The paperwork never ends The Archives
June 16-31, 2001 Archive Index CHFpatients.com

Tracey C 6-16     thanks for your input
 
Ruthie A 6-16     does anyone take Tiazac?
 
Robin L 6-16     CoQ10 & to Joy, Brandy & Sherrell
 
John Len's 6-16 reply to Jim L's 6-15     Rx drug prices
 
Autumn's 6-18 reply to Jon's 6-11     of docs and drugs
 
Autumn's 6-18 reply to Amelia's 6-15     driving privileges
 
Ginger's 6-18 reply to Joy's 6-15     and Father's Day, Zestril & an update
 
Dave K 6-18     sitting, lying down, and passing out
 
Jon 6-20     update
 
Jack D's 6-21 reply to Robin L's 6-16     CoQ10
 
Sid K 6-21     an optimistic update
 
Autumn 6-21     does anyone else have back pain or surgeries?
 
Luc D 6-21     a thank you to my friends
 
Tonya D 6-21     update & echocardiogram question
 
Jon's 6-21 reply to Tonya D's 6-21     echocardiogram results
 
Rieale 6-21     am bruising on legs really bad
 
Mike W 6-21     a positive update
 
Ginger 6-21     questions about asthma
 
Amelia 6-21     update - new doctor & more
 
Kathleen 6-21     new CHFer & have some questions
 
Stephanie 6-21     seek advice about SSD psych exam
 
Jana B 6-21     Kaiser coverage questions, to Luc, weight loss & more
 
Ben B's 6-21 reply to Sherrel G's 6-15     Mike J, keeping on keeping on
 
Brandy 6-21     beta-blocker & arrhythmia questions
 
Joanne E 6-21     questions about exercise
 
Jon's 6-21 reply to Joanne E's 6-21     I hope others respond
 
Dorothy 6-21     atrial tachycardia tips
 
Mike W 6-21     update on blood work, question to Jon
 
Jim L's 6-21 reply to Kathleen's 6-21     Coreg dose
 
Ruthie A's 6-21 reply to Autumn's 6-21     back surgery with CHF
 
Patrick 6-22     for those on Disability
 
Ruthie A's 6-22 reply to Ginger's 6-21     CHFers suddenly getting "asthma"
 
Fred D's 6-22 reply to Joanne E's 6-21     CHF and exercise ability
 
Ruthie A's 6-22 reply to Joanne E's 6-21     CHF and exercise ability
 
Sharon P's 6-22 reply to Joanne E's 6-21     CHF and exercise ability
 
Sammy L's 6-22 reply to Joanne E's 6-21     CHF and exercise ability
 
Mary A's 6-22 reply to Joanne E's 6-21     CHF and exercise ability
 
Maxine S' 6-22 reply to Kathleen's 6-21     Contak CD implanted device
 
Autumn's 6-22 reply to Mike W's 6-21     attitude
 
Duane L 6-22     questions - symptoms and fluid intake
 
Tracey C's 6-23 reply to Brandy's 6-21     high heart rate, low BP experience
 
Ginger's 6-25 reply to Ginger's 6-22     asthma, quality of life & more
 
Henry's 6-25 reply to Autumn's 6-22     seeking CHF doc in Florida
 
Debbie 6-25     intro - thanks for all the info
 
Sammy L's 6-25 reply to Patrick's 6-22     update & more
 
Joe S 6-25     new e-mail address, exercise
 
John Len's 6-25 reply to Patrick's 6-22     disabled renting homes in groups
 
Michael's 6-25 reply to Joanne E's 6-21     exercise and CHF
 
Eris 6-25     hospital stay, update
 
David A 6-25     does anyone know about the HeartBar?
 
Jan 6-25     drug dose equivalents warning
 
Natasha H 6-25     sleep apnea
 
Jack D's 6-26 reply to David A's 6-25     the HeartBar
 
Jeanette 6-26     seek ICD experiences
 
Jan P 6-26     has anyone switched from Coreg to Toprol?
 
Jon 6-28     behind again, pacer trials
 
Mike W's 6-28 reply to Jan P's 6-26     different beta-blockers
 
Jon's 6-28 reply to Mike W's 6-28     different beta-blockers
 
Gwen S' 6-28 reply to Jan P's 6-26     taking multiple beta-blockers
 
Jim L's 6-28 reply to Jan P's 6-26     different beta-blockers
 
Joanne E 6-28     thank you for exercise answers
 
David A's 6-28 reply to Jeanette's 6-26     ICD implant experience
 
David A's 6-28 reply to Jack D's 6-26     the Heartbar
 
William B 6-28     Coreg dose
 
Jon's 6-28 reply to William B's 6-28     Coreg
 
Mike W's 6-29 reply to Jon's 6-28     beta-blockers
 
Jon's 6-29 reply to Mike W's 6-29     beta-blockers
 
Virginia P 6-29     EF versus how we feel, Url & more
 
Ernest D 6-29     which test is right?
 
Mae 6-29     anyone else have "good" numbers but feel bad?
 
Ginger's 6-29 reply to Jon's 6-28     how we feel versus the numbers
 
Ben B 6-30     EF
 
Jon's 6-30 reply to Ben B's 6-30     EF
 
Jon 6-30     site, updates
 
Linda O's 6-30 reply to Ernest D's 6-29     EF measurement, update
 
Lydia Moore 6-30     sek SSI experiences
 
Bill D's 6-30 reply to Jon's 6-28     Coreg dose versus benefits
 
Jon's 6-30 reply to Bill D's 6-30     Coreg dose versus benefits
 
Jeanette W's 6-30 reply to David A's 6-28     implant
 
Linda Z 6-30     importance of EF
 
Vee 6-30     Coreg view
 
William B's 6-30 reply to Jon's 6-28     books, doctors, drugs & more
 
Jon's 6-30 reply to William B's 6-30     doctors, drugs, ratings
 
Karen K 6-30     do I need these tests?
 
Jon's 6-30 reply to Karen K's 6-30     one opinion
 
Sammy L 6-30     walked in AHA event today & more


Tracey C, June 16, 2001 - Hi Jon and everyone, I just wanted to thank those who posted and e-mailed me regarding pregnancy and cardiomyopathy. It made it pretty clear to me. My husband has been against it since I was diagnosed but I was looking for anything that might give us hope. It really isn't worth the risk and there are so many children who need homes. Thank you Sammy for your input, it really helped. Take care everyone, Tracey. 2tcollins@home.com


Ruthie A, June 16, 2001 - Hi to all, Does anyone take Tiazac, a calcium channel blocker? Please e-mail me with your experience. I was just put on it yesterday and am having several side effects but nothing super-serious at this point. I used to take Norpace but it gave me severe headaches.
     My doc put me on an ACE inhibitor. After 2 months I developed the usual severe dry cough and I was switched to an ARB - Valsartan. Then my BP went up and down like a yo-yo and my CHF doc changed me to Cozaar (losartan). I have taken Cozaar for over a year but yesterday I woke up with a swollen tongue and my uvula (the hangy-downy thing in the back of your throat) was so swollen that it dragged back and forth on my tongue every time I tried to swallow, which was very difficult to do. My airway was down to 50% and was slowly closing. I made an emergency trip to my PCP, who diagnosed angioedema, which is a common culprit with Cozaar.
     She changed me to the Tiazac after giving me prednisone and benadryl to treat the reaction. I need to go back in a week to check my blood pressure. I just hope I can tolerate this new drug and that my BP will stabilize. I am pretty discouraged. By the way, my throat is slowly getting back to normal so I am not scared any more but it still is hard to eat. I have to chew all my food very carefully to make sure it is small enough to get through. At least I am still alive and for that I am thankful, Ruthie A. rlaba51@yahoo.com


Robin L, June 16, 2001 - Hi everyone, Okay, I've got to get in on this about CoQ10. When I first took it I started at 30mg a day. At that dose, from the very first day, I was having a lot of arrhythmic activity (tachycardia). I stopped taking CoQ10 after 3 days, then started it again a few months later with the same result. My conclusion was that this suppliment does what it is supposed to do - supply more blood to your heart. When your heart gets a little more going through it than it is used to, coupled with being prone to arrhythmia, the heart may not be able handle the load. Does that make sense? That's what I thought about it anyway.
     To Joy, I am so happy to hear that your personal problem has gone away but am sorry that you are still in there. I will keep you in my prayers that you will be home soon.
     Brandy, I had the same thing happen but my doc called it being orthostatic. Are you getting more exercise or more daily activity now than when you were first put on meds? What happened, I think, in my case was that when I went to work about 6 months after being put on my meds I was getting more daily activity, which brought my BP down. With being on the ACE inhibitor it came down too low. Just a thought about your situation. Good luck.
     Thank you Sherrell for letting us know about Mike. Prayers to his family. Blessings to all, Robin Lynn. heartful99@hotmail.com
 
Jon's note: Orthostatic hypotension means low BP whenever you are standing, not just when you perform the act of standing up. Postural hyptension goes away after a brief time once you are standing up, while orthostatic hypotension may stay with you as long as you remain standing.


