The paperwork never ends The Archives
January 1-15, 2002 Archive Index CHFpatients.com

Jon 1-1     mailing lists, forms, etc,...
 
Scott Brown's 1-2 reply to Marc S' 12-31     book suggestions
 
Ernie's 1-2 reply to Scott Brown's 12-28     Coreg and sleeplessness
 
Jon's 1-2 reply to Marc S' 12-31     book topics
 
Joseph P's 1-2 reply to Nancy S' 12-29     ICD zap experience
 
Christy W's 1-2 reply to Tracey C's 12-29     flax seed use
 
Bev T's 1-2 reply to Ernie's 1-2     Coreg & sleeplessness
 
Bev T 1-3     Why no 50mg Coreg tablets?
 
Anthony P 1-3     muscle cells transplanted into heart questions
 
Jon's 1-3 reply to Anthony P's 1-3     muscle cells transplanted into heart
 
Ruthie A's 1-3 reply to Marc S' 12-31     book topic suggestions
 
Herbert L's 1-3 reply to Marc S' 12-31     book topic suggestions
 
Jon's 1-3 reply to Marc S' 12-31     book topic suggestions
 
Scott Brown's 1-3 reply to Ernie's 1-2     fatigue, insomnia, Coreg
 
Donna 1-4     seek ablation experiences
 
Pat M 1-4     coughing & choking, back pain & stomach ache
 
Andrea 1-4     ablation, Lanoxin questions
 
Lisa Ellis 1-4     ablation experience
 
Tom W's 1-4 reply to Bev T's 1-3     Coreg tablet size
 
Katherine H 1-4     Coreg tablet size
 
Joseph P's 1-5 reply to Donna's 1-4     ablation, implants
 
Ernie's 1-5 reply to Scott Brown's 1-2     Coreg & insomnia, and more
 
Ernie's 1-5 reply to Bev T's 1-2     Coreg tablet sizes and dosages
 
Suzy C's 1-5 reply to Marc S' 12-31     book topic suggestions & more
 
Nancy S 1-5     ICD responses, thanks
 
Nancy S' 1-5 reply to Pat M's 1-4     choking swallowing food and drink
 
Jon's 1-5 reply to Nancy S' 1-5     choking swallowing food and drink
 
Ernie's 1-5 reply to Jon's 1-5     Coreg dose & CoQ10 question
 
Debbie 1-5     intro, should these symptoms concern me
 
Jan S 1-5     ablation experience, seek chemo CHF experiences
 
Jon 1-7     correcting a mistake in posting!
 
Sharon 1-7     seek CoQ10 recommendations
 
Rob C 1-7     angioedema, ACE drugs and more - questions
 
Jon's 1-7 reply to Rob C's 1-7     angioedema, ACE drugs and more
 
Debbie's 1-7 reply to Pat M's 1-4     restricted throat, meds & more
 
Jon's 1-7 reply to Debbie's 1-7     angioedema
 
Pam 1-7     lots of questions
 
Betty 1-8     got CHF doc, very happy
 
Jamie's 1-8 reply to Debbie's 1-7     weight gain, blood pressure, questions
 
Jim H 1-8     had a stroke but am back now
 
Jon's 1-8 reply to Jim H's 1-8     how are you doing?
 
Debbie's 1-8 reply to Jon's 1-7     swallowing problems & more
 
Jon's 1-8 reply to Debbie's 1-8     misread your post, chat room
 
Diana 1-8     fish oil question
 
LaRae T 1-8     Aldactone side effects - questions
 
Scott B's 1-9 reply to Pam's 1-7     ACE inhibitor side effects & CoQ10
 
Jon's 1-9 reply to Scott B's 1-9     ACE inhibitor side effects & CoQ10
 
Jamie S' 1-9 reply to Lisa E's 1-4     RFA (ablation) experience
 
Debbie's 1-9 reply to Jamie's 1-8     Aldactone, weight gain & more
 
Karen K's 1-9 reply to Diana's 1-8     fish oil & more
 
Bev T 1-9     worrisome throbbing in my neck
 
Lisa R 1-9     seek similar test experiences
 
Lynn D 1-9     biventricular pacemaker questions
 
Bill B 1-9     illness affecting credit report - questions
 
Richard M 1-9     update - getting better & more
 
Jon's 1-9 reply to Richard M's 1-9     amiodarone dose question
 
Linda O's 1-9 reply to LaRae's 1-8     bad Aldactone experience
 
Richard M's 1-9 reply to Jon's 1-9     amiodarone dose - question
 
Jon's 1-9 reply to Richard M's 1-9     amiodarone dose
 
Andrea M's 1-9 reply to Lisa R's 1-9     similar test results, experience
 
Cristina L's 1-9 reply to Marc S' 12-31     what do all these numbers mean?
 
Fred D's 1-10 reply to Bev T's 1-9     feeling heart beats in neck
 
LaRae T's's 1-10 reply to Linda O's 1-9     Aldactone side effects experience
 
Pam's 1-10 reply to Bev T's 1-9     feeling heart beats in neck
 
Shirley 1-10     seek pacemaker and ICD experiences
 
Katherine H's 1-10 reply to Shirley's 1-10     seek pacemaker experiences
 
Lucy 1-11     what do I put on my dry skin?
 
Rosemary 1-11     upper back & arm pain questions
 
Autumn's 1-11 reply to Diana's 1-8     omega 3 oil sources
 
Autumn 1-11     CHF meds and neuropathy
 
Shirley's 1-11 reply to Katherine H's 1-10     biventricular pacing & more
 
Amelia's 1-11 reply to Richard M's 1-9     amiodarone experience
 
Dawn T's 1-11 reply to Shirley's 1-10     older ICD implant experience
 
Dionne 1-11     early hours chest pains
 
Russ B 1-11     seek IV drug therapy experience
 
Scott B's 1-11 reply to Bev T's 1-9     feeling heart beat in neck
 
Richard M 1-11     what can I do about this cough?
 
Bill D's 1-12 reply to Richard M's 1-11     cough drops experience
 
Ernie's 1-12 reply to Bev T's 1-9     lots of symptoms
 
Peggy 1-12     high triglycerides question
 
Hope M's 1-14 reply to Lucy's 1-11     dry itching skin experience
 
Richard M 1-14     has anyone had cardioversion and then this?
 
John W 1-14     replying to various posts
 
Jean C's 1-14 reply to Lucy's 1-11     dry irritating skin experience
 
Sheryl C's 1-14 reply to Richard M's 1-11     check into switching meds
 
Mary 1-15     full feeling when sitting or using arms - questions
 
Bernard 1-15     IV drug to cardiovert - question
 
Joseph P's 1-15 reply to Richard M's 1-14     heart rhythm & implanted devices
 
Ben B's 1-15 reply to John W's 1-14     clinical trials, life span, & more
 
Pam 1-15     supplements questions, Slimfast question
 
Jon's 1-15 reply to Pam's 1-15     I hope others also reply
 
Steve M's 1-15 reply to Shirley M's 1-10     biventricular pacemaker experience
 
Richard M's 1-15 reply to Bill D's 1-12     sleep aids
 
Jon 1-15     bios on Who's Who page - please read
 
Richard M's 1-15 reply to Joseph P's 1-15     cardioversion and ablation
 
Donna's 1-15 reply to Shirley's 1-10     biventricular pacemaker information


Jon, January 1, 2002 - Hi everyone, Well, I installed new forms scripts and mailing list stuff lately and naturally I made a mistake. :-( I must now start my mailing list over again due to loss of a critical file. I apologize. If it's worth it to you, please sign up again at www.chfpatients.com/lists.htm. I will be sending out mailings twice in the next week, which will help you know if you got signed up successfully. No confirmation is needed to sign up - it's a one-step process. Again, I apologize. I'm just very tired and tired people make mistakes. If anyone understands, it'll be you guys. ;-) In the future, I'll be keeping a copy of the file on my hard drive and burning it to CD every other day.
     Likewise, I moved to a more secure script for my forms and need to know if you are having any trouble posting. If so, please tell me which page gave you trouble. Thanks.
     My heart function is really good for someone with my history (current EF = 45%) but I sure don't feel that much better, I can tell you. If you have seen a lot of improvement in your EF but still feel rotten (and if you exercise regularly, so your feeling bad is not due to just being out of shape), please e-mail me and let me know if you are interested in taking part in a survey later this year for a large CHF clinic. Their doctors are interested in CHF patients who have much-improved numbers (usually from beta-blocker use) but don't feel much better.
     I'll need to know if you take a beta-blocker. When the survey will be done or how, I don't know. It might not ever get done but it looks possible and I am very interested in it. Some CHF docs are very interested in this patient group and are itching to get a jump on their associates. They think my site may be a way to get a lot of patient participation quickly. You must give a current, working e-mail address and real first name and last initial. Beyond that, nothing is needed until the survey itself comes out, which will be script-driven and confidential.
     I haven't seen any real ground breaking research lately - for maybe 18 months or so. The first human trials of an artificial heart are overdue and VRT is finally getting a true test. Beyond that, a lot of drug therapies are failing the test of large clinical trials. Maybe eplerenone will show benefit, especially for those of us who can't take Aldactone (spironolactone). This sure makes it hard to put new info up since if I don't think it's really important, I won't put it on my site. <g> Hang in there - I am sure more treatment advances will soon appear!
     Another year is here. I hope you make the most of it. To those who get benefit from this site, I sure am glad it helps. To those who get benefit but complain about the Christian aspects of my site, I'm glad it bothers you. If talking and reading about God bothers you, then you know somewhere deep inside that God is watching.
     Jesus is the reason this site exists and He is certainly the only reason I continue to pour so much money, time and effort into it year after year. I hope you get to know Him as I have. It ain't about religion, it's about the man named Jesus. Now, keep exercising, eating low sodium, and maybe even reading Jon's Place from time to time! <g> Jon.


