The paperwork never ends The Archives
September 16-31, 2006 Archive Index CHFpatients.com

Patrick S 9-18     seek the experiences of others
 
Mary C 9-18     sleep disorders and anesthesia
 
Jon's 9-18 reply to Mary C's 9-18     sleep disorders and anesthesia
 
Molly W 9-18     seek ablation experiences for tachycardia
 
Sharon L 9-18     ER experience, always scary
 
Robert M 9-18     depression has me really down
 
Chuck F's 9-18 reply to David W's 9-14     Michigan heart doctor recommendation
 
Georgia W 9-18     what now?
 
Curt S 9-18     seek CHF docs in New Hampshire
 
Cathy N 9-18     do these types drugs interact with heart failure?
 
Ben B's 9-19 reply to Curt S' 9-18     some confusing information there
 
Mary C 9-19     does Aldactone increase breast cancer risk?
 
Linda K's 9-19 reply to Stephanie H's 9-14     hot flash experience
 
Jon 9-19     hot flash experience
 
Gene G 9-19     seek experiences with anterior pituitary tumors
 
David W's 9-19 reply to Patrick S' 9-18     there is hope
 
Giorg 9-19     question - supplements and kidney function
 
Nancy P's 9-19 reply to Cathy N's 9-18     Boniva - haven't taken the prescription yet
 
Patricia Fox 9-19     research interviews in San Francisco
 
Scott B's 9-19 reply to Georgia W's 9-18     don't hang all hopes on EF
 
Jon 9-21     prep for colonoscopy procedure experience
 
Lu H 9-21     BNP level question
 
Scott L 9-22     seek advice now that I'm diagnosed with HF
 
Scott L 9-22     seek advice now that I'm diagnosed with HF
 
Penny R's 9-22 reply to Jon's 9-14     the green tea is decaf
 
Lori A 9-22     questions about LBBB & more
 
Patricia Fox 9-22     upcoming study makes time short to participate
 
Debra S 9-22     questions about exercise and afterward
 
Jon R 9-22     question about dentist visits and antibiotics
 
Jon 9-22     not caught up yet
 
Lowell P 9-23     kidney artery stent - seek others' experiences
 
David W 9-23     colonoscopies
 
Maryann H 9-23     ACE inhibitors versus ARBs
 
Karen K's 9-23 reply to Scott L's 9-22     doctors, assumptions, education, be your own advocate
 
Giorg's 9-23 reply to Debra S' 9-22     some possibilities
 
Suzette R 9-23     chemo, fluid retention and more
 
Jon's 9-23 reply to Suzette R's 9-23     chemo, fluid retention and more
 
Jon 9-25     posts
 
Jerry B's 9-25 reply to Debra S' 9-22     exercise and blood pressure
 
Donna V 9-25     being patient advocate takes know-how, attitude
 
Sharon L's 9-25 reply to Jon's 9-21     virtual colonoscopy
 
Ben B 9-25     hypertrophic cardiomyopathy questions
 
Jon's 9-25 reply to Ben B's 9-25     hypertrophic cardiomyopathy
 
Jimmie R 9-25     seek pacer improvement info
 
Edward M 9-25     seek good day/bad day experiences
 
Clay M 9-26     seek CHF doc in Birmingham, Alabama
 
Debra S' 9-26 reply to Jerry B's 9-25     thank you for your reply
 
Debra S' 9-26 reply to Giorg's 9-23     thank you for your reply
 
Debra S' 9-26 reply to Edward M's 9-25     you are not alone
 
Tom S' 9-26 reply to Edward M's 9-25     coping with good days and bad days
 
Scott R's 9-26 reply to Edward M's 9-25     coping strategies for heart failure
 
Martha W's 9-26 reply to Edward M's 9-25     coping with heart failure
 
Mike C 9-26     article on new type LVAD
 
Cheryl C 9-26     seek experiences with carrying items and SOB
 
Joy K's 9-26 reply to Sharon L's 9-25     good colonoscopy experience
 
Tom S' 9-26 reply to Jimmie R's 9-25     biventricular pacemaker and reverse remodeling
 
David W's 9-26 reply to Jimmie R's 9-25     biventricular pacemaker experience
 
Martha W 9-26     new heart failure genetic research
 
Linda K's 9-26 reply to Jimmie R's 9-25     biventricular pacemaker patient selection
 
Jon R 9-27     dentistry & antibiotics, doctors & their staff's service
 
Tom S 9-27     a-fib questions
 
Jon's 9-27 reply to Tom S' 9-27     a-fib
 
Jon 9-29     delay, update, sleep apnea
 
Tom S' 9-29 reply to Jon's 9-27     a-fib, beta-blockers, warfarin
 
Bill H's 9-29 reply to Tom S' 9-27     a-fib, warfarin, vitamin K
 
Diane R 9-29     has anyone lost EF, then regained it?
 
Elaine F's 9-29 reply to Clay M's 9-26     my HF clinic and care experience
 
Valerie R's 9-29 reply to Jon's 9-25     getting worse with BiV pacer
 
Jon 9-30     slight delay
 
Marayann H 9-30     seek info on NSAIDS
 
Chris J 9-30     Ryan died, thank you all for your support
 
Ian H 9-30     seek experiences with heart remodeling
 
Penny R 9-30     what other tests should I ask about?
 
Peter T's 9-30 reply to Scott R's 9-26     a product I take
 
Jack D's 9-30 reply to Jon's 9-29     low blood pressure, Byetta for diabetes
 
Donna V 9-30     tips for dealing with disability process
 
Donna V 9-30     biventricular device experience
 


Patrick S, September 18, 2006 - Hi Everyone, I am 23 and was diagnosed with cardiomyopathy in June, with an EF of 10%. I have made great improvement with a current EF of 45%. My blood pressure has been stable the whole way through, palpitations have stopped and physically I feel much better. However, I still have difficulty in public situations, where I become overwhelmed and dizzy. I get very "fainty" when I talk to unfamiliar people face to face. Do these feelings ever go away while on Coreg? Even though my EF is up, I still have symptoms like chest discomfort and extreme fatigue. Will I ever be able to drink coffee again? Anyone who has any advice or similar situations, please write. Thank you! Patrick. patmichael@gmail.com


Mary C, September 18, 2006 - Hi Jon, This board would not exsist without you. So if you're tired, rest. When you feel well enough, do what you can. If you are going to have a colonoscopy, have the sleep study first. Because if they give you twilight, believe me you will want that, the sleep disorder could cause you to stop breathing during the twilight. If you have the sleep disorder diagnosed first, you could use your CPAP to help keep a patent airway. mhcarrs@aol.com


Jon's September 18 reply to Mary C's September 18, 2006 - Hi Mary, I slept almost all day yesterday and all night too. My GI doc already has an actual anesthesiologist scheduled for the colonoscopy rather than a nurse, and will be using a very expensive drug that allows much easier, faster awakening if necessary. He's to call me today about the sleep problems and their potential impact. Thanks for a smart heads-up. ;-) Jon.


Molly W, September 18, 2006 - Hi, I am a 40 year old woman who was just diagnosed with cardiomyapathy with ventricular tachycardia. I was having palpitations and a fluttery feeling in my chest. I did have a stress echo and went into V-tach, ended up with an ICD and now taking a medication called flecanaide. I am still having runs of V-tach and will be having an ventricular ablation soon to see if they can fix where the arrhythmias are coming from. I would love to hear from anyone with this similar issues. mjwatzka@aol.com


Sharon L, September 18, 2006 - Hi all, I just visited the ER. As usual, I said the word "heart failure" and also "pressure" and was ushered right in and hooked up to the monitors. They always take it seriously and although my CK and Trops were normal 4 hours apart, they told me to come back any time if whatever the pressure was didn't go away. I have had a good angiogram in the last 3 years, also good stress tests. I am the queen of low blood pressure at cardiac rehab, usually 100 over 75, with low cholesetrol and well managed blood sugar with 1750 mg of metformin per day.
     The ER doc is writing to my cardiologist. I'm not sure what the pressure was, but I'm pretty sure I have tests in store for me. I am due for an echo pretty soon, I have one once a year and my EF has been increasing. Despite the good outcome, it is scary. I have been wondering if it was anxiety. lyons@sasktel.net


Robert M, September 18, 2006 - Hi all, I have refractory hypertension. I was first diagnosed with high blood pressure upon discharge from the Marines in 1969. I have tried so many meds. I am on an ACE inhibitor now and Lasix but cannot tolerate a beta-blocker due to severe depression. My CHF is progressing fast. Roughly 3 years ago I used to swim 1/2 mile every morning before work, now I am on SSD and can barely walk upstairs. My cardiologist and others are at a loss as to how to help me. I am very down. hawkdog86@aol.com


Chuck F's September 18 reply to David W's September 14, 2006 - Hi David, University of Michigan is rated highly in heart research, especially heart failure. Had I not gone there I would not be here answering this message. For heart failure, I recommend Dr. Peter Vaitkavicius (see www.med.wayne.edu/intmed/cardiology/index.asp). He is currently head of Cardiology at Wayne State University in Detroit, Michigan but he is still associated with the University of Michigan. Good luck. Chuck. chfrancis@adelphia.net


Georgia W, September 18, 2006 - Hi all, I could sure use some answers. I have a long history of heart problems, with 2 bypass surgeries, congestive heart failure, fluid removed twice now, high blood pressure, and a leaky valve. So I was having breathing trouble and extreme fatigue. I went to a heart doctor who ordered a dobutamine echo. When they started it they stopped before the drug part and said I was only pumping at 18% and that there was nothing else they can do for me. I had more tests, including an EKG, chest x-ray and cath, with the same results. So now I am at home wondering what is going to happen.
     How long can you keep going with 18% pumping? They suggested going to Barnes in St. Louis for research testing and such. I said no way. Please reply. I am 58. wgrg417@aol.com
 
Jon's note: What meds do you take, please be specific and include dose for each.


