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

Jacky 9-2     when are you too old for transplant?
 
Jon's 9-2 reply to Jacky's 9-2     too old for heart transplant?
 
Rick's 9-2 reply to Margaret D's 8-31     update, Disability experience
 
Karen D's 9-2 reply to Jon's 8-29     Bill Drummond was a huge help!
 
Kathy 9-3     need help with sodium restriction
 
Samantha B 9-3     Vo2max scores question
 
Jon's 9-3 reply to Samantha B's 9-3     Vo2max score ranges
 
Derald 9-3     is this edema? am I a hypochondriac?
 
Jon's 9-3 reply to Derald's 9-3     edema
 
Staci H 9-3     you NEED a CHF specialist
 
Derald's 9-3 reply to Jon's 9-3     edema possibility
 
Jon's 9-3 reply to Derald's 9-3     I thought,...
 
Tracey C 9-3     Vo2 test changes, update, ketchup warning
 
Myrtle C 9-4     types of doctors, EF iffy & more
 
Jon's 9-4 reply to Myrtle C's 9-4     types of doctors, EF & more
 
Jon 9-4     an online heart failure survey, if you're interested
 
George S' 9-5 reply to Kathy's 9-3     sodium intake
 
Jon's 9-5 reply to George S' 9-5     sodium intake
 
Rita S 9-5     problems after pacer implant
 
Jon's 9-5 reply to Rita S' 9-5     dealing with problems
 
Michael Starkey 9-5     EF & activity, and doctor questions
 
Jon's 9-5 reply to Michael Starkey's 9-5     EF & activity, doctor qualifications
 
Barbara 9-5     lung infection, fast heart rate - questions
 
Jon's 9-5 reply to Barbara's 9-5     fast heart rate, steroids
 
Jacky 9-5     those are great zip files
 
Paul Davis 9-5     can you predict bad days?
 
Tom S' 9-5 reply to Paul Davis' 9-5     good days and bad days
 
Kathy's 9-5 reply to George S' 9-5     clarifying my post
 
Wayne's 9-5 reply to Jon's 9-5     questions about Coreg target doses
 
Jon's 9-5 reply to Wayne's 9-5     Coreg target doses and more
 
Joe S' 9-6 reply to George S' 9-5     diet changes, update & more
 
Michael Starkey's 9-6 reply to Jon's 9-5     thanks, docs & more
 
Sheryl 9-6     how I raised Coreg dose, noodles, diet
 
Joseph P 9-6     the way my CHF clinic checks for edema & more
 
George S' 9-6 reply to Jon's 9-5     typo on sodium limit
 
George S' 9-6 reply to Kathy's 9-5     sodium in ramen noodles clarification
 
Jon 9-6     mailing list reminder
 
Natalie R's 9-6 reply to Joe S' 9-6     congratulations
 
Kathy 9-6     is that virus still waiting to get me?
 
Jon's 9-6 reply to Kathy's 9-6     not sure, but,...
 
Tom S 9-7     viruses
 
Sherrell G 9-7     after heart transplant, doing great!
 
Rita S 9-7     thanks, edema, low blood pressure
 
Rita S' 9-7 reply to Jon's 9-5     questions
 
Jon's 9-7 reply to Rita S' 9-7     possibilities
 
Pat L 9-7     is Coreg hard to get anywhere else?
 
Kathy 9-7     blood pressure monitor question
 
Dee 9-7     BNP test question
 
Jon's 9-7 reply to Dee's 9-7     BNP test info
 
Jon 9-9     BNP test info & more
 
Maria 9-9     seek gout experiences
 
Jon's 9-9 reply to Maria's 9-9     gout meds
 
George S' 9-9 reply to Kathy's 9-7     tracking blood pressure & more
 
Staci H 9-9     back from our trip
 
Deanna 9-9     chronic cough relief questions
 
Derald's 9-9 reply to Deanna's 9-9     chronic cough & more
 
Ian 9-9     questions about supplements
 
Rita S' 9-9 reply to Deanna's 9-9     cough, meds, docs, sleeping
 
Staci H's 9-9 reply to Sherrell G's 9-7     & to all who feel worse than they think they should
 
Norma's 9-9 reply to Ian's 9-9     supplements experience
 
Jack D's 9-10 reply to Ian's 9-9     herbs are drugs & more
 
Kathy H 9-10     had an "episode" - questions
 
Jon's 9-10 reply to Kathy H's 9-10     definitions, sort of
 
Don Hudson 9-10     heart pumps to rest the heart - questions
 
Jon's 9-10 reply to Don Hudson's 9-10     heart pumps to rest the heart
 
Elaine WB's 9-10 reply to Pat L's 9-7     what to do about drug prices?!
 
Jon's 9-10 reply to Elaine WB's 9-10     what to do about drug prices - a rant
 
Tom S' 9-10 reply to Staci H's 9-9     he can't be serious
 
Rita S' 9-10 reply to Jon's 9-5     sleepiness, edema, doctors - questions
 
Jon's 9-10 reply to Rita S' 9-10     sleepiness, doctors & more
 
Janet TB 9-10     update, uneasiness about getting echo question
 
Jon's 9-10 reply to Janet TB's 9-10     getting echo
 
Derald G 9-10     page updates, 6-minute walk questions
 
Jon's 9-10 reply to Derald G's 9-10     6-minute walk test
 
Derald G's 9-10 reply to Staci H's 9-9     EF versus activity level & more
 
Giorgio 9-10     supplement questions
 
Rita S' 9-10 reply to Jon's 9-10     something is causing low blood pressure
 
Derald G 9-10     incorporation questions
 
Jon's 9-10 reply to Derald G's 9-10     incorporation and tax exemption status
 
Elaine WB's 9-10 reply to Jon's 9-10     fixing the health care system
 
Wayne 9-10     beta-blocker benefit question
 
Amelia 9-11     EPS and pacemaker question
 
Ginger 9-11     beta-blocker and slow heart rate question
 
Gracie 9-11     change of location seemed to help me
 
Pat L 9-11     saving money on Rx drugs
 
Tom S 9-11     medical system is almost nothing but greed
 
Karen R's 9-11 reply to Jon's 9-10     common experiences make this site good
 
Tracey C 9-11     low sodium cheese option
 
David B Wilson's 9-11 reply to Maria's 9-9     gout & allopurinol experience
 
Tom S' 9-11 reply to Jon's 9-10     Ralph's and the medical profession
 
Jon's 9-11 reply to Tom S' 9-11     it gets complicated fast
 
Ben B's 9-11 reply to Tom S' 9-11     what are these things and services worth?
 
Richard M's 9-11 reply to Ginger's 9-11     bradycardia, pacing, and beta-blockers
 
Kathy 9-11     what is potassium deficiency like?
 
Sue Ellen 9-11     intro, like this site
 
Derald G's 9-11 reply to Ginger's 9-11     bradycardia, pacing, and beta-blockers
 
Joseph P's 9-11 reply to Amelia's 9-7     ICDs, pacemakers, and EP study experiences
 
Ann 9-11     online pharmacy may be way to go
 
Lee R 9-11     good charity cause available
 
Ruthie A 9-12     diabetics read this!
 
Roseanne S 9-12     fluid in peritoneum, hospice care
 
Tom S' 9-12 reply to Ben B's 9-11     the medical profession
 
Jon's 9-12 reply to Tom S' 9-12     the medical profession
 
Sheryl's 9-12 reply to Gracie's 9-11     Oklahoma is good for ya!
 
Chuck H 9-12     Coreg side effect - skin problems?
 
Jack D 9-12     the wait just got worse!
 
Myrtle 9-12     prescription drug cost relief not likely
 
Myrtle's 9-12 reply to Jon's 9-12     doctors attitudes
 
Jon's 9-12 reply to Myrtle's 9-12     doctors attitudes
 
Mel G's 9-12 reply to Giorgio's 9-10     fish oil, CoQ10 & more
 
Stan 9-12     intro, I've been very lucky & more
 
Jim's 9-12 reply to Jon's 9-12     the healthcare industry
 
Ben B's 9-12 reply to Tom S' 9-12     love some sparring now and then
 
Jacky 9-13     do I need a beta-blocker?
 
Jon's 9-13 reply to Jacky's 9-13     a good place to start
 
George S 9-13     maybe another board would help
 
Jon's 9-13 reply to George S' 9-13     I think it's okay
 
Linda Z 9-13     a doctor's perspective
 
Jon 9-13     Coreg supply
 
Jon 9-13     health care info Urls
 
Clara 9-14     seek Diovan/valsartan experiences
 
Dorothy Powell's 9-14 reply to Jon's 9-11     one-time Coreg shortage
 
Herbert L's 9-14 reply to Myrtle's 9-12     Tricare
 
Katherine's 9-14 reply to Linda Z's 9-13     doctors
 
Jon 9-14     BNP test page and test
 
Rita S 9-14     regarding Tri-Care
 
Karen K's 9-14 reply to Herbert L's 9-14     government employees' retirement
 
Derald G's 9-14 reply to Clara's 9-14     drug therapy for CHF
 
Ruthie A's 9-14 reply to Clara's 9-14     positive Diovan experience
 


Jacky, September 2, 2002 - Hi, Just read the newsletter (mailing) about requirements for transplants, but no mention is made of age. Is there an age when a transplant is no longer considered? Jackymwb@aol.com


Jon's September 2 reply to Jacky's September 2, 2002 - Hi Jacky, There is a study on this in previous mailings, available in zip files at www.chfpatients.com/text_gate.htm at the bottom of that page. The specific article is entitled, "age_and_transplant_survival.txt" Usually, age 70 is the oldest permissable although some centers still use age 65 as the cut-off point. Jon.


Rick's September 2 reply to Margaret D's August 31, 2002 - Hi, I put in for my railroad disability August 1st and they said I should know something by the first of the year. I have CHF with an EF of 30%, diabetes, spinal stenosis, and 3 herniated discs. My cardio doc signed one paper that said, "He can do no type of work at all" and is at risk of "sudden cardic death." On the bright side, my EF was 10% in December of 2000, I just hope it keeps going up. Thanks. rnbjaxs@aol.com


Karen D's September 2 reply to Jon's August 29, 2002 - Hi Jon, As you know, we haven't been posting here much in the last year or so because my Bill has improved, and I believe that it's in large part due to Bill Drummond, who cared enough to look us up in the phone book and call because he wanted to encourage us to talk to Bill's doctors about Coreg, which he wasn't taking at the time.
     At that time, my Bill had been given only 6 months to live without a transplant and we were just beginning to learn about CHF, and had just found Jon's Place. He was a good friend to all of us, and will be sorely missed. Please let Rosie know how much he was loved, Karen. bdeit@cfl.rr.com


Kathy, September 3, 2002 - Hi, I never was one to use much added salt, but I am having a heck of a time managing my sodium intake. I don't eat convenient foods, etc, but it seems like the sodium content on everything is high. Can anyone tell me what the sodium content of ramen noodles is without the seasoning packet? I used to eat them a lot, but always found the seasoning packet too salty anyway and never used even a half packet.
     Also, I tend to never eat what is considered a whole serving. How do I figure out how much I'm actually taking in? All the broth goes down the sink, I never eat gravies. kathyh@linkny.com


Samantha B, September 3, 2002 - Hi, I had a question about Vo2max. I have been unable to find statistics that show the Vo2max of a healthy heart. I am 31 years old, and have had IDCM for 6 years. I am on all of the usual meds and fortunately, I have felt fabulous for the last 6 years. I have an EF in the 25 to 30% range.
     When I get the stress test, my score is between 32 and 40, but I have no idea what those numbers really mean, since I don't have a point of reference. My doctors tell me that functionally I am doing great, but I feel like I need a few more numbers to analyze. Can anyone help? samantha.buechele@motorola.com


Jon's September 3 reply to Samantha B's September 3, 2002 - Hi Samantha, There is a lot of disagreement even between respiratory therapists and pulmonologists on what the "normal" range of Vo2max scores is and they change dramatically with sex, age, physical fitness, and illness. I added a chart to my Vo2max test page but these are only rough approximations. What it boils down to is that your Vo2max score is literally twice as good as mine so just be happy and forget the numbers. ;-) Jon.