Scott Brown's January 2 reply to Marc S' December 31, 2001 - Dear Dr. Silver, I am replying to your request about the types of things we would like to see in your book. Your book is essential reading in our household. Your book does a lot to help victims of CHF. I am a patient of Dr. Stuart Smith here in Kitchener, Ontario. I think he studied under you for a time...? He is truly an exceptional doctor.
     My father was diagnosed with CHF when he was 45. He is 60 years old now. In August, I was diagnosed with class 4 CHF at the age of 31. I'm sure my class has improved greatly since my diagnosis. I feel much better since I have been under the standard drug regimen. Your chapters on CHF in young people do not really go into life expectancy for young people. On Jon's board, I know there are plenty of people who are diagnosed at a young age and life goes on. I was off work for 2 weeks and I have been back full-time since. I have been keeping active but I am frequently tired; consequently, I am not as active as before diagnosis. So, here are some areas I think it would be useful to explore. These questions were really important to me:

Thanks for reading my requests. I look forward to the next release of the book. Sincerely, Scott Brown. kitchenerguy@hotmail.com


Ernie's January 2 reply to Scott Brown's December 28, 2001 - Hi Scott, I live in Vancouver, British Columbia. I was diagnosed with idiopathic cardiomyopathy in 1979. I was in chronic atrial fib at that time. My current heart size is 88mm, my EF is 20%, and 2 of my heart valves are leaking severely. I am on 75mg Coreg, 20mg monopril, 0.5mg digoxin (Lanoxin), 20mg warfarin and 20mg Aldactone (spironolactone). I am over 200 lbs too. I have had trouble sleeping after my nightly dose of 37.5mg Coreg. My pharmicist has had that complaint from other Coreg users. I was going to ask for 50mg twice a day and I was wondering if you have noticed sleeplessness. When it happens to me, I then usually slip into anxiety and chest pains. Thanks, Ernie. rainy_day48@hotmail.com


Jon's January 2 reply to Marc S' December 31, 2001 - Hi Marc, I would definitely like to see several topics addressed at length. <g> Much more detail on exercise, and how exercise testing may or may not relate to our CHF versus our general fitness level; how can we tell, without a $1500 test, to what extent we may be over- or under-training?
     Still on exercise, some well thought out and specific guidelines on weight training (resistance training) basics would help a lot of people; Not specific programs for individuals but details on the range of possibilities and how to apply each one, should it be suited to a person's situation. Frankly, even my own CHF doc - who is very, very good - is simply not up to speed on weight training. I have to follow a lot of his advice, but I know more about the techniques and practical application than he does. That is very frustrating. Others are in the situation of knowing little or nothing themselves and their doctor gives them inaccurate information and that's even worse.
     Maybe some guidelines on the theory would help - decreasing weight with increasing reps over a workout, the standard 6 to 12 reps/3 set per muscle group theory, how to hit the most muscle groups per exercise (basically, powerlifting adapted to the CHFer or combining movements, like hammer curls/dumbbell presses as one movement), and so on. Since exercise is obviously critical - critical - to our life with CHF, the more and better (more specific) information about it, the better.
     A more detailed descrition of the various cardiovascular stress tests would help. See the end of this thread to see how easily the varied terminology and the loose way doctors use it confuse us: Jon's 12-22 reply to Judi's 12-18. Maybe a strong discussion on the dinstinctions between various nuclear, non-nuclear, and inotropic stress tests, as well as more on diagnostic testing would help. Parallels and differences, reasons for the test and risks, shown in tables might be a good aid. This is an area where I get a lot of e-mail questions because the doctor's use of test names and test descriptions has people very confused and not a little timid about taking tests.
     News on aldosterone antagonists woud be welcome. What's the word on eplerenone, etc,...? What do you think about the latest study on torsemide versus furosemide? How about an opinion on the artificial heart trials and potential for this as an alternative to heart transplant? Do you see the cost of VAD use coming down in the near future as it becomes more common (accepted)? Do you have patients using VRT pacemakers, and if so, are you and they satisfied with the results? Details on patient selection in these areas would be great as well, letting folks know whether they should even consider bringing them to the table with their own doctor or not.
     The comment from Scott about CHFer age is right on. Take a look at the Me Too listings starting at the most recent and working backward and you'll see that the trend is definitely toward younger people being diagnosed and desiring to educate themselves. It's an audience that needs more written toward their specific age group and their age-specific concerns. These are often more active people than older CHFers and have some different concerns, both short-term and long-term.
     Diastolic dysfunction is also being named more often by docs in general and so any further clarification on therapies, diagnostics, life style differences in that area versus systolic dysfunction would be great.
     How about the termination of Endecrin production by the pharmaceutical company? Can you address options for CHFers allergic to sulfa-related diuretics like Lasix who now seem to have no shot at an oral diuretic?
     I may have more later. I sort of have an overful plate while my whole family is home. ;-) Jon.


Joshua's January 2 reply to Nancy S' December 29, 2001 - Hi, On New Year's Day I was driving home from my sister's home when suddenly things started going black. I think I was passing out, when suddenly I was zapped by my ICD. I instantly knew what had happened but didn't really know what to do since I was on a rural road and at least 15 miles from any hospital. I called my wife on the cell phone and kept going. She met me at the ER in a rural hospital. I was so scared I was shivering all over and couldn't stop. They had no monitor, so they did an EKG. All my docs were at the Sugar Bowl and of course their staff knew nada. They released me to come home.
     I slept some but I'm haunted about being rezapped since nothing has been done to check my InSync pacer, which doesn't seem to be pacing too well right now. So here I sit. The moral to this story is to never have a problem during a holiday season! I'm just going to gut it out until next week, I suppose. If you ever get zapped, believe me, you will know it. It leaves you very weak. JATilton@tilda.ws


Christy W's January 2 reply to Tracey C's December 29, 2001 - Hi, I just want to make a quick note about flax seed. The seed itself is available at most health food stores and is a great source of omega 3 fatty acids and has helped me tremendously overall. The seed must be ground in order to have any benefit, though. I use a coffee grinder. A typical amount is between 1 and 2 tablespoons. I add it to a homemade whole grain granola. It tastes similar to wheat germ. I found the granola recipie in "Stress, Diet, and Your Heart" by Dean Ornish, MD. I hope this helps. breezip@hotmail.com


Bev T's January 2 reply to Ernie's January 2, 2002 - Hi Ernie, I read about your Coreg dose and sleeplessness. I weigh only 155 pounds (female) and take 50mg Coreg twice a day. When I started feeling like I couldn't sleep, my doc started me on a very low dose of Zanax (half of a 0.5mg pill). I know it's habit forming and I can't get off it but I've been on the same dose for 7 years now! It works, Bev. Mtnmama008@aol.com


Bev T, January 3, 2002 - Hi, Does anyone know why Coreg isn't made in 50mg tablets? It sure is expensive to take two 25s twice a day - nearly $200 per month for me. How could we encourage the pharmaceutical company to make 50mg tablets, or am I one of a few that take that much? :-) Bev. mtnmama008@aol.com


Anthony P, January 3, 2002 - Hi Jon, I'm glad you are doing better. I'm hanging in there also. I was watching Fox News and there was a report about doctors finding that heart muscle cells repair damaged hearts. Did you hear it also? Would it help us with cardiomyopathy? I was pretty thrilled with this news. Tthank you and God bless, Tony P. aparascandala@r.r.s.i.com


Jon's January 3 reply to Anthony P's January 3, 2002 - Hi Tony, You can read more about that procedure here and here. The big problem with this therapy right now is that it was done at the same time bypass surgery was done (CABG), so there is no way to tell if it gave added benefit beyond what bypass surgery normally gives by itself. That was a pretty bad move on the part of the French researchers. The USA researchers (UCLA, Cleveland Clinic, University of Pittsburgh) went the same route. This makes a true test of the procedure's value impossible. I assume they are phase one trials, just trying to show that the procedure does no harm. Then they can move into phase 2 trials that will start trying to show benefit for patients.
     Doris Taylor's work at Duke (she's a biologist) on "muscle plugs" is very similar and I think it is moving into human trials this year so we'll know in a year or two whether this kind of therapy holds promise for CHF in general. At first it will probably only be tried in heart attack victims but CHFers are the eventual target for this kind of therapy, due to the money involved in CHF. Jon.


Ruthie A's January 3 reply to Marc S' December 31, 2001 - Hi Dr. Silver, Scott and Jon sort of stole my thunder by saying exactly what I wanted to say! <g> But I want to repeat a couple of things just for emphasis, since there is power in numbers.
     First, as a patient diagnosed with diastolic dysfunction, I am particularly interested in a fresh discussion of the differences in diastolic and systolic dyfunction - research, diagnosis, treatment, etc. Also, I have struggled with the comments from physicians that I am "too young" to have CHF. I was 46 when I was diagnosed and now at nearly 51, these comments are finally diminishing. How young is too young? What is the current thinking about CHF in younger people? Are there any studies comparing the diagnoses of the elderly to the diagnoses of the young and middle-aged person?
     I have a parent with CHF as well and am interested in the question of familial congestive heart failure. Have there been any studies on that subject? Is it just coincidence, or is there a genetic basis? I am looking forward to reading your new edition, Ruthie A. rlaba51@yahoo.com


Herbert L's January 3 reply to Marc S' December 31, 2001 - Hi, I'd be interested in deeper info into the test results for echo testing. My CHF doc seems to think that I should be satisfied with the knowledge about my EF - the number. For such an expensive test it must give him more info, and I'm sure it is his inability or lack of desire to explain it (maybe he thinks for my benefit), but it troubles me that information is there that can be compared with other echo tests that can feed my mind info about myself.
     The greatest anxiety since being diagnosed 3 years ago has been not having significant info about CHF to make me feel like I understand what CHF is doing to me. That, and how to control or stabilize myself when I have these weird or non-normal feelings within my body. the-honey-do@charter.net