Curt S, September 18, 2006 - Hello, My little sister is suffering from CHF. She lives in Weare New Hampshire, and I don't think she is getting very good care from her doctors. Initially they said she had right bundle branch block and myocardia. They didn't know what was causing the myocardia, and didn't spend much effort in trying to find out. Basically, it was take this medicine and go home.
     After a recent echocardiogram showing 20% ejection fraction, they had her tell her children good-bye. This was last week, and now they are talking about a biventricular pacemaker. I would feel better if someone in the area could recommend some doctors. Thanks, Curt. curt.sharon@cox.net


Cathy N, September 18, 2006 - Hi, Have anyone of you had exacerbations of CHF while on bisphosphonates (ie, fosomax, boniva, actonel, etc)? I have tried several and most recently ended up in the hospital. Is there a link between the drugs and heart failure? Thanks. lafsalot2000@yahoo.com


Ben B's September 19 reply to Curt S' September 18, 2006 - Hi Curt, I think either your sister is getting absolutely horrible information or you are getting some miscommunications. First off, I would hope she has myocardia. This means heart muscle. I suspect they said she has cardiomyopathy.
     Second, although I can see recommending that the kids know about the heart condition, I can't believe they would melodramatically tell her to tell her kids goodbye because she has an EF of 20%, and then the next day recommend a biventricular pacemaker! Almost everybody here has had an EF of 20% or less at some time (including me) and many people can live a long time with proper medical care.
     Either these doctors are more incredibly stupid than any doctors I have heard about (which would be really tough - there have been some doosies I have heard about at this web site), or your sister misunderstood them. bdbrinkman@juno.com
 
Jon's note: Or she has different doctors telling her different things and is thus thoroughly confused through no fault of her own.


Mary C, September 19, 2006 - Hi all, I will be starting Aldactone (spironolactone) as soon as I get blood results. My question is this: My research shows that Aldactone causes breast changes. I have a family history of breast cancer - 2 sisters. One was aggression, the other not so aggressive. Anyway, does Aldactone increase your chances to develop breast cancer? mhcarrs@aol.com
 
Jon's note: I strongly suggest you play it safer and take Inspra (eplerenone) instead - after doing some reading on it.


Linda K's September 19 reply to Stephanie H's September 14, 2006 - Hi Stephanie, I too am a 47 year old woman with nasty hot flashes that often wake me up at night. I can't have HRT because the whole point of getting rid of my ovaries was to reduce my estrogen (I was treated for an estrogen-receptive breast cancer in 2003).
     There is no way short of HRT that I know of to get the flashes to go away, and I do not believe that soy is of any help, since I am a vegetarian and get a lot of soy in my diet. Either that or I'd be a case of spontaneous human combustion without it! You need to set up your bedroom to help your body dissipate heat quickly when the flashes hit. Keep the bedroom on the chilly side, sleep wearing as little as possible (preferably nothing).
     My husband bought me a little plastic desktop fan which I keep running on my night table. It is very quiet, and within easy reach. If I start getting hot, I flip the covers off and twist the fan towards me. There are nights when I sleep with it on me constantly. It does seem like the colder my surroundings, the less flashes I have. I have noticed in February in Ohio that there's never a hot flash when you need one!
     Meanwhile, my understanding husband sleeps in a crocheted night cap his mother made him to keep his head and ears from freezing!
     During the day, I dress very lightly and keep the air conditioning high or keep a fan directly on me. My preferred aerobic exercise is bicycling because it creates it's own breeze. I have gotten some laughs at the barn where I teach horseback riding when I have brought chemical cold-packs to use. Allegedly, they will stay cold up to 30 minutes, but on a hot day, standing in the middle of that arena, I have been known to burn through one in 5 minutes. Just goes to show how much heat your body is kicking off. My mom is 70 years old and when she gets one, her glasses actually steam up! lindakasunick@adelphia.net


Jon, September 19, 2006 - Hi everyone, I just have to kick in my 2¢ worth here on hot flashes. My wife is in menopause and rarely gets them. I'm in my late 40s and I get severe ones. I had one in my PCP's office this summer and he said if he hadn't seen it, he wouldn't have believed it. He made sure to write details in my chart: My entire upper body went beet red, sweat poured off me (literally) and my right eye swelled. So for what it's worth, the ladies have no monopoly on these miseries. We keep a floor standing 3-speed fan with remote control stashed under my pillows. My wife just has to wrap up in covers when I crank it up during the night. <g> Jon.


Gene G, September 19, 2006 - Hello, I was diagnosed with CHF about 4 years ago with all the symptoms and an EF of 28%. With a great doctor, regular exercise, and a strict diet, I am up over 40% and still able to work about 2/3 of the time, although I am tiring much more easily than only about a year ago.
     I have just been diagnosed with a benign tumor on the anterior pituitary. It can cause fatique and may actually contribute to, or cause cardiomyopathy. The tumor is small enough to be surgically removed. I am hopeful that successful surgery will reduce left ventricular size and also the fatique.
     If anyone else has had both conditions and now has the tumor under control, did it improve your overall health, particularly fatigue versus energy? I would appreciate hearing. Thanks, Gene. gene.goorchenko@genzyme.com


David W's September 19 reply to Patrick S' September 18, 2006 - Hi, You have youth on your side. You should get better in time. It took me almost 5 years to improve but now I can work part time, walk up stairs and no one can tell I have been sick unless I choose to tell them. Coreg is hard to get used to, but it really does help in the long run so stick it out.
     I still have problems getting lost if I go someplace new. I don't know if it is CHF or just getting older. I drink full leaded coffee and never had any problems with it as long as I don't drink it at night, as it will keep me up. My ejection fraction is 30% on a good day and I function pretty well. Sometimes people with higher ejection fractions can't do as much as those of us with low ejection fractions. Go figure. I do more now at 30% than when mine was at 40%. This disease is weird and we all react differently.
     The docs figured I would not make it a year back in August 2000 when I was diagnosed. I had two close calls this year but God wants me still here, I guess. My gall bladder died inside me and I was really sick but I made it. My heart doc implanted a dual chamber pacemaker in June and it poked a hole in my heart, requiring emergency open heart surgry and I made it and I feel good now. The ICD part is turned off but the regular pacemaker works fine and really does help as long as I don't push myself too much. I have learned what I can and can't do.
     There is hope. I never thought even two years ago I would be as active and do as much as I can now. I used to be terrified of stairs as they just made me so exhausted - now I can climb three flights as long as I don't rush myself too much. wilsond537@aol.com


Giorg, September 19, 2006 - Hi, In the last month I am experiencing kidney failure. My creatinine is 1.9 and urea over 100. Should I stop taking supplements? I guess so. I take 3 g per day of L-arginine and 1.5 g per day of taurine. Supplements are not the reason for my kidney failure (the reason is the reduction in heart pumping, according to my CHF specialist) but I suppose they could worsen the situation, couldn't they?Should I stop them gradually? Thank you. giorgclunei@hotmail.com
 
Jon's note: If I stopped them, I would stop one, wait a week, then wean off the other, to see if they exert a measurable effect on my kidney function tests in that period.