Derald, September 3, 2002 - Hi all, I think I've had my first brush with edema but I don't know for sure. I've been a bad boy and haven't been weighing myself regularly because nothing has ever happened. Anyway, my EF two months ago came back 50 to 55%. I was at the doctor's office last week and they weighed me in at 219, which surprised me because I usually swing between 205 and 215. The last few days I've felt a little dizzy and light-headed and I was feeling really bloated in my gut so I stepped on the scales yesterday morning and I was 225.
     I then became concerned, but not distressed. I've read how a lot of you handle this and I knew it was manageable and maybe inevitable. I figured I needed to go on diuretics for awhile so I went into "Urgent Care" yesterday. I explained my health condition and he listened to my lungs and said they sounded clear, and shuffled me off to get a lung x-ray.
     Afterwards he looked at me like I was a nut for coming in because there was no fluid in my lungs but I could have told him that. It felt like it was in my abdomen and a little in my wrists, but nowhere as dramatic as the pictures Jon's posted on the edema page. However, the skin was puffed up around my watch band - you could press the skin and it would turn white for a few seconds.
     Also I told him I was starting to feel a little angina again (like a dull ache) and that maybe I was losing some EF. Since my last echo was the beginning of July he said he really doubted I could lose EF that fast, but if I can go from 40 to 50 in three months why couldn't I go from 50 to 40 in two months?
     This morning my weight dropped to 218 and I can fit my finger between my wrist and watchband but I still feel bloated. To be on the safe side, this morning I left a voice mail with my local cardiologist to see if he had any concerns. I just now read Dr. Silver's comment that lungs can be clear and a person can be in severe heart failure. What do you guys think, beginning edema or I'm a hypochondriac? derald@earthlink.net


Jon's September 3 reply to Derald's September 3, 2002 - Hi Derald, Sounds like edema to me. I swell in my face, then my hands and stomach, almost always with clear lungs and almost never in my feet and ankles. Even heart failure specialists are just now beginning to accept that many patients get this, so emergency medicine docs and PCPs are almost certainly going to take much longer to "get it." See Dr. Robert Bourge's admonition to his fellow cardiologists here (let it load). Morning weighings are the best way to nip edema in the bud.
     EF can vary from hour to hour and from day to day, so it can certainly change from week to week and month to month. My most drastic ever drop in EF occured in only a few days apparently, and was bad enough to have my CHF doc suggesting transplant. These are all reasons why having a heart failure specialist is so important - not a PCP, internist, or even general cardiologist; which leads to the next post. Jon.


Staci H, September 3, 2002 - Hi Everyone, I haven't been around for awhile but wanted to share my story with you all. I am hoping that it will help you all to understand the importance of being treated by a CHF specialist. I was diagnosed with IDCM and CHF in July of 1998, after being sick for almost 2 years. My regular doctor kept telling me that I had bronchitis. I'm tellin ya, I had the longest running case of bronchitis in the history of the world!
     After finally being sent to a heart center, I started seeing an interventional cardiologist. I lived in Oklahoma City at the time. He put me on Demadex, Aldactone (spironolactone), Prinivil and digoxin (Lanoxin). He did not put me on Coreg because I was diagnosed with asthma during this time by a methcholine challenge. My condition stabilized and I was doing pretty well with an EF of 45%.
     We moved to the Orlando area of Florida in May of 2000. My regular doctor here recommended a cardiologist at a well known heart center in Orlando, another interventional cardiologist. Well, he looked at all my records, did an EKG, had an echo, and he sent me home with a heart monitor for 48 hours. The next thing I know, he's added a calcium channel blocker to my meds (Verapamil).
     Things went well for about another 4 months and then all of a sudden I'm being hospitalized for CHF. I was hospitalized several times within a year's period. The cardio never once saw me in the hospital. During a hiatus from Club Med, I came back to Jon's Place and found info on calcium channel blockers, and also read again about the importance of seeing a CHF specialist. Well, I found a specialist at the Cleveland Clinic in Florida, down in Fort Lauderdale. He took blood work and sent me for an echo right away. Wow, my EF was down to 30%, my left ventricle and left atrium were enlarged again, and I had severe fluid overload. On top of that, the whole front part of my heart was barely contracting. My former cardiologist had told me there was no change in my condition.
     My new doctor asked me what I wanted and listened to how I felt! He also added Coreg to my regimen despite the asthma. He said that under very close supervision, and titrating up very slowly, that I might be able to tolerate it. It's either that or my condition will keep deteriorating, so I agreed to give it a try. He put me on fluid restrictions (I had no fluid restrictions before this) and he has recommended a sodium restriction of only one to 1.5 grams a day. I can only have one to 1.5 liters of fluid a day, depending on how I'm retaining fluid that particular day. I'm having blood work done every 3 to 4 weeks. I only had it done once every 6 months before. He listens to me, and has even given me a cell phone number where I can reach him any time I have a question or a problem.
     After 6 months, my EF has gone up to 40%, my left ventricle and left atrium are still slightly enlarged but not as much as they were, and best of all I now have hope, something I had lost. I thank God for you Jon, and the information and support that you have provided here. You have played a part in saving my life. I pray that everyone here will see the importance of seeing a CHF specialist to get the best possible care. I pray that no one else will ever have to go through what I did.
     For others who live in Florida, the Cleveland Clinic I go to is in a little town just outside Fort Lauderdale called Weston. From what I understand, there is also a Cleveland Clinic Florida in Naples, which is on the south gulf coast. I believe it is an outpatient facility. If any of you have specific questions, please feel free to e-mail me. I will try to help the best I can. It is good to be back with old friends, and nice to meet new ones. God bless. SunnyFLA6@aol.com


Derald's September 3 reply to Jon's September 3, 2002 - Hi Jon, I've got a theory. On your edema page you said most people get it in the ankles and legs first, but I'm a programmer and I'm always in a chair. I even sleep in a lounge chair. You're on the computer a lot too. Maybe good old gravity causes fluid to settle in the abdomens of people who sit a lot? deraldg@earthlink.net


Jon's September 3 reply to Derald's September 3, 2002 - Hi Derald, I never even thought about it. I just sort of figured most CHFers who can't work sat most of the time. ;-) Jon.


Tracey C, September 3, 2002 - Hi everyone, I had my first Vo2 test and scored a 32, which the doctor seemed very happy about. He cleared me for unrestricted exercise and actually told me to start pushing it a bit by doing hills on my bike, etc. I had been practicing breathing only through my mouth when exercising as preparation for the test. When the test started they put what looked like an oxygen mask over my nose and mouth, but nothing in my mouth. I could breathe through my nose the entire time. I asked about that and they said they found they get the same results without the discomfort of breathing only through your mouth. So hopefully the trend will follow for you all.
     Also, I've been using Heinz' no salt added catsup and noticed new packaging on it the other day. They've now added potassium chloride for flavor. It now tastes just like salty catsup, but for those of you who need to watch the potassium levels, be careful. Take care, Tracey. 2tcollins@cox.net


Myrtle C, September 4, 2002 - Hi, After seeing my cardiologist Dr. R., I found out that he is an internist. Many doctors seem to be masquerading as something other then what they are. Even the CHF specialist I thought I'd found is an interventionist doctor. When this Dr. R. first saw me in April he told me my records showed that the sonogram of January was showing a lot of problems with my heart function. I had a cath, showed 35% EF. Why give an EF if it can change so quickly? I took in some questions about various tests, and he did a peptide test which showed 25 pg/mL.
     Now after being on Coreg, Lasix, and Diovan, which I couldn't tolerate, I got another echo. The doctor now "estimates" that my EF is 45%. He also says I am doing okay, and that the low peptide shows no problems. Even though my symptoms show me to be in class 3 or even class 4. I am so tired of being weak, coughing, brain dysfunctional, having edema, etc. It is hard not to just give up. Thank you for your help. omie@axs4u.net


Jon's September 4 reply to Myrtle C's September 4, 2002 - Hi Myrtle, Doctor's education can be confusing, as well as their practice choices. After all, a cardiologist is an internist, since he has to become one before he can become a cardiologist. He does pre-med, then med school, gets his MD and does his residency in a hospital, then specializes as an internist with further requirements, then goes into a subspeciality called cardiology, with yet more requirements. It takes a long time to become a cardiologist ;-) Add to that the fact that some doctors decide they can call themselves a specialist when they only dabble, and it gets confusing to everyone, not just patients. I tried to go through this here (let it load) and will address it further in a month or two, when another new chunk of web site goes online. <g>
     I did try to explain why EF is important even though it varies and is not an all-powerful indicator of our health, but it can be hard to grasp, especially when you feel rotten. I always have more trouble understanding new things (and explaining them) when I feel my worst, and you sound pretty miserable.
     Anyway, try reading this section of the EF page (let it load) and see if it helps. In a nutshell, it's the trend of EF measurements that are important rather than any one reading. If you had an echo every 6 months and the readings kept going down each time, that trend is very important. Echo accuracy can vary by as much as +/- 8%. If your reading went up and down by that much but stayed "centered" around a certain number, you're just seeing the margin of error in the test rather than a definite change in EF. That +/- 8% adds up to a possible 16% range without real significance and that's another reason why echo EF measurements are not the cat's meow, so to speak.
     I also tried to explain, maybe poorly, on my echo page that it takes an experienced and skilled cardiologist to read echos accurately. It's more an art than a science still. So when a doc says he "estimates" an EF from an echo, he is serious and accurate. It seems odd but medicine has never been a science, only an art and not every artist has great talent. ;-)
     I sure hope you get to feeling better! Jon.


Jon, September 4, 2002 - Hi everyone, Another reminder about the heart failure survey being taken at http://helpafriend.com/heartsurvey/. You may get a free book out of it. Jon.


George S' September 5 reply to Kathy's September 3, 2002 - Hi Kathy, Regarding your question on sodium content of Ramen noodles. Per my li'l book (T-Factor Fat Gram Counter), those puppies have 978mg of sodium per cup.
     Unfortunately it isn't "playing fair" or accurately counting to reduce the sodium count because you pour the juice down the drain. As for how to figure how much you eat of a food, I simply put it on a food scale or into a measuring cup. That totally eliminates hopeful guessing. On this point, I was literally shocked at how far off my eyeball estimates were that I previously used.
     Staying within your sodium targets is much easier when you avoid processed foods. Those are the ones that are pre-packaged on the shelves of the grocery store. For example, I can make a delicious soup for less than a tenth of the sodium in a can of Cambell's soup, and hey, I'm no Julia Child in the kitchen.
     Using this combined approach of accurate measurement and avoiding pre-packaged foods, I have easily kept my daily sodium at an average of 950mg over the past 4 months even though my doc set my limit at 2,500mg per day. georgeselin@myppi.biz


Jon's September 5 reply to George's September 5, 2002 - Hi George, Great post. You obviously have your diet under control. :-) However, you need to talk to your doc. The recommended daily sodium intake for healthy people is only 2,400 mg daily, so you have to wonder about that 2,500mg daily suggestion to a CHFer. Just a thought. Here's my info to head off everyone's questions. <g>

Please everyone, remember that over-the-counter medications and some prescription meds may contain high amounts of sodium. Be sure to add it into your daily intake! Jon.