Jon's January 3 reply to Marc S' December 31, 2001 - Hi Marc, Herbert makes an excellent point. I get lots of questions via e-mail about test result reports. Technicians and doctors use acronyms and shorthand terms more often than proper descriptions and this leads to further confusion. This is made worse because from institution to institution, different terms are used to mean the same thing. A list of acronyms and test report terminology would be a big help.
     Also, some detailed discussion of what results are shown on an echo/cath/MUGA report other than EF and how they might apply to a person's individual health situation. Finally, a fairly extensive medical glossary including terms often used in test reports would be a valuable addition to any CHF book. Even better - a glossary that has been vetted by patients so it is in honest-to-goodness plain English!
     Some of these suggestions may seem too individualized, since results and treatments vary from person to person. However, with so many CHFers coming online and educating themselves (and reading books like yours), we CHFers both need and want more detailed knowledge about every aspect of our condition. This is not going to diminish. In fact, I foresee people with heart failure getting more and more demanding as the holy glow doctors have enjoyed in the USA gets tarnished from patients getting better educated medically.
     No insult to the profession intended, just pointing out that there is no such thing as too much detail as long as it meets the needs of the entire audience - not intimidating the more casual reader but satisfying the more driven patient. You might want to make chapters two-part: one part for the interested layman, with part two being more in-depth and technical for the group who wants to always know more. Frankly, that might grab the attention of some PCPs, and gain you a wider buying audience - to the benefit of us CHFers. ;-) Jon.


Scott Brown's January 3 reply to Ernie's January 2, 2002 - Hi Ernie, I am ready to sleep most times in the day and the night. Ironically, I must admit that I stay up quite late in the evenings. In the evening, I feel the least tired. I never drew a relation to Coreg but it is possible. I did have problems sleeping when I was first diagnosed and very ill. I think it was a combination of shock from learning about my condition, and that "lousy" feeling you have when your heart is failing. I could feel every heart beat under my arm and down my side.
     Do you feel tired, but listless? Or do you have problems feeling tired at all? I was sort of blaming problems sleeping in the evenings on getting too much sleep and rest during the day. Take care, Scott Brown. kitchenerguy@hotmail.com


Donna, January 4, 2002 - Hi all, Has anyone here had any experience with ablation? We just came from the doctor's for my husband and he is being scheduled for ablation and/or a pacemaker. I am going to go on the web and do a search but would appreciate it if someone has had any first hand experience that they would share. He is in A-fib and has had a problem with that for years. He cannot take any of the medications so the doc says this is his only option. It seems when his heart rate races his pressure drops to 60/39 and when his heart is trying to get back to a normal rhythm it skips and pauses and he has a short blackout. Thanks, Gramme. gramme@cfl.rr.com
 
Jon's note: remember the Links page too  ;-)


Pat M, January 4, 2002 - Hi, Does anyone else have low back pain and a dull ache in the abdomen due to excess fluid? This is new for me. Usually it is just hands, feet and ankles. I assumed it is extra fluid and doubled my Lasix for a couple of days. Also, has anyone noticed if they have increased incidents of coughing and choking on tiny bits of food or drink? I hate to be looking for trouble but I'm concerned. Thanks for your input. Happy new year, Pat M. pmarble@tellico.net


Andrea, January 4, 2002 - Hi, I've not posted in a long while due to computer problems. It is good to "see" you all again. I have a question. I had an ablation in September, 2001. After the ablation my digoxin (Lanoxin) was discontinued. That left my meds at 80mg Lasix daily, (Jon's note - I am unsure what the dose on the following is supposed to be) Toprol and Cozaar. Before it was stopped, my Lanoxin had been 0.25mg daily. I had the ablation due to SA node reentrant tachycardia. I immediately felt stronger and had more stamina, and fewer palpitations and dizzy spells.
     In early November I noticed an increase in palpitations and dizziness, not nearly as severe as before the ablation but rather markedly more intense and frequent than since the procedure. I saw my cardiologist on 11/27 and was put on a 30 day event monitor. That has been sent back in and I'm waiting for my cardiologist's secretary to call with an appointment for me to hear the results of the monitoring.
     Has anyone ever had to have ablation repeated? Could this return of symptoms have anything to do with stopping Lanoxin? I had been on Lanoxin for the CHF, not for arrythmias. The arrythmia was and is fairly new. I'd been on Lanoxin since diagnosis in 4/2000. I'm a little worried, a lot frustrated and frequently outright scared these days! It seems every time I get something positive, another negative pops up. Sorry to be a whiner but I really needed to vent. Thanks. azure_skye@msn.com


Lisa Ellis, January 4, 2002 - Hi, I just had an RF ablation for tachycardia (I have cardiomyopathy). The ablation has gotten my heart rhythm back to normal and I no longer have palpitations or rushes. Early days though, as they can come back, I believe! Still, so far so good. It was a really simple operation too. I was home the same day! lisa661@yahoo.com


Tom W's January 4 reply to Bev T's January 3, 2002 - Hi Bev, The pharmaceutical company does not want us all to buy 50s and cut them in half. <g> tew4515@yahoo.com


Katherine H, January 4, 2002 - Hi, I saw my cardiologist yesterday and am having some arrhythmias that are cause for concern. We are dropping my digoxin and seeing if that helps but if not, there is some beginning discussion about a cardiac resynchronization therapy device. Has anyone out there had one implanted and if so, has it helped? What are the pros and cons of going that route? I'm concerned about long-term prognosis with a device implanted in me. Thanks for any information you can provide in addition to what is available at this web site. I've already checked out that very helpful information, Katherine. kholian@metropo.mccneb.edu


Joseph P's January 5 reply to Donna's January 4, 2002 - Hi Donna, I have just come from my electrophysiologist and he wants to do a ablation because of a-fib. My heart used to do a lot of funky things but he installed an ICD about 6 months ago and it has worked to help the abnormal rythym. I am schedualed for an ablation in a few months to correct my a-fib because the ICD does not control this. I am told by my doc that this a simple procedure, about the same as a heart cath. I really can't wait for this, but he wants to make sure the wires are secure in my heart from the ICD implant. God bless, Joseph P. (If you live in the southern Illinois area I can give you his name and address) andol@yhaoo.com


Ernie's January 5 reply to Scott Brown's January 2, 2002 - Hi, Scott, I am the same. I can sleep like a rock in the daytime but after my night's dose of Coreg I am generally up all night. Until 2 years ago I did better because I was working as a forester and was very tired when I got home, but due to the heart degeneration I now just work a part-time office job. Chronic atrial fib and an EF of 20% along with aging has made me more of a couch potato. Now an agressive day will make me rest for days afterward but when I was young I thought I was just getting lazy.
     They tried a cardioversion in 1980 three times but I wouid not convert to sinus rhythm. My cardiologist Dr, Muscovich said that the longer you have been in atrial fibrillation the harder it is to convert. He was head of the cardiac unit at VGH at that time and his opinion is that i contracted viral cardiomyopathy before my teens and my body fought off the virus but I was left with a weakened heart .He does not think I know what it is like to feel normal. I just got a letter of support from him to access a small company pension that is locked in until I am 65. In his diagnosis to the pension branch he estimates that barring a heart transplant, I will make it 20 months. I was not aware but when they do the angiograms (caths) they pay special attention to the pulmonary artery. He says mine will not take the pressure of a healthy donor heart. I just get more meds and a pat on the back for lasting so long.
     I was married in 1982, with my wife being aware of my condition and that we might only have a few years together. Fortunately their estimate of life expectancy was totally wrong. I have now exceeded it by almost 20 years, even though there have been tough times. My son is now 18 and at Carleton University, my daughter is 16, and both are very healthy. We did go for counseling at my insistance so she would know the whole story, due to the medical condition and the fact that since I grew up in foster homes I also fight chronic depression. We are nearing our 20th anniversary and she says she has no regrets, even though i am not the easiest guy to get along with.
     I still say those terrible words "if only." Self pity is a good trap but who has a guarantee on life? I will be 49 this year and I am so grateful she thought with her heart instead of me or doctors. It is time for my banjo picking and reading while lying in bed, like every night, noticing my irregular heart beat or dealing with chest pain, but at least I have eyes to see and food to eat; that is more fortunate than the majority of this world. Take care, Ernie. rainy_day48@hotmail.com


Ernie's January 5 reply to Bev T's January 2, 2002 - Hi Bev, I take three 12.5mg Coreg tablets in the morning and in the evening. I am asking the doctor why I am not being increased to 100mg per day. I asked the pharmacist if Coreg comes in 50mg doses and she said she has them in stock right now and has had them for quite a while. I want to go from 6 pills a day to 2 with the increased dose because my EF has been at 20% for 2 years on the 75mg dose. I am just not sure why my cardiologist decreed a target level of 75mg for me. Yours truly, Ernie. rainy_day48@hotmail.com
 
Jon's note: Please re-check with your pharmacist. The manufacturer's web site states that they don't make a 50mg Coreg tab. Let us know!