John Len's June 16 reply to Jim L's June 15, 2001 - Hi, I agree with you and also remind everyone that some drug companies will give you drugs free if you qualify. Income and net worth limits are criteria. I get my insulin and Zocor under such a program. The program goes through your doctor, who must fill out the forms. John. a_lenny6@hotmail.com


Autumn's June 18 reply to Jon's June 11, 2001 - Hi Jon, I'm sorry it has taken me this long to get back to you. I've been to the city a lot lately and have been exhausted from the trips. I wish the information I gave in my posts was in error but as I mentioned, I tape-recorded my visit with my doctor so I wouldn't be relying on my own recall which I knew had been poor since the little stroke I had. Before I posted I listened to the recording so I'd be sure.
     Out here in the wide open spaces we often do not have access to more advanced doctors. To get a CHF specialist I would have to go 500 to 600 miles, to the next state. I have already tried to get BC/BS to give approval to go outside our plan but they will not approve it. I can go out of plan on my own accord but will then be required to pay 40% of the medical bills, plus the travel, of course. On disability income it is simply impossible for me to do so. I couldn't even get a second mortgage on my house my income is so low.
     At my next visit with my cardiologist I am going to ask if he'll switch me to amlodipine and will ask him also about the isosorbide. I am already on hydrazaline and have had good luck with it. For now the Calan is controlling my SVT quite well and doing moderately well with my BP. I had forgottton how much it drags me out though. I guess most all the drugs do that. Thanks for your information and support. I sure wish I had your memory. Autumn. AmberDawn-Blzn@webtv.net
 
Jon's note: I have no memory - what I have is a huge collection of text files conveniently titled. ;-)


Autumn's June 18 reply to Amelia's June 15, 2001 - Hi Amelia, I certainly understand your apprehension about the EPS. I know for me personally I need a little time if possible, for such things to soak in and then I can handle it. If it could give you good control with fewer drugs I'd certainly consider it.
     I did not lose my driving privileges but when my cardiologist told me that if I did not agree to go back on Calan to control my SVT, I needed to quit driving, I really felt that if I did not go on it he would have my driving privileges suspended. I cannot imagine not driving, especially since I have few people that could drive me around so I'd be pretty house-bound. I'm glad you are getting some driving privileges back. I hope you're soon fully on the road again. AmberDawn-Blzn@webtv.net


Ginger's June 18 reply to Joy's June 15, 2001 - Hey Joy, I'm glad you got it all straightened out. You didn't need the added stress. How are your arms doing with all the IVs? Of course you forgave them. You forgive everybody for everything. You're a special person as I have told you many times before. Not many people can be as sick as you are and not complain and still worry about others like you do. I hope you get your new Hickman soon and get out of there.
     I am not on much right now. This cold really got me and it comes with a horrible headache that the monitor light doesn't help. They gave me Fiorinal for the headache but I am not taking it. I mean how many drugs can one person take? It will be a task to get through a dinner for Father's Day with about 10 people but it will work out. Somehow it always does.
     Happy Father's Day to all you dads out there. As for generic Zestril, there is one but not many drug stores I have found here carry it. That's just my experiance with trying to find it. Stay well, ya'll. Hugs and prayers, Ginger. angelgin@bellsouth.net


Dave K, June 18, 2001 - Hi Gentlemen, I have been following some of the posts regarding postural hypotension. I have a curious problem. I began to pass out after rising a couple of years ago. This started when I was diagnosed with CHF. Now, occasionally I will sit down and pass out from sitting, or I will pass out after lying down. That is strange to me. I have not passed out from a sitting position but then again I have not tried to bend over from a sitting position much either. Any comment appreciated, good ole Dave. dkreifeldt@yahoo.com


Jon, June 20, 2001 - Hi everyone, I am having some health and meds problems. I will eventually get all the posts up but will be very slow for awhile. I probably will also forego answering any e-mails that don't absolutely require an answer. Jon.

Jack's June 21 reply to Robin L's June 16, 2001 - Hi Robin, CoQ10does not supply blood to your heart. This will tell you more about it:
     Coenzyme Q10 is a natural, fat soluble nutrient produced by the body from phenylalanine. Another name for CoQ10 is ubiquinone. It is often thought of as an anti-aging supplement because it is one of the most potent antioxidants, able to neutralize free radicals (oxygen ions) within the body, thereby preventing or limiting lipid-peroxidation, a process which contributes to many of the diseases associated with aging.
     CoQ10's most important function, however, is to provide nutritional support for energy metabolism within the mitochondria of the body's cells. The mitochondria are the portions of the cells in which oxygen is burned to produce the energy necessary for all bodily functions. Here CoQ10 performs the dual role of catalyzing the energy producing process and protecting the mitochondria from free radical damage.
     Heart muscle cells, which need large amounts of uninterrupted energy, have a higher concentration of CoQ10 than any other cells in the body. A small amount of the CoQ10 we need can be obtained through dietary sources, such as eggs, beef and certain vegetables. Ninety percent, or more, however must be manufactured by the body itself. As we age our bodies produce steadily lower amounts. Some prescription medicines and many diseases can further deplete the body's stores of CoQ10. For all these reasons, there is a potential portion of the population that may benefit from CoQ10 supplementation.
     The use of CoQ10 should not give you arrhythmic activity because a deficiency of CoQ10 is a cause of heart disease. Your occurance of arrythmia was coincidental even if your doctor might have said it was from CoQ10. Most doctors know nothing about CoQ10. This web page may help things more clearly for you: http://biochemgen.ucsd.edu/mmdc/ep-toc.htm. This one explains the role of CoQ10: www.mdausa.org/publications/Quest/q64mito.html. Jack. maddjak@hotmail.com


Sid K, June 21, 2001 - Dear Fellow CHFers, I share some encouraging news with you this evening. After filling up with fluid last December 28th I was diagnosed as a victim of CHF and idiopathic cardiomyopathy. I went from my PCP to a highly respected cardiology office. My PCP had ordered a nuclear stress test. I lasted 1 1/2 minutes on the treadmill and my EF was 22%. The specialist requested an echocardiogram and my EF was shown to be just 15%. I didn't feel that the specialist (who did put me on 6.5mg Coreg daily) was CHF-knowledgeable so I called the Cleveland Clinic and lucked out with an almost instant appointment. Dr. Isserman confirmed the CHF diagnosis but put me on target doses of Altace and Coreg, along with Bumex and digoxin (Lanoxin). Blood tests were frequently scheduled and examinations were conducted almost weekly.
     To make a rather lengthy saga brief, I just had a new echo done at the Cleveland Clinic and it indicated an EF of 55% and most other heart functions were normal or very close to normal. Dr. Isserman wants me to remain on the current meds program until he sees me next month. My energy has returned and I feel very similar to the way I felt before CHF took me down. I rapidly walked a long flight of stairs at the clinic and was hardly out of breath. I couldn't have done that just 5 months ago! I feel as though my life has been given back to me.
     My message is that being diagnosed with CHF need not be the beginning of the end. We must all hang on to hope and yes, we must follow Dr. Silver's admonition regarding liquids and a salt-reduced diet, and all the rest of his excellent, expert advice. I will not change my diet, I will continue to abstain from caffeine, alcohol and a large intake of fluids in general. Eternal vigilance is the price we must pay to remain viable.
     My thoughts, prayers and good wishes go out to all of you. We have an exceptional and wonderful support group here. Thanks to Jon for putting up with me throughout this very terrifying ordeal, Sid. SKleiner@aol.com


Autumn, June 21, 2001 - Hi everyone, Today I got some great news along with some bad news. My recent bone scan shows that I do not have bone cancer but my doctor is going to do an MRI to be positive. What a relief!
     The bad news is that I blew a disk that was first injured 30 years ago, and have had chronic problems with for 17 years. It popped 3 days ago and now is starting to be bone on bone. The orthopedic doctor says it will get more bone on bone and the pain will get bad over time. He says I need a fusion but doesn' recommend I get it because of the risk of death. That risk applies to anyone but he suggests that with my heart I should avoid any surgeries if at all possible. He set me up with a back specialist for the end of July and I am hoping that there will be options to block the pain as it gets worse. I can't comprehend dealing with my heart as it gets worse and severe back pain also. When I was in my episode of CHF in 1999 and 2000 I could hardly deal with the back pain from having to sleep partially sitting up and that was when I still had my disk. Perhaps it won't get as bad as he thinks because he expected me to be in worse pain now than I am.
     Are there others here who have disk problems? If so, were you able to have surgery or were you able to deal with the pain effectively without surgery? I will also go to a forum for disk problems but I really need to get some input on how heart failure patients deal with these back problems or how heart failure patients deal with surgery in general. Thanks in advance for your help. It'll be much appreciated, Autumn. AmberDawn-Blzn@webtv.net


Luc D, June 21, 2001 - Dear friends, Ruthie, Fred, and all the other people who know me, I just wanna thank you all for replying to my note. I was never far away from the Jon's heart forum. I did look at the posted messages every day but I didn't write much. Most of the people that I know since 1997 have died or are off the Internet now. There are lots of new people here who don't want to talk to a Belgian like me. Why, I don't know.
     I still take 25mg Cozaar in the morning and 25mg in the evening, that is better. The problem I had with Cozaar was fainting and a very slow heart rate of about 40. I have to go for now, my friends. Take care. All the best from Luc here in Belgium. luc.deseins@planetinternet.be


Tonya D, June 21, 2001 - Hi, I have some good news! Yesterday at my echo, my cardiologist told me that my EF is up from 45% last year to 50% this year. He said the size has continued to go down. Most importantly, I feel great.
     I have one quick question though. The doctor told me my EF was 50% but when I looked at the computer screen when the echo was in progress, it said my EF was 56%. Why the difference? Thanks for all your help, Tonya. rntdean@jcn.net


Jon's June 1 reply to Tonya D's June 21, 2001 - Hi Tonya, This is why only an experienced CHF specialist should read your echo and give you "final" results. Interpretation is everything in reading the actual echo report. At my last echo, the tech read my EF as over 55% and I told him he was nuts. My CHF doctor read the echo and informed me that my EF was 40%, maybe a hair higher, maybe not. See the bottom section of the echo page for more. Jon.


Rieale, June 21, 2001 - Hi there, I haven't posted in awhile. I'm 23 years old and have an ICD. My EF is 45%, up from 15% eight months ago. Anyway, my problem is that I recently started experiencing a lot of bruising on both my upper and lower legs. Seriously, it looks like someone beats me but nobody does. I was wondering if anyone else has experienced this. I'm on Lasix, Lanoxin, K-dur, Coreg, Accupril, spiroalactone, a multi-vitamin, one aspirin a day and a calcium supplement. Any ideas? Rieale@aol.com
 
Jon's note: See a cardiologist immediately


Mike W, June 21, 2001 - Hi Everyone, I had only my second echo since being diagnosed in November of 1997 when I had an EF of 25% to 30% and was quite sick, carrying 45 pounds of extra fluid, couldn't walk 100 feet, the whole trip. Since then I've been taking pretty good care of myself with regular exercise and meds. I suspected my EF would be better but had no inkling that the echo would come back as "normal, healthy heart function with an EF of 58%"
     Now I actually would not be posting this "news" to this board thinking that it might make some feel bad. The only reason I'm posting is:

  1. Usually we hear here about such improvements in younger folk. I'm 54.
  2. I have not led an exemplary life in terms of caring for myself. I have been overweight all my life, had uncontrolled high BP since my mid-20s, never exercised, and smoked for 35 years with 20+ years of 3 to 4 packs per day.
  3. I'm not particulary upbeat or positive. Actually, I've been a grim, anxious, depressed person my whole life.