Nancy P's September 19 reply to Cathy N's September 18, 2006 - Hello, I have filled my prescription for Boniva but haven't taken it yet. I don't feel very good about adding it to my other meds. Particulary since I just spent a bundle on my teeth and then learned Boniva may cause jaw bone problems. Keep your teeth, lose your jawbone! nlp520@earthlink.net


Patricia Fox, September 19, 2006 - Hello all heart patients, I work for a market research firm and we're conducting a research study on behalf of a medical manufacturer. We're conducting interviews with people who have heart devices such as a pacemaker, defibrillator or combination device.
     This research study is in the Bay Area of San Francisco. You would need to attend the interview in person and you would be paid a cash honorarium for participating. If you would like to be screened for the research study, please call 1-800-277-3200. When you call, please reference the Heart Device Interviews and mention that you saw the post on this web site (CHFpatients.com)!
     Thanks, Patricia Fox, Research Manager. pfox@leederesearch.com


Scott B's September 19 reply to Georgia W's September 18, 2006 - Hi Georgia, Without any additional information, it is possible to countless years with an 18% ejection fraction. One clue that could help would be what it used to be a year ago. If it was an EF of 15% and now it is 18%, this could be a positive development. If it was 25% and now it is 18%, it could be negative. Your current ejection fraction is a snapshot in time and it does not tell you where you are going or where you have been.
     Normal EF is 55% or more but the body has built in over capacity. Jon's was as low as 13% and he is still running a great web site 12 years later. The moral: Do not hang your hat on the Ejection Fraction. Scott Brown. Scott.Brown@sunlife.ca


Jon, September 21, 2006 - Well one and all, I didn't do the colonoscopy and won't be doing one ever, apparently. Eight hours after starting the prep - and before starting any of the prescription prep - I was totalled. I wound up going 36 hours with no sleep, and am just now beginning to recover. All I can suggest is that if you have multiple health problems - which doctors call comorbidities - take care agreeing to the prep for such procedures. I just had the GI doc tell my rheumatologist that I went "AMA" meaning against medical advice and refused the test. The prep would have required 36 hours + with no sleep, 24 hours + with no food and 7 hours + with no liquids. I don't think so.
     I've had diarrhea 13 years - ever since getting heart failure and I don't see that's it likely to kill me now, after already having it this long. My wife wanted to cart me off to the emergency room at 2:30 in the morning but I convinced her to just call the doc's answering service and cancel the procedure.
     Lots more posts later. Just still pooped out tonight. Jon.


Lu H, September 21, 2006 - Hi, I have a question about BNP level. First of all some history: At age 47 in 2001, I had a 4-way CABG and mitral valve replacement (mechanical St. Judes). I also have CAD, high blood pressure, SVT, bouts of SOB, and take loads of meds. My open heart surgery was a rough one, taking 12+ hours, then my heart did not restart after surgery so I was on the pump for extended time.
     Anyhow, several weeks ago I was SOB most of the day, generally felt crummy, felt the need to lie down a lot, and had very poor color in my face. My feet felt tingly and when I checked on my feet because of this odd feeling, I was startled to see my lower legs, ankles, and feet were quite swollen. I'm not one to swell, even after heart surgery. When I took hold of my ankle, my fingers left indentions in the swollen area. I'm no medical doctor but I know enough to realize that this was not a good sign and I feared CHF.
     This went on for several days. I did not go to an ER. I try to downplay heart episodes, as it freaks my husband. My symptoms lasted only about four days. It was 2 weeks before my cardio's nurse I and got connected, then they sent me for ultrasound, BNP, and chest x-ray. I go to my cardio next week.
     My question is about my BNP, which was 70pg/mL, which I assume is normal and means I'm not in CHF, but since the blood draw was 3 weeks after the episode, could it (the BNP level) have gone down during this length of time, and not been normal at the time of my symptoms? I was afraid to call my cardiologist at the time of episode because I was afraid he'd send me for a heart cath or something. I know, I know, I should have gone to ER but you don't know our local ER!
     What is your take on this, please? Thank you, Lu. valvejobb@aol.com


Scott L, September 22, 2006 - Hello, I went to the emergency room 9/14/06 because I could hardly breathe. Stupid me, I thought I had bronchitis or something lung related. I was told within hours that I had heart failure and my heart was enlarged with muscle damage to the systolic function. My EF was 20%. A cath was done along with an echo. I was also told that exercise or diet wouldn't help the condition (I asked). This was told to me by the cardiologist's physician assistant, whom I assume was regurgitating Dr. Iceberg's words. Her parting shot was I should join AA and probably still keep drinking so I don't go into the DTs.
     Now, needless to say, I'm scared to death and given I'm not a big drinker, I was offended and shocked. It's "you're toast, get out of here." I have since asked for my medical records and made an appointment with a doctor that was referred by a doctor friend. I need an advocate and I'm sure I'm not the first to face this kind of thing. Any suggestions would be helpful. rslarra@cox.netr
 
Jon's note: Make sure your next doctor is a heart failure specialist no matter what your doctor friend recommends, and then start reading at chfpatients.com/start_here.htm.


Scott L, September 22, 2006 - Hello, I was diagnosed with CHF with a 20% EF last week after a visit to the emergency room because I couldn't breathe. I was basically told I was toast. I have since found a cardiologist that isn't quite so negative. I'm on 3.125mg Coreg, potassium and diuretics. I'm age 55, 6'2" and weigh 275 lbs. I'm not diabetic, my resting blood pressure is 116/82. My blood sugar is 92. My arteries are clear and they did not deploy any stents when they did the cath. I was told muscle damage is on the systolic side. I was also told my enlarged heart would remain enlarged. Needless to say, I'm bewildered and a bit frightened. Any suggestions? slarra@cox.net
 
Jon's note: Start reading right here. No kidding.


Penny R's September 22 reply to Jon's September 14, 2006 - Hi Jon, I only drink naturally decaffeinated green tea, since caffeine can aggravate my already high blood pressure. psrorrer@msn.com
 
Jon's note: Just checking before making this suggestion - see a heart failure specialist as soon as possible. If this is not possible, have your regular doctor order a BNP blood test for you.


Lori A, September 22, 2006 - Hello all, I hope someone can answer a question for me. I had an echo the other day and the tech commented that she could see that I have LBBB. She said that my ventricles were not moving simultaneously. She wasn't talking to me - she was pointing it out to her student. I've known about the LBBB for years, but it has never been noticed before on echo (just during EKG). Does this mean that the LBBB could be getting worse, or is it that echocardiograms are getting better? I'd appreciate any input! simpleefine@hotmail.com
 
Jon's note: What are your EF and your QRS interval?


Patricia Fox, September 22, 2006 - Hello, I just wanted to let everyone know that time is short for participating in our research firm's study on behalf of a medical manufacturer. The study will be done between September 26 and September 28. If you're interested in participating in our interviews with people who have heart devices such as a pacemaker, defibrillator or combination devices, please contact us as soon as possible.
     This research study is in the Bay Area of San Francisco. You would need to attend the interview in person and you would be paid a cash honorarium for participating. If you would like to be screened for the research study, please call 1-800-277-3200. When you call, please reference the Heart Device Interviews and mention that you saw the post on this web site (CHFpatients.com)!
     Thanks, Patricia Fox, Research Manager. pfox@leederesearch.com


Debra S, September 22, 2006 - Hi, I hope someone out there knows something about exercise. My starting blood pressure today was 130/80. After exercise and a cool down it was 97/57. Is there anything wrong with it being so low? I felt very lightheaded during exercise and afterward. Thanks for any info anyone can give me. r_steinberg@sbcglobal.net


Jon R, September 22, 2006 - Hi all, I have a dental checkup this week and might have a tooth extraction. My question is that it is a first time checkup with this dentist and probably just a cleaning and x-rays. My wife said that she had to take clindamycin before she had any dental procedure done because she has a mitral valve condition. I have IDCM with an EF of 35% - would I need to take the clindamycin for cleaning? She says it is because of the plaque and bleeding that you will swallow. I was not aware that I would have to take the clindamycin for a normal dental checkup. I will of course run this by my cardiologist before the checkup. Jreimer70@yahoo.com
 
Jon's note: The guidelines have been loosened so a lot fewer people with heart conditions are required to take an antibiotic first. With that said, my cardiologist said why take chances, and makes me take them anyway, even just for teeth cleanings - and I don't have valve problems.


Jon, September 22, 2006 - Hi everyone, I'm still a long way from caught up on posts but hope to be caught up by tomorrow sometime. Jon.