Suzy C's January 5 reply to Marc S' December 31, 2001 - Hi Dr. Silver, While you're at it, would it be possible to include a chapter on how the heart and lungs work together? Specifically, can lung damage make the heart work harder? Does radiation or chemotherapy cause CHF or hasten its onset? Does the heart weaken when the lungs are sick, or do the lungs get sicker because the heart is weak? My husband's doctors, both heart and lung, each acknowledge both problems but continue to blame the other problem for his condition.
     More information on how exercise benefits both or the combined conditions would be helpful. More information on how much exercise is too much, can the patient push himself too far? Is exercise for the heart dangerous to the lungs? Can the same exercises be used for both?
     Thanks for your help, your interest in all of us who share this condition in one fashion or another. I'm looking forward to your new book. Best to all of you on the site and Jon, I hope you are feeling much better. Have a great year, all of you. sskbc@optonline.net


Nancy S, January 5, 2002 - Hi, I wanted to thank all who wrote with advice and encouragement to my posts about my ICD. I live in north central Arkansas and go to UAMS. There is a representative with Medtronics that is assigned to the hospital who comes and evaluates the device when I go for checkups. Thanks Joe, for offering to give me your doc's number and to the other Joseph, I am just glad that you were close enough to a hospital that you made it there without serious complications. I'm sure God was watching over you that day. I hope everyone has a happy and healthier New Year and may God watch over us all, Nancy. ns1@alltel.net


Nancy S' January 5 reply to Pat M's January 4, 2002 - Hi Pat, I've often had the same problems with choking on small amounts of food and liquids. I didn't know if it was connected to my CHF but I have to admit I've wondered. Let us know if you find anything out about it. ns1@alltel.net


Jon's January 5 reply to Nancy S' January 5, 2002 - Hi Nancy and Pat, This is just a wild guess, but if you take an ACE inhibitor and have this kind of "throat" problem, I strongly suggest that you see your CHF doc about possible mild angioedema. That's a possible ACE inhibitor side effect. Mild cases are often overlooked but if you have a mild case, it could potentially get serious at some point, and serious angioedema can be very bad news. Check it out - better safe than sorry. Jon.


Ernie's January 5 reply to Jon's January 5, 2002 - Hi Jon, You're right. I phoned the pharmacy and they had given me the dosage for novo-sertraline, which the specialist wants me on rather than Xanax. The maximum Coreg dose available is 25mg.
     The pharmacist recommends that I take Coenzyme Q10. Has anyone had any sucess with that? Regards, Ernie. rainy_day48@hotmail.com


Debbie, January 5, 2002 - Hi Jon, I am new here and I like your site very much, Thank you for all of your effort and time. My medical history in brief and some questions: I have a cardiologist (not a CHF specialist). My diagnosis is moderate aortic valve regurgitation, mild mitral valve regurgitation, mild CAD, hypercholesterolemia (total = 270, LDL = 190, HDL = 43, triglycerides are okay), hypothyroid disease (Hashimoto's), lower arm lymphedema (both arms), arthritis in my hands and back), and I have only one kidney (donor for sister). I am on 75mg Aldactone (spironolactone), 0.88 Synthroid (9 years), Estrogen patch (6 years), and I will be changing from Zocor and Lotensin to Procardia and Lipitor because of side effects from the former meds.
     I have an echo every 2 years.) A recent angiogram (cath) showed moderate AI, mild focal CAD, low right and left-side filling pressures, and slightly depressed cardiac output. I had the cath because an echo revealed heart wall motion abnormalities, and an adenosine/thallium test revealed high-risk CAD. That was wrong, I didn't image well, I was told. In addition, the thallium test and then heart cath was ordered because I had symptoms worse than before for 2 months. With mild to moderate activities, I very easily fatigued, very short of breath, had chest pains, felt lightheaded or dizzy, and had a dry cough (I wasn't then on an ACE inhibitor). I still fatigue easily and am short of breath with moderate, or at times mild activities. I still have a dry cough, short-term memory loss, hardly ever wake up feeling refreshed, and my limbs will easily go numb in normal positions.
     Are these symptoms highly indicative of CHF. Should I be concerned? Thank you for your help, Debbie. dennydebbie@ameritech.net


Jan S, January 5, 2002 - Hi, I was diagnosed with cardiomyopathy in January 1998. I had a lot of a-fib. Medication pulled me out of it but I continued to go in and out quite regularly. Meds caused me to have bradycardia (too-slow heart rate), hence a pacemaker, but I still had a-fib. In February of 1999, I had an ablation of my AV node. I still have a-fib episodes but it no longer is damaging my ventricle.
     My ablation procedure went quickly but they knew what path in my heart they were wanting to burn. I have done much better since the ablation in how I feel. My damage to my heart is fron the chemo and radiation I had in the late 1970s. I'd be interested in hearing from others with damage from chemo/radiation. geschuppja@aol.com


Jon, January 7, 2002 - Hi everyone, I posted a message from Joshua under Joseph P's name. Please see this post, where I have now corrected the name. The e-mail address was correct. Jon.


Sharon, January 7, 2002 - Hi All, I like the info on Coenzyme Q10 elsewhere on this site. I would like to know which form of CoQ10 is best. Also, does anyone recommend a particular company as best source? This I feel to be important since nutrient supplements are not regulated. If I will spend a hunk on the things, I would like them to be effective! Thank you. sharewilson@yahoo.com


Rob C, January 7, 2002 - Hello everyone, Last week I had the back of my throat swell up and nearly block the airway. The doctors believe this was a reaction to prinivil (20mg per day), which I've taken since being diagnosed with CHF in May. Hence they replaced prinivil with combination of hydralazine and isosorbide mononitrate. The doctor and myself were disappointed since prinivil seemed to be working. Everything I read on this excellent web site and other areas says ACE inhibitors such as this are a key part of CHF treatment. I don't see the other types of drugs above spoken of or endorsed much.
     I think I may ask the doctor if I can start prinivil again and begin with a small dose or would one of the other ACE family work without reaction? It's possible the reaction was to food or conjunction with sore throat and I'd hate to lose the benefit of medication due to that random occcurrence. If it matters, other drugs in the mix include 40mg Lasix, 25mg spironolactone BID, digoxin (Lanoxin), 6.25mg Coreg BID, and aspirin and potassium. Any inputs greatly appreciated. Thanks. robert40@home.com


Jon's January 7 reply to Rob C's January 7, 2002 - Hi Rob, The drug combination you are on isn't used much because many patients cannot tolerate it due to too-low blood pressure. ACE inhibitors are definitely better overall but if you can't take them, you might consider trying an ARB. The Aldactone (spironolactone) works on the same bodily system as ACE inhibitors, just in a different way and degree so it's good you're taking it.
     You experienced angoiedema and that's not something to take any chances with. If it were me, I'd avoid ACE inhibitors like the plague - a stronger heart doesn't do you much good if you die from a side effect! If you decide to try an ARB after discussing it with your doc, ask if you can start it as an inpatient or while spending the day in his clinic, just for safety in case of a reaction.
     Some people who suffer nausea on CHF meds are actually getting a weird form of angioedema in their gut. If you get nausea, it's something to bring up with your CHF doc, everyone. Jon.


Debbie's January 7 reply to Pat M's January 4, 2002 - Hi Pat M, I am very new here. You can read my January 5 post for my medical history. I have had low back pain for many years now, partly due to arthritis. I also have some pain, dull ache, or pressure discomfort with a bit of labored breathing due to my abdomen being swollen from fluid build-up. Many mornings when I wake up I feel like I have been punched in the abdomen and around my back. This problem doesn't occur only when I awaken. A very moderate amount of fluid intake can cause my tummy to "blow up."
     My cardiologist had me weigh myself in the morning anf evening to determine the fluid weight gain per day. On average, I gain 2 to 4 pounds between morning and evening. Aldactone does help. I am not seriously overweight - 15 pounds - so I don't have the extra weight plus the edema burden on my back or front side, which was a problem 10 years ago until I finally took the weight off.
     Addressing your problem with choking or difficulty swallowing tiny bits of food, this too has been, at the very least, a nuisance for me for many years. It may be caused from reflux, I don't know. Food gets stuck, which causes pain. I have had to learn to relax when it happens and put my arms up or stand up. There are times when I can't breathe easily and if it would last longer than one to five minutes, I would be in serious trouble. I get a little scared sometimes when it happens. I have not been on an ACE inhibitor for very long so it isn't a side effect from an ACE inhibitor as suggested here on this site.
     I was not aware, or didn't listen and take heed of how important it is to take the meds prescribed. It is a long story with my past history as to why I haven't taken the meds prescribed. I am sorry if I haven't helped much but I am sure there are many more on this site who are more knowledgeable than I am who will respond to your post. Take care, Debbie. dennydebbie@ameritech.net


Jon's January 7 reply to Debbie's January 7, 2002 - Hi Debbie, I wonder why you say it couldn't be a side effect just because you haven't been on an ACE inhibitor very long. Practically every source I have consulted says that angioedema can occur immediately after a first dose in some poeple and at any time thereafter. That's why it is strongly suggested that any person starting an ACE inhibitor be kept in the doctor's office for at least 2 hours after the first dose - so they can be watched for angioedema. To quote Drug Info Net, "Angioedema of the face, extremities, lips, tongue, glottis and/or larynx has been reported in patients treated with angiotensin converting enzyme inhibitors, including prinivil. This may occur at any time during treatment." (Source: www.druginfonet.com/prinivil.htm)
     Please check with your doc about the possibility of angioedema. I am not saying that this is your problem (it could be almost anything), but I am saying that it is very important that you be sure one way or another. Jon.