What I'm leading up to here is not to talk about any accomplishment (except the desire to live <g>) but to speak to the amazing recuperative power inherent in these amazing bodies we inhabit. Call it genes, luck, or whatever. For the first time since I was diagnosed, I'm thinking I may actually die of something other than heart failure. For me - I'm sure like some others here - I felt my fate was sealed. Well now I'm thinking maybe not.
     I feel now like I can maybe see my 4 year old grandson reach puberty. It feels like an incredible gift. I have no illusions about being healthy or cured or going off all my meds but the idea that I'm not doomed by my CHF; well, it's just incredible! I won't be leaving the board. I'll be here every day, lurking as usual, and commenting occasionally. Peace and hope to all, from for at least today, a not grumpy old man! ;-) Mike W. mikeyw@sohogurus.net


Ginger, June 21, 2001 - Hi, I have a strange question for all of you. Has anyone here not had asthma before getting DCM and then later been told you do have it? I am just curious because this is what is going on with me. I never had asthma in my life but now all of a sudden they are telling me I have it. I just find it kind of strange but before I do or say anything stupid, I wanted to see if this has gone on with anyone else. Thanks. Hugs and prayers, Ginger. angelgin@bellsouth.net


Amelia, June 21, 2001 - Hi everyone, I've been trying to keep up with all your posts so I can make decisions and know what to expect from my CHF. First of all Jon, I took your advice and asked him if he would add one med at a time and he said yes. I will see him on the 3rd and at that time I will write down the meds he is planning to add. So far amiodarone (Cordarone), Vasotec, and Lasix are doing their job. My INR finally went up to 2.3 but they want it to be no less then 2.5 and will still have my INR and PT monitored every 6 days.
     I hit paydirt mon, as I took your advice and "interviewed" a new internist. He is great! He is young but presented himself with professional mannor and was so very informative that I overlooked his age. The most impressive thing about him was that he filled out my health report while asking me questions regarding my health. Usually the first thing they want is for you to fill out a med report when seeing a new doc and then most don't read it. I feel that with the verbal discussion, he has a very good picture of me, myself and I. He will work very closely with my CHF doc and when Iam discharged from my CHF doc, my internist will see me every 3 months. He explained the same things to me that my CHF told me regarding heart failure and was very understanding how I felt regarding more meds and again said it was what I needed for them to try and prolong my life. It all sounded good to me and I left very comfortable knowing I was in good hands with him. Prayers to all. amelias@erols.com


Kathleen, June 21, 2001 - Hi everyone, I'm very new to this message board. I've been following it for a couple of weeks but this is my first post. I'm a little curious about a few things. I am a 32 year old mother of 4 children (5 year old twins, and a 3 and an 8 year old). I was diagnosed in late February with cardiomyopathy. I had flu-like symotoms and went to the doctor so I could go home and have the flu in peace. To my surprise he found an irregular heartbeat that was diagnosed as atrial fibrillation. When I went to see a cardiologist, my EF was 25%.
     I went into the hospital for a few days. They shocked my heart and the a-fib is now a sinus rhythm. I also had a cath and no blockages were found. He diagnosed me with cardiomyopathy with left ventricular dysfunction. They put me on digoxin, 3.125mg Coreg, and aspirin, and sent me home. A month later my EF went up to 35%. In the beginning of June I had another echo and my EF has stayed at 35%.
     How long do these medications take to work? With an EF of 35% I have good and bad days but it's hard to blame them on my heart because I am running around after 4 kids all day. My doctor says to limit nothing and do what I feel comfortable with as far as activities. He answers any question I pose to him but he rarely volunteers too much info. Does he do this so as not to let me think I have symptoms I really don't have? He is a very well regarded doctor in the field and holds a top position at one of the best hospitals. I basically don't know what questions I need to ask him when I see him next. It seems to me that I am on a very low dose of Coreg compared to a lot of you. Is this a trial period?
     When is cardiomyopathy considered CHF? Do all the symptoms have to be present? What are the big ones to look for in myself? Any help would be greatly appreciated because I don't know anywhere else to get this info in a manner that I can understand.Thanks! KMcTim@aol.com


Stephanie, June 21, 2001 - Hi, I have a question and hope someone can help. I am still dealing with Social Security Disability. I got a letter today saying that I need to take a psychological/psychiatric exam to evaluate my mental status. What is this all about? Has anyone had this exam? What are they looking for? I will just tell the truth but I am more nervous about this test than about any of my heart tests, Stephanie. moodystephanie@hotmail.com


Jana B, June 21, 2001 - Hi, We are going to have to go on Kaiser Insurance. They already said they won't pay for Coreg unless I can't tolerate any other meds. I was wondering if anyone reading this has Kaiser and also uses Coreg? I have heard horror stories about stopping Coreg; remember Jerry Vigus? He stopped Coreg and died just a couple of weeks later - not that I know that's what ultimately caused his death. As a matter of fact, I still have the Coreg he sent me 2 weeks before he died.
     I am also on UCLA's transplant list. I don't plan to use it but Kaiser said I have to be pulled from the list and they will re-evaluate me at one of their clinics, then if I qualify by their standards, I will go back on the list at UCLA. They also said they will not take my medical records into account and I have to go into Kaiser as a new patient and get rediagnosed with DCM, etc,... Theoretically, I could end up going without meds intil they "diagnose" me. I have to wait for referrals to have all my tests done again but they said they would speed the process up so I wouldn't have to go too long without meds.
     My son also has DCM. I was also told that he would not be covered because he will be 21 this month. Twenty-one is their cut-off date. He is currently covered by our HMO because he is considered disabled. Can anyone enlighten me on Kaiser? If Kaiser is as bad as the member service described to me, my husband will not take this new job.
     Also, my son was approved for SSI but then told that his case was randomly selected for federal review and it will take longer now for him to get benefits, if they don't deny him at that level. It has been 8 months since he applied. Does anyone know anything about that aspect of SSI?
     I need 10 to 12 hours sleep at night too and my son seems to need more than that. Luc, I take 50mg Cozaar and have had no ill effects. For whoever posted here way back when, I also lost a bunch of weight when I was first diagnosed. I lost 67 pounds and am still losing. Well, I am still alive as is my son and for that I am thankful. I am doing well but he isn't. Any info on Kaiser would be appreciated. Thank you guys and God bless each of you. Jana Byers, age 38, EF 21%, DCM, CHF, MVR. JByers4u@aol.com


Ben B's June 21 reply to Sherrel G's June 15, 2001 - Hi, I was so sad and shocked to read of the death of Mike Joye. I was very saddened because I know he had a wife and children, but was also quite shocked because he seemed to be doing so well. He was working full-time and going to the gym regularly. I had e-mailed him a few times and he seemed like a positive upbeat fellow. I couldn't help but note that often it has been the people who seemed to be doing the best, such as Julie Kendall or Al, who passed away suddenly.
     Also, in the past couple of years I have had a couple of friends pass away from accidents who were perfectly healthy. Seeing the old e-mails on my computer is sort of an eerie testimonial. However, this only strengthens my resolve that it is best to try to think and live as positively as possible, and to try to accomplish whatever goals we are capable of, no matter what our physical state. Although I don't feel terribly, I am constantly aware of an extra weight on myself caused by my disease. I feel like a horse burdened by a weight: I am always a little bit tired or a little bit out of breath and I always have the thought in the back of my mind that I could worsen at any time or just drop over dead. I've come to get used to all of this, and it just seems like normal life now.
     I know that we will all someday be forced to relinquish the earthen vessels we now inhabit, and then attain whatever victory or defeat we may be entitiled to. In the meantime I am more convinced than ever that the only way to live here is to continue to push for small temporal victories - getting a new degree, publishing a web site, raising a child, or even just getting out of bed if that is a struggle. My prayers for all the departed and their loved ones, especially Mike Joye and his family. bdbrinkman@juno.com


Brandy, June 21, 2001 - Hi, First of all, I have been stable for about 6 months. My EF is 50% on the last 2 echos. Lately, every time I stand up my BP drops (which Jon commented on as postural hypotension) but my pulse also rages out of control, into the 117s range. At rest my pulse is 57. The doctor is putting me on another Holtor monitor tomorrow to see if they can find arrhythmias or whatever. They cut my Zestril from 10mg BID to 5 mg BID but it didn't help. I was wondering if anyone has had experiences with their pulse (heart rate) like this.
     Also, they switched me to 25mg Toprol XL daily from 12.5mg metoprolol twice daily. Has anyone had any good experiences with this drug? Thanks for all of your support. I am really scared about the monitor and arrhythmias. Are there medicines that can control these if there are some occurring? Thanks. ladybugs1114@netzero.com


Joanne E, June 21, 2001 - Hello everyone, I have a question and I would like for as many of you as possible to respond: How much do you exercise? Are some of you not able to exercise at all? Do you think EF is a factor or what about class - both or neither? I'm asking in order to try and understand how I'm doing. I really would appreciate your help. Thanks in advance, Joanne E. javajo90@aol.com


Jon's June 21 reply to Joanne E's June 21, 2001 - Hi Joanne, Personally - and this is just me - I think EF has very little to do with ability to exercise. Functional heart class, which is what we almost always mean when we say heart class, has everything to do with it. However, that's because how much we can exercise is what defines our heart class - not the other way around. ;-)
     I hope others respond for you because right now I am not exercising at all so I can't help on that. Jon.