Lowell P, September 23, 2006 - Hi, I had a cath of the renal areries to my kidneys. My left renal artery was 90% + blocked. A stent was placed in the artery and full blood flow was restored. My creatinine has been rising to about 1.7 with BUN at about 40. I am hoping this will improve my kidney function and creatinine clearance as well. I am going to have another blood test in a month. I would hope also this could help BNP but I don't have much hope for that.
     Does anyone with similar experience care to comment? Lowell in Arizona. Lpepper3m@aol.com


David W's September 23, 2006 - Hi Jon, I feel for you. I have had four colonoscopies in the last few years and they are horrible at best. The worst one was last year when I was in the hosital for a bleeding ulcer and they came to my room and did a colonoscopy and an endoscopy at the same time. I was so full of blood I did not get cleaned out and it did no good except cause me a lot of pain. The last one they found a few polyps but it was no big deal.
     I think they have put me through every test they could think of the last few years. I pray I don't have to go back to the hospital for awhile. The pacemaker they put in seems to be helping, so at least that was not a waste of time even though the darn thing almost killed me. I have the runs all the time too, especially in the mornings. You just learn to live with it. Maybe you will get better in time or they will figure out what is wrong and fix it. wilsond537@aol.com
 
Jon's note: Yeah, In a 2-month period I am seeing a neurologist, opthomalogist, GI specialist, orthopod, sleep specialist, dermatologist, and rheumotologist. Then, hopefully, they'll have ruled out all the extra bad stuff possibilities that go with this condition and my rheumatologist can take it from there.


Maryann H, September 23, 2006 - Hi Jon or anyone with information, My son, who has IDCM, has been on Altace for 3 years and developed a non-productove dry cough. The doctor said if my son wants, he can try switching to an ARB. He has had such good results with the Altace that my son is reluctant to switch. Has there been any research comparing an ACE inhibitor to an ARB. He has had the cough for about 3 to 4 weeks. The doctor suggested claritin to see if it is allergies but no results. Any info would be appreciated. mahall1958@hotmail.com
 
Jon's note: Tons of studies but if you want them summed up, he'd probably be fine making the switch as far as effectiveness, although it is impossible to accurately predict individual cases. In general, the switch should work fine. That cough will wear down his body over time.


Karen K's September 23 reply to Scott L's September 22, 2006 - Hello Scott, You've found a great web site so be sure to stick around and read all the posts. I'm not here to judge your drinking and I don't think it is a doctor's right to "assume" alcohol caused your problem.
     I was diagnosed in 1991 at the age of 49. Approximately 3 years prior to that, I had stopped drinking completely. Alcohol can be a cause of cardiomyopathy but there are many other causes. Mine was either caused by a virus or it is genetic since my father died when he was in his 50s from CHF. However, he drank and continued to drink following his diagnosis. I would not suggest that at all.
     Don't assume you're "toast." I hope the doctor you've found now has a better bedside manner and a lot more compassion. This need not be the end of the world. Of course, I'm sure you are quite scared at this point as I was when I was diagnosed. However, I've proved them wrong and only been hospitalized once since my diagnosis. At that hospitalization, the on-call doctor suggested to my ex-husband that I was an alcoholic. I personally feel I should have sued him for slander. He had no basis for that comment.
     Like I said earlier, stick around and read the posts and much of the information Jon provides. It helps to be your own advocate. Good luck. Karen. karenk@machlink.com


Giorg's September 23 reply to Debra S' September 22, 2006 - Hi Debra, Normally blood pressure should be higher during exercise, maybe a little bit lower just after exercise if you sweat a lot. As far as I know (I am not a doctot) the drop in pressure that you describe could indicate one of the two: That, giving the state of your heart, you are overdoing (maybe you are a bit decompensated or dehydrated) - or that you have some arrhythmia, most probably benign like PVCs, triggered by exercise.
     Anyway, it is definitely something you should talk about with your CHF specialist before pushing again with exercise, especially if your cardiomyopathy is ischemic. You should have a Vo2max test and see what happens in the presence of doctors. giorgclunei@hotmail.com


Suzette R, September 23, 2006 - Hi Everyone, I'm new here. For the past year, I have been having problems with fluid, swelling in my neck behind the collarbones. I'm now told it's distention. I also have other fluid pockets. I was prescribed a diuretic called Aldactone (spironolactone) at 25 mg twice a day and I noticed if I forget to take a pill that I get chest pain. I had a stress echo last month to check for CHF because of of previous breast cancer and adriamycin treatment.
     I was told by the doctor this week that the exercise portion of the test was fine but after that, the very bottom of my heart wasn't working. He is referring me to a cardiologist. I was hoping I could get a clue as to the meaning of this with someone with similar problem at least to help manage my symptoms. I also have pain in my liver and problems urinating. I have a heck of a problem with fluids. I would have a tough time with 2 liters of fluid a day lately and am I the only one who craves fluid because I'm limiting it? sljl@inreach.com


Jon's September 23 reply to Suzette R's September 23, 2006 - Hi Suzette, Oncologists who keep up with the literature know they should have their surviving patients get regular echos for the rest of their life since it is now documented that cancer survivors who have chemo get CHF as much as 10 years later due to the chemo. You sound like a classic case of acute heart failure with a swollen liver, reduced kidney function and more. Get to a CHF specialist immediately, please. The 25mg spironolactone will have zero diuretic effect but it will help your heart. However, Inspra would be a better choice for a breast cancer survivor. You may need a thiazide or loop diuretic because of this. Jon.


Jon, September 25, 2006 - Hi everyone, If your post doesn't show up, please remember that a valid e-mail address is required. That means both sides of the address in the form thisismyaddress@something.com, or whatever. Thanks. Jon.


Jerry B's September 23 reply to Debra S' September 22, 2006 - Hi, I work in a cardiac rehab part time taking blood pressures and other duties. It is normal for your blood pressure to be lower after exercise then it was before you started. Even a big drop like you had isn't uncommon.
     The problem is that you seem to be having symptoms that indicate there is something not quite right. I would suggest that you check with your doctor on what type of exercise and what duration might be the best for you. cpapq4@rainierconnect.com


Donna V, September 25, 2006 - Hi, My 90 year old father, with dementia, was admitted to the hospital for the third time since July. This time his diagnosis was CHF (previously diagnosed as result of two heart attacks, with the right recommendations). He's a skinny thing but could not breathe. Two weeks before this last admission his Lasix was reduced and as it turned out, he was not being weighed daily in the facility where he lives so he got into trouble.
     My problem with the hospital happened when I could get no morning information about my dad by telephone although I was there daily, when I could get moving. One doctor did talk to me by phone and he wanted no part of the hospital information policy. They quoted erroneous HIPPA "rules." I understand HIPPA to a point but I had the right credentials and the hospital and all doctors' offices had copies. I finally asked that his nurses give me a password so I could call and get information. It took "supervisors" and a lot of attitude but I got it and getting it did work for future information, with all my legal credentials in hand.
     My suggestion for anyone in the same situation and where a hospital does not automatically give out a password or code number to an immediate family member or designated person to ask for one. Some do that. This last round of nurses did not like me and were in their own power play. They cared not that, yes indeed, I understood CHF and have it big time, and what the numbers might mean. I too have had a BNP of 3000 3 years ago and my dad's went up to that after admission. Who asks that just to be nosy, about EF or BNP? My dad does not comprehend anything about his health.
     There are many things I do not comprehend but thanks Jon, CHF is one thing I do understand from a far more personal viewpoint than any nurse who does not have it. So if snyone is a patient or has a loved one who is a patient, be sure that right from the outset, you can get information by phone from the nurses in charge. You can have your own plan to get back to the hosptial but if a doctor is not right there while you are, you may be sunk.
     If you are CHF or have any other major health issue, you cannot stay there for 12 to 18 hours hoping to see a doctor. If you eat the hospital cafeteria food you might blow up and end up as a patient. Can you tell that I'm not the patient d'jour but I am angry. For the moment my dad is okay and pleasantly confused. Donna V. dmvditty@aol.com


Sharon L's September 25 reply to Jon's September 21, 2006 - Hi all, I have often pondered what I would do if required to have a colonoscopy, which is recommended after age 50, especially if you have a risk factor like I do - a father with ulcerative colitis. I have a close friend who also has it who suffers terribly with the preparation. I have often said I could never survive the prep - I can't let my electrolytes get messed up.
     I'm wondering about the technology of virtual colonoscopy, and whether it is progressing. It seems like a promising thing for folks who cannot tolerate the terrible side effects of the prep. They watched me closely when I had to be NPO for 3 days before I had my gallbladder out. Any thoughts? lyons@sasktel.net


Ben B, September 25, 2006 - Hello, My 40 year old brother in law, who is Peruvian and lives in Peru, recently fainted and was diagnosed with hypertrophic cardiomyopathy. He really has no other symptoms. Like me (who was diagnosed nine years ago with DCM with an EF of 10%) and many of us, he feels his life is over. I am reading up on this but have been unable to get to the HCM association web site because it is in php, which for some reason my browser does not like.
     I know the main problem he has is the arrhythmia, which caused the syncope, but I don't know how they are about ICDs down in Peru. Also, since it is hard to find a CHF sepecialist up here, I'm sure it is not easy down there. He is on a beta-blocker and calcium channel blocker. I know CCBs are not generally good for heart failure. My questions are: What are the typical medicines? Do people with HCM typically take ACE inhibitors? Does ejection fraction mean anything with HCM?
     Needless to say, I am also worried abut my wife and stepson, because I know this can be genetic. bdbrinkman@juno.com