Pam, January 7, 2002 - Hi to all, I was just wondering about CoQ10 and taurine, and those other supplements that are supposed to be good for the heart. I read that CoQ10 doesn't help any but yet some people say it does. Do we need to talk to our doctor about taking these supplements or can we start them on our own? Exercise, what is good exercise - walking, aerobics, bike riding? Does it matter? Should we do it every day? Is anything known to help with irregular heartbeats? I am on digoxin, 50mg Coreg twice a day, lisinopril, and Aldoctone. I take them mostly when I go to bed at night and my cardiologist has told me over and over that they are not harmful. I am getting used to it, as long as I know they are not going to hurt me.
     I am 28 and was diagnosed in May of 2001 with cardiomyopothy and CHF. My EF was 27 to 30% and 3 months later it is 35%. I will have another echo soon. I was in the hospital for a week and then had an arrhythmia and had the option of getting a defibrillator, which I did. It has not fired yet. When I was diagnosed my son was 4 months old so I either got this from a virus or it is postpartum. I have not had any problems at all. In fact, when I went to the hospital I couldn't believe what I had because I went to the doctor thinking I had asthma or something. I wasn't that out of breath. Still, I don't retain any fluid or have shortness of breath. The thing I do have is an irregular heart beat, which for me is an extra heart beat. I hope everybody is doing and feeling well in this new year. mattnpam@juno.com


Betty, January 7, 2002 - Hi Jon, I took your advice and went to a CHF Clinic in Cleveland,Ohio. I love my new doctor. They have put off installing a pacemaker for now, which I am very happy about. They have increased my Coreg to 50mg in the evening for one week and then 50mg twice a day. So far I am doing okay. I am also taking 25mg Lanoxin, 10mg Prinivil, and a baby aspirin. Thus far I do not have to take a diuretic. I have started a walking program and am able to walk 1.6 miles seven days a week. That takes me 30 minutes. I am taking it slow and hope to work up to my 15 minute mile. Also, "The Prayer of Jabez" and "The Secrets of the Vine" by Bruce Wilkinson have given me comfort. In His love, Betty. blbyrley@columbus.rr.com


Jamie's January 8 reply to Debbie's January 7, 2002 - Hi Debbie, I was curious why that is all that bad. Doesn't everyone gain weight during the day? I was told to only weigh once a day at the same time during the day. If I weigh in the evening I am always about 2 pounds heavier - I'm guessing food and fluids, etc. Isn't this the case with everyone?
     Also, is low blood pressure that common? The only heart med I am still on still after being diagnosed with PPCM in August is Zestril, having been taken off Lanoxin and Coumadin after an increase in my EF from 15-20% to 45% in only 2 months. Now my doctor is talking about taking me off the Zestril because my BP is 98/50. What are your opinions? By the way, I am 24 years old and I have another echo scheduled for February. wilhoits@adelphia.net


Jim H, January, 2002 - Hello Jon and everyone else, I have been away for 2 months now. I had a stroke around October 15 so I wasn't able to talk much about it then. So hello, everyone! jimhall@alltel.net


Jon's January 8 reply to Jim H's January 8, 2002 - Hi Jim, It's good to hear from you again. How are you doing now? Jon.


Debbie's January 8 reply to Jon's January 7, 2002 - Hi Jon, Thank you for the info regarding side effects of ACE inhibitors. I visited the site for angioedema, but I truly wasn't on an ACE inhibitor then or anytime at all in the past when these attacks happened. I have had the episodes for more than 12 years. I should have been on an ACE inhibitor for the past 9 years since my cardiologist wanted me to be, for aortic valve regurgitation, which was diagnosed during a kidney donor workup in 1992. I have had the swallowing problem with pain and abdominal swelling with pain problem for at least 10 years. The edema in my hands, face, abdomen, ankles, and feet, I have dealt with since my late teens or early 20s. In those earlier years the edema was milder. Not until my early 40s did it worsen. Now, although not necessarily severe, essentially my entire body fills up with excess fluid. I had a severe problem with fluid retention after surgery for the kidney donation, and ended up in ICU for 12 hours. My face, neck, and extremities were hideously swollen. I don't remember anything because I wasn't awake until the next day but my family told me that I was unrecognizable. Although they ultimately decided it wasn't necessary, a team of specialists were ready to perform a tracheotomy in case I couldn't breathe after pulling the tube.
     Thank you for your prompt attention to my post. I don't know how you can keep up considering your health. Your efforts are very much appreciated, Debbie. dennydebbie@ameritech.net


Jon's January 8 reply to Debbie's January 8, 2002 - Hi Debbie, I misread your post. I thought you had been on an ACE inhibitor but only for a short time, when these episodes occurred. Me, I've gone through so many side effect problems with drugs that I look there first whan I have problems! <g>
     Actually, I don't keep up. I have tons of stuff that should be done already sitting on my hard drive gathering virtual dust. ;-) One of my weakest areas is chat. I have a chat room but I'm never there so it doesn't get a lot of use. If anyone out there ever wants to host a regular weekly chat, just let me know. I have 2 years of Archives that I have never put into proper HTML for upload and I have pages, like one on the 6 minute walk test, that have never been completed due to lack of time. Still, I think the message boards are too important to let slide to get other stuff done. Jon.


Diana, January 8, 2002 - Hi, I have been a CHF patient since 1998. I just turned 47. I have had two severe episodes with edema, being intubated both times in the emergency room. It can be a scary thing waiting around for something to happen. I found that seeing a counselor has helped me face my fears and start living again. This site has been a Godsend to me because I did not feel alone! I am going through the disability retirement process now, and have remembered some of the advice gotten from this site.
     I do need some advice about fish oil - yuck! The doc recommended two tabs (1000mg) per day. What can I substitue that would give me the same benefits of the omega 3 fatty acids but couldn't be tasted all day long? Thanks for any info. Dh3044@aol.com


LaRae T, January 8, 2002 - Hi, I started Aldactone (spironolactone) a month ago. I noticed some stomach and bowel upset but it was bearable. About a week ago I was suddenly hit with severe cramping, nausea and diarrhea. I called my doctor and he said to take my Aldactone in the morning with food instead of at night and I would be okay. I am afraid to do this because I have been so sick thus far. The Aldactone has helped me quite a bit and I can now sleep at night breathe better. What do you think? Has anyone else experienced this with Aldactone use? LaRaePT@msn.com


Jon, January 9, 2002 - Hi everyone, My thanks to everyone who wrote me about participating in the Coreg-related physician survey. Unfortunately, I must write the doctors concerned and tell them not to plan on doing this survey. There just isn't a large enough response from my readers to make it statistically valuable. Sorry, Jon.


Scott B's January 9 reply to Pam's January 7, 2002 - Hi, Almost every cardiologist has a different reaction to a patient trying CoQ10. Here are some of the pros and cons I have heard.
     The pros are that some patients swear it has really helped their condition. Even if it does not help their CHF, it is not likely to be harmful.
     The cons are that CoQ10 is not standardized between manufactures. Which one should you buy? It's expensive. Dosage is based on body weight and you may be looking at about $15 to $30 US a month. CoQ10 has not been studied with the rigor of a regular drug.
     I think the decision is personal. If you have tried conventional medications and your condition is not stabilized, it is worth a shot. If money is less of a factor you might be more willing to give this a shot as well. I think you should always tell your cardiologist if you decide to take any alternative medicine. Now you can all tell me I'm way off the mark!
     With regard to sore throats and ACE inhibiters, I had a very sore throat for many months when I started Altace (ramipril). At first I started at a low dose. I thought I had a bad cold with a sore throat that would not go away. As I increased the dose, my throat became so sore I was close to not putting up with it any longer. I am happy to say I no longer have a problem with sore throat at all. I assume my body just got used to it. I can say that it took hanging in there for about 3 months for the symptoms to ease. Also, it was not helping my breathing because my throat was somewhat swollen. kitchenerguy@hotmail.com


Jon's January 9 reply to Scott B's January 9, 2002 - Hi Scott and everyone, I'm glad you got over your throat problms, but I really think I have to say this: Anyone who experiences a swollen throat when starting or while taking an ACE inhibitor, tell your doctor immediately! This can be the begininng of a rare but possibly fatal side effect. I don't want to scare people who take ACE inhibitors - I have taken an ACE inhibitor safely for over 7 years myself. However, angioedema is nothing to fool around with. Keep your doctor informed about this side effect, always.
     About CoQ10, the only things I would add are that some cholesterol lowering drugs may lower your body's natural CoQ10 level, so you might consider a low dose CoQ10 supplement if you take a statin drug.
     Second, I personally think that CoQ10 may help you if your blood level of CoQ10 is low. I think this happens early on in CHF and that if you supplement your CoQ10 level early, it may help. After your blood levels recover and after you regain some heart function, it may not be such a help. I have no official data to back this up although some studies "suggest" it. This is just one of Jon's gut feelings gained through personal experience and tons of reading and talking to doctors and researchers. I did take CoQ10 for about 3 years after being diagnosed. Jon.


Jamie S' January 9 reply to Lisa E's January 4, 2002 - Hi, I already e-mailed Donna and Gramme about RFA as I scrolled down I saw your post and someone else's. Once you have a RFA on an area, the electrophysiologist knows by the end of the procedure whether it is corrected or not. The area where the ablation took place wouldn't come back but other natural pacemakers in your heart could become more active over time. My electro/cardio doc said I had other pacemakers he could see but they were not causing detectable changes on my EKG. I had areas of my right ventricle done in March of 1998. I have not had tachycardia since.
     Jamie, have you been able to ask your doctor about an ablation for yourself? I had PPCM with an EF of 30% in December of 1997. In August of 1999, just a year after my RFA, my EF was 74%. I had a follow up in 2001 and my EF was 70%. Just a thought. I hope that helps someone. Take care, Jamie. jamiedan@optonline.net


Debbie's January 9 reply to Jamie's January 8, 2002 - Hi, You had a good point, I am assuming that many do gain per day but not all. It has been quite some time ago that my cardiologist had me weigh per day to see the difference. I know I was not taking 75mg per day of Aldactone at that time. Although rare, I know if I missed my nightly dose of 25mg for more than 2 to 3 nights I had more fluid retention, especially noticeable in face, hands, and abdomen. As I recall, I was told and found it to be true that when beginning to take Aldactone it takes awhile (a few days) before becoming effective with fluid loss. This was unlike Lasix for me, which worked immediately but Lasix is a strong diuretic and I was on 50mg to 80mg per day. I have been on Aldactone for many years. Just recently my cardiologist told me that he had just learned that Aldactone has an additional benefit which is to help keep the heart from enlarging. As to your question on low blood pressure, 98/50 does seem low but what is your normal BP? Take care, Debbi. dennydebbie@ameritech.net
 
Jon's note: I hope your doc's comment on Aldactone wasn't too recent. That benefit in CHFers has been published for 2 1/2 years!