Dorothy, June 21, 2001 - Dear Friends, I was diagnosed with CHF at the end of April. I suppose I should not have surprised when I developed PAT. (Paroxysmal Atrial Tachycardia) last weekend. I have always heard that heart patients do not deal with heat very well. I was at a home building products store. I knew the store seemed hot when I first went in. By the time I got to the counter to pay, I was in trouble, with a heart rate of 180. I finally wound up in the ER and the docs were able to use meds to get my heart rate to normal.
     The following was on the discharge info sheet: To prevent a recurrence, avoid all stimulants such as coffee, tea, cola or medicines with caffeine; and stay cool (my advice). Also, some over-the-counter cold and sinus meds, along with diet pills, can over-stimulate the heart. Avoid the use of cocaine and amphetamine, the most powerful of all heart stimulants. Overactive thyroid and some types of heart valve disorders can also cause PAT. If another episode of PAT occurs, lie down and try to relax. These spells sometimes will stop by themselves after a few minutes. If PAT continues, you may be able to slow your heart down. Sit or lie down, take a deep breath, and hold it. Bear down hard with your stomach muscles as if trying to have a bowel movement. Strain for 5 seconds. If this does not work, wait at least one minute and try again.
     I hope this info might be helpful to others. I hope you are having good days. DPowell806@aol.com


Mike W, June 21, 2001 - Hi all, I'm a little less upbeat then my last post about my EF elevation. It was curious though, that a bunch of people posted similar good test results at the same time. In my three-plus years on the board I don't think I've seen such a coincidence. My doc called today with my blood work results. My cholesterol is off the map and triglygerides even worse - the struggle continues.
     Jon, pushing my nosy self, are you having same ol' problems? I mean I hope it's not new and scary stuff. I know a whole lot of us are concerned for your well being for both selfish and unselfish reasons. <g> I just want to thank you again for all your hard work and most importantly your kind and wise words for others. Peace, Mike Wafkowski - a slightly grumpy old man this evening. mikeyw@sohogurus.net
 
Jon's note: Lessons are sometimes learned more completely at the end of a big stick. The Lord hit me with one but I'll be better for it. <g>


Jim L's June 21 reply to Kathleen's June 21, 2001 - Hi, You have a lot of questions and I think that someone particulary knowledgable can help you (maybe Jon). I might be able to help with the Coreg question. They always start you at a very low dose because this chemical can be devastating to some people. My doctor put me on that low dose and I developed depression and a-fib. I was miserable until he took me off it completely and substituted atenolol. For me, atenolol does everything that Coreg does without the miserable side effects. Best of luck, Jim. clocker131@home.com


Ruthie A's June 21 reply to Autumn's June 21, 2001 - Hi Autumn, I had back surgery to repair a blown disk. I checked with my CHF specialist beforehand and my surgeon consulted with him too. I also had a conference with my anesthesiologist before the surgery so that both of us would be on the same page regarding my heart. The docs took extra precautions and also reserved a bed in ICU for me but I did so well that I never went to ICU and went home 2 days later. Now I don't have the heart problems you have, although I have had a TIA. Maybe you want to run this by your CHF doc to see what he says. You may have some options you are not aware of. Just a thought, Ruthie A. rlaba51@yahoo.com


Patrick, June 22, 2001 - Hi, After hearing about so many people who are living alone and getting SSD that is only a few hundred dollars a month and not being able to pay rent, buy groceries, and meds, my heart goes out to each and every one of them. My own sister, who just had a kidney transplant, only receives a little over $400 a month SSD and if it were not for my parents being able to pay for her apartment and buy her food, I don't know what she would do.
     This got me to thinking that if all of the people who weren't receiving enough money to live on could some how join forces and get together in groups of 3, 4, or 5 and rent one house with enough space for all that would only cost each of them a couple of hundred dollars a month. Then they would not only have a home with low rent but also they would have the companionship and emotional support of the others.
     I'm sure there are landlords who would love to have tenants that would pay on time each month. Since SSD comes like clockwork, that is what they would get. They would also get the satisfaction of knowing that they are supplying housing for disabled people. I'm sure those 2 reasons alone would be incentive for landlords to only ask enough rent to make the mortgage payments and not make any monthly profit other that all the tax breaks that come with owning rental property.
     I have nothing to do with my time these days and I have been praying and asking the Lord to guide me to something or some way that I could volunteer my time to help those who are more needy than myself so that I could serve some real purpose while here on earth instead of just taking up space and using up air. I feel very strongly about helping others and would like to pursue trying to set up some kind of a web site that disabled people could use to find one of the joint venture rental houses I mentioned. I would take it upon myself to contact property owners and negotiate a rental agreement once a group of people was put together in the same geographical area.
     Anyone who knows someone who is not receiving enough SSD to live on and thinks they would be interested in something like this please e-mail me and let me know, and I will see if there is enough response to warrant a program like this or not. Also, if anyone has any suggestions, any and all ideas would be geatly appreciated. Thank you for taking the time to read this. God bless you all, Patrick. NarleyHarleyGuy@webtv.net


Ruthie A's June 22 reply to Ginger's June 21, 2001 - Happy summer to all, Ginger, I went to my cardiologist a few weeks ago (not my CHF specialist, who is a 4-hour drive away) because I was super-fatigued and very short of breath to the point where I was coughing quite a bit. I knew that he would not hear any rales in my lungs - I am one of those who must be near drowning in order to hear any fluid sounds in my lungs. However, after the doc gave me a cursory check he asked me if I had ever been told I had asthma. He wanted to prescribe an inhaler for me so the cough would stop and I would breathe better.
     I knew in my "knower" that it was not asthma but rather increased pressures and some fluid build-up in my lungs. I left feeling quite frustrated since I had hoped he would give me some advice on how to get rid of the extra fluid. So I took matters into my own hands and did as my CHF doc would do if I needed to go to Club Med; I ordered myself to bed, kept a very close track on my Is and Os, and upped my Zaroxolyn for a couple of days. It worked and my breathing went back to normal. I may be dumb, stupid, or whatever, but I am very leery of a doctor telling a CHFer that he has "suddenly" developed asthma. I would go through every allergy test available and consult an asthma specialist before I would believe that one. Ruthie A. rlaba51@yahoo.com


Fred D's June 22 reply to Joanne E's June 21, 2001 - Hi Joanne, I am a class 3 CHFer. I have had 2 heart attacks and possibly a silent attack of which I was not aware. My sole exercise is walking. Sometimes I can walk for 15 to 20 minutes and sometimes I can't walk for 2 minutes! I asked my doctor about this and told him that I noticed shortness of breath and tightness in my chest when I attempt to do anything after eating. He told me that digesting food takes energy and that my heart could not do 2 things at the same time. He suggested that I eat my large meal in the morning, medium at noon, and a light meal at night.
     Heat is a real factor for me and if you add humidity, it really affects me. I live in southwestern Kansas and normally it is pretty dry but if it is hot and humid I stay inside. If I want to walk and know that I am going to have problems, I will take a nitro pill a few minutes before I need to go. I have a dog who thinks he needs a walk every night and I attempt to oblige. My doctor has indicated that using nitro should be no problem. I don't know if anyone else uses nitro for a boost. To answer your question, walking is all the exercise I get and I have to be careful when I do that. deal@midusa.net


Ruthie A's June 22 reply to Joanne E's June 21, 2001 - Hi Joanne, I have severe arthritis in my knees so I am not able to walk very far. So when I exercise, which I am not doing right now, I have to work out in a warm-water pool. I was only able to get up to an hour 2 times a week in the pool. Any more and I would overdo and end up in bed for a week. The only difference I see now from when I was working out is the frequency of my super-fatigue days. I have more of them now than I did when I was exercising but I haven't kept track of how many more. I think that those days are more intense than they used to be when I exercised. Other than that, I haven't seen any difference in fluid retention or stamina or anything like that. I just wish I could find a free warm-water pool. It was so much fun! Ruthie A. rlaba51@yahoo.com


Sharon P's June 22 reply to Joanne E's June 21, 2001 - Hi, I have had DCM for almost 4 years and I am currently exercising 3 times a week for about an hour: Forty minutes on the treadmill and then some weights. My doctor would like to see me do 4 times per week but I'm lucky to get in the day I do. It's not because I don't feel good but I just always seem to run out of time (a very poor excuse).
     Exercise is a must for most of us, so start slow and see what you can tolerate. I was lucky that my insurance paid for 12 weeks of cardiac rehab and then later I was in cardiac rehab again free as a part of a clinical study. This gave me the confidence to go out on my own. When I am walking or exercising I always wear my heart monitor, which I purchased at a local pharmacy. I hope this info helps. Blessings, Sharon P. sparker103@home.com


Sammy L's June 22 reply to Joanne E's June 21, 2001 - Dear All, I just wanted to let you know about my exercise. I walk. I walk my neighborhood. Slow some nights I can manage fast if I am being chased by the crack heads and that is not kidding.
     I am going to walk for fund raising for the American Heart Association. I hope I also get the opportunity to meet others who are in the 40 year age range. All of my rehab has been with people who are in the 70 year age range. I don't want to discriminate but issues have come out of that such as not being talked to because I am "young," hearing stuff like, what did you do to cause this, did you do drugs (yeah - beta-blockers) to the type of music played while exercising, and being ignored by staff (maybe I scare them - facing their own mortality), even the culture thing of not discussing how it affects me emotionally (depression) to how it affects the sex life. Mostly I just want to let you know while I am doing this that I will be doing this for everyone who can't. I will be sharing this site along the way. This will be my first year doing this. I feel blessed to have the opportunity.
     I see doc today for my echo results. He will be surprised when I show up with 2 pages of questions. Thank you for helping me overcome some of my fear. I have spent too much time trying to not know what is happening to me. While I still am not interested in being aggressive with knowledge because most days I just want to be normal, as if that can be, but I just don't want to obsess, which is my personality defect. The walk will be June 30 here. Peace and prayers, Sammy. SammyL@home.com


Mary A's June 22 reply to Joanne E's June 21, 2001 - Hi, I have questions about the whole exercise thing too. Right now my doc says I'm not able to walk 200 feet without resting. I knew that already, of course but I hate how useless and trapped I feel! I also hate how much weight I've gained as a result. I've been wondering about Tai Chi, and if it's a usable option for those of us who can take only low-impact exercise. Any ideas? kactus@voyager.net
 
Jon's note: See this page & remember to use the search engine ;-)


Maxine S' June 22 reply to Kathleen's June 21, 2001 - Hi, Two weeks ago I had an ICD implanted. I was able to get in on a study in Milwaukee. It was near the study's end but now 80 more slots are going to be made available. They are doing this at Mayo, Rush in Chicago, and St. Luke's in Milwaukee, plus other "heart centers." This device works in 2 ways. It imitates a healthy heart beat by shocking both sides of the heart so the chambers work together to pump blood efficiently. It also provies defibrillation to protect against sudden cardiac death. It is Medicare-approved and is expected to be approved by the FDA within the year. My symptoms seem similar to Kathleen's. The device is made by Guidant, and called Contak CD. In Milwaukee, you can call 414-385-5523 to see if you qualify. I can already see the difference when I walk outdoors, and bike. I wish you the best. I was fortunate to have heard about this on television and also my cardiologist (we live 50 miles from Milwaukee) recommended this for me. jusmax@milwpc.com
 
Jon's note: Contak CD info has been available on this site since March of 1999! Centerwatch - available through my Links page - will e-mail you about which trials are available in your geographical are as they become available as well.