Rita S, September 5, 2002 - Hi, This is my first post. I'm having some trouble and wondering if anyone could help. I just want to sleep all the time. For 2 weeks now I've been sleeping about 15 out of 24 hours. I am retaining fluids even though I doubled my diuretic (as the nurse advised). I think my Lasix has quit working right. I don't have edema I guess, because I can't leave a thumb print, but my ankles, hands, stomach and calves are swollen. They took a BMP (basic metabolic panel) test for electrolytes today and said everything is normal.
     I am age 63 and have had CHF for 9 years now. In 1995 my EF was at its lowest at 10 to 20%. The last echo I had was in 1999 and the EF was 20 to 30%. I am on 40mg Lotensin, 0.25mg digoxin, 40mg furosemide (Lasix), Coumadin, and 25mg atenolol. I am not on Coreg because my doctor says I couldn't tolerate it. I think I could have tolerated about 6mg, but couldn't take 12.5mg. I see a regular cardiologist.
     After reading all Jon's literature about meds, I think I have been treated properly through the years but I don't think I have been tested enough. In the 9 years I've been seeing him, I've only had 4 echocardiograms. He has never given me a stress test of any kind. I have had only one Vo2max test and one MUGA in 1997. Both were done when I was referred for transplant evaluation.
     I have never been hospitalized for fluid retention. I have never been told to restrict fluids until now. That is really hard because I get so thirsty. Also, I just had a bi-ventricular pacemaker implanted on July 3 and it has just been since then that I've had trouble. I haven't felt well since. I didn't become so out of breath before as I do now. The pacemaker specialist made some adjustments 2 weeks ago which were supposed to make me feel better in a week, but I feel worse. The pacemaker has not done any good for me yet. I would welcome anyone's advice. Thanks. RDeanStokes@aol.com


Jon's September 5 reply to Rita S' September 5, 2002 - Hi Rita, Here's my 2¢ worth. This assumes you are strictly following a low sodium diet already. If I were in your shoes as I understand them, here is what I would do: I would insist on an echo right away (like yesterday) to at least measure my ejection fraction and look for heart enlargement. Then I would raise the roof with my pacemaker doc to be sure he is not playing that we'll-get-it-right-eventually doctor game I see too often. I would also drop my sodium intake to the very low range, maybe no more than 1000mg daily, at least for awhile.
     Keep in mind that if you were "heavily" sedated for the implant procedure, that may cause you problems. Sedation and anesthesia can both really slow down our heart function, sometimes for weeks or more.
     You can have some real nasty edema and still not leave lasting impressions by pressing into your flesh. Fluid can build up everywhere, including your liver and even in the spaces between cells.
     Talk to your doctors and don't let them adopt a wait-and-see attitude. You feel "consistently" worse, therefore you require evaluation and possibly further treatment - that's obvious - so why don't your doctors get to it? Remember that you are the boss when it comes to your care - not your doctor. He is a well-paid junior partner, not the boss. You are the senior partner, so you have the power should you decide to exercise it. Make them answer your questions in plain English, and soon - it's what they get the big bucks for, after all. ;-) They may have answers that justify waiting-to-see but then again, they may not. Jon.


Micheal Starkey, September 5, 2002 - Hello all, Thanks for this great site. I have a couple of questions. I read that other things besides EF affect how you feel. I just had an echo and the results were the same as a year ago, 20%. The thing is that I have better endurance than when I was in my mid to late 20s. I am now 54, and I go to the gym 4 and 5 times a week. A year ago I could barely walk to the bathroom, let alone walk one to 2 miles a day at a fast pace. My question is can the echo still be the same? The same cardiac specialist read it each time.
     My next question: The heart clinic where I go has one doc listed as a cardiac specialist in the section on this site. My doctor is not listed, however he has the same initials behind his name - FACC. I have been told that he is a cardiac specialist but how does one know for sure? I have no complaints about him but then again I never had CHF before so I am a little concerned. I seem to be on the required meds. He does not think I should be titrated up to 25mg of Coreg twice a day. I currently take 12.5mg. I could not tolerate the higher dose 9 months ago. Any thoughts? kamikaze99@charter.net


Jon's September 5 reply to Micheal Starkey's September 5, 2002 - Hi Michael, Your EF could be the same if your fitness level has gone up but I would get a second opinion to be sure no one is misreading or missing anything.
     FACC and such initials are explained at the bottom of the doctor list page. There is no official medical school course for "heart failure specialty" and this confuses a lot of health care professionals and patients. If a cardiologist treats mostly CHFers (half or more of his patients) I would call him a CHF specialist - he has the experience and has been exposed to enough various patient experiences/problems peculiar to CHFers that he has gained a much wider grasp of heart failure "realities" than a general cardiologist who only treats a few CHFers. Obviously that does not automatically make him a good CHF doc, but he's ahead of the game, at least.
     I hope this helps. Keep in mind that many hospitals and some large cardiology practices now maintain an actual "heart failure clinic" that goes by that name, and that is where you are most likely to find experienced heart failure specialists.
     I can only list the doctors who submit listings to me, so there may be other heart failure specialists at the same clinic but if they did not add their names to my list, they won't be found there. ;-) Jon.


Barbara, September 5, 2002 - Hi, I have been diagnosed with CHF as of 3 weeks ago, and put on meds to clear up a lung infection. Nothing is working now. I have been put on prednnisone 4 times a day. I can't sleep and my heart is beating very fast. Has anyone had this experience? The pulmonary doc says I got this from the environment? My cardiologist says prednisone taken for short periods will not hurt the heart. Thank you for any info you can tell me. God bless and be well, Barbara. Happyelosie@aol.com


Jon's September 5 reply to Barbara's September 5, 2002 - Hi Barbara, Your heart doctor may be right but I am always uncomfortable with the thought of a CHFer taking prednisone. It encourages fluid retention, at the least. The fast heart rate is the most worrying, though. Have you talked to your heart doctor about that? This is never good in a CHFer. It wears out the heart and may indicate that meds changes are needed, maybe only until the infection clears up, maybe longer. Please call your cardiologist and ask questions until you are satisfied. Jon.


Jacky, September 5, 2002 - Hi Jon, Those are great info zip files you posted the link for the other day. Have they always been there? Did I just miss them? Jackymwb@aol.com
 
Jon's note: Been at the bottom of that page all along  ;-)


Paul Davis, September 5, 2002 - Hi folks, I was diagnosed with CHF in the spring, so I'm still adjusting to my new life. Thankfully, I seem to be in pretty good shape with a little Lasix, Coreg, and Avapro. However, I still have "good" days and "bad" days in terms of fatigue and capacity to function. Yesterday was one of the bad ones. I could barely get out of bed and I slept almost all day.
     Do you folks with more experience find that it gets easier to predict when you'll feel bad, or is it always going to seem random? Is it a matter of learning your new limits? I went for a longer walk on Monday; maybe I overdid it although it felt good at the time.
     Right now, the hardest part for me emotionally is feeling like I can't predict how I will feel tomorrow. Does that ever go away? therealpauld@netscape.net


Tom S' September 5 reply to Paul Davis' September 5, 2002 - Hi Paul, Yes, yes, yes, and yes. Generally, an active day is followed with a "down day" for me, and now there seems to be the "ozone factor" in the mix with code orange and code red days being my worst. I have over 6 years experience to back me up, so don't feel alone on this one. It seems to be a huge Catch 22 that doctors want you to exercise but if you do you feel like walking death. Go figure. bigheart@muchomail.com


Kathy's September 5 reply to George S' September 5, 2002 - Hi George, I think you may have misunderstood my question. I do not use the seasoning packet in ramen noodles at all, I throw it out unopened. I don't make the broth. I'm wondering about the nutrition content of the noodles themselves, since I prefer them to spaghetti. My comment about broth was in reference to other things like canned veggies, especially tomatoes, which are fairly high in sodium even without salt. Thanks. kathyh@linkny.com


Wayne's September 5 reply to Jon's September 5, 2002 - Hi Jon, I have the same question as Micheal. My doctor backed me down from 25mg BID Coreg to 12.5mg after being on the higher dose for about a week and having blood pressure that was too low. However, now my blood pressure is back up to the 120/70 range and I asked him if I could try to increase the Coreg to 15.5mg BID and he said no on 2 occasions.
     Everything I read says that I should take the highest dose I can tolerate to achieve the best outcome. On a different note, I'm scheduled to take a Vo2max test next week and am concerned about being able to do so. If it is as rigorous as your description sounds, I'm afraid that I either won't be able to perform well enough to get an accurate result or I'll be harmed by the effort. Any advice or comment would be appreciated by you or anyone else who has experience. Thanks a bunch. whreos@earthlink.net


Jon's September 5 reply to Wayne's September 5, 2002 - Hi Wayne, This may take me awhile in my typical rambling fashion. Target dose is important for maximum benefit. However, that does not mean you get no benefit at lower doses. Some drugs give great benefit at lower doses while with other drugs, you get benefit but the lower the dose, the lower the benefit.
     Trials are not designed to dose range two drugs simultaneously. That's because trials are too expensive to run another whole phase 3 trial for this purpose alone and obviously also because the drug maker makes more money if it sells more drug.
     As far as I can tell, there is more proven survival benefit with Coreg at 25mg twice a day than at 12.5mg twice a day. The clinical benefits of pushing ACE inhibitors to maximum doses is not as powerful. Therefore, if you don't have enough blood pressure to reach target doses of both drugs, it is wiser to back off on the ACE inhibitor if that let's you get from 12.5mg to 25mg BID of Coreg.
     This also presupposes that you are more interested in survival than QOL. In my opinion, ACE inhibitors do more for QOL because they have much less adverse effects for most people who can take them. In other words, pick your poison. <g>
     I wonder why your doctor has not suggested a possible switch to Toprol-XL, which has less effect on blood pressure. It is not an alpha-blocker (Coreg is) so it does not dilate blood vessels as much, thus does not lower blood pressure as much as Coreg. You might ask him about it.
     It seems to me that many doctors (although not many CHF specialists) are backing away from target doses of Coreg, probably due to patient complaints about side effects. However, if a patient wants to try a higher dose, the doctor should have a very good reason for saying no since the patient is the senior partner in his own care. The doctor is a well-paid junior partner, although some prefer to think of themselves as the final word and the patient's boss. I don't go to such doctors. ;-) Jon.