Karen K's January 9 reply to Diana's January 8, 2002 - Hello Diana, I thought I would respond to your post about fish oil. Unfortunately, I have no substitute for you. What I want to say is that initially I started taking flax seed oil capsules, one a day. My brother in law, who has had bypass surgery, takes fish oil (2 per day) at the suggestion of his doctor. The Omega-3 fatty acids are touted to be good for the heart. I don't really enjoy eating fish so I started taking 2 fish oil capsules in addition to the flax seed oil. At my most recent cholesterol check (prior to my starting the fish oil) my cholesterol had dropped from approximately 215 into the 190s. I'm hoping the fish oil works as well, Karen. karenk@machlink.com


Bev T, January 9, 2002 - Hi all, This time I need some feedback please. I can feel my heart beat (a throb) in my neck. It's not every beat but enough that I am worried. I'm visiting my daughter in another state and don't want to head to the emergency room unless I have to. It seems to be more frequent when I'm tired and is also happening most often in the evenings. Does anyone else have this experience? Thanks and blessings in the new year, Bev. mtnmama008@aol.com


Lisa R, January 9, 2002 - Hi everyone, I'm just wondering if anyone out there has had the experience of having both a positive ECG and positive imaging portion of a thallium stress test. The weird thing about mine is that they were positive for different areas of the heart so chances are that one or both are false positives. Of course the doc wants a cath, which I have scheduled to be absolutely sure. I was referred for the stress test due to chest pain. I am 38 with DCM diagnosed for 5 years. My cholesterol is above normal but not horrible. Anyhow, any input, comments or personal experiences would be much appreciated. lricks@mac.com


Lynn D, January 9, 2002 - Hi, Has anyone else had the new biventricular pacemaker since the post I saw by Kathy in August? She reported a good boost in energy. What is the prognosis once you are having good results with this device? Thanks for your input. lynndaniel@mindspring.com


Bill B, January 9, 2002 - Hi all, I am still waiting for a response from SSD appeals and have not worked in a few years so my financial status/credit report is a huge mess. I filed for chapter 7 and went through all that, but a lot is still on my credit report even after that. Has anyone had any success cleaning up a credit report due to illness and how do I do it? Thanks and God bless, Bill B. fedx44@yahoo.com


Richard M, January 9, 2002 - Hi, I went to the hospital August 5 and was told that I had CHF and a slow heart beat, with one cloged artery. My EF was between 20 and 25%. They roto-rooted my artery and put in a stent. They also put in a one lead pacemaker. They have me on the following medicines: 20mg Prinivil, baby aspirin, 5mg hytrin, 300mg Toprol-XL, 20mg Zocor, 1200mg amiodarone, and 4mg Coumadin. I also take my own stew of 300mg CoQ10, one teaspoon daily of cayenne tea, 3 tablespoons daily of rice bran and germ, 2 multivitamins a day, and 150mg milk thistle. I watch my salt intake and started cardiac rehab, and am now doing one mile a day in 20 minutes, 5 times a week. I lost about 40 pounds and today I just had my heart shocked back into sinus rhythm. My EF is up to 40% and I am no longer in heart failure.
     I know I have a way to go and I have to be careful. I want to thank everyone on this forum for the wonderful information and also to Jon for this forum. I also want to add that I had a lot of prayers said for me and I believe it to have helped. I will still keep praying for everyone on this forum. Be free to e-mail me if you want. malczew@ameritech.net


Jon's January 9 reply to Richard M's January 9, 2002 - Hi Richard, Are they going to lower your amiodarone dose? That sounds more like a loading dose, which is then usually lowered significantly to reduce risk of side effects. Jon.


Linda O's January 9 reply to LaRae's January 8, 2002 - Hi, I gave Aldactone (spironolactone) the old college try for 6 months. I had stomach aches and pain, and gas and pressure up in my chest, along with diarrhea and constipation. I ended up in the ER in Kansas City over the holidays with bad stomach pain. I did use a nitro and that helped, which only scared me more. They said the nitro helps relax the smooth muscle in the upper stomach. I also had a cocktail that was loaded with lidocaine and belladona and phenobarb, I think. It helped.
     One week later I had severe stomach cramps and a bright red bloody stool with diarrhea. I stopped my Aldactone, which I had always taken in the morning with food. My cardiologist said fine, it was a theoretical drug for me anyway.(?) I don't want to scare you, just let you know that you are not alone out there. I thought the Aldactone had helped me but the gastro problems just weren't worth it. I hope you have good luck with your new regime. norvalo@clarinda.heartland.net


Richard M's January 9 reply to Jon's January 9, 2002 - Hi, You're right. I am now on 400mg amiodarone a day. Those were my starting meds. Amiodarone helped me get my heart back into rhythm but it is one rough med to take. How long should one take amiodarone? Is there a stopping point? malczew@ameritech.net


Jon's January 9 reply to Richard M's January 9, 2002 - Hi Richard, That's a tough question. It depends on your individual situation, so I can't really say. I would certainly discuss it with your doctor, though. Jon.


Andrea M's January 9 reply to Lisa R's January 9, 2002 - Hi Lisa, I had positives on those portions of my thallium study too, also different areas. My cath was negative but I was diagnosed with supraventricular tachycardia and later had an RFA for AV node reentrant tachycardia. My docs and I pretty much came to the conclusion that my chest pain was due to the tachyardia. The ablation worked but I've started to slowly get the same symptoms again, beginning in November so I had to wear an event monitor all of December. I hear the results from it on January 18.
     I've had DCM since 7/97 but my diagnosis didn't come until 4/2000. By then my heart size had gotten way out of bounds so the electrophysiologist I see says that in his opinion, due to my heart's irregular size and shape it tries to and does create its own pathways to fire. I had to just keep at my docs to get them to believe I actually had CM , that it wasn't my "nerves." You'd think they'd listen to us, wouldn't ya? azure_skye@msn.com


Cristina L's January 9 reply to Marc S' December 31, 2001 - Hi, I would like to know if you can explain or indicate in your book the different "numbers" that pertain to someone with cardiomyopathy and CHF. My EF just increased to 35 from 25, my Vo2max test is 27, and my BNP blood test came back at 49. What do all these numbers mean and which is the most important one? clisa@ridgewoodcapital.com


Fred D's January 10 reply to Bev T's January 9, 2002 - Hi Bev, I too experience "heart beats" in my neck. Mine are most pronounced when I lie down in bed. I asked my doctor and he indicated that it wasn't anything to worry about. It is very distracting but I don't think that it is life threatening or that there is anything that can be done about it. You might try lying in different positions, sometimes lying on my stomach relieves the feeling. If it bothers you, mention it to your doctor. Let me know how you are doing. jdeal@alltel.net


LaRae T's January 10 reply to Linda O's January 9, 2002 - Hi Linda, Thanks for your input. I thought for sure I was going to end up at the hospital last week I was so sick with symptoms like you describe. I know now to be cautious and not continue taking Aldactone if I get that sick again. Today is the first day I feel normal. I took an Aldactone yesterday morning and again this morning with breakfast. So far, so good. I am hoping it will be better because it seems to help me but I can only do so if the stomach symptoms stay away. LaRaePT@msn.com


Pam's January 10 reply to Bev T's January 9, 2002 - Hi Bev, I also have that throbbing sensation in my neck and I can also feel it in my head sometimes. I mainly feel it in the evening when I go to bed and also during the day when I am settled down. I have an irregular extra heart beat. I was told that when the extra heart beat comes in, that's what I am feeling. I get it often and have told my cardiologist over and over. He said it is not harmful, just annoying. That is my experience with it. I try to just live with it. Take care. mattnpam@juno.com


Shirley, January 10, 2002 - Hi, I have CHF. My EF has gone from 25% to 12% in 12 months. I have been on 25mg Coreg twice daily as part or my daily regimen. I have been asked to participate in a companion study by the Guidant Corporation for biventricular pacing or ICD. I'm very unfamiliar with these terms and devices, and would appreciate any comments from people who are experienced with these devices. I have looked for web sites relating to complications from these pacers and defibrillaters. Any comments would be greatly appreciated since I must make my decision on January 31 and would like to make an informed decision. Thanks. shirlandgirls@aol.com


Katherine H's January 10 reply to Shirley's January 10, 2002 - Hi, Is biventricular pacing the same thing as cardiac resynchronization therapy? If so, I posted a question about this on 1/4/02 and have not yet had a response. I know these devices were not available generally until August of 2001 and that physicians have to receive special training to implant them, but that's about all I know except for what is on Jon's site. I would be interested to hear more too. kholian@metropo.mccneb.edu


Lucy, January 11, 2002 - Hello everyone, I would like to know what lotions or creams you use to combat dry skin. My skin is normally dry but since starting CHF medications it's worse and drives me crazy with itching during the night. I'd appreciate any ideas you may have. Thanks, Lucy. Lgarretson@austin.rr.com


Rosemary, January 11, 2002 - Hi, I'm new to this site and have my first question. I experience severe upper back and arm pain, usually after performing tasks using my upper extremities. Anyone else? What can I do? Thank you. clara2rose@aol.com


Autumn's January 11 reply to Diana's January 8, 2002 - Hi, I have been taking 1000mg capsules of salmon oil capsules 3 times per day and it has greatly reduced my cholesterol. Both flaxseed oil capsules and fish oil capsules are rich in Omega 3 fatty acids, but flaxseed oils act as a weak estrogen on breast tissue. If you are taking estrogen or birth control pill, and flaxseed, you may get an excessive estrogen effect on breast tissues. With fish oil capsules you get the benefit of Omega 3s without the effect on breast tissue. It helps to take the capsules after you eat so you won't taste the fish oil. AmberDawn-Blzn@wevtv.net