Autumn's June 22 reply to Mike W's June 21, 2001 - Hi Mike, The first few months after I was diagnosed I was also grim, anxious, and depressed. I still cycle into that. I was also angry; angry over the way I was told and then not given any information, angry that I got this disease when I felt I had already received enough hard knocks in this life. I didn't want to die and I still don't. Life keeps adding more illness to me and I feel overwhelmed at times. The strange thing is that I also find new strengths, deeper love, and deeper appreciation of what is important. I am forced to accept and deal with the reality of whatever is going to be my fate. I feel sad about how things are, but I experience life on a much more caring and spiritual level now.
     The thing that started this transformation happened about 8 months after my diagnosis. An 73 year old volunteer was sent to get me from the waiting room to take me for an echo of my heart. We got to talking and he told me his sister was diagnosed with heart disease at 50 years old. From then on, all her life she worried so about dying that she didn't enjoy her life. Though she had a lot of health problems she lived to be 78 years old. That is when I decided to come to more positive terms with my illness. It isn't easy. It often comes in baby steps. I still feel a sadness over my health but I feel a calmness in my soul I have never felt in my life. That volunteer really taught me that even though things might indicate a very short life, we really never know. Even if it is true, what a shame to waste whatever time we get. Autumn. AmberDawn-Blzn@webtv.net


Duane L, June 22, 2001 - Hello everyone, After being diagnosed with cardiomyopathy and CHF in February of 2000 with an EF of 15%, my EF has now risen to 40%. If most CHF symptoms are gone does that render the CHF in limbo? Also, I noticed a lot of comment on drinking excess fluids. I notice my kidneys actually flush better by higher liquid intake. Thoughts? okc24@aol.com
 
Jon's note: Have you read The Manual?


Tracey C's June 23 reply to Brandy's June 21, 2001 - Hi Brandy, I've had the same problem, especially in the morning. Lying in bed my pulse is in the 50s and as I'm getting ready I notice shortness of breath and my pulse is 115 plus. I also notice it if I have to stand for long periods. My EF is also 50%. I'm on a 30 day event monitor now to try to figure out the problem. I'm off all meds except 20mg Zestril a day. My doc thinks that possibly due to losing 100 pounds since August, exercising, and eating right, my body has naturally regulated my BP. So with the extra help of Zestril, it's too low and when I get up my heart trys to compensate, hence the fast pulse. Good luck with your Holter. Tracey C. 2tcollins@home.com


Ginger's June 25 reply to Ruthie A's June 22, 2001 - Hi Ruthie, I am not quite buying the asthma thing either, but last night I happened to talk to Gino and he said some people can get sudden adult onset asthma but they cannot tell without tests - certainly not with a stethoscope, which is how mine was done. <lol> He told me to get a new doc right now.
     I am feeling better but I might have have anyhow. I didn't take the dosage of inhalers he told me to take because they made me want to climb the walls. As for exercise, right now I am not exercising but as soon as this stuff is over with I am going back to it. I walked a treadmill for 15 minutes in the morning and 15 minutes at night. I have noticed I get tired more easily now that I am not doing it. I never went to cardiac rehab and just bought a pulse monitor and started out at 5 minutes a day, which is how I will start it again.
     I hope this is some help. The story about spending our lives worrying about dying is so true. That is not living. I have come to believe in quality over quantity. I do not want to die but I do not want to live spending my time being afraid to live because it may make me die, within limits of course. I learn more and more every time I come here and read what people write. Thank you all for sharing your lives with us. Jon, stay well, would ya? We need you. Hugs and prayers, Ginger. angelgin@bellsouth.net


Henry's June 25 reply to Autumn's June 22, 2001 - Hi, Thanks for the kick in the pants. I just found out that my doctor is no longer available under my health plan and I was getting depressed, but your words will put me into high gear next week, and I am sure I will find someone who will be even better. Does anyone out there know of a CHF clinic in the Space Coast area of Florida? Thanks again. vhagaralso@aol.com


Debbie, June 25, 2001 - Hi, I am new to this site but reading all the information and reading all the comments has given me a much better understanding of my condition. I was first diagnosed with peripartum myocarditis in 1990 at a young age of 22 after giving birth to my daughter. My EF was 12%. I underwent several heart caths and all that follows to find that it was supposedly caused by a virus with high fever. I was also strongly advised to never have any more children. After 10 years I had no problems with my condition and I went back to a very normal life style, completely off all my meds after 2 years of being diagnosed with the condition.
     About 10 months ago I gave birth to my third child, a blessing I must say. During the pregnancy I remained under close doctors' supervision and my CHF cardiologist of the past 10 years. I had a smooth pregnancy up until one month after my delivery, which was a scheduled C-section. I was at a football game and started feeling very bad. I went to the ER and found that I was in CHF. I was at a 24% EF and also had a damaged valve - I guess from the pregnancy.
     I am now at a 45% EF and I feel great. I am taking my meds but sometimes it's very hard for me. I get very tired and sometimes even depressed. I have had other problems come up but very minor and not life-threatening at all. I was soooo confused about my condition and with all the self help books I have read I still never understood what my condition was or the severity of it. I have a cousin in the hospital who is 33 years and in a coma with CHF. He never knew he had it. He passed a blood clot to his brain and has severe brain damage, not to mention a blood clot still in his heart. This was an eye opener for me and brought me to research this site.
     I am glad I did. It has really answered a lot of my questions and even though I didn't want to know some of the answers I now have a better understanding and know that I must appreciate all the days that I have left. Thank you, Debbie. mrsdsal@yahoo.com


Sammy L's June 25 reply to Patrick's June 22, 2001 - Hi Patrick and all, I absolutely loved your idea. I sent a personal e-mail to you and hope you respond. We did a fundraiser for the American Heart Association yesterday. It was grand! A friend of mine had her coworkers donate items for a yard sale. Anyone who came was asked only to donate if they took an item. We provided baked goods also. We earned about $180 US for the day. Most people gave $5 US at a time whether they took or not and it felt soooo good. We also managed to help some disabled and low-income neighbors by having items they needed and they gave a little too.
     I sat in the sun, kept myself hydrated and got the first sunburn I have had in 2 years. Mind you, I used to be able to work like crazy for community projects and earned a sunburn often. This was close to my heart (pun intended). I thought of all of you and hope you had good days.
     I saw my doc and he said good things and was happy I have begun doing research. He supported my inquiry about CoQ10. I am not sure I will start it though. Currently I take 5mg folic acid. No one seems to know for sure if it works. I still am baffled by the CoQ10 info I read. He said my echo showed about a 70% ejection fraction, and my mitral valve prolapse remained but not detrimental. I have 3-vessel disease, carotid and peripheral vascular disease. He did tell me that the intermittent claudication is a symptom of peripheral artery disease but not everyone with PAD experiences intermittent claudication.
     I asked him what are the most angioplasties anyone has had and he said he couldn't know for sure but maybe from 6 to 10. I laughed and told him I had 2 more to go then. I did ask him what good a CABG would do if all I do is keep occluding and reoccluding. He said some studies showed that the reocclusion slowed after CABG. Something tells me that would not be my case, probably from 8 angioplasties in 2 years. He was so wonderfully patient when I whipped out those 2 pages of questions. He put me on the Plavix for life now and I am back on Imdur because I experienced loss of vision in my eye again. He doesn't want to redo my carotid echo for another couple of months. I just had one done and it showed the right side as 30% blocked. I have had the left side cleaned out already. Believe me, if my symptoms get worse I will call him and insist but another doc does my neck. I wonder if you can have repeat endarterectomies?
     Peace and prayers for all of you. Sammy. SammyL@home.com


Joe S, June 25, 2001 - Hi, First, I have a new e-mail address. About exercise, when I first moved here to the eastern high Sierras I could only walk about 150 yards without feeling my chest tighten. Now on most days I can walk 1 1/2 miles twice a day and feel 1000% better then I did 2 years ago. It took months to increase my walk but it was worth it. Joe S. jes@gbis.com


John Len's June 25 reply to Patrick's June 22, 2001 - Hi, Fortunately I get about $900 per month but if I didn't own my home I would be up the creek.Your idea for like kind getting together to share expenses is a good one but their needs to be a clearinghouse in order to get these people together and make sure they are compatable with each other. Someone would have to get that started. As to the landlord holding the rent to the mortgage payment, that is impractical because you have to consider other facters such as upkeep and repairs. Also, the last time I read the fed regulations concerning IRS deductions on house rentals, the landlord has to get fair market value for the house in order to take his deductions. a_lenny6@hotmail.com