Jon's September 25 reply to Ben B's September 25, 2006 - Hi Ben, you can contact the HCM Association site people through support@4hcm.org. Also, see chfpatients.com/surgery.htm#alcohol_ablation_again. Thickening of certain parts of the heart is a real concern with hypertrophic cardiomyopathy or HCM, thus the alchohol ablation, which kills the parts that won't stop growing. Surgically removing part of the thickened muscle wall interfering with blood flow is called septal myotomy-myectomy, and this can reduce symptoms in advanced cases, although it's not a sure thing.
     Calcium channel blockers are often used successfully with HCM, although not in all individuals. Pacemakers are also sometimes used, although usually it's a combination ICD/pacemaker that is implanted in HCM patients. However, pacemakers have a very "iffy" record in helping people with HCM so it may not be mentioned. Unfortunately, arrhythmias in HCM are often caused by scarring and by the weird "disarray" found only in HCM heart muscle cells. The muscle cells become weirdly shaped, which causes abnormal connections between them, which can trigger arrhythmia.
     Believe it or not, eating small meals can help reduce symptoms and of course, heavy exertion should be avoided, unlike other forms of heart failure. Beta-blockers are the most helpful so it sounds like he is being pretty well treated at this point, anyway. The best beta-blocker is considered verapamil for HCM for technial reasons, and often is used with disopyramid to help prevent arrhythmia.
     As far as I know, ACE inhibitors are not a usual treatment for HCM but I am not a doctor. It is often associated with some genetic traits so it can be familial, although this is not always the case. I hope it helps. Let me know if you keep having trouble with the HCM Association site and I'll see what I can do to help. Jon.


Jimmie R, September 25, 2006 - Hi all, I am a 56 year old male. I had a Medtronic pacemaker/ICD implanted on July 10 of 2006 . I had some small improvements and then i have been waiting to see any other changes. When I ask if this will keep getting better I get no real answer. Do they know are all cases that different? I have BBB and am on the maximum dose of all my meds. Am I just too impatient or what? Medicaid paid, but it wasn't easy. Thanks for any info. God bless all. Jimmie R. jlr@mei.net


Edward M, September 25, 2006 - Hi, This is addressed to any of you who might like to respond and share your own experience with me. I live in southern California, am 86 years old, diagnosed with CHF just over a year ago, but have not had any noticeable symptoms until several months ago. In addition to fatigue (those late afternoons are murder!), loss of appetite, general weakness, considerably less ability to walk (and climbing stairs is true agony), and I have also experenced what is described as good days/bad days. By the way I have no swelling and only rarely momentary shortness of breath.
     I'm satisfied with my cardiologist and have also seen a CHF specialist at UCLA who concurred in all my cardiologist's recommendations. Here's the rub, something on which I hope one or more of you out there might help me with.
     I don't know anyone else who has CHF, so I have no one to compare notes with. The major item is the "good days/bad days." Actually, with me it turns out to be good groups of days and bad groups of days - each of these lasting from a couple of days to almost a week. I've no idea what brings them on or makes them go away.
     My good days are, of course, never as good as the old days before CHF but I can go through a day without too much discomfort. I'm still weak and unable to walk at a normal pace, but I have a general sense of well-being. My bad days are miserable. I feel great fatigue, significant feebleness/senility, chilled, a bit of nausea and bloating, and heavy-headedness, a sense of being ill.
     Please share with me your own experiences of good days and bad days, and any thoughts you have that might help me to better understand them and know that I'm not alone. Edward M.
     PS. Beofre this hit me, I was a tribal photographer, traveling the world to find and photograph primitive societies so I had my thrills and adventures while I could. This huge library of memories is one of the most important of my "medicines." eminusa@cox.net


Clay M, September 26, 2006 - Hi all, I am wondering if anyone can recommend a CHF specialist in the Birmingham, Alabama area. Thanks. cjmassey@yahoo.com


Debra S' September 26 reply to Jerry B's September 25, 2006 - Hi Jerry, Thank you for the reply and thanks to others also. Your reply turned out to be correct. The dizziness is from Coreg and Tikosyn. The resting blood prssure is what they want. Thanks again. Debra. r_steinberg@sbcglobal.net


Debra S' September 26 reply to Giorg's September 23, 2006 - Hi Giorg, Thank you so much for replying to my post. I always read yours, although I never have anything to add. I do appreciate it when someone answers, which is almost never. r_steinberg@sbcglobal.net


Debra S' September 26 reply to Edward M's September 25, 2006 - Hi Edward, I live each day with the bad symptoms that you describe. I have been told that they are from the beta-blocker I am on. You aren't alone. r_steinberg@sbcglobal.net


Tom S' September 26 reply to Edward M's September 25, 2006 - Hi Edward, With CHF there are going to be good days and bad days. Get used to it and pace yourself. Most of my bad days have been pretty much self-inflicted by doing too much on the good days.
     I have survived eleven years with an EF of 5% to 20% and the only time I landed in the hospital was when I tried to act like a normal 50 year old, when I knew better. I am now 59 and have been in the hospital four times in the past 11 years due to overextending myself.
     Sit back and relax and let the world go by - you might just live a little longer. bigheart@muchomail.com


Scott R's September 26 reply to Edward M's September 25, 2006 - Hi Edward, Since I do not know the details of your clinical condition, I will speak generally. These are the things that make me have bad days. I would catagorize as follows: Fluid retention, potassium depletion, dehydration, and poor circulation.
     For fluid retention, I take a water pill (diuretic). I weigh myself every day (naked) at the same time to tell when I am retaining fluid. My cardiogist leaves it to me to take the appropriate diuretic dose based on fluid retention. Retaining fluid will make it difficult to breathe, and mucous will coat the lungs and make it harder. You will cough more.
     When you take a water pill, you are getting rid of the sodium in your urine (sodium is what makes you retain the fluid). Some good electrolytes leave as well (including potassium, magnesium and chloride). This can make you feel extremely fatigued or as I describe it: "Creepy." I can feel squeamish, irritated, nervous, chilled, feverish, depressed, shocked, and most of all fatigued! A potassium supplement like Slow-K can help (but it can also upset your stomach). Eat foods with potassium around the time you take your diuretics.
     Dehydration can occur easily if you are taking too much diuretic (in one day, or slowly over time). If your water pill is working too well, think about some liquid with potassium (like orange juice) to replace some fluid.
     Poor circulation could be due to poor heart function. I sleep with pillows between my limbs to ensure they do not cross and thus cut off circulation. In the first year or so of taking my heart meds, it took a surprisingly long time to get used to the meds (at first, I thought it was my heart making me dizzy, etc.) but now I have no symptoms like that so I figured out it was the meds.
     These are are some the big things I can think of that impact me. I hope some of this helps. Scott B. scott.brown@sunlife.com
 
Jon's note: Scott makes a very important point that is often overlooked - too much diuretic can cause dehydration to some extent and that causes extreme fatigue and other nasty symtpoms but doctors usually miss this as a potential cause.


Martha W's September 26 reply to Edward M's September 25, 2006 - Hi Edward, I think we all experience the up and down cycle of CHF, some much more distinctly than others, and for some of us the down days far outweigh the up ones. Your friends won't understand because in your case, it sounds like you've always been active and to push yourself to exercise your heart is counterproductive to what you probably should be doing.
     "Like walking through mud" is my description of when I'm having a bad day. My heart is struggling and I try to listen to it and try not to push it. I feel like it only has a certain number of good beats left, so I want to conserve them as best as I can. No, I'm not inactive, just much less so than before I knew what my matter was! I hold a job 60 miles from my home, I raise Paso Fino horses, and ran a goat dairy for over 24 years. Upon retirement, I look forward to having a smaller version of that, and more time with my horses of course.
     Basically, ask your doctor for your records after every visit so you'll be able to find out his views, which may be vastly different from what you think he's thinking. Know your starting EF and monitor it through echocardiograms routinely done to see if your medication needs to be changed or increased/decreased. It does take a little while to get your body used to the Cozaar, Coreg, Aldactone (spironolactone), if your doctor has prescribed those. Some ACE inhibitors cause a cough. If you experience this, tell your doctor because there are others that may not cause this. Lightheadedness (Cozaar, I think caused this in me), but it became less pronounced as I kept on the medication.
     Don't decrease or stop your medicines suddenly as this could actually cause a lot of harm because you probably had to develop a target dose over some weeks. Edward, you sure write like you've had a very exciting life and profession. CHF is no reason to totally quit whatever it is you love to do. You just need to revamp how you do things. No long tribal jaunts, try not to carry a ton of camera gear, etc.
     I wouldn't stay away in the bush for weeks on end with this particular disease, either. I lived in Belize for a time and once considered retiring there. That is out of the question because I need to be close to decent medical facilities now. Sixty miles from town is close enough! Martha. mwells@ppfs4.tamu.edu