Joe S' September 6 reply to George S' September 5, 2002 - Man, George, Like Jon says, you have it together. I have discovered over the decades of this stupid CHF, to give up on all processed foods. Years ago I went to a top of the line food store and talked with the butcher. He took me over to the spice rack and showed me all the spices I could use. I can now make sausage that tastes better then Jimmy Dean's, a mean omelette without any sodium, etc. If one really tries, anything can be done. Praise God for Ezekiel 4:9 bread.
     I wrote to everyone about my edema a little while ago. I can't believe all the places I am losing fluids since my aortic valve was replaced. I sure didn't know my fingers retained fluids, but they are sure getting thinner. If I could reach my toes, I would examine them too. As I said before, I now know there are things like ankle bones. Hey people, my 6-month anniversary with my cow valve is tomorrow. Joe S. jes@gbis.com
 
Jon's note: Mooooo! ;-)


Michael Starkey's September 6 reply to Jon's September 5, 2002 - Hi, Thanks Jon. I think my cardiologist is a heart failure specialist since he treats mostly CHFers and he has written papers on the effects of amiodorone. I am going to ask again why I can't again try higher doses of Coreg. I don't talk to him when I call, just the nurses, who give me his answer. All you folks out there, keep up with the posts. Although I don't post often, I read here real frequently. kamikaze99@charter.net


Sheryl, September 6, 2002 - Hi, I tried 3 times to increase my Coreg dose and was unable to do it. Recently I increased my night time dosage and have been tolerating it so far. I also started taking my ACE inhibitor in the middle of the day. I want it all - QOL and target dose! :-)
     Why eat Ramen or any other kind of noodles? They are nutritionally deficient. It's better to eat some grain. Try your spaghetti on a piece of toasted whole grain toast. I like it better and it's better for me. Remember to watch the size of the carbohydrate servings no matter what they are, Sheryl. cvprehab@hotmail.com


Joseph P, September 6, 2002 - Hi, I am very lucky to have the people at St. Luke's CHF Center in St. Louis, Mo. Some of the quesions that I am always asked (I wear boots) is, are your ankles swelling, do you have any bloating around you abdomen. They also look at my face. They ask me about 20 questions every time I go to them, which is once a month. I can call any time of day or night and talk to someone if I have a problem. Thanks, Joe. joeandol@shawneelink.net


George S' September 6 reply to Jon's September 5, 2002 - Hi Jon, As usual, you have a sharp eye. My bad on the sodium limit imposed by my doc. I mistyped. The 2,500mg of sodium should have been 1,500mg. Sorry about the confusion and thanks for the correction. georgeselin@myppi.biz
 
Jon's note: being the King of Typos myself, it's cool <g>


George S' September 6 reply to Kathy's September 5, 2002 - Hi Kathy, Thanks for the clarifiction on the Ramen noodle sodium content versus the accompanying package. Unfortunately, the high number of sodium mg I quoted was without the additional seasoning package considered. The reason the sodium content is so high is because of what food manufacturers have to do (add preservatives) to pre-package the food content without losing the flavor and freshness. Best of luck. GeorgeSelin@myppi.biz


Jon, September 6, 2002 - Hi everyone, I have some more mailings about ready, so if you're not on the mailing list but want to receive heart-related info by e-mail, join up at www.chfpatients.com/lists.htm. Jon.


Natalie R's September 6 reply to Joe S' September 6, 2002 - Congratulations, Joe! I've lurked until I care about you/us all! mcnat45@yahoo.com


Kathy, September 6, 2002 - Hi, Yet another question. My doctor seems to think that the cause of my DCM is viral, but he hasn't explained as to whether they need to treat the virus. Does the virus stay in your system? kathyh@linkny.com


Jon's September 6 reply to Kathy's September 6, 2002 - Hi Kathy, It can be a virus that does damage or it can be that your body fought the virus and won, but in the process your own antibodies to that virus turned on your own tissue, damaging your heart. Usually, there is no need to try to locate a virus in your system because most viruses have no cure. I don't really know if there are exceptions to that or not. Jon.


Tom S, September 7, 2002 - Hi, Speaking of "virii" (is that really the plural of virus?), I found a dead Blue Jay near my porch and that is one of the indicators of the possible presence of the West Nile virus in my area. For some reason neither the local health department nor the state were itnerested in collecting the bird to check for the virus, which can be deadly.
     My CHF was attributed to a virus and possibly even to my exposure to tuburculosis early in my life (back in the 50s) with the most likely culprit being associated with a bad case of gingivitis (gum disease). Six of my 7 doctors, including one with a communicable disease shingle said it was most likely caused by a virus. The seventh who has a real "I am the doctor" attitude felt it was caused by something else, namely beer. Too bad doc, I don't drink.
     Anyway, it doesn't really matter at this point how we got here, it's just what postive things we can do to live with the problem now that it has arrived. bigheart@muchomail.com


Sherrell G, September 7, 2002 - Hi, I am now one month post-transplant and at home doing wonderfully. I am walking close to 2 miles in my exercise regime and getting stronger each day. I did get a virus from my donor heart for which I am being treated with IV anti-viral medicine for 3 weeks but it was expected. The docs were testing me for it weekly. It is great not to be short of breath, not to have any chest pains, and to have energy! sherrellgay@juno.com


Rita S, September 7, 2002 - Hi, and thanks Jon, for your advice. Thanks Derald, for your post about edema. I am learning. I guess I have been retaining fluid for a long time and didn't realize it. I just thought I was having a hard time losing weight from dieting. This is my first bout with edema too. I forgot to mention in my first post that my blood pressure was really low at 81/51, and apparently my kidneys weren't functioning well enough. I guess the beta-blocker (atenolol) brought my blood pressure down? RDeanStokes@aol.com


Rita S' September 7 reply to Jon's September 5, 2002 - Hi, I forgot in my last post these two questions concerning having an echo. Would that indicate why I am so sleepy? Do you think the statin drugs cause us to retain fluid? I'm on Pravachol now. It seems to me every time I take them, I retain fluid big time but my doctor says that is not a side effect of them. What do you think? Thanks, Rita. RDeanStokes@aol.com


Jon's September 7 reply to Rita S' September 7, 2002 - Hi, As far as my echo suggestion, those factors would indicate worsening heart failure, and fatigue is one of the most blatant and debilitating CHF symptoms. I don't know enough about your situation to be precise. I think your blood pressure is too low and that is certainly not helping anything. When my BP was too low to be read, I was exhausted constantly.
     It seems you are not taking Aldactone (spironolactone), which you might want to look into. Also, are your INR and electrolyte levels checked regularly? Other than that, I would guess - and it is only a guess - that you need to have that pacemaker doc make absolutely sure that your pacer is set properly for you.
     As far as I know, statin drugs do not make us retain fluid, although different people react differently to the same drug. Jon.


Pat L, September 7, 2002 - Hi Jon and everyone, I went to get my Coreg refilled yesterday and was told the pharmacy was out of it, and it was on long-term backup. Has anybody else experienced this? I went to the cardio doc's office and was gven a new script for Toprol-XL. I don't know if this is just this store's problem or what. I was very concerned since I have been on Coreg since May of 1997 when I entered one of their trials. I have in recent months also developed diabetes, and have sustained neuropathy of the feet as a result of high levels of glucose until I changed to another diet plan. This is low sodium, low carb, no sugar whatsoever. Pretty soon I will be down to a bowl of water 3 times a day! <lol> Pat L. patlat@yahoo.com


Kathy, September 7, 2002 - Hi again, I keep coming up with non-related questions. Would it be worth my while to get a home blood pressure monitor? Right now I'm stopping at the drug store once a week or so and it doesn't seem like enough. Of course if there was a change, what exactly should I do? kathyh@linkny.com


Dee, September 7, 2002 - Hi, My cardiologist has ordered a B-type naturetic peptide test. Does anyone have any information on this test? Any information is appreciated. Thanks, Dee. MysteryWriter8@msn.com


Jon's September 7 reply to Dee's September 7, 2002 - Hi, See this article, the posts archived about the BNP tests here, and this article. Jon.


Jon,s September 9, 2002 - Hi everyone, Sorry but I moved all my BNP blood test info to my tests section. You can get to it through this page. Also, I have to spend a good chunk of my afternoon away from the computer today so some posts may take a little longer to make it , but they'll make it. ;-) Jon.


Maria, September 9, 2002 - Hi, I was wondering if anyone has had any experience with gout. In the last 2 months my husband has had 2 kidney stones and now he has gout. He had a CAT scan that showed there were no more stones. His uric acid level was very high. He does take 40mg Lasix a day and I've read that the use of diuretics can cause gout.
     Are these signs of kidney trouble? The doctor said the gout is not related to his heart. I thought his condition was improving before this happened. The doctor recently reduced Kevin's Vasotec because his blood pressure has been so consistent he thought Kevin could do with less medication. His pressure is 118/70. Could this be changing his metabolism and the way his body processes the protein?
     Any feedback would be greatly apprieciated. Thank you for this site, Jon. I'm trying to get Kevin to use it, but he isn't ready too. Take care all, Maria. kmmcf@vineyard.net


Jon's September 9 reply to Maria's September 9, 2002 - Hi Maria, Don't forget The Archives search engine here. I have never had gout but know that diuretic use can indeed cause it. One common option is allopurinal, which may also be good for heart failure, as shown here and here. I hope people who have had gout respond so you get some first-hand experiences too.
     Hopefully, Kevin is having regular testing to track his kidney function, which is the quickest and best way to spot kidney trouble, or better yet, to prevent it. I don't think the ACE inhibitor dose change would bring on gout, but I wonder why the dose came down if Kevin has had CHF episodes. That is usually a bad idea and in CHFers, a stable blood pressure is no reason to make meds changes! Jon.


George S' September 9 reply to Kathy's September 7, 2002 - Hi Kathy, I think your question on a BP measuring device is very relevant, so much so that my CHF specialist here in the lovely hills of mid-Tennessee requires his patients to take several measurements one to 2 times a day and log them. These measurements include early morning weigh-in as well as logging of both blood pressure and heart rate (pulse) an hour after both morning and evening meds. He emphasizes "after" taking the meds so the measurements reflect the impact of the meds themselves.
     At first I found all this logging a major pain in the booty but with the help of a simple log sheet it literally takes less than a minute per day and gives both myself and the doc (he reviews them each visit) a quick view of any trends which can be indicators of developing CHF problems. By the way, the log sheet also has a space for "Comments" so you can note right then if something unique is happening (like change in meds, unusually fatigued, got new puppy).
     I have bought 2 BP monitors, the first at Walgreen's and the second at Wal-Mart - it was cheaper. No, the first one didn't break. My brother stole it to keep tabs on his hypertension. Walgreen's Model HD2000, Automatic Blood Pressure Monitor with Heart Sense, works for me. This particular model gives you both your BP and pulse in one check. georgeselin@myppi.biz


Staci H, September 9, 2002 - Hi Everyone, I have been on a trip with my hubby since Wednesday the 4th. We went to Asheville, North Carolina. What a beautiful place! We got to see the Biltmore Estate. Wow, wow, wow! I will answer all e-mails soon. I need to get some much needed rest. My best to all! SunnyFLA6@aol.com


Deanna, September 9, 2002 - Hi, I happened to stumble upon all of your letters. I am deeply saddened by all those who have been diagnosed with CHF and all those who love someone with CHF. My grandmother is 83 years old and suffers from CHF. I spend quite a bit of time with her and the other evening I spent the night with her.
     She has a chronic cough and some of the doctors that she has seen tell her that the cough has nothing to do with CHF. She was diagnosed with CHF about 20 years ago. I am confused since many articles that I have read state that a chronic cough is one of the symptoms. If anybody suffers the same symptoms, please share with me anything that gives you relief.
     My grandmother basically chokes through her entire night and sometimes days. My heart aches inside as I wish there was something to do for her so that she may have some relief. She was also told years later that she has emphysema. I realize that this may contribute to her cough. However, she already had the chronic cough before she was diagnosed with emphysema. I am looking for a little relief for my Grandma. If anybody has any information, please contact me. Thank you. dwhety@aol.com