Michael's June 25 reply to Joanne E's June 21, 2001 - Hi, In response to your exercise question, I am able to exercise a lot more frequently than I had expected to when I was diagnosed. In fact I have yet to feel any ill effects from exercise since my release from the hospital. I do sleep more now than ever before but I sleep a lot whether I exercise or not. I currently ride my bike or walk everywhere I go. I play basketball a couple of times a week and during last week's hot spell I had a few healthy friends who could not keep up with me. I am very young compared to many people with this disease however. I am only 29.
     It is my opinion, after talking to my doc and due to my experiences, that the most important factor in how much exercise you are capable of may have a lot to do with the amount of physical activity you were engaged in before you were diagnosed. If your body has not been trained to function in spite of fatigue you may take a long time to respond positively to an exercise routine. anthrophobe@usa.net


Eris, June 25, 2001 - Hi, I just got out of the hospital where I was treated for pneumonia, anemia, and acute kidney failure. I was getting more and more tired for a few weeks before this. I was also noticing a tremor in my hands, which my internist told me was from old age. At first, I thought the tireness was part of my CHF but when I began to have fever, with the highest reaching a bit over 101, with intense chills I knew something worse was going on.
     Of course it was on a weekend, but we called 911 and I was taken to the VA hospital where I spent most of Saturday in the emergency room before being admitted to the hospital. Then I was given IV antibiotics, which began working almost at once. It turns out that I had strep pneumonia, which may have been causing my other problems. My hemocritic blood count was 29, so I was given 3 units of blood. My creatine levels were bad but now have improved and are probably back to normal. I came home on Tuesday and continue to feel better.
     I am taking antibiotic pills now for another few days and resting a lot, but the worst is over. I was really afraid when I was told about the anemia because they thought it might be due to internal bleeding and at first they didn't know where. They were unable to find any source other than my lungs, presumably due to the pneumonia. I had just seen my internist the week before but unfortunately she does not notice problems, even when I describe my symptoms as accurately as I can. When I asked her why she did not do more tests to see how I was doing in various areas, she said they (the VA) don't routinely test but relied instead on symptoms, and apparently not that either, in my case.
     At an earlier time another doctor noticed that my digoxin levels were almost at toxic levels, which she hadn't even noticed. This time the emergency room doctor said she noticed that my red blood cell count had been going down gradually over the past year and wondered why nothing had been done. It is difficult to change doctors within this system but I am going to try. I also have a cardiac doctor but I only get to see him every 6 months; the same with my pulmonary doctor. The internist is supposed to coordinate everything and as you can see, she doesn't. Well, enough for now. avark@mindspring.com


David A, June 25, 2001 - Hi, There was a full page ad in the Sunday, June 24, 2001, San Francisco Chronicle for the "HeartBar." I thought for a moment this was the grand announcement for the new and improved Myovive. However after cross-referencing on Jon's web site, I see that Myovive is now not due out on the market again till 2002.
     Has anyone had experience with the HeartBar? Evidently it contains 3g of L-Arginine per serving and may improve circulation, reduce angina and leg pain, and increase energy, according to the ad. Best of all, it's doctor recommended for daily use. Dezen@worldnet.att.net


Jan, June 25, 2001 - Hi all, It's been weeks but I'm here to let you all in on a reminder. I wrote questioning some symptoms after a drug change. Well, it turns out my insurance company changed me from Altace to monopril to save money (why else?) and sent me a 3 month scrip. It said right on it that my doc okayed it, so I took it. It sent me down the slippery slope into mega-symptoms of arrhythmia and fatigue. That's when I posted last. That same day I called the nurse and it turned out my doc had okayed a double dose of what is needed - 2.5mg Altace is not equal to 10mg monopril! I cut the dose in half after my doc caught it (when I called to question it) and am okay now. By the way, I had already fired this doc for not paying attention but am in between docs so I had to go to him for the question. I went through a rough time because I trusted him again and the insurance company. If ever your drugs are changed in the name of the almighty dollar, be sure the dosages are equal! Thanks to all for your concern and help, Jan. therowlands@att.net
 
Jon's note: I don't know if it helps much but the table at the bottom of the target dose FAQ page shows dose information.


Natasha H, June 25, 2001 - Hi, I am in the sleep field and have been for the past 4 years. I just wanted to drop a line informing anyone of the sleep disorder obstructive sleep apnea. Heart disease has been linked to this disorder and in my experience has aggravated it also. A couple of the major symptoms of obstructive sleep apnea are snoring, daytime sleepiness, pauses in one's breathing while asleep, and high blood pressure. I am not only in the sleep field but I have a grandfather, father, and husband who all have sleep apnea. The most common treatment for it is CPAP. If you think you may have this disorder talk with your doctor or you may contact me. Thank you. tashahaye@yahoo.com


Jack D's June 26 reply to David A's June 25, 2001 - Hi, The mysterious Heartbar. Yep, it's supposed to be good. Yep, some doctors recommend it. Yep, it costs an arm and 2 or 3 legs. Cheaper to just take the supplements and have a Three Musketeers. maddjak@hotmail.com


Jeanette, June 26, 2001 - Hi, I haven't posted in awhile. I am doing fine but have some questions. I am in the SCD-HeFT study and this past Thursday I had an ICD implanted in my left shoulder. Does anyone else have one of these? How are you doing, and coping with this? I am having a hard time adjusting to it and have been somewhat depressed and in fear that this thing will go off and give me a mule-kick in the chest. I have heard of this device backfiring. I don't have an arrhythmia problem and I am doing this study to help the NIH determine whether the ICD is better or the drug amiodarone in those with DCM. Any info will be very helpful. I am praying for all of us daily. Take care, Jeanette. jeanette841@yahoo.com
 
Jon's note: Also see my reply to Karen O on June 15, 2001


Jan P, June 26, 2001 - Hello All, I am an old-timer here. It has been 4 years since I first found you. Thank the Lord! I have been on Coreg for 4 years at differing dosages. I made wonderful EF progress (from 15% to 55%) at full dosage. I lowered the dose last year and have lost ground to an EF of 40%. The transplant doctor wants me to try Toprol-XL instead of Coreg to see if I tolerate it better. Are any of you aware of anyone who has switched from Coreg to Toprol XL and not lost ground? If so, have they had fewer side effects than from Coreg?
     What a bummer! Coreg works but my quality of life is poor. Without it I probably would continue to lose ground. Bye, Jan. jan.peterson@usa.net


Jon, June 28, 2001 - Hi everyone, I am once again behind on everything. My wife's pooter died and I am in the process of raising it from the dead. <g> Also, my site is taking a back seat to my daughter this summer. So it goes.
     A note to everyone - the MIRACLE ICD trial is still recruiting CHF patients right and left so if you're interested in heart pacing for CHF, ask your doc about it.Jon.


Mike W's June 28 reply to Jan P's June 26, 2001 - Hi Jan, This doesn't really answer your question but I have a new heart doc (whom I really like and trust) and he switched me from metoprolol to Toprol XL. My point here being that he told me that he now uses Toprol as his front-line beta-blocker for CHF patients. He's convinced that the positive affects are pretty much the same as with Coreg, but most people tolerate it better and it's, well, just plain cheaper. I'm sure you'll hear from others. Peace, Mike Wafkowski. mikeyw@sohogurus.net


Jon's June 28 reply to Mike W's June 28, 2001 - Hi Mike and everyone, There has always been a chance for confusion with metoprolol names but now that it has been officially approved for CHF and now that more doctors are prescribing it, maybe I should finally address it here.
     As far as I know, there is no drug named Toprol. What is prescribed for CHF is not metoprolol but Toprol XL, which is extended-release metoprolol succinate. There is also a regular metoprolol (metoprolol tartrate = Lopressor) that is not extended release but I would be surprised to see anyone with CHF taking it.
     Coreg = carvedilol, Toprol XL = extended-release metoprolol succinate, Zebeta = bisoprolol. You can read a great deal more, in relatively plain English, about the different beta-blockers at my Beta-blockers page. Jon.


Gwen S' June 28 reply to Jan P's June 26, 2001 - Hi, My doctor kept me on Coreg and then added Toprol XL. My EF has been up and down like a yo-yo, but it has helped greatly controlling my blood pressure. I don't know how many other people take both, but it has worked well with me. gwenddot@aol.com
 
Jon's note: Do you also take an ACE inhibitor?


Jim L's June 28 reply to Jan P's June 26, 2001 - Hi Jan, I also had trouble with Coreg. I could not even take the minimum dose. I felt bad all the time and had depression to the point that I didn't want to do anything. I would just sit. My doc finally switched me to atenolol and it worked fine. All the good of Coreg without the lousy feeling and depression. Good luck! clocker131@home.com


Joanne E, June 28, 2001 - Hi, Thanks to all those who responded to my question about exercise. Where else could I have gone to get such wonderful and quick answers? Hugs and prayers to everyone, Joanne. JavaJO90@aol.com


David A's June 28 reply to Jeanette's June 26, 2001 - Hi Jeanette, I have an ICD too. It was implanted in my left shoulder area 2 years ago this July. Considering everything else that is unique to my medical history, the ICD has been the least of my worries. I have adjusted to its presence and don't really notice that I have it in place unless I lie on my left shoulder. It took 6 months after implant to get accustomed to the ICD.
     Please don't fear that the unit will go off. It has been placed there to protect you from sudden cardiac death. You stated that you don't have an arrhythmia - what is the purpose then of the implant, and does the hospital plan to remove it after the research is complete?
     My device has never improperly fired and it is checked by EP staff every 3 months. Good luck to you! DEZEN@worldnet.att.net


David A's June 28 reply to Jack D's June 26, 2001 - Hi Jack, I don't have any extra legs to spare! So I'll forget about the infamous HeartBar. Too bad, I couldn't display my sarcasm when I repeated the statement that the bar is "doctor-recommended." Would Snickers be okay? Thanks! DEZEN@worldnet.att.net


William B, June 28, 2001 - Hi, My Coreg dose is up to 25mg BID. This is the target dose my doc is using. It was his reasoning that more people do better on a lower dose with less problems and seem to get the same benefits. I will be on this dose for 2 month and then take have echo to compare with the last one done in December. If at that time, the benefits are not achieved with this dose he will up the dose. It seems like the bad days are getting closer and closer and back to back. Has anyone seen the articles in Newsweek about the new solution for CHF in the future? William B. willdet@juno.com


Jon's June 28 reply to William B's June 28, 2001 - Hi William, Your doctor is disagreeing with 95% of the heart failure specialists in America about Coreg's target dose, main benefits, and ways to properly assess CHF patients' function in general and in response to meds therapy. He sounds like an internist to me rather than a heart failure doctor. In my personal opinion, he may be right about a lower Coreg dose being appropriate for many CHF patients, but I think his reasons are wrong.
     I do not think we get the same benefit at a lower dose - in either mortality or reduced hospitalizations. None the less, I think a lower dose gives us some benefit without so many truly difficult side effects seen in many CHF Coreg patients.
     He is certainly wrong about using an echo to measure a drug's impact on your life. I know this both from my personal experience and that of hundreds who talk to me about theirs. How we feel and how we function each day is far more important than any test result. My EF has gone up from 13% to 40% and I am in far worse shape today than I was then. Jon.