Mike C, September 26, 2006 - Hi everyone, I don't know if you guys heard about this but in case not, there is now a new cardiac-assist device in testing. See www.uchospitals.edu/news/2000/20001030-lvad.html. One of the doctors on this case, David Jayakar, did surgery on me to pull down a trapped lung that collapsed and the operating room nurse told me the next day no one would have spent 4+ hours looking through a trochar digging out hardened fibrin. So now I have 3 tiny holes instead of half my chest carved out and he always likes to go between ribs, not saw them. The doctor is as sweet as he is good. He usually works just out of Chicago in Northwest Indiana. If anyone needs any info or directions send an e-mail to me.
     Remember, keep up your spirits up because every year another new device comes out that will give us back life. Mike C. emike_c@hotmail.com


Cheryl C, September 26, 2006 - Hi everybody, I've got a question for anyone who may have some input. Do any of you have aortal regurgitation? If so, what effect, if any, does it have on your day-to-day living? I'm particularly curious as to whether anyone has noticed shortness of breath to any degree when carrying something or using upper body motion.
     My last EF almost a year ago showed normal heart function but I do still have some shortness of breath when carrying things or using lots of upper body motion. I can walk on the treadmill for 30 minutes with very little stress or fatigue and normal everyday tasks do not overtire me, but carrying a load of laundry from one end of the house to the other can leave me longing for more air. Bending over to the floor can also do the same thing.
     The only valve that I have that's leaking is the aortic valve, so naturally I'm wondering if that's what the problem is. I'm not overweight, so that can't be the problem and I don't seem to be retaining water. I suppose that it's possible that my heart function decreased some also, but I still feel the same as I did before. I'm just curious if anyone else has the same problem or if it's just me! Cheryl C. cocojo86@yahoo.com
 
Jon's note: For what it's worth, I've had this exact problem ever since getting heart failure, despite all kinds of exercise and now normal heart function. It's only when I carry things, not when I pick them up and not so much when pusing or pulling things either. I don't know why.


Joy K's September 26 reply to Sharon L's September 25, 2006 - Hi, Regarding colonoscopy, this past summer I had one without any problems. I have cardiomyopathy and my last EF was between 35% and 40%. I have mitral regurgitation, low blood pressure, and major problems with medications.
     My concerns regarding this procedure were many. I am a registered nurse and I wanted the procedure done at the hospital where I had worked. The nurses involved in the scope procedures are all Advanced Cardiac Life Support (ACLS) trained. This is not true with many facilities. Some facilities only have the technician and the doctor. We have the surgeon, an ACLS registered nurse and a surgical tech. I believe this to be a real plus.
     The pre-op nurse called me about 2 weeks prior to my scheduled date. We spoke of all my concerns. We agreed upon a time that was best suited for me. I chose 8:00 AM because I have a 90 minute drive from my house to this hospital. We talked about the IV fluid they would use and how they would keep the total amount to a minimum. I would receive IV antibitics prior to the procedure because of my valve problem. In colonoscopy procedures it has been determined that antibiotics are not needed for mitral valve patients but my surgeon asked me how I felt about this and I opted for the antibiotic. The prep we chose gave me the smallest amount of sodium possible. The Fleets Phospho-Soda Oral Saline Laxative has way too much sodium. Read labels and talk it over with your doctor and surgeon.
     The day before my procedure I ate a regular breakfast of oatmeal. I was to avoid dairy products for that day however I am a tea drinker and prefer milk in my tea. That was not seen as a problem. For lunch I ate chicken soup. For supper I again chose to eat soup (I strained the chicken and veggies out) and ate a large serving of jello. I started my prep at 6:00 PM and was finished with it at 9:00 PM. I can honestly say it worked very well. I was allowed liquids up until around 4:00 AM the day of the procedure. I abstained.
     I arrived at the hospital around 7:15 AM. I had not taken my morning medications, which included my Coreg. I was assessed by the nursing staff and by the surgeon. The IV antibiotic was started and I received about 100cc fluid with this medication. In the endoscopy suite I was attached to a heart monitor and a blood prssure machine. Oxygen via nasal cannula was started at 5 liters per minute. I received 15mg of IV demerol and one mg of Versed. I drifted off. Sometime during the procedure I remember saying "that is sore" and the nurse saying she was giving me pain medication. I was groggy when I left the endo suite. In the same day surgery room I was sleepy but alert.
     The surgeon had spoken to my husband. He stopped by before I left the hospital to reassure me that I had a clean and healthy looking colon. I will not need another scope for 10 years unless something would change. I drifted on and off. About 9:30 AM I was discharged home with instructions, verbal and written. I was offered a breakfast at the hospital, which I refused.
     My husband and I stopped at a local restuarant and I took my morning pills without a problem. I rested for about an hour when we got home. I cooked supper that evening and was glad it was all over. I had a slight soreness in my right lower quadrant for a couple of days. Polyps are a concern. They are often a precursor to cancer.
     Discuss with your surgeon your concerns. Address issues like sodium, fluids, pain medications and your fears. Have the nurse write all over your chart if necessary. Mine did. In large black words she had written. Fluid restriction no more than a total of 500cc. Patient requests the smallest amounts of pain medications to keep comfoprtable during procedure. Patient has cardiomyopathy and a history of pulmonary edema. I hope my experience, which was a positive one helps. Joy. pjkachel@aol.com
 
Jon's note: With the sedative now becoming popular (Versed is falling out of favor), an anesthesiologist is required, so that's a plus, especially since you awaken more quickly. A low-sodium Rx laxative was chosen for me using only half the usual amount of water. However, I never even made it to the Rx laxative, much less the procedure. <g>


Tom S' September 26 reply to Jimmie R's September 25, 2006 - Hi Jimmie, It's ironic that you mentioned the Medtronic BiV pacer/ICD. I had a long conversation with one of their operating room technicians who oversee the implant procedure, then do your first checkup, usually right in the hospital shortly after the implantation.
     While I had a St. Jude/Guidant BiV pacer/ICD implanted April 28, 2006 and within a few days I noticed that I was losing fluid and ultimately weight. Within the first month I lost about 30 lbs, dropping from a ever spiraling upward weight of 376 lbs down to 343 lbs. At my last weigh-in on September 22, 2006 I weighed in at 330 lbs.
     At the time of my implant my EF was described as unmeasureable, somewhere in the 5 to 10% range and that I could expect no more than a 3% gain on that figure. At the time I was entering my second year of supplemental oxygen. Except for nights I am almost totally off the supplemental oxygen (2.4 liters) during the day now. I do use it occasionally when I have to walk any distance. I have an oxygen extactor at home and use bottled oxygen with a conservator in the car and on walking trips. I generally wear the oxygen in my vehicle just in case. My oxygen levels have been measured via pulse oximeter at between 81 and 94 sometimes topping 95 walking and at rest. Now they rarely dip below 88 and rarely down to 85.
     I also feel like I have a lot more stamina and actually stay up for long periods of the day and night. Before the device implant, I would often fall off to deep sleep and sometimes not wake up for two or more hours. I mentioned I had the luxury of talking to a Medtronic tech, whose daughter is a friend of one of my teen daughters and school together, and I was in the process of picking my daughter up from a party when it was mentioned he was a pacemaker tech.
     He asked me if I had any improvement and I told him I definitely feel my EF is somewhere close to the 20% mark and that I had more stamina. I commented that I hoped it wouldn't regress and he said that over a period of the last six years they have discovered that while there is no real empirical evidence, the hearts of implanted patients have actually started to remodel themselves for the better and they have seen no noticeable regression in any of their BiV pacer/ICD implant patients.
     He said there is no literature out yet on that fact but they were waiting for more study to see if the device actually does "reverse remodel" grossly enlarged hearts like mine. Have you heard anything about that, Jon? It sure would be nice to see it in print. bigheart@muchomail.com
 
Jon's note: Yes, it's in print. However, the hangup is the still-large number of patients who get no benefit (now roughly 30%) and those who get worse (over 25%). This makes it hard to state things clearly without separating the implanted patients into subgroups.