Autumn, January 11, 2002 - Hi All, I have been on hydrazaline (a vasodilator) for 2 years now. I cannot take beta-blockers or ACE inhibitors because of allergies, and hydrazaline was my last line of treatment. A year ago when I developed peripheral neuropathy from spinal anesthesia and Lipitor, my PCP wanted to take me off hydrazaline because it also is a cause of peripheral neuropathy. My cardiologist insisted that I stay on it.
     My neuropathy has progressed to my arms also; it is causing weakness on my left side, bowel problems, problems with gait, and inability to tell temperature of bath water, etc. I now have to use a cane and have been told the disease will continue to progress unless all causes of it are eliminated. It may land me in a wheelchair or shut down my breathing (lung function).
     I saw my cardiologist yesterday. We discussed my recent echocardiogram and he told me I am not at all in CHF any more and my heart has reduced to well within normal size limits. I still have moderately leaking mitral and triscuspid valves. He wants me to stay on hydrazaline even though I have steadily progressing peripheral neuropathy. I understand that the hydrazaline lessens the stress on my heart and valves, and will delay or prevent surgery, and may prevent me going back into heart failure. However, if I stay on hydralazine it will destroy my quality of life and perhaps also shorten it. I have also developed arthritis from it.
     I was told 2 years ago that to deal with my heart failure I had to do regular aerobic exercise. I won't be able to do much exercise if my peripheral neuropathy continues to progress. I personally think my best chances to deal with both the heart and neuropathy issues would be for me to go off the hydrazaline and work at eating a really healthy diet low in sodium, fat, sugar, and high in fiber and nutrients, and regularly exercising. My physiatrist (a doctor specializing in nerves and muscles) says this is a "very bad disease" but my cardiologist seems to be blowing it off, and still wants me to stay on hydrazaline.
     I'm considering titrating myself off the hydrazaline until I can get a second opinion since my symptoms are getting worse each day. I am trying to weigh the pros and cons, benefits and risks, each way. Any input on these issues would be appreciated. AmberDawn-Blzn@webtv.net


Shirley's January 11 reply to Katherine H's January 10, 2002 - Hi, Thank you so much for taking the time to respond to my letter. I believe they both are the same. I have information from my heart failure clinic but wanted more information so I can make an informed decision. There is much on Yahoo under biventricular pacing, Guidant biventricular pacing, and Medtronic biventricular pacing. Many of the articles were over my head but I did find a couple that were easy to understand. I really want to hear from someone who has had the ICD, though. I hope you can find what you are looking for. If not, let me know and I'll give you the exact Urls. Thanks again and God bless, Shirley. Shirlandgirls@aol.com


Amelia's January 11 reply to Richard M's January 9, 2002 - Hi everyone, I hope this finds all of you doing well. Richard, I was put on amiodarone (Cordarone) in May and did very well. My starting dose was begun in the hospital at 1200mg daily. I was sent home on 400mg daily. Last month lots of side effects hit me. I would have had to stay on amiodarone probably the rest of my life since I was throwing clots due to my septal shunt and a-fib, so I guess any meds are based on each individual's problems. Even though everyone on this site has CHF, the damaging effect is different with each one of us. At least, that is what I think from reading all the posts. I hope it works for you. Best to all. amelias@erols.com


Dawn T's January 11 reply to Shirley's January 10, 2002 - Hi, I had an ICD put in on September 4, 2000, as part of the initial studies done in Canada at the Ottawa Heart Institute so my experience may be a little different. The doctor who implanted it had to be specially trained and instead of taking a short time to do the procedure, it took almost 3 hours. After implant, I had to stay on my back with very little movement for 48 hours. That's very tough when you can't breathe very well while lying down. My device never went off but was very close on several occasions. Unfortunately, it was never able to help me because my heart was damaged much more than they thought. I was put on the heart transplant list on October 14, 2000. I received my new heart on December 15, 2000 and can't remeber feeling this good. Thanks for such a great site, I wish I had found it a long time ago. gdbeckford@sympatico.ca


Dionne, January 11, 2002 - Hello, I am a 42 year old woman who thought she was in fairly good shape. However, lately - like this morning - I have been waking in the morning and in the middle of the night with severe chest pains, so much that I can't lie on my back and I have to move to my right side. Also, upon arising the chest pains linger on, like right now. There is no shortness of breath. babalina@gobot.com
 
Jon's note: You don't mention having CHF. I would suggest that you see a doctor immediately.


Russ B, January 11, 2002 - Hi Jon, I would like your brief thoughts on IV drug therapy. My doc has been trying to get me to start on Primacore 3 times a week. I'm not too sure I want to do it. I have been reading everything I can find on this subject, including your IV therapy page. My impression is that it's more or less for people in end-stage CHF. Am I wrong on that? Are the benefits of this type of therapy long-term or do you do it for a short time and then do it again after a period of time?
     I have ischemic cardiomyopathy, CHF, CAD, COPD and Type 2 diabetes, with an EF of 35, Vo2max of 12 and my lungs function at 30%. Considering everything, I feel decent and am still working full-time in a factory although I will probably apply for SSD some time this year because it is getting harder to go to work. If anyone has any experience with IV therapy, I would appreciate hearing from you. Thank you, Russ. rdbarker41@home.com


Scott B's January 11 reply to Bev T's January 9, 2002 - Hi Bev, If you are concerned about the throbbing in your neck, I would mention it to your cardiologist. Does the throbbing in your neck match your heart beat? I had a little twitch (muscle spasm?) on the right side of my neck for 2 days. It was not painful, but was very annoying. It actually pulsed at irregular intervals that definitely did not match my heart beat. You could actually see my neck move slightly and you could definitely feel it with your hand. I ate foods with a little more potassium and the problem has not returned to date.
     I considered myself in good shape before I was diagnosed with CHF. All of these little odd symptoms just started popping up when I started taking all these meds. However, as we all know, we can't take any chances. I hope it's nothing serious. Let us know what how it turns out. Thanks, Scott. kitchenerguy@hotmail.com


Richard M, January 11, 2002 - Hi, I have a problem with a cough that I get from prinivil. I heard that iron will help stop this. Has anyone tried this or have any other ideas on how to stop this? I can it handle during the day but at night I have a hard time falling asleep and it wakes me up during the night. Cough drops have not worked. God bless and thank you. malczew@ameritech.net


Bill D's January 12 reply to Richard M's January 11, 2002 - Hi Richard, The only cough drops that worked for me were "Maximum Strength SUCRETS Wintergreen." I tried all the rest, Bill D. billdog11@earthlink.net


Ernie's January 12 reply to Bev T's January 9, 2002 - Hi Bev, I got your reply. I hope all is well. I have many end-stage symptoms as I had mentioned earlier. I was diagnosed with cardiomyopathy in 1979. At that time I was already in chronic atrial fibrillation. They did a heart biopsy and found what they said were bizarre heart cells, for the atrial fib. They tried to cardiovert my heart into sinus ryhthm 4 times with no luck. I would go back into atrial fib. My heart has continued to enlarge. My last echocardiogram in January of 2001 showed my heart size at 88mm with 2 valves leaking severely - mitral and tricuspid.
     I have angina, dizziness, swelling in my ankles, upset stomach, and kidney pain due to blood clot. I went off my warfarin and clotted in my kidney plus one in my lung. I sleep very irregularly, mostly in the day. I have to sleep on my back propped up on pillows because any other position drives me crazy. It is like my heart is playing Dixie in my chest. My carotid artery in my neck is the same. What I do that seems to help is wrap a heating pad around my neck at the lowest setting and I now take ativan to control anxiety. My cardiologist gave me a prognosis of 20 months but he has been wrong twice before. I am supposed to go in for another echo. Last year my EF was 20% but I feel too tired. My immune system is weak and I have got a cold so I am really tired today. Keep in touch and all the best, Ernie. rainy_day48@hotmail.com


Peggy, January 12, 2002 - Hi, I have been reading some posts here lately on high cholesterol and flaxseed oil and fish oil. Does anyone have any information that will help a high triglyceride count? My husband had a high count and they want him to start walking every day for 6 weeks to see if that will help. Otherwise he will go on medication. We would like to not do that. Thanks. RyoungAngora4683@aol.com


Hope M's January 14 reply to Lucy's January 11, 2002 - Hi Lucy, I think some of my dry skin is related to taking diuretics. The best lotion I have found is Vaseline Intensive Care dry skin lotion. Also, at times when I get really itchy skin, my doctor suggested that I rub mineral oil over my skin after a shower and before I dry off, then just pat dry. This works very well for me, Hope. hmcneil49@yahoo.com


Richard M, January 14, 2002 - Hi, Last week I had my heart put back into sinus ryhthm. I also have a pacemaker for slow heart beat, Just before I got shocked, my doctor set my pacemaker at 40 beats per minute and he left it at that and said to come back in 2 weeks. Is this a normal procedure? This has not been a fun couple of days. Anyone who has had this procedure done, I would like to hear from you. Thank you. malczew@ameritech.net