Mike W's June 29 reply to Jon's June 28, 2001 - Hi Jon, Sorry if I threw any confusion into stew, but I've always used the names Toprol and Toprol XL interchangeably because there is only one drug and it depends how lazy I am about typing.
     I was taking the generic metoprolol (50mg TID) for almost 3 years. At the time I had to pay for all my own medications and had no income. The heart doc was using it to both help the 'ol BP and just in case there were Coreg-like benefits to be had. As you know, there have been studies showing no clinical benefits using metoprolol for CHF but there are (I think) some conflicting info, Mike W. mikeyw@sohogurus.net


Jon's June 29 reply to Mike W's June 29, 2001 - Hi Mike, I just sometimes wait to throw an explanation out there until I see something that sort of looks confusing. Switching metoprolol to Toprol XL is so unusual it gave me a foot in the door, so to speak. <g>
     The ACE inhibitors with all those so-and-so-prils and all the beta-blockers with their so-and-so-olols are enough to confuse anybody and they still confuse me from time to time. ;-) Jon.


Virginia P, June 29, 2001 - Hi, I have been reading the posts but haven't commented for quite awhile now. I have received good reports for the last year during my visit to my CHF MD. I just wanted to say that Jon is right about EF not being as important as how we feel. My EF has not changed but I have been feeling better. They have changed a few of my meds over this last year and it seems to have improved my situation. I still have to be careful about being exposed to germs because my resistance is quite low. The transplant MDs wanted me in the ICD trials but I declined because I thought, why rock the boat?
     I have been busy learning a new craft and have a web site which some of you might find interesting. I do not charge enormous prices for my craft because I just want my costs covered so I can keep doing it. It gives me a lot of satisfaction and fills my creative need. The only other news I have is that I am now a great-grandmother. I am just to young for this so we will leave it at that. My web site is called Heartlight Designs and is located at http://heartlight_designs.tripod.com/.
     I hope you stop by and leave a message in my guest book so I know you have been there. Hi to all of you who remember me, and welcome to those of you that have come later and don't, Virginia Pauline. vpauline@mail.com


Ernest D, June 29, 2001 - Hi everyone, I have a question that I hope someone can answer for me. I recently had a MUGA which showed an EF of 19%. That same morning I also had an echo which showed an EF of 30%. Which test is right? If anyone can tell me, I would really appreciate it. Thank you, Ernest D. bornos@worldnet.att.net


Mae, June 29, 2001 - Hi, I'm fairly new to this site and this is my first post. I have endocardial fibroelastois, a-fib, CHF, VSD (ventral septal defect), a mitral valve replacement due to regurgitation, and have had a resection performed to remove some of the fibroelastis tissue. I was originally diagnosed in 1988 with 2 surgeries 10 years apart. I remained in fairly good condition until about a month ago when I was hospitalized for CHF.
     I had another echo performed and my EF was 42%, which is no different than my cath in January. However, since Memorial weekend I have been unable to exert myself, including dressing and showering, without becoming extremely short of breath. I am on Lasix, spironolactone (Aldactone), Capotril, Coumadin, Toprol XL and digoxin (Lanoxin).
     I have since had to go out on disability. I see many people with a lower EF than mine that are not nearly as symptomatic. I am no stranger to the transplant theme because my brother, diagnosed with the same condition 13 years ago, received a transplant. He is doing wonderfully and leads a very full, athletic lifestyle. He also advises me that I am more symptomatic than he was when he was waiting for his new heart. His EF was 11% at time of transplant. Why is this? The doctor has no ideas really, and just keeps trying different medications.
     I am not in any way retaining fluid. At times I think I feel great until I try to do a simple thing like getting dressed. I'm 39 years old. My brother had his transplant at 30. I realize I am not ready for a transplant, although they say it could be a real possibility some day. Is anyone with not so bad numbers very sympomatic? I would love to hear from you. Mboehm2968@aol.com


Ginger's June 29 reply to Jon's June 28, 2001 - Hi Jon, You are so right on. When I was first diagnosed with an EF of 30% I felt better then I have the last 6 months with an EF of 56% and now 40%. So I don't have any faith in the numbers. The only thing I have faith in besides God is how I feel! I would rather feel better with a EF of 30% than crummy with an EF of 40% to 45%! Hugs and prayers, Ginger. angelgin@bellsouth.net


Ben B, June 30, 2001 - Hi, I just had an echo and although I'm not sure, I pretty much suspect my EF has not changed from the 25% it was last time. I have noticed that when there is good news the techs are really fast to point it out. On the other hand, it seems like I feel better than 90% of the people posting here. I've got to say I'd like a good reading for once, although everybody says they don't care about it.
     For an unimportant measurement, EF sure seems to appear on these pages an awful lot. It is the one number everybody seems to have etched in their heads, and I've seen people go into panic mode when it drops. I don't think it is doctors that do this either, because my doctor wouldn't have ever even told me mine unless I had asked after reading this web site. bdbrinkman@juno.com


Jon's June 30 reply to Ben B's June 30, 2001 - Hi, I'm seriously short of sleep so I'll be blunt. First, I think the doctor treating your CHF needs some serious re-training if you had to ask about your test results - any test results. Don't judge anything by this doctor.
     EF is important. However, it is only a measure of cardiac output. EF does not in any way address the other incredibly important factors in the illness called heart failure; Factors that are now thought to have a more important role in heart failure progression than EF or the heart output it represents.
     Those factors - angiotensin and angiotensin 2, endothelin, aldosterone, norepinephrine, heart remodeling, ischemia, kidney and liver function, arginine vasopressin, natriuretic peptides, inflammatory cytokines, nitric oxide, and others - have as much or more to do with how we feel and whether we survive than ejection fraction.
     EF is important and referred to a lot for several reasons. The main reason is that it measures how much blood our hearts move per beat. Of course, that's important! However, this is only one piece of the heart failure puzzle. I have one extensive page under construction that explains all this. However, I am 2 months into it and it is only 75% done due to the difficulty of explaining such concepts in plain English.
     EF is also mentioned all the time because doctors who are not heart failure specialists think it is the end-all and be-all of CHF measurements. Why? Because they are behind the times! Contrary to your experience, many internists do tell test results to their CHF patients and they tend to place all their faith in that one measurement called EF.
     CHF specialists place more reliance on how we feel - heart class and its stability over time, and on Vo2max measurements than on EF. For prognosis, CHF specialists also worry more about serum sodium, pulmonary pressures, exercise tolerance, and renin-angiotensin system and neurohormonal control than they do EF. Ejection fraction is always a part of the picture so it is naturally important. However, it is only a part of the picture.
     EF is the mainstay of the old theory of heart failure called the hemodynamic model, which was based primarily on blood flow. The current theory of heart failure is called the neurohormonal model. It is much more complex, and much more accurate. In fact, current heart failure meds work by affecting neurohormones - including beta-blockers, ACE inhibitors and spironolactone (Aldactone). The new model of CHF came about partly because factors like EF simply do not explain how heart failure affects CHFers, either short-term or long-term, but especially long-term.
     My own PCP is an internist who does treat CHFers (no way is he treating my CHF) and one reason I am looking for another PCP is because he thinks I am pretty much healthy because my EF is 40% now. Someday he'll cause me great harm due to this incorrect belief on his part and I mean to get away from his care before that happens.
     Finally, the means to test for EF are in place at most hospitals and many clinics, while the means (and skills) to test Vo2max are not. It's cheaper to measure EF, and easier. There is less risk to the patient and therefore less liability for the medical center when measuring EF versus cath, MUGA or Vo2max testing. Finally, blood testing for many of the factors I mentioned is difficult, for reasons explained on the page that is coming. Such blood tests can also be very expensive, costing about $1000 US to test some of them. That makes EF measurement very attractive economically compared to more extensive and more useful testing.
     Please take the time to read my EF page. Either I don't know how to explain it or you're not reading it. I am bringing it all together on one page as I said, but this info has actually been on my pages for years. The RAS is explained on the ACE inhibitor page, the nervous system on the beta-blocker page, and so on. Jon.


Jon, June 30, 2001 - Hi everyone, My whole host service went down sometime in the last 12 hours - my site, my e-mail, the works. So until it's fixed, you won't be able to read this <g> and I won't be able to update posts. Jon.