Derald's September 9 reply to Deanna's September 9, 2002 - Hi Deana, What medications and dosage is she on? Do you know her ejection fraction? Is she also diabetic, etc,...? There's a lot you can do sometimes to help but it takes a very good doctor to make the right "soup." For instance, if she's on a ACE inhibitor, switching to an ARB might help her cough. deraldg@earthlilnk.net


Ian, September 9, 2002 - Hi all, I was diagnosed with DCM 6 weeks ago and I'm not finding the advice of the medical profession in England very helpful on what I should be taking. I've been prescribed ACE inhibitors and so far signs are good. My EF has gone up from 30% to 45% and I'm able to jog gently. I was taken off beta-blockers because my pulse is quite slow anyway and they were making me feel wiped out. I've been taking 100mg of CoQ10 daily and have also come across articles recommending extracts of Hawthorn (Crateagus) as well as taurine to strengthen the heart muscle. I don't know if I should be taking all of this together and if so, in what sort of doses. My consultant doesn't seem to recognise anything that isn't a mainstream drug. Does anyone have any views on this? Lleweli@aol.com


Rita S' September 9 reply to Deanna's September 9, 2002 - Hi Deanna, Yes, a cough is a sure sign of CHF. If there is water in the lungs, it will cause a cough. Also, ACE inhibitors can cause a cough. I was on hydralazine and it caused a cough. My mother was on another drug which did the same thing but I can't remember the name. You didn't mention your grandmother's medications. If you post again, please list them.
     Are the doctors she sees CHF specialists? Be sure she is being seen by a CHF specialist. I'm sure the cough can be helped. Also, she should be sleeping propped up at night. Good luck, Rita. RDeanStokes@aol.com


Staci H's September 9 reply to Sherrell G's September 7, 2002 - Hello Sherrell, I'm glad that you are doing so well. What a road you have been down! You give the rest of us hope. God bless you.
     I would like to comment to all of the people who are feeling badly, but their docs are telling them that they are doing fine. My CHF specialist told me that he has patients with EFs of 10 who are able to do just about anything that they want, like play tennis, and he has patients with EFs that are 50 who can barely do anything. He also said that he doesn't know why that is, but it is very real. He tries to make his patients as comfortable as possible and will run any and every test that he thinks may help. If I tell him I'm not feeling good despite everything he's done, he will come up with something else to help.
     Doctors are providing a service for us and we pay them. You need to be satisfied with the service that you are getting or go somewhere else! Please, this disease is nothing to mess around with. Okay, I'll get off my soap box. <g> Take care! SunnyFLA6@aol.com


Norma's September 9 reply to Ian's September 9, 2002 - Hello Ian, I take l00mg of CoQ10 with breakfast, 30mg with lunch, and 100mg with supper. I also take 100mg of Hawthorne with lunch and 100mg wih supper. CoQ10 is especially helpful for those with CHF and DCM, and the Hawthorne keeps blood pressure lower without resorting to an extra prescription drug, which could have side effects. Of course, I don't have high blood pressure to start with. If you do, perhaps you need something more effective but I have stayed fairly healthy for over 4 years with this regime, plus digoxin (Lanoxin), Cozaar, and a diuretic. Good luck and let us know how you're doing, Norma. normadroz@aol.com


Jack D's September 10 reply to Ian's September 9, 2002 - Hello Ian, The things you listed except for Hawthorne are okay because they are things that your body needs. Hawthorne is an herbal drug. Anybody who self-medicates with an herbal drug or over-the-counter drug while using prescription medications is just asking for trouble because they are duplicating the actions of prescription drugs. Stay away from herbs. maddjak@hotmail.com


Kathy H, September 10, 2002 - Hi, Yet another question. What is the difference between fainting, light-headedness and blacking out? Today when I got up from a nap (I sleep a lot) I felt like someone had stolen all my bones. Man, what a goofy feeling. I knew I was going down and just aimed back at the bed. I had sat up first, not just jumped up with alacrity. I did not lose consciousness, I just lay there on the bed thinking, "Well this is silly." Is this something to bother the doctor with? I am on 12.5mg Coreg twice a day and Lotensin also twice a day and this was at least 5 hours after I took them. I'm also taking Lasix, digoxin and Protonix. I am learning more every day here. kathyh@linkny.com


Jon's September 10 reply to Kathy H's September 10, 2002 - Hi Kathy, Well, if it were me, I would definitely "bother" my doctor about it. <g> He does get paid big bicks for that bother, after all. ;-)
     The way I understand it, dizziness is when the world seems to spin around you or you feel like you are spinning. Lightheadedness is when you feel "faint" or are unable to positively orient yourself but things are not actually moving "on their own." Fainting is losing consciousness. Jon.


Don Hudson, September 10, 2002 - Hi, What is your comment on newspaper articles about a heart bypass pump which lets the heart rest for months? It worked for 10 patients. Failures were not mentioned and only a short time has passed. jdhudson@webtv.com


Jon's September 10 reply to Don Hudson's September 10, 2002 - Hi Don, Take a gander at the LVADs page in the Implanted Devices section. This has been done in many small trials over the years and resurfaces anew now and then. We'll just have to see if it ever gets a large enough, well constructed trial to tell us what the odds are of it working for a specific patient group. ;-) Jon.


Elaine WB's September 10 reply to Pat L's September 7, 2002 - Hi Pat, i hope you're doing well on your new med. I was afraid after reading your post that I might not be able to get my Coreg, which I called to refill on Saturday. When I got there today, it was ready for me and I was relieved. I'm in San Marcos, Texas. I don't know if that makes any difference, but thank goodness I have not had any problems getting my meds. They have them but my problem is having enough money for me to have them! However, I hear others are having the same problem. The pharmacy does have to order my insulin pens, but that usually only takes 2 days to come from San Antonio.
     Are there others out there having problems getting their meds from the supplies on hand? I am curious about this. The drug makers keep advertising everywhere, no regard to our money problems paying for the increased costs, some of which must be for advertising as well as research a development. I just don't understand how the meds can be so much cheaper in Canada and so costly here in the states. Does anyone know if there is any group besides AARP that is trying to push some legislation that will help everyone regarding our meds?
     The AARP bulletin and my Sunday papers are the only places I have seen or heard anything about the Socila Security and med problems. Let me hear from anyone with more info. Somehow, some way, we as a nation must deal with this worsening situation. Congress just seemingly will continue to put it off till only God knows when, and it's becoming more important day-by-day for most people. Thanks. bewblack1946@Hotmail.com


Jon's September 10 reply to Elaine WB's September 10, 2002 - Hi Elaine, This is not really a reply to you personally so please don't get upset! I do want to address a common attitude I see, an attitude reinforced by a media that tries to lead society down a path of their choice rather than just reporting facts. It bugs me big time, obviously, thus this little rant. ;-) Just let it go as a rant and Im fine with that.
     Do you really think government interference will help? Tell me, exactly and precisely what significant problems aside from war has our federal government actually solved, so that other serious problems did not result from their "solution?" Look at welfare, the Drug Enforcement Agency, the Department of Education - have they solved any problems they were designed to solve? Haven't they made things worse in some substantial ways?
     Drug prices are lower elsewhere mostly because their governments legislate limits on what can be charged, which is one very big reason why prices are so high here. Please read this post and this post (let them load completely to go to the exact posts). I don't have any practical solutions but I know that our goverment always blows it when they step in. They just make a bad situation even worse, like giving "Homeland Security" a mission to "protect workers' pension funds" - another bloated and ineffective bureaucracy born that will never die. Look at what the Department of Education has done to "improve" our kids' educational quality - now our kids graduate high school unable to read and do basic math.
     Look at the serious decline in England's health care - now from one in 10 to one in 4 British citizens are going to France for their surgeries because they can't get safe surgery scheduled in their own country anymore! Canada is on the same road - just give them 5 years. You can't get something for nothing and that's what governments demand when they step in - look at California's energy crisis. If you want some Word documents detailing how government is a really bad "solution" to industry problems, just ask and I'll make them available to you by e-mail. Politicans are worse businessmen than businessmen.
     I agree that we are being gouged on drug prices, but don't forget to add in very high pharmacist salaries and pharmacy profits, the truckers and airlines that deliver the drugs, the costs of goverment regulation, and all those other costs included in your drug bill. It's not just the drug makers and we have to address it all if we want a system that works.
     I am open to suggestions and if anyone has one that seems practical, I'll help organize a write-in campaign to elected representatives, drug manufacturers, and pharmacies. Let's hear ideas. It is time to do something - I just wish I knew what to do! Maybe if everyone bought some drug company stock and sent representatives to the stockholders' meetings, something could be done that way. The drug companies are so afraid of government regulation that maybe the threat of it would be far more effective than regulation itself if pressure is applied properly.
     What worries me is people who believe the media, and assume that somehow government can "make it all better" by waving a legislative wand. Such reactions often knock us dead down the road. I don't want to put in place a "solution" that sends my daughter into poverty or deprives her of needed services and products 20 years from now. It worries me from every angle but I don't know what will work anymore than anyone else - I just have no trust in the current federal government to act on logical and ethical principles to solve any problem.
     Please note that I see everyday the terrible degradation of our health care system as far as hospital services go because my wife is intimately part of patient accounting systems and deals with government regulation directly every day. It is a drag on the whole system so far beyond what most people imagine that I have no idea how hospitals even stay open these days - I am not kidding or exaggerating at all. Jon.


Tom S' September 10 reply to Staci H's September 9, 2002 - Hi, What planet does your doctor live on? I doubt seriously anyone with an EF of 10 is going to play tennis other than on a computer game. I think he was exagerating just a wee bit. bigheart@muchomail.com
 
Jon's note: At one time, I was trimming trees, mowing lawns, building furniture and doing all the housework with an EF of 13% by cath. Strange but true


Rita S' September 10 reply to Jon's September 5, 2002 - Hi, Today I am still looking for reasons why I can't stay awake for more than an hour at a time. Would that be a reason to go to the emergency room? I have been in contact with the nurse in the CHF clinic since last week, my doc is out of town. When I called yesterday and asked her to get me in with one of the other doctors and I needed an echo, she said I needed more potassium chloride and called in a prescription for me, even though last week she said my routine blood tests were normal.
     She had increased my Lasix to 80mg. That has helped some in removing the fluid, but not enough. My kidneys just don't seem to be working right. I realize now that I have been retaining fluid in my stomach for about 3 months and didn't recognize it. My skin had gotten real dry. I just now read some place in Jon's information that when fluid is retained in the stomach, the oral Lasix can't work right. Now I believe that's my problem.
     I have an appointment tomorrow with my PCP and now I'm prepared to dump all this on him and even ask for a referral to a different CHF doc. I'm wondering about the first signs of kidney failure. My skin was so dry and I looked so old in the face, and I thought it was from cutting all the fat out of my diet. I was dieting but I thought I was just fat in the stomach. I see that I sure have been ignorant. I should have been reading Jon's info more. Thanks, Jon! RDeanStokes@aol.com


Jon's September 10 reply to Rita S' September 10, 2002 - Hi Rita, What is your blood pressure? If it is too low, this could be a major player in your sleepiness. Are you sure your kidney function is being tested when your electrolytes are tested? If not, get then checked out, please.
     On a personal note - if it were me - I would not tolerate a doc with a nurse who doesn't get me in immediately when I say I have a serious problem. I have even walked in on my CHF doctor's office without an appointment or even a phone call and although he wasn't even there, I was seen in just a few minutes by one of his associates who was very good. Get another doc, is my personal advice. However, remember that some situations are far more complex than they seem online so think it through rather than just relying on my advice. ;-) Jon.