John W, January 14, 2002 - Hello, I was diagnosed with CHF/DCM back in April of 2001 at which point my EF was 24%. As of August, my EF was 45% and hopefully it'll be better on my next echocardiogram. However, I'd like to make a few comments on some of the posts that I've read on this site.
     To Peggy on January 12, triglycerides do improve with exercise, that's all that I know. Elevated lipids could be indicative of something else. My doctors figured that my DCM probably started with some viral inflammation of the heart and judging from the amount of scar damage, it was probably 5 to 7 years ago, which corresponds to when I went to the rain forests of Venezuela to visit a job site. There are mosquito borne viruses in the rain forests known to cause such inflammation. Anyway, after that trip I did have elevated lipids and liver enzymes, and my triglycerides were extremely high. At the time we did not know why but now it would seem to have been indicative of the viral inflammation in progress.
     To Richard M on January 11, ACE inhibitors tend to cause coughing as a side effect. I have not heard of anything that would mitigate that. However ARBs like Cozaar have similar but more specific actions as ACE inhibitors. ACE inhibitors were prescribed because studies showed them to be effective for CHF but there were no such clear results for ARBs. However, there has been a recent study known as the ValHeft trial comparing use of ACE inhibitors and ARBs. I myself am on both an ACE inhibitor and an ARB, Accupril and Cozaar, so that my ACE inhibitor dose could be lower so as not to cause me to cough. Now I hear that both ACE inhibitors and ARBs work to about the same extent but using both may be counterproductive. I've discussed this with my cardiologist but he thinks I should still use both since I've been responding well to my meds. I don't think adding iron supplements will help but you may want to ask your cardiologist if you can switch to an ARB or at least sneak down the ACE inhibitor dosage till you don't cough and make up the difference with an ARB. Jon's note: The Val-Heft trial was completed and reported in 1997
     To Russ B on January 11, ischemic cardiomyopathy means that your heart is weak because parts of it were deprived of oxygen (blood). It probably means you had small heart attacks. It's bad because there's fewer healthy cells left to recover with and more non-functional scar tissue. Aldactone (spironolactone) has been shown to have some anti-fibrosis effect, meaning it scrubs up a bit of the scar tissue. There is a lot of research into encouraging heart muscle regeneration. Stay with the program, although your EF seems pretty good for us CHFers, you probably won't get the improvement that others get on their EF simply because the ischemic damage to your heart is harder to repair than that of other causes of cardiomyopathies. You may want to ask for an IV port so that they don't have to keep poking you to find a vein. It usually takes them 5 painful tries on me.
     To Rob C on January 7, Aldactone is a potassium sparing diurectic and will cause your potassium levels to rise. If you are taking Aldactone you may not need a potassium supplement. Have your levels checked. Check with your cardiologist about being on both Aldactone and potassium supplements, even if you are on Lasix. Also ask about Demadex.
     As to the posts saying they've had a 20 month prognosis, I'd say get another opinion. True, the textbooks say that 50% of CHF patients die within two years and 70% die within five years but the various drug synergy trials have shown a lot of promise in recent years (at least that's what my own readings have shown). Although Medical stats don't really stand up to mathematical analysis, I would estimate that the drug program that I'm on potentially reduces my five year mortality rate from 70% to 17% based on the various trial results that I've found. A good Doctor would hasten to state how the prognosis can really not be relied upon and would hesitate to stand behind a 20 month prognosis. I'm comfortable with my Cardiologist because he doesn't want to give out a prognosis although when he first saw me, he didn't think I would make it through the weekend, he wanted me in the hospital for liability reasons over that weekend and I just wanted to go home. jwang@houston.rr.com
 
Jon's note: See this post for information about that 5-year statistic


Jean C's January 14 reply to Lucy's January 11, 2002 - Hi, Dry itchy skin is not lethal but it sure is irritating. I use a body wash/gel when I shower. It's a little more expensive than soap but worth it. Suave is the most reasonable one I've found. Take care, Jean. ojean@oz.sunflower.org


Sheryl C's January 14 reply to Richard M's January 11, 2002 - Hi Richard, Talk to your doctor about changing your medication. Mine changed me to Diovan, which is an ARB and got rid of that annoying cough. cvprehab@hotmail.com


Mary, January 15, 2002 - Hi, When I sit down I get a full feeling in my upper chest, throat and upper back. This also happens when I use my hands and arms and then my arms go numb. If I don't stand up right away, the pressure feels like I'm strangling. I am wondering if it could be arteries in my arms being compressed. Any ideas would be greatly appreciated. mipe2@aol.com


Bernard, January 15, 2002 - Hi, Last week I had my atrial flutter restored to sinus ryhthm in a procedure that involved force injecting a drug into a vein. It did not require stopping the heart. I cannot remember the name of the drug. Everything was in readiness in the next room to do the electric shock if the drug did not work. Does anybody know more about this procedure? I am most pleased with the result, Bernard in Louisiana. bernardz@cox-internet.com


Joseph P's January 15 reply to Richard M's January 14, 2002 - Hi Richard, You lost me saying they put your heart back into rhythm. I have an ICD and my heart rate is set at 80 bpm. The other pacemaker was not an ICD and it was set at 60 bpm - it helped the slow rate but I did not have much energy. I feel a whole lot better now at this new rate. Also, I still have a-fib and my doctor is going to do an ablation to try and correct the pathways in my heart. What kind of shock did you receive? God bless, Joseph P. joeandol@yahoo.com


Ben B's January 15 reply to John W's January 14, 2002 - Hi, Survival statistics for this disease are my pet peeve and I get so upset about the ridiculous 5-year statistic that I sometimes end up getting rude and getting edited <g>, which I appreciate because I don't mean to be rude to intelligent people who are investigating their condition.
     I thought your last letter was great and informative except I'm wondering what studies you use to come up with a 17% survival figure. I am wondering if you are doing what I used to do: go through various medication efficacy studies and read just the mortality rates and try to infer from this an overall mortality rate for the disease. After a couple years of doing this I came to the conclusion that this isn't proper or accurate because the tests are only set up to determine the benefits of certain medicines. They are not set up to determine how long people will live, only whether they will live longer with one medicine or without it. Therefore, they do not set up the proper experimental parameters - controls, population selection, methodology, analytical methods - to really do an overall survival study. Just the fact that people are in a clinical trial to begin with makes it a somewhat skewed population. I guess that's why you say, correctly, that medical statistics are not really hard science, able to stand rigorous scrutiny. Of course that doesn't stop the powers that be from putting them out as the absolute truth.
     The only study I know of for mortality was SOLVD and it is really old. Anyway, I really believe that we are all best off not trying to pinpoint this life span thing. The only thing I know is that it usually is longer than we think, and the 5-years statistic should be obliterated. bdbrinkman@juno.com


Pam, January 15, 2002 - Hi, I posted a while ago about the supplements taurine and carnitine. I asked someone at a health food store about them, and they said these should be taken together. Does that sound right? I purchased some taurine in a 1000mg dose once a day and carnitine in a 500mg dose once a day. Does that sound right? Should I let my doctor know I am taking them or is it something I can just do on my own? Do these types of supplements have side effects or react with any meds such as Coreg, Lisinopril, or digoxin? I would appreciate any info on it.
     Also, I don't drink much milk so I have been drinking Slimfast in the morning for breakfast. The sodium intake is 220mg for the can. It sure does give me a boost. I read the ingredients and there doesn't seem to be anything harmful in it. mattnpam@juno.com


Jon's January 15 reply to Pam's January 15, 2002 - Hi Pam, I am not a doctor but I would personally recommend taking 1000mg taurine 3 times a day for best results with CHF. I don't have as much experience with carnitine because it is so expensive in my area that I could never really see what dose worked best for me. I would guess from reading studies that 1000mg carnitine twice a day would be a good goal. As far as I know, you don't have to take these together, although each has shown benefit in studies for CHF.
     I would tell your doctor that you are taking them. It's your body and you can take whatever you want, but you pay him to monitor your health and he can't do that properly unless you keep him informed.
     I am not aware of any side effects when taken at the doses mentioned, but I cannot be sure. Jon.


Steve M's January 15 reply to Shirley's January 10, 2002 - Hello Shirley, I am a participant in the Guidant bi-ventricular pacemaker study, called the Contak CD study. I've had a Guidant device since February of 1998. My condition remained fairly stable with an EF in the mid 30s until the summer of 2001, when it dropped to 28%. I noticed a significant drop in my energy level.
     My doctor in Oakland, California thought I would be a good candidate for this study since my heart class had dropped from class 2 to class 3. He said that some people show a dramatic improvement within 6 months. The new left ventricle lead was put in on October 18, 2001. I feel back to where I was before. My EF is back to the mid 30s. I've noticed a lot fewer irregular heartbeats. I'm not back to normal, but there has been improvement in 3 months. Feel free to e-mail me if you have any other questions, Steve M. steve_martin50@hotmail.com


Richard M's January 15 reply to Bill D's January 12, 2002 - Hi, What a pleasure to get a full night's sleep with out getting up 5 or 6 times a night. Thank you Bill, for that imformation. If that didn't work I was going to switch meds. I am glad I did not have to, seeing how well my meds where working. Thanks everyone, for the information. malczew@ameritech.net


Jon, January 15, 2002 - Hi everyone, I am attempting to contact everyone with a bio at Who's Who and the following people have e-mail addresses listed there that bounce. If your name is on this list, please contact me with an updated e-mail address for your bio. Thank you.

  1. David King
  2. Doug Knuth
  3. Duane Clink
  4. Jill Schroeder
  5. Lance
  6. Phyllis Alexander
  7. Virginia Pauline

Jon.


Richard M's January 15 reply to Joseph P's January 15, 2002 - Hi Joseph, I had an electric shock called cardioversion. After that, my pacemaker was set at 40 beats per minute so that my heart would get used to the change. It then will be set at the normal rate of 60 beats per minute. It is my understanding that they would try shocking the heart first and then do ablation. I would check into this. God bless, Richard. malczew@ameritech.net


Donna's January 15 reply to Shirley's January 10, 2002 - Hi Shirley, Here is a web site with some information about biventricular pacing: http://www.cardiologytoday.com/199912/frameset.asp?article=gedcurtis.asp. My husband is going into Shands Hospital in Gainesville, Florida on the 29th to have his ablation and a pacemaker. We will be having a consultation on the 28th of January and they want to talk to him about biventricular pacing. His doctor who referred him there said he is a good canditate. I have been reading everything I can find on the Internet and the above link just happened to be written by the doctor who is going to do his procedure! Good luck with your decision and if you find anything we should know about before the 28th, let us know. We will do the same. gramme@cfl.rr.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 Jon C.

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