Linda O's June 30 reply to Ernest D's June 29, 2001 - Hi, I just had my yearly MUGA and my EF was only 22% this time. I questioned 2 of my nurses and they said this is no big deal and that we could do it again tomorrow and it might be different. It has stayed at 24% for several years and I have been on Coreg several of those years. It has not changed before and they always reassure me that at least it is staying steady. My cardiologist never says anything about my EF when I do my echo. She pays attention to my leaky valve then. I usually get a MUGA in the spring and an echo in the fall. I am in the SCDHFT trial though. Linda O. Norvalo@clarinda.heartland.net


Lydia Moore, June 30, 2001 - Hello Jon and everyone, It has been way too long since I posted but I always check in and try to keep up. I was wondering if there was anyone who is on SSI that I could connect with who knows some of the ropes. I don't know if the rules are the same as SSD, but I feel like I am being watched like a hawk and I really coould use some good advice. I see that you have lots of good information for SSD but am not sure if this also includes SSI. God bless all of you, Lydia. Flanders66288@cs.com
 
Jon's note: SSI is completely different and I know very little about it so I hope someone e-mails you


Bill D's June 30 reply to Jon's June 28, 2001 - Hi Jon, A Nurse Practitioner who works for a CHF specialist told me that half the dose of Coreg gives you 80% of the benefits. I think they found it out with clinical trials, but I can't prove it. When I was in the clinical trials, they kept following the patients who can't take the whole dose. SKB didn't want their patients to know that. The patients would be splitting the Coreg pills much to the detriment of SKB's bottom line. Bill D. billdog11@earthlink.net


Jon's June 30 reply to Bill D's June 30, 2001 - Hi Bill, My CHF doc discussed reducing my Coreg dose with me when I was tending toward just stopping it entirely. He told me that benefit goes down dramatically with dose reduction and that under 12.5mg BID, he wondered if the benefit was worth taking the drug. He felt strongly enough about it that he said if I went under that dose, I should consider getting another heart failure specialist.
     As I said, there are benefits to be had at lower doses. I never dispute that. I do, however, need to see results of a large, well designed trial before I'll believe the comment made by that nurse. ;-) Nurses, nurse practioners, and physician assistants sometimes make such comments to patients based only on comments they have heard made in passing in the medical "community" and these are sometimes incorrect. In this case, the comment may be absolutely accurate. However, I need more than the comment itself to convince me.
     I doubt that a drug manufacturer would supress such information because doing so would actually reduce profits. Think about it. Almost all CHF patients could take Coreg if a substantial benefit was proved at such a small dose that no one suffered side effects. Since Coreg pills are not priced by the milligram dose contained in each, the company would make a killing! Jon.


Jeanette W's June 30 reply to David A's June 28, 2001 - Hi David, My implant is there for the rest of my life. I can't see them taking it out in 5 years just because the study is over. I would be crazy to do that because many older people with DCM eventually develop an arrhythmia problem and I would probably end up with one down the road, not to mention that if I ever went into V-tach it would benefit me to have it. I am not planning on dying any time soon and this will reduce the risk. I could have it out when the battery starts to go weak in 8 years but again would be stupid to do so. Thanks for the input. I really appreciate any at this time. Six months seems like a long time to get over this. I pray God works faster in me. I am going nuts as it is. Thanks, Jeanette. jeanette841@yahoo.com


Linda Z, June 30, 2001 - Hi, I just thought I would add my two cents of the EF issue. There are some forms of heart failure where you can have a perfectly normal EF and still have heart failure. In my case my EF is more than reasonable but on my last Vo2 test I was considered to be in class 4 heart failure. So in the case of restrictive cardiomyopathies, EF doesn't really tell you anything at all. My heart can pump the blood out, it just can't relax enough to let more blood in. I sure wish I could find more people in the same boat. zame@earthlink.net


Vee, June 30, 2001 - Hi, I'm just throwing in my 2 cents worth about beta-blockers. I couldn't tolerate metoprolol because it made me feel drugged and unable to pay attention. In fact, it made me so stupid that I stuck with it longer than I needed to! No, I wasn't taking Toprol-XL, which is non-formulary at my HMO. I switched to Coreg about a month ago and so far, so good. It took about 3 weeks to get over the residual effects of the metoprolol but I'm feeling all better now. In fact, I'm almost a functional human being now. :-) I can even find my car in the parking lot most days!
     I guess our responses are very individualized on this one. I've also gotten pretty concerned about potential rebound effects from beta-blockers. Probably because of dose differences, I had a couple of days of major blood pressure increase when I went from metoprolol to Coreg, with skyrocketing blood pressure lasting for several hours after some adrenalin rush experiences. I can see that withdrawing off this stuff might be a killer.
     That puts a whole new, scary perspective on taking these meds that I totally didn't appreciate until after I'd started. As far as drugs of choice for CHF, I have some mixed feelings on that. I hesitate to say this, but I think Coreg is just ridiculously expensive. Yes, yes, I know clinical trials and all that are very costly but I still think we're being exploited. If I had to pay most of the cost of Coreg myself, I think I'd be talking to my doc about other options, especially since I did well for the first 2 years without it. Another inexpensive beta-blocker might get my heart rate and blood pressure down just fine and save my heart some wear and tear, even if it lacks the seal of approval for improving mortality. I'll bet Coreg won't be widely embraced as a standard of care item for CHF, nor routinely prescribed by the typical internist who takes care of most us us out here, until the patent expires or there are a lot of competing drugs in the marketplace; Or unless it's convincingly demonstrated to health plans and insurance administrators that costly Coreg can cut way down on those 1.7 yearly hospitalizations that CHFers apparently accrue on average. Sorry guys, let me get off my soap box. <g> maize2001@hotmail.com


William B's June 30 reply to Jon's June 28, 2001 - Hi, I had a chemistry instructor in college that was giving us instruction before lab finals on finding unknowns. Her thinking was that all test and testing was flawless up to human interaction. I do not put much stock in any test results that have so many human desires involved, such as greed (money), denial, hope and other basic health desires of any once-healthly individual.
     I think that all of us CHFers are like those in "Catch 22." We are in an insane situation, living in an insane world, dealing with insane people who tell us insane things about our life. When we try to live in that insane situation with a sane reaction, our sanity is question for realizing that we are in an insane situation. My insanity is that I am slowly drowning in my own fluids. My sane reaction is to try these new drugs up to the point that I can still function and run (winding down) my business. From my local doctor to the heart doctor at the third-rated heart clinic in the US, they have all told me nothing can be done except to be evaluation for a transplant, which I will refuse to do.
     I use my own levels that my body reaches before I add and or increase dosage. I put little stock in any test results other than the new drugs did not kill many people and that some people received some benefits. I am not looking for some miracle cure. I am just trying to buy time to wind my affairs down. When my body drops back to the same symptoms I was at before, then i ask if dosage can be increased or something else added. I actually see little use in the echo test my doc mentions. This test will give him some data that will mean little to me. If I do not feel any better and cannot do the things I do today, I sure do not need the added expense. You guys have a good July fourth. William B. willdet@juno.com


Jon's June 30 reply to William B's June 30, 2001 - Hi William, I have no idea what most of your post means. I see that you place faith in how a medical center is rated by somebody but you place no faith in drug trial results, which are just a means of rating drugs' effectiveness. I don't get it. Maybe it's lack of sleep dimming my bulb.
     I do know, however, that a medical center's rating (regardless of rated by whom, when or why) does not mean that any given staff doctor is a particularly good healer. ;-) Jon.


Karen K, June 30, 2001 - Hello, I read often and post rarely. I've recently started being seen at the University of Iowa heart failure clinic. My first 2 visits were one month apart and my third 2 months after the second. I'll have my fourth visit 2 months after the third. I see a lot of references made to Vo2max testing and stress testing. I've never had either of these tests done and I've been diagnosed with idiopathic cardiomyopathy for 1 1/2 years. I guess my question would be, is this something I should ask about or should I have to be asking? My meds are now Lanoxin, Lotensin, Lasix, spironalactone, and Coreg.
     Since my diagnosis, I've only been hospitalized once and that was quite bizzare. Within an hour's time I found myself unable to breathe. I'm told that they were able to get fluids from my body but I know that the morning before this happened, my weight was in its regular range. At my last visit my doctor told me I had a "good case of CHF" although I am mostly asymptomatic. I am able to exercise at 3 mph with no breathing problems and I work part-time. I have a lot of back problems that I feel actually interfere with my lifestyle (other than the dietary stuff) more than my cardiomyopathy.
     I've wandered away from my main question. Should I be requesting further tests? The last time I had a MUGA and echo were when I was in the hospital in January of 2000. Karen. karenk@machlink.com


Jon's June 30 reply to Karen K's June 30, 2001 - Hi Karen, These are tests whose results are most helpful for people who have difficulty functioning/exercising. People who can function day-to-day rather well probably shouldn't worry about these tests, unless they have angina. At least, that's how I view it - I'm no doctor! Jon.


Sammy L, June 30, 2001 - Dearest All, Today was our local American Heart Walk. Those of us who participated raised approximately 150,000 dollars. I write this overwhelmed to tears and struggling to breathe. Today I saw and met so many people from all ages affected by heart disease and stroke.
     I woke unusually tired and my lungs labored from the heat and humidity here. I went outside and sat on my front porch debating if I should push myself physically. My friend, who is a stroke survivor, was counting on me. It was a whole new day to do 10 good things. More importantly I have gained more insight into what I and others in this country maybe take for granted. What I mean by the last part is that I live in the United States of America, a place where democracy and freedom have always been a part of my life. Health care has always been a given for me and having the knowledge that even if I didn't have the money I would still receive treatment.
     When I was first diagnosed 2 years ago, my family and I debated the issue of the cost of my life - as if there really is an issue with that. Anyway, this week a very dear friend of mine from Russia whose mom is still there talked to me. Her mom is struggling for what I have taken as basic ER care. She had a very damaging hear attack and there was no gasoline in the ambulance to take her to the hospital. Once she got there (I'm not sure how), there were no drugs to give her for several days. Heparin took 2 days to get and another 2 days to obtain IV nitro for her. My friend (who is a licensed MD) must attempt to buy an angiogram on the black market for her mama. While many of the cardiologist and surgeons there have the ability to perform an angioplasty for her, there is no money to buy the needed machines and drugs to do so.
     I calmed my nerves by sending many of my unused drugs with my friend when she went to her mom and filled as many of my prescriptions as I could for her. Thank the Lord above for my kind doctor who knows and cares about my friend and her mom. Something as simple as aspirin is a much needed item there. We sent nonperishable food because they are only fed twice a day in the hospital there and the food is hardly a cardiac diet.
     Many people walked in memory of someone they lost today, but I walked for those who still live. I walked slowly and last because I still can! Because maybe my friend's mom will never get her life-saving surgery, because she suffered a very painful heart attack without the benefit of pain killers that I had when I had mine. I walked because this week even though the government refused to pay for some of my prescriptions, they will pay for others. I walked because I am blessed. Peace and prayers to all of you, Sammy. SammyL@home.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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