Janet TB, September 10, 2002 - Hi Friends, It's been awhile since I have posted but I have been lurking out here thinking of you all and privately responding to those I think I can help. I am surprised by the high number of recent posts that apply to my own roller coaster ride of the past 2 months - increasing drug dosages, CHF specialists, edema, cough, heart pains - you name it. I was diagnosed with idiopathic CM in February of 2002 with an EF of 30 to 35% by echo, and was not appreciably symptomatic.
     Following my diagnosis, I had 2 bouts of decompensation, both brought on by, I believe, by overexertion in the heat and humidity. Then this past July I developed a nasty upper respiratory infection that turned into bronchitis, then aggravated my mild asthma, and finally caused a pneumothorax (collapsed lung). I also became more symptomatic during this time and am still trying to crawl my way out. A recent BNP test showed 91 pg/ml so my cardio doc and internist think the problems were mainly lung-related.
          I still have the annoying cough. Althogh milder, it's still there, so now I am wondering if it is CHF-related after all. I also think I have experienced edema for the first time, around my middle. To my knowledge, I have not experienced it before, or at least I did not notice it, and get this: had it not been for my explicit request to my cardio doc to raise the levels of my meds, I would still be on my initial dosages of 3.125mg Coreg twice a day and 5mg Altace. Each time I have visited my cardio doc - twice since diagnosis - he said I should keep my meds at the same level. This never sat well with me, especially since the specialist I saw at Cleveland Clinic said my meds needed to be uptitrated (raised). The reason my cardio doc has not wanted to raise my meds is that my BP is low. Normal BP for me is 90s/60s although it does tend to rise during the day. However, even for my low BP, each time my meds have been raised (through my efforts), I have had to take a real empirical approach to convince my cardio doc that it did not really affect my BP.
     Sometimes it dips but it does not seem to affect my functioning. The CHF specialist I saw at Cleveland Clinic said low BP is okay as long as you are still "walking, talking, and peeing," but he also said he did not like to see anything below 40. I recently got in touch with my CHF specialist (Cleveland Clinic is 450 miles from where I live) and asked him to dictate a letter that clearly spells out my titration schedule and he is doing it.
     I just haven't been comfortable being my own cardiologist, so I am hopeful that my cardio doc will be more willing to increase my meds once he gets the info from my specialist. I am currently on 6.25mg Coreg twice a day and 5mg Altace twice a day and am tolerating it fine.
     One more thing, and I would appreciate input on this one. I will have my first follow-up echo since diagnosis, thanks again to a request from Dr. Me. I am still crawling out of the decompensation hole and although my energy has greatly improved compared with that experienced during my recent adventures, I still experience a few symptoms. I really hate the occasional heart pains. Given my current state, I am now apprehensive about getting this echo and am toying with the idea of canceling it. I know EF isn't everything and QOL is important, but a lowered result would really crush me. I would like to reschedule it at a time when I think I feel better but since I am not a soothsayer, I don't know when that will be. ;-)
     At this point, I will probably go through with it. So I ask you, what would you do? I am sorry this post is rambling. It's just that the recent posts have touched on so many of my CHF experiences that I wanted to throw my hat into the ring. Bless you all and good health to you, Janet T.B. jtitus@chestnut.org


Jon's September 10 reply to Janet TB's September 10, 2002 - Hi Janet, I am sorry for any seeming edits in your post but it is full of Wordpad formatting (characters) or something that scrambles when run through a cgi script so I have to guess in spots what it says.
     If it were me, I'd get the echo. Getting them when you think they'll be "good" doesn't help your doctor change your treatment in such a way that you then feel good. Besides, you never know what an echo will show. I have had very good numbers when I felt very, very bad before and I have had very poor numbers when I felt amazingly well. ;-) Jon.


Derald G, September 10, 2002 - Hi Jon, I've been going over your updated pages and they look quite good. I especially appreciate the healthy "ranges" like on your Vo2max page. I am firing my cardiologist. I called about my edema episode 8 days ago with 2 follow-up calls and I still haven't heard from him. This has happened several times before too. Thank goodness my PCP is decent and I do have a CHF specialist 3 hours from my home, but I really need a local cardiologist for prescriptions, quick questions and the like.
     Anyway Jon, do you think you could do a similar page on 6 minute walk tests? That sounds like something we could do at home if we knew the parameters - fast walk or slow walk, etc? and also how to interpret the results - 20, 200, 400 yards mean what? derald@nsdco.net


Jon's September 10 reply to Derald G's September 10, 2002 - Hi Derald, I've had a partly written 6-minute walk test page for about a year but it seemed so straightforward I never finished it. However, I'm afraid the distance walked means different things in different patients, depending partly on the reason they did not walk further. Angina can mean something other than SOB or leg fatigue when it ends the test or reduces the distance, and so on. Additional illnesses like lung disease or just being badly out of shape can alter the meaning of the results as well, just like in a Vo2max test. The test is very straightforward but you almost need a doctor to interpret it. I'll try to get it done pretty quick though, to answer some of those questions. :-) Jon.


Derald G's September 10 reply to Staci H's September 9, 2002 - Hi Stacy, I think you're absolutely right. There are people out there playing golf and tennis with very low EFs. I haven't ridden my horses in months and I miss it, so while waiting for the blacksmith last week I saddled one up. I could hardly get on the horse and when I did I could only ride 12 minutes. Then I spent 3 days mostly in bed and my last EF was 50%. I've never had a BNP test or a Vo2max. I went to see my PCP today and asked him to order both. I want to know where I stand. It starts to get scary when you have to explain to your doctors about recent tests and medical breakthroughs that they haven't heard about.
     Everyone but my CHF specialist in Portland says cut back on the Coreg. She said stagger your meds, titrate slower but get up to 25mg twice a day, and why would I want to cut back on something that increases my survival chances, even if that's what is making me tired and SOB? That's like a diabetes patient saying I don't like to test my blood sugar anymore so I'll just stop taking insulin. deraldg@earthlink.net


Giorgio, September 10, 2002 - Hi everybody. This is Giorgio from Italy again. I am 27 with familial DCM and an EF around 35%. I am doing quite well except for extrasystoles at night on the bed. First of all, thanks to the people who gave me advice about those concerns I posted here about my ICD and airport metal detector. I had no problems on my holiday and everything went fine with that. Second, I would like to ask a couple of questions:

  1. Has anyone ever tried to cure DCM with Chinese medicine? I found this link: www.itmonline.org/arts/shengmai.htm. It is about the so-called Shengmain San, a liquid that is supposed to regulate heart rate and heart functions. It is composed of Gingseng, Ophiopogon and Schizandra. Trials show it might help.
  2. Has anyone ever tried fish oil (sold in pills)? Some trials suggest it may help to decrease irregular heart beats.

I would appreciate a lot to read about some experiences of yours. I would like to try supplements but I am a bit scared. My doctor, no need to say, does not suggest me to do it. Cheers. giorgclunei@hotmail.com


Rita S' September 10 reply to Jon's September 10, 2002 - Hi Jon, Yes, my blood pressure has been running low at 77/57, 99/66, 108/31, and pulse at 80 to 90. The nurse thought that was okay. Also, she said the kidney function was okay in the blood test. I want to understand what is causing the low blood pressure - if it is any of the meds. Thanks, Rita. RDeanStokes@aol.com


Derald G, September 10, 2002 - Hi Jon, Where are you on your non-profit status? Is it as bad as trying to get Social Security? Not only do I want to know, but since you're too professional to mention how much it costs you to keep this site going, I wanted others to think about it too. Keep up the great work. deraldg@earthlink.net


Jon's September 10 reply to Derald G's September 10, 2002 - Hi Derald, I've been a legal non-profit corporation for awhile now. Reader gifts given to me for my birthday covered 80% of the cost! :-) My tax exemption application is currently at the IRS and I should know in 6 to 10 weeks whether it is approved. If so, I then send papers to my state's revenue department to get an exemption from them. At that point, donations will be tax-deductible. Of course, I have to pay every year to keep everything current both corporately and tax-exemption-wise on top of server costs but I am not complaining. It just amazes me every day how much work God can get done with a tool as dull as me. Jesus rocks!Jon.


Elaine WB's September 10 reply to Jon's September 10, 2002 - Hi Jon, You are exactly right on with all that you said. You answered like I hoped that you would. I am more than well aware of government failure to address many issues and most of the time it only gets worse. My point was to get people thinking about this huge problem for all of us and get some ideas that might actually be worth pursuing!
     Some of the drug manufacturers have indicated with their no cost-low cost programs they have instituted that they might be willing to help solve some of the problem. However, the obvious greater related issue is the one concerning the entire health care system of this country and the way it often does not work. I totally agree with you that if Congress and the politicans try to set policy, we will all be in bad, if not worse shape, than we are now. The AARP has launched several studies and initiatives, but they are dragging their feet as they (AARP) try to walk the fence based on their own problems.
     I worked in the hospital administration of a small county hospital in the late 60s when Medicare began. Even those "good ole country doctors" took advantage of every loophole to get the "government" to pay for things that were not necessary and certainly not life-threatening if done without. We had a flu epidemic the winter of 1967 to 1968. We had around 10 physicians on the board at that time, who would admit the person with the bad case of flu and then turn around and admit their spouse because they lived out in the country and had no one to stay with them or take care of them. We filled up every bed we had in 2 weeks and turned away really sick people to other towns 35 to 40 miles away because half our beds were full of people who were not really sick. The hospital got its money but at the expense of everyone in the nation! I didn't like it then and still don't but at this moment in time, we have little to no choice in this matter due to the expense and the economy.
     I cannot but think with the great minds that we know are in this nation that there must be someone or some group that might be able to find a solution to this problem. As you stated, we know that the health care systems of universality have not functioned well in those countries that have them. You are most correct in saying that we cannot expect something for nothing, but we, as the older generation, must try to resolve or be a part of a resolution of this problem. If you figure the math, there are simply more of us than there are of them and we are not getting younger! Yes, I did look in the mirror for that one! <g>
     We do not want to burden our chldren, grandchildren, and the following generations with money problems we could have solved. I know beyond a doubt that none of us wants that for our loved ones and that seems to be the only place this path is leading. Like you, I have no answer, but know there has to be one "out there." So listen up folks, we need everyone's two cents worth and we need it now so we will have time to find a solution. Thanks for listening. bewblack1946@Hotmail.com


Wayne, September 10, 2002 - Hi, I just read in the June issue of the Cleveland Clinic Journal of Medicine that beta-blockers have also been shown in numerous studies to decrease cardiovascular morbidity and mortality in heart failure. The caveat is that the beta-blockers may in fact be of more benefit to those with cardiomyopathy due to ischemia. This is quite a caveat if more translates into a significant number. Do you have any insight here? Thanks. whreos@earthlink.net
 
Jon's note: I just sent out a mailing tonight that may help on that - the benefits are there for all CHFers and the "more" is not very large, and probably based on genetics more than CHF cause


Amelia, September 11, 2002 - Hi everyone, I am having an ablation on the 27th but in the meantime I have been having a lot more a-fib and SVT and lasting longer. I saw my internist (for a non-related heart problem) on Tuesday and he contacted my CHF doc after taking an EKG. I was told to go back on my Toprol-XL. I am not too happy with going back on Toprol-XL because it made me very weak, emotional, and a little depressed.
     He was going to admit me to hospital but all they would do is monitor me and they already know what is going on. I was supposed to have the EPS on the 6th but they wanted the 2 specialists there and the 27th was the only day they were available.
     I have a question. Has anyone needed a pacemaker after having an EP study and if so, did they implant it at the same time? An anesthesiologist will be there also, so I thought it might be for that reason. I have heard that having an EPS is a "piece of cake" but I am still nervous knowing the risks, especially of another heart attack or stroke. Oh well, I guess I am being a big baby. Thanks to all you wonderful people, and to you Jon, for your dedication. Best to all, Amelia. amelias@erols.com