David W's September 26 reply to Jimmie R's September 25, 2006 - Hi Jimmie, I had a dual chamber pacemaker implanted in June. It poked a hole in my heart July 3 and caused me to have open heart surgery and I had thought I maybe had made a mistake having it put in but after the surgery my doc turned my pacemaker up from 60 beats a minute to 75 beats a minute and that has really helped.
     The defib part is not connected anymore as it would probably poke another hole in my heart but the pacemaker part does help me. I can work, climb three flights of stairs and pretty much do what I want to do within reason. Maybe you need an adjustment. The pacemaker has helped me a lot despite the problems it gave me in July. I am glad I had it implanted. wilsond537@aol.com


Martha W, September 26, 2006 - Hi everyone, A local reporter named Craig Kapitan for the Eagle just wrote an article about genetic research that may help treat heart failure. The research is being done at Texas A & M. It was reported that researchers with the Health Science Center's Institute of Biosciences and Technology at Houston have identified the gene involved.
     See www.theeagle.com/stories/092006/am_20060920003.php for the article. mwells@ppfs4.tamu.edu.


Linda K's September 27 reply to Jimmie R's September 25, 2006 - Hi, I might be able to shed a little light on the percentage of patients who don't benefit from CRT. I received my CRT-D from St. Jude 3 months ago. I only qualified for it under a study to determine whether the criteria needs to be changed for who gets one. My understanding is that it goes like this
     The current criteria for CRT is a wide QRS as determined by EKG, indicating a delay in the electrical signal between the two sides of the heart. This is the group which has shown the statistics for success and failure that Jon mentions. However, it has come to be questioned whether everyone who has a wide QRS actually has dyssynchrony. I turned out to be an ideal candidate for the device by having a narrow QRS and evidence of mechanical dyssynchrony as determined by echo, meaning that they decided my heart was not beating in synch by watching and measuring it. The theory is that not everybody with a wide QRS has dyssynchrony, and so those people would not benefit from BiV pacing. This study has the potential both to open up the benefits of BiV pacing to a much larger number of people, and to spare those who do not really need it the unnecessary surgery and expense.
     I wish I could tell you whether or not it's working for me, but I'm in a double-blind study and won't know if my gizmo is on or off till December 21. My personal feeling is that it is off, so I can look forward to having it turned on for my Christmas present! lindakasunick@adelphia.net
 
Jon's note: One correction to this post - the stats I mentioned are not the ones quoted when the "old" patient selection criteria alone are used. Those percentages were almost exactly 33%, 33%, 34%, respectively. Please note the not-insignificant difference between that and the stats I mentioned, which reflect slowly improving patient selection methods. Several methods to improve patient selection are being tested now.


Jon R, September 27, 2006 - Hi all, I went to my dentist appointment the other day and took clindamycin per instructions one hour before. The dentist would not touch me without a letter of approval from my cardiologist. I talked to the CHF clinic today and the nurse said come in and we will sign the letter of approval. I declined stating that I wanted to talk with the cardiologist myself.
     I am unhappy with my CHF clinic because of the staff and their attitude toward my inquiries about my condition. I often find that it seems like the nurses bypass the doctors. For instance, I asked whether I should be on antibiotics prior to my dental visit and was told no, then 5 minutes later I received a voice mail saying yes that she did not have my chart in front of her at the time of the question.
     I am going in tomorrow to get the letter of consent from my doctor and inform him about this situation with the staff. In short, I have pretty much already made the decision to switch to Penn hospital's heart failure clinic. This is about my life and if this is inconveniencing someone's day, then they are fired. I will wait to see what my cardiologist's (head of cardiology) reaction is and then decide. Oh! The clindamycin made me feel like awful! jreimer70@yahoo.com
 
Jon's note: Good for you! It's a tremendous pain switching doctors, but if either the doc or the staff don't realize this is about your very life, they do need to go.


Tom S, September 27, 2006 - Hi everybody, I went for my quarterly BiV pacer/ICD checkup September 26, 2006 and left there with a "half hearted" feeling. To me the report did not seem very positive. It seems half my heart has been in atrial fibrillation since July 17, 2006.
     That basically means half my heart is working fairly well (the tech said assisted 76% of the time with the BiV pacer/ICD device helping) and the other half flutters instead of properly beating, for which there is no assistance. The tech told me the only way to resolve the problem is for the device to zap the heart which, from what I was told, was only a whisker away from that happening. Later that evening when I was telling my wife about it I could not help but ask her if the fact only half my heart is working right makes me half hearted. I got a chuckle and a goofy stare back for that great piece of punditry.
     Anyway, I am still vertical and breathing and waiting for the mule kick in my chest that the pacemaker tech said I was a whisker away from having. The doctors answer to the glitch in my cardio system is to up one of my medications (Coreg) and recheck the heart on December 29, 2006. Ho Ho Ho.
     Jon, if you can add anything about upper chamber (atrial) fibrillation and its dangers I would appreciate it. bigheart@muchomail.com


Jon's September 27 reply to Tom S's September 27, 2006 - Hi Tom, The main danger is stroke. This is because blood may pool in the upper heart chamber long enough to form a clot when the atria are not ejecting enough blood per beat due to the a-fib. If my rotten memory serves, you take warfarin or another blood "thinner" (anticoagulant) and that is the proper therapy to help prevent stroke from a-fib.
     If your heart rate increases and stays high over time due to the a-fib, that can cause more damage to the heart muscle, so make sure your heart rate is staying controlled. If it's not, a higher beta-blocker dose or adding amlodipine may be tried - it's the only calcium channel blocker that does not raise CHFers' risk of death.
     A-fib also lowers EF and makes echo measurement of EF extremely unreliable. My own CHF doc won't measure EF by echo in a CHFer currently in a-fib.
     You might talk to your doc about dofetilide or another drug to help control it but there are also surgical solutions, some of which have gotten a lot better and can be done through a cath rather than actual surgery. These are usually called MAZE or ablation procedures.
     There are message boards dedicated just to a-fib and its treatments. I can't vouch for them personally but we provide links to some of them at chfpatients.com/links.htm#forums. I hope it helps, Jon.


Jon, September 29, 2006 - Hi everyone, Sorry for the delay. My wife's vehicle, which has 200,000 miles on it, has had serious problems since Saturday and I have spent hours every day trying to get a local shop to honor its own warranty, including 4 hours yesterday when I finally got the thing actually fixed. We're going to have to replace it but we don't have a clue where the money's coming from since we planned on one more year to save. So it goes.
     Last night was the first night of a 2-night sleep study for me, which showed a nasty case of apnea, so next sleepover, I'll be fitted with a CPAP and nasal canula. I liked the face mask better (soft fit) but because of my beard, they couldn't get good enough results with it. Just another reason for me to be so tired. Then again, you should all know that I appreciate having a place to come myself where people understand. Thanks for being here.
     I have to pick up our lawnmower and some food now that I have a reliable vehicle again, so I won't get all the posts up for awhile, but I'll get to them as fast as I can. Jon.


Tom S' September 29 reply to Jon's September 27, 2006 - Wow, What a super fast response, and as usual chock-ull-o really good information. It is very much appreciated I hope it will help others as well. You are correct sir - I do take between 7.5 mg and 10 mg of warfarin (poor man's Coumadin) daily and have been doing so for about 9 years now. The biweekly pro-time testing has gotten to be a pain, but the doctors seem to put a lot of stock in the old rat poison.
     I think I mentioned the Coreg dose was upped from 12.5mg BID to 25mg BID. I shall check with my triage nurse at the cardiology clinic I have haunted for these past 11 years and see what their thoughts are beyond pumping beta-blockers into my system. bigheart@muchomail.com
 
Jon's note: Don't forget that target dose is not maximum dose. For a big guy, it might work well to raise your Coreg dose further.


Bill H's September 29 reply to Tom S' September 27, 2006 - Hi Tom, Jon is right about taking warfarin for your a-fib. It's a tricky thing to get the dose right, your doctor needs to keep fiddling with it to get it right, and that means monthly giving blood every month to check your INR. You also need to maintain the same vitamin K intake, that can mess up your INR and give your doctor fits, and trust me they don't think it's all that funny. Good luck. bj5250@yahoo.com


Diane R, September 29, 2006 - Hi all, I am 44 years old and have had 6 years of CHF, dilated cardiomyopathy, and type 2 diabetes. At onset in 2000 in the hospital, I had a 20% EF. A year later and for 4 years afterward, it was steady at 30 to 35%. This last year I switched to zebeta after a brief battle with Coreg (I hated it) and had an improvement to 40 to 45% EF.
     Now here's my problem. I went today and found out I am at 20 to 25% EF. I'm shocked. Has anyone else lost ground and regained their EF once lost? If so, please advise. cotu@sbcglobal.net
 
Jon's note: My EF once dropped that far (to where my CHF doc wanted me evaluated for transplant) but eventually came all the way up to 55%. My doctor went up beyond target dose on my ACE inhibitor to achieve the initial improvement to the point that no one could read my blood pressure - but it worked.


