead, I stopped taking the Mavik and the terrible feelings I had been having began to subside within a few hours of the first missed dose. He wanted me on an ACE inhibitor or ARB, and prescribed Cozaar. The feelings returned so I stopped taking it as well. I agreed to start taking Vasotec again after the feelings totally resolved and I felt up to it. I was never that happy with the Cozaar the first time I took it. It took me 4 months to be totally free of the horrible anxiety feelings completely. I did not start taking an ACE inhibitor again for at least another 2 months.
     Listen to Jon on his web site when he tells you that how you feel is one of the most important things in your treatment and management of CHF. Listen to what you feel no matter what your doctor tells you. I am taking Vasotec now. There are lots of ACE and ARB meds. You don't have to live with the anxiety attacks. mkg13@comcast.net
 
Jon's note: I can also say from personal experience that serious side effects from a drug can start after having taken the same drug trouble-free for many years. It happens.


Jenny B, March 15, 2006 - Hello, My dad has class 4 CHF/dilated cardiomyopathy. He's been getting this odd, but severe pain that travels from his shoulder to his immediate chest area over his heart. It's the worst when he takes a deep breath. He says it does not feel like it's his heart. I know that sounds strange, but it's not like he's getting chest pressure, shortness of breath with it, like symptoms of a heart attack. It's an odd pain that comes and goes. When he has it- it's pretty debilitating. If anyone out there has any information to offer I am all ears and would be most appreciative! He is on all the usual drugs, including digoxin, Coumadin, Toprol-XL and is wearing a defibrillator vest due to his risk of sudden cardiac death. Thank you. jennyb4me@yahoo.com


Barb N's March 15 reply to Diane S' March 7, 2006 - Hi Diane, Regarding metformin, Currently metformin is not recommended for people with CHF. A related drug resulted in lactic acidosis, and the risk of this potentially fatal condition is higher in CHFers, particularly if kidney function is compromised.
     That being said, I have found using a low dose of metformin (500 mg) at night is very helpful in controlling blood sugar levels. I use insulin also, Lantus (split in two injections) and short acting Humulin (before meals). Using the metformin helps me reduce the overall necessary dose of insulin, which is good because insulin promotes weight gain and fluid retention as do the sulfonylureas, which act primarily by causing the pancreas to produce more insulin, and the glitizones like Actos which can cause severe edema and actually cause heart failure in some patients. If metformin alone (without a sulfonylurea or insulin) is used, the required dose to get blood sugar levels into the desired range is generally significantly higher, which could carry a higher risk of adverse side effects.
     Metformin acts primarily by reducing the amount of sugar put out by the liver (called hepatic glycogenesis) in response to stress or to lower than usual blood sugar levels. The liver puts out most of its sugar at night, so I use the metformin in the evening. I have used it this way for several years with no obvious side effects except for a metallic taste in the mouth during the first 1 to 2 months.
      However, this is just my personal experience. I recommend that you make sure your kidney function is normal before deciding to try even low dose metformin, and you not drink alcohol if taking this drug! protoplasm2@aol.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006 Jon C.

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