Ginger, September 11, 2002 - Hi, I have a question. I wonder where people like me that have bradycardia and can't take beta-blockers due to the low heart rate stand. That just sort of leaves us without the benefits of beta-blockers, I take it? I am sorry for not posting in a long time, but I am now a caregiver of my step dad, who has end-stage CHF and end-stage COPD, and I am coming up on my fifth year of DCM myself. So by evening time I am usually well out of energy and I also have the strange sleeping patterns of so many others with DCM and CHF. Iy just bugs me a bit about people like me that can't take beta-blockers. Take care all. Hey Jon, the site looks great. Sincerely, Ginger. angelgin@earthlink.net


Gracie, September 11, 2002 - Hello to all, I just had to tell someone, I recently took a trip to northwestern Oklahoma. Clean air is noted in the area I was in. Following my normal routine I took my blood pressure and heart rate just before bedtime. I was extremely excited when it read 137/79 and my pulse was 66! I have not had such a near-perfect reading in almost 2 years! Also, I had not taken my Accupril. Thinking it was a fluke I took it again a few minutes later. The results were the same. I was there for a week. I did not have to use my oxygen even once the entire time I was there, and my blood pressure and heart rate held at a very good level the entire time.
     After returning home I was back on oxygen within 18 hours of arrival. I live in southeast Texas, home of many oil refineries and pollution. I am making arrangements to move to that area of Oklahoma on a temporary basis to see if my health improves and holds steady. It sure beats waiting for this heart transplant. Hey, if it works for me we can all move there and live to be 100! Something there must be right because it is not uncommon for people in this area to live to be well over 100. I will keep you informed of the results of my very unscientific experiment. :-) soft_tx_breeze@hotmail.com


Pat L, September 11, 2002 - Hi Jon and everyone, Thanks for the responses regarding the Coreg backorder situation. The Toprol-XL seems to be working so far. My heart rate is staying in the low 60s. A few months ago I was spending about $340 per month out-of-pocket for my meds. The Coreg alone cost $89. I heard about some programs the drug companies were making available and I filled out applications for 4 of the programs. So far I have qualified for 3, and expect the other one to go through. I now, with the Share card from Pfizer, pay $15 a month for Zyrtec, which used to cost me $70. The Toprol-XL I was switched to would have been $31 but after applying "the card" I paid $6. Similarly, on the Zyrtec I pay $15 instead of $70. So I am saving a big chunk of money, which helps someone like me on SSD! Pat L. patlat@yaho.com


Tom S, September 11, 2002 - Hi, Government may be to blame but the whole medical system revolves around greed. At one time it was a noble enterprise that justifiably gained the respect and admiration of the people it served. Evidence of that can be seen in how the average person elevated the title "Doctor" to an almost godlike appellation. Today the same cannot be said and whether it be justified or unjustified, many people have more respect for used car salesmen than they do doctors.
     While there are thousands of doctors who do huge amounts of charity work, many set their sights on the huge profits that can be made on the backs of the generally ignorant public. Pharmaceutical companies are in the same league and first manufacture a dependence on a specific drug or treatment, advertise it heavily to a really naive public, then just sit back and rake in the billions of windfall profits.
     Greed is the bottom line in medicine and every facet of the medical industry is geared to that one goal, to realize as many dollars off the suffering of man regardless of the consequences to the real health and financial well being of a nation. It's a real house of cards and it is only a matter of time before it falls of its own weight. Emergency rooms are full of marginally sick individuals who have nowhere else to turn and can't afford the high cost of medicine increasingly becomming available to only the very lucky few. bigheart@muchomail.com


Karen R's September 11 reply to Jon's September 10, 2002 - Hi, A dull tool? You? I think not. Prior to reading your reply to Derald, I read your reply to Janet TB. When you said as far as echos, "I have had very good numbers when I felt very, very bad before and I have had very poor numbers when I felt amazingly well." At the moment I read that, I said, "That happened to me too" and then I just felt a great amount of gratitude for this web site that you've put together. When I got to your reply to Derald, I just chuckled. What you're doing here is so valuable to so many and as a true Christian person, you know we are just vessels for God's goodness flowing through us, if we choose; which makes you a very sharp tool. If ever you need anything, just let me know. God bless you. Karezybear@aol.com
 
Jon's note: I can always use prayers to nudge me ever closer to Jesus, please. My edge is dull but it can be sharpened. :-)


Tracey C, September 11, 2002 - Hi everyone, Well, I guess it's a good sign that all I've had to post about lately is cheese. So on that note, the Ralph's near me found a low sodium cheese and will keep it on the shelf regularly. It's by American Heritage, has only 5 mg per serving, is a 9 ounce bar, and doesn't have salt substitute added for flavor. It tastes very similar to Tillamook's low sodium cheddar that was discontinued. Take care and God bless. 2tcollins@cox.net
 
Jon's note: There's a grocery store named "Ralph's?" <g>


David B Wilson's September 11 reply to Maria's September 9, 2002 - Hi Maria, I have gout. The allopurinal does help and must be taken daily. As a bonus, it also help arthritis as well. Also, eating cherries helps too, or you can drink cherry juice. davybwilson@webtv.net


Tom S' September 11 reply to Jon's September 10, 2002 - Yeppers, There is a grocery store chain in California named Ralph's and I hear it mentioned from time to time by West Coast comedians. Also, not to belabor the gouging performed by all aspects of the medical industry, how can one justify a 400% increase in cost during the same period inflation was only a little over 10%? Better medicine - sure, to a certain degree, but when it becomes impractical to pay for the cure then people are pretty well stuck with the other options, suffering and dying while the medical "haves" live high off that pain. bigheart@muchomail.com


Jon's September 11 reply to Tom S' September 11, 2002 - Hi Tom, I agree that the increase has been too steep. However, it's a pretty complex situation.
     Let's say you sell 3 products: A, B, and C. You get paid by three different buyers. Buyer 1 buys Product A, and so on. Now, if Buyer 1 pays you exactly cost for product A, you have to raise the profit margin on your other two products or you can't make enough money to make it worthwhile producing anything. Well, the government is Buyer A.
     In fact, they require the provider to take a loss on many items below what it costs to actually provide the service. Therefore, the markup on Products B and C gets raised even more. Why do you think it costs a buck to buy a single aspirin in the hospital? It's largely because they run at a loss in many areas and they are trying to make up for it.
     Hospitals are also required by law to provide a certain percentage of their dollar business at zero cost to people. That's largely how you get those "write-offs" people talk about but rarely understand. There are of course, write-offs for other reasons - some purely good business - but I'm trying to keep this simple.
     Also, we have to remember that besides regulation, there are other reimbursement issues. These are often caused by contract "negotiations" in which the health insurance company says to the provider: "If you want to get people using our health plan into your practice, you have to agree to take less money for your services per patient on our plans." Now, when the insurer is large, this can represent a significant portion of all potential local customers, so the provider pretty much has no choice. Then of course, the provider has to again start making up those losses somewhere else.
     Now figure in all the huge lawsuit verdicts and settlements that are often awarded even when the damage is not great or the blame is misplaced, and you get huge increases in malpractice insurance, liability insurance, worker compensation insurance, legal fees to your practice's lawyers whom you dare not live without, and so on. You have to pay or go out of business. More costs that have to be passed on and we have all heard the size of some of these verdicts lately.
     Then there is yet another of many facets to this. Look at college tuition in the past 3 years versus inflation. There are plenty of other areas if you care to get into them, where rates have recently skyrocketed. In some cases - not all - industries have either been forced or have chosen to keep rates lower than they should have, then had to play catch-up. If they had raised them in a more steady fashion, few would have noticed the overall rate of increase and it would have been closer to inflation. Naturally, prices do not adhere to that rate, which can be considered totally artificial since someone has to choose the parameters used in the first place. <g> So it goes. It stinks, and people suffer, but hopefully we're looking for solutions since there is plenty of blame to go around - including some on patients.
     As to why people look up to doctors, I think it had little to do with past good deeds of the profession, but rather public ignorance of vast degree so that the common man viewed the profession as too complex for most men to master, thus those who mastered it were viewed as extraordinary. This is largely due to all the Latin, which is outmoded and unnecessary, and to the uncertainty involved in all medicine. Since no one really understood what doctors did for most of recorded history, they became mythical creatures by default. Jon.


Ben B's September 11 reply to Tom S' September 11, 2002 - Hi, My primary care doctor makes about $125, 000 a year, and my plumber makes about $80 an hour ($160,000 annually without overtime). Guess who I am happier to pay? As for me, I am extremely grateful for the Zestril and Coreg which have worked a miracle on me. Without these drugs I would be dead right now, and I think this makes them worth the price. Any person who worked or works in their career for free, please let me know and I'll nominate them for sainthood. bdbrinkman@juno.com


Richard M's September 11 reply to Ginger's September 11, 2002 - Hi, I have bradycardia and have had a pacemaker put in and I can take beta-blockers now. I should have asked first, do you have a pacemaker and if not, how fast is your heart pacing at? Malczewski@attbi.com


Kathy's September 11, 2002 - Hi, I have yet another question. What are the signs of a potassium imbalance/deficiency? My doctor said he thinks my lightheadedness is a result of low blood pressure. Mine drops pretty far sometimes. Before all this started I was about 108/60 and now it often gets to 90/50 or lowerm, but I remembered years ago my mom having potassium problems. Thanks. kathyh@linkny.com


Sue Ellen, September 11, 2002 - Hi, I hope I am doing this right! I got out of the hospital last night and I was told I have CHF. I am only 38. I have had severe high blood pressure and I guess that is the cause. I looked at a lot of sites about CHF last night and today, and this site has been the best and most helpful. Thank you. rehobothfarm@msn.com


Derald G's September 11 reply to Ginger's September 11, 2002 - Hi, If your EF is fairly low, I've read articles where doctors have installed pacemakers in their patients for the sole purpose of keeping their heart rates elevated enough to handle their meds. I think on the questions for Dr. Silver's page, he mentions that. deraldg@earthlink.net


Joseph P's September 11 reply to Amelia's September 7, 2002 - Hi Amelia, I had an EP study done and I had a pacemaker at the time.The EP study was a piece of cake and in doing the study it was determined that the pacer I had would not do the job if required. So I had a cath done on a Tuesday, and everything was okay. I was transfered to another hospital on Wednesday and the EPS was done. They determined that I needed an ICD insted of a regular pacemaker. On Thursday they took out the pacemaker and put in an ICD. Piece of cake. One year later I had an ablation done and the docs are taking me off some of the meds I am on. I hope this helped, Joseph P. joeandol@shawneelink.net


Ann, September 11, 2002 - Hi, I get the drugs I have to pay for from www.canadadrugs.com. A full pharmacy, it has a 5-page application, mostly history and meds taken. They need a faxed script from your doc or you. They also will have a licensed pharmacist call you if you need to ask questions about the med. It seems to me to be about 25 to 50% off the pharmacy prices here in the USA. The first order seems to take a couple of weeks, but after that it's pretty fast. rothwella001@hawaii.rr.com