Elaine F's September 29 reply to Clay M's September 26, 2006 - Hi Clay, I've been going to the Heart Failure and Transplant team at the Kirklin Clinic at UAB since September of 1998. I see Dr. Benza, who has been right on with the appropiate meds and tests from the very first. I found this site shortly after my diagnosis, and was already on Coreg, an ACE inhibitor, digoxin (Lanoxin) and Demadex. I have a BiV pacer since January of 2001. I feel very confident in this clinic, in which I also see an oncologist. I feel very fortunate to have world-class medical care available to me at UAB.
     Jon, as always, you rock! Elaine. heartfelt616e@aol.com


Valerie R's September 29 reply to Jon's September 25, 2006 - Hi Jon, I am one of the 25% who got worse with a BiV pacer. The only one in the medical community who seems to believe this is my own cardiologist, who went through the three hospital visits with me and had the BiV turned off. When I was evaluated (put on inactive due to good compensation) for heart transplant, the head doctor there wanted me to have it turned back on.
     Most recently I had a pacer check and the Medtronic guy, a new guy, was telling me that the BiV doesn't make people sick. He got me very upset and then said, "Don't give attitude." vgrogers@aol.com
 
Jon's note: Medtronic usually has much better personnel than that. It's a published and well documented fact about the percentage of CHFers who get worse with BiV pacing. There have been articles and discussions on it at both Medscape and the Heart Failure Society of America (Marc Silver is a founding member). Next time you see this rep, either kick him in the shin or send him my way.


Jon, September 30, 2006 - Hi all, I'm trying to catch up on posts and e-mails today. Yesterday I took the time to finally get my hitch receiver on my truck set up for towing from front or rear (the front is a factory setup but the rear setup is a pain to do right, especially for towing vehicles instead of trailers). With my wife's vehicle on the blink so much, I'm not paying any more towing bills, when I can do it myself. ;-) Jon.


Maryann H, September 30, 2006 - Hi all, I just read an article that if you are on an ACE inhibitor, you should not be taking NSAIDS, which include aspirin. My son was put on aspirin when he was first diagnosed 3 years ago with IDCM. He takes one low dose of 81mg daily. Can anyone give me some info on this. I also believe NSAIDS include ibuprofen, and Aleve. Thanks. mahall1958@hotmail.com


Chris J, September 30, 2006 - Hello Jon, As you are aware we have been reading your site for many years now and sometimes post. I wanted to let you know that Ryan passed away this morning (09-28), at home. He had CHF and COPD. He had been with hospice for the past 5 weeks.
     Jon, you have no idea of how much you have helped us over the past years. Your information has been most useful and we have shared it with our doctors and friends. The people who post on this site are wonderful - everyone shares, encourages, and tells the truth. God bless you, Jon. Thanks for being a lifeline. Chris J. tibia456@aol.com
 
Jon's note: I am so sorry for your loss, but thank you for taking the time to post. It makes the work easier to do knowing that it matters to real people.


Ian H, September 30, 2006 - Hello, I have not posted till now probably because I have had few HF symptoms but read regularly and donate irregularly. I am age 55. I had an MI (stent in circumflex artery) 6 years ago. There was a lot of damage to the back and side of my left ventricle. Soon afterward, I had an ICD implanted to treat VT. My ICD has never activated (sotalol is doing its job). I had 2 excellent years with no symptoms and a stable EF of 45% and stable mildly dilated LV (6 cm).
     Then, as remodelling set in, my EF fell to 35% and LV increased to 6.8 cm. I developed some shortness of breath when talking. Two years ago, at my suggestion, having read a lot including this great site, I halved sotalol to 80mg (40mg twice a day)and introduced 50mg (25mg twice a day) Coreg. I also take 25mg Aldactone (spironolactone), 4mg Coversil (ACE inhibitor), aspirin, fish oil, and Lipitor. The change in my beta-blocker seems to have stabilized my condition. I have had no further deterioration in numbers and no shortness of breath when talking for 18 months until it started again last week - which promped this post.
     I assume this is just progressive remodeling. I exercise lots, am fit and slim, eat well (but no salt restriction), don't smoke and drink wine moderately (14 standard drinks weekly). I would be interested in any suggestions from others with similar history about how to slow or reverse the remodelling process and how it progresses over time.
     I understand mine is a very typical HF story, thankfully still with few symptoms yet I have read little about remodeling in other posts. Do others just take it for granted? ihunter@mail.com


Penny R, September 30, 2006 - Hi all, Okay, I am going to see my new doctor on Monday (the old one moved out of the country with a military spouse) - talk about a long road, trying to find a doctor that works through the hospital that has the majority of my records was a nightmare. Every time I checked the "current" listing of doctors through insurance, I would call only to discover that they no longer are accepting new patients or my insurance. Finally, I had to just take any doctor I could get to accept my insurance then beg them to take me as soon as possible.
     I hate seeing a new doctor since they will want to repeat every test I have ever had (I also have NASH (non-alcoholic fatty liver disease), asthma, ocular migraines, MS, hypoglycemia, glaucoma and a list of allergies and intolerances with medications a mile long - and come up with their own diagnosis for each one and I am completely out of all my meds.
     Okay, I have whined enough. Thanks for the suggestion on the BNP Jon. I will have that test when they draw off the quart or so to check on everything else. If nothing else, lowering my blood volume and decreasing my blood pressure the old fashioned leech way. <lol>
     Are there any other things that do not require contrast dies since I am allergic to all of them that I can request for testing? I already know to ask for the echo and know that they will be doing a chemical induced stress test and I am hoping that they do not want another cath. psrorrer@msn.com


Peter T's September 30 reply to Scott R's September 26, 2006 - Hi everybody, Not to sound like a pitch man or anything, but I've been drinking the Glaceau "Vitamin Water" products frequently since my CHF diagnosis. They have two with lots of potassium called Revive and Essentials. Essentials has a measly 35mg of potassium, while Revive has a whopping 350mg. They can be ordered online at about 1-1/2 dollars US per bottle but I lucked out and found a store nearby that has them for one dollar US each. I find that with fluid restrictions a bottle will last me a few days, and they're a big help at the office. :) peter.tyler@gmail.com
 
Jon's note: Just don't forget that irregular potassium intake can really mess you up with CHF, especially if you take diuretics or an aldosterone blocker or other CHF meds.


Jack D's September 30 reply to Jon's September 29, 2006 - Hey Jon, Nobody could read your blood pressure. It's nice to know that I'm not the only one. Nobody could get my pressure. Nobody could get my pulse. I frustrated so many subordinates and different doctors, they finally just left it to my main doc to do the readings. Pulse by stethoscope on the neck and somehow he could read the blood pressure but those automatic machines would read nothing but error. Edema was terrible in those days. Large, fat feet and compression stockings.
     On a different note, for those diabetics out there, I'm on my second month of Byetta and for some reason my need for diuretics is dwindling. From every day or every other day, it's dropped to once a week or less. maddjak@hotmail.com


Donna V, September 30, 2006 - Hi, Amost two years ago I applied for Social Security Disability/early Medicare benefits because of my cardiomayopathy and CHF. I was never denied as is the norm here or denied twice and find an attorney. I was simply ignored.
     With no official denial, I was in limbo and had nowhere to appeal. Calls were not returned by the SSA agent. Last spring I was told by telphone that I'd been approved in March of this year but nothing happened. I wrote letters, left voice mail messages but I got no more response.
     Finally I called my US Congressman's local office. His assistant got right on it and the SSA office told her I'd hear something within 30 days. I did not, so I called my Congressman's office agian. Today I received a Medicare card. When I opened my bank statement today there was an amazing amount of money credited to my account. I fear it is a mistake and dare not spend a dime until I know that I really do get disability benefits.
     So my point is that if anyone is having this same frustrating experience, call your Congressman. They have people who know people and can get through to them and cut through the red tape and end the runaround. Donna V. dmvditty@aol.com
 
Jon's note: Hiya Donna, That's one reason we suggest it on our disability page and place a link there to a list of Congresspeople for every state. That was the only reason I got my check, which got "lost" before it reached me.  <g>


Donna V, September 30, 2006 - Hi everyone, I had my BiV pacer checked today. There is a new EP doctor in my cardiologist's practice and he did not do my procedure of almost two years ago. I remain a pro-BiV patient.
     My EF had gone down to around 5% before I had my BiV device implanted and it seems to remain around 35% now. This "new" EP doctor told me today that those with idiopathic/non-ischemic cardiomyopathy seem to do better with BiV pacers than those with ischemic damage. I'm of the non-ischemic/DCMtype. So far I've never been zapped by the ICD part of the device, but in almost 2 years I show only two minor runs of arrhythmia which self-corrected before the ICD fired. They tell me my heart beats on its own sometimes. (?) I prefer to think the BiV device is pacing me right at all times and the ICD is there if I need it. Donna V. dmvditty@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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