Lee R, September 11, 2002 - Hi Jon and all, I have a favor to ask of all. One of our Heart-Help.Net group, a 15 year old heart transplant survivor, is having a "Run" in his honor, along with several other young people. It's a worthy cause for Childrens' Memorial Foundation Hospital in Wisconsin. Thanks to all and my good wishes, and special thanks to Jon for letting me post this. LeeRoush@msn.com


Ruthie A, September 12, 2002 - Hi, This note goes to all the diabetics here that use insulin. Did you know that insulin causes increased sodium retention and therefore edema? I have found it out the hard way. My feet look like balloons with toes stuck on them and for the very first time ever, my leg started oozing fluid last night. I beat feet to my doc today even though by that time I had done my homework and knew this fluid buildup was not caused by heart failure.
     The caution here is that since insulin - which a lot of us diabetics must take - causes sodium retention and extra edema, we have to be extra vigilant about our sodium and fluid intakes. The less sodium we consume, the better. It would be a good idea to talk to your doctor about insulin and sodium levels. You may need to increase your diuretic a bit, as I have had to do.
     Watch out for a drop in potassium due to the "flushing out" of your system. You may need to add a potassium supplement to your already complicated mix. Ruthie A. rlaba51@yahoo.com


Roseanne S, September 12, 2002 - Hi, Does anyone have any info on fluid buildup in the peritoneum? I was told this is not CHF but different, and not to worry. On another note, recently we were told it was time to call in hopsice for my mother, who is in an Alzheimer's home. After the inital shock, due to our previous experiances with hospice, when we were told to call and our loved ones only had days to live, we were told that this does not mean she has less than 6 months to live. New guidelines allow the PCP to renew her hospice contract every 6 months indefinitely. Mother is in a private home that does not accept Medicare and the bill is now up to $4,500 per month, including drugs. Hospice does bill Medicare. We recently received a Medicare statement showing they paid $3,000 for the month of June. Hopsice comes in 3 times a week, talks to her and pats her on the arm; no wonder medical costs are so high. rschurick@hillcrest-gcc.com


Tom S' September 12 reply to Ben B's September 11, 2002 - Hi, There are always exceptions to the rule. I know some doctors that make $50,000 a year as an emergency room physicians, but that is the exception. I failed to mention prior to this post that I grew up in the "doctor's row" neighborhood in a medium sized upstate New York City and I don't remember a poor doctor in the bunch. In fact, because I was one of the in crowd I got to rub shoulders with them during off hours at cocktail parties and heard a lot of boasting and crowing about how much money they took in off the Medicare system for patients they never even saw. Later I worked as a surgical technician in operating rooms with these same doctors and heard the same type of conversations on a daily basis. Most recently I had a friend who was the chief computer geek for a hospital who finally had to quit because he saw so much financial hanky panky going on among the administrators ($200,000 bonuses for upper management while the nurses got crumbs for raises). He had a nervous breakdown. At one point he told me that the cash flow in hospitals is so high they lose track of millions of dollars.
     As far as hospitals doing charity work, last year our local hospital took in $175 million and the total expenditure for "charity cases" was listed as $5 million, hardly a drop in the bucket if you ask me. Meanwhile they are building a $70 million addition that caters to the high end "birthing" market. Two years ago they spent $35 million to build a "heart center" which effectively shot the cost of heart catheterizations from a measly $12,000 each to nearly $18,000. A facility I might add, that already existed in the area and was doing a more than adequate job of handling the very lucrative heart market.
     As for free drugs, I get some free drugs and reduced cost drugs from the VA. I also get free Coumadin from the manufacturer but if my income was just a few dollars higher from the poverty level it is now that gravy train would end real quick. Everybody has marvelous stories about wonderful doctors and miracle cures, and all sorts of great dealings. I can stand in line and truly say I know some very dedicated doctors but I think that when a plumber gets $60 or $80 an hour, and a doctor gets upwards of $50,000 for a single job, something is really askew. At least you bypass a plumber and go to the do-it-yourself section of Home Depot or Lowe's and get the plumbing supplies to do the job yourself. Try doing that with a heart transplant or even a shunt. bigheart@muchomail.com


Jon's September 12 reply to Tom S' September 12, 2002 - Hi Tom, I'm very short on time right now so this may sound rough. I am sorry but I'm in a tearing hurry.
     First, it seems to me that you might have missed the main point of Ben's post, which I thought was that critical services deserve higher payment, even if current levels are too high, which I think everyone agrees upon. Your point about plumbers reinforces that - it takes a lot more education (which costs money and takes years), skill, and experience to do a surgery than to fix a bathtub faucet. Of course, it also requires steadier hands and stronger nerves. <g>
     I think most doctors earn their money. What difference does it make if a doctor is rich or poor? Do you understand - really understand - what is involved in modern doctoring? The literature cascade that must be studied at length, supervisory duties, administrative burden, teaching responsibilities, clinical practice, pressure to publish and review, etc,...? When I was in Club Med last time, I discovered that my CHF doctor was in practice one way or another from about 7:30 AM to 8:00 PM each day. No wonder he takes his vacations in Europe - he earns them! I think most doctors do earn their money, a large chunk of which goes to medical malpractice insurance, which has increased in cost over 10% each of the last two years! That's staggering by itself, and certainly not in pace with inflation.
     People rarely quit just because they see too much of what they consider "financial hanky-panky" and I doubt that this alone causes many nervous breakdowns. Common sense tells me there were other reasons that your friend wasn't telling you. Obviously, I cannot know what his situation really was, but this version seems not quite right to me.
     People talk out of the side of their mouth a lot, especially at cocktail parties! It's fine to quote hearsay as long as you have personally seen the numbers in a credible form somewhere. However, cocktail party conversation doesn't hold much water, nor does macho bragging in the workplace. I have personally seen a lot of that on several levels, most of which turned out to be nothing more than belching in the wind when someone tried to prove it later.
     I see actual numbers (internal documents) on the hospital system in my area (11 hospitals and 3 outpatient-only medical centers in that one system alone) so I do know what shape the hospitals in my area are in and believe me, they are not losing millions of dollars to careless accounting and they are not making big profits.
     I do completey agree that CEO salaries are terribly inflated and that needs to change, but fast. However, some bonuses are earned, and I have little sympathy for the nursing profession in general, although individual cases often trouble me. Nurses are in short supply and workers in an industry that is short of skilled workers always have a great deal of leverage if they use it wisely. Been there, done that. <g>
     As far as hospital income, I'd like to know how a hospital makes $175,000,000 profit. In my area, that would be flat-out impossible; earnings yes, but actual profit no. Calling $5,000,000 of charity a drop in the bucket smacks of an attitude approving of government coercing businesses to give away money they had to earn as a "necessary" idea. Personally, I think that is a very dangerous idea and I think the founding fathers would go to war over such a notion. You can help a lot of people who need help with 5 million bucks. ;-) Why don't other businesses have to spend at least 5 million a year on charity by law? That kind of thinking stands on very shaky ground.
     I'm stopping here after one more point, because this thread has nothing to do with giving ideas on how to improve things, which was the original intent. Hospitals - at least in my area - are required to apply for permission to state government before building new facilities. They must obtain from the state a "Certificate of Need" before building anything new. That permission is often denied if there is not a perceived need for the facility backed up by numbers in black and white. It's state law. I know this because it has happened in my area recently with some publicity about whether such regulation of business was a good idea or not. Maybe it isn't law in your state, but it is in mine. So perhaps there was some need for those new facilities in the state regulators' eyes.
     Gotta run. I apologize again for being abrupt in phrasing but when I am in a hurry that's how I write. ;-) I find it exceedingly strange that I am defending an industry I have so many problems with myself. <g> However, I do believe in some balance and no doctors or hospital administrators are here to speak, so it's up to me. I do want to refocus this thread on suggestions for useful change. One rant on a topic now and then is always allowed, maybe even two, but I have to draw a line somewhere. ;-) Jon.


Sheryl's September 12 reply to Gracie's September 11, 2002 - Hi Gracie, I'm glad you felt better here in Oklahoma. Good thing you're from Texas and almost tawk (talk) right. ;-) Welcome from an Okie, Sheryl. cvprehab@hotmail.com


Chuck H, September 12, 2002 - Hi, In August of 2002 my Coreg was increased to 6.25mg twice a day and since then I've had spotty psoriasis-like symptoms, little virulent patches that go away with a steroid cream. My doctor doesn't think (at least as of now) it was the Coreg. Has anybody experienced this? My other meds are digoxin, Prinivil, etc,..., from which I've had no bad reactions.
     Also, I found over-the-counter Benadryl effective on these skin eruptions. Is there any problem with that drug and CHF? My CHF is mild, with an EF around 45%. Ital880@cs.com


Jack D, September 12, 2002 - Hey, Now we have all sat in the waiting room at the doctor's office, waiting to be allowed in for our appointment that was supposed to be 45 minutes ago. We have whiled away the time scanning Modern Yachtsman, Pharmacology Today, or one of the twelve copies of 1996 People's Magazine - People of the Year edition.
     Well today I realized it had finally hit bottom. Scattered around the waiting room on tables and magazine racks were old TV Guides! Not vintage TV guides, just TV guides from earlier this year. Now a current TV guide might be nice, but there is no TV in the waiting room! maddjak@hotmail.com


Myrtle, September 12, 2002 - Hi Elaine, We can forget about getting help from our government to provide help with drug costs. The only way to get help is to be on Medicaid, and being a state run program, can we possibly make a difference? Yet with most states running a deficit I don't look for any relief from that program. We had "Tricare" to help pay for my meds, but when I turned 65 that was no longer available to me. Who knows why? God bless us all, and may God be with you Jon, to continue to help us. omie@axs4u.net


Myrtle's September 12 reply to Jon's September 12, 2002 - Hi, Most doctors use their titles for everything. I called my PCP doctor by his first name because I knew him when he was a youngster. I could tell he didn't like that and now I call him Doctor. Our granddaughter has a friend whose dad is a doctor and he makes everyone who is an in-law call him doctor. She overheard him say I worked hard to become a doctor, and should be addressed as such. Big hoohey, other people work hard also, and what do they get? As "Big John" says, "just deeper in debt." Well 'nough of my ranting. I have ribs that are sore and a whiplash that has me in a soft collar. The Lord keeps me going, His timeline isn't mine though. Hugs to all. omie@axs4u.net


Jon's September 12 reply to Myrtle's September 12, 2002 - Howdy-doo Myrtle, I sure hope you didn't get banged up too badly - like you don't have enough trouble with heart failure already! I agree with you - these are the kind of doctors I wouldn't grace with my grubby presence if they paid me to do so.
     I have a system with my own heart doc: when I am addressing him as patient to doctor I call him Dr. Porter, and when I am addressing him in any other way I call him by his first name only. It keeps us straight on how we are relating to each other from conversation to conversation.
     I have exceptionally good doctors but it took me several years to find the right ones, and I went through some like you describe in the meantime. I couldn't get along with them at all, as you might imagine. <g> Neither of my current doctors stands on ceremony at all whatsoever. They consider it a waste of time. I can only say to everyone to keep looking until you find the right doctor for you. It's worth it. Jon.


Mel G's September 12 reply to Giorgio's September 10, 2002 - Hey Giorgio, I'm glad you're doing all right with your ICD. I've had DCM for 10 months and just had an ICD implanted 7 days ago due to episodes of V-tach. I don't know why a lot of us get PVCs in the evening but it can be really bothersome! At least with an ICD, you can rest assured that if it becomes something really sinister, your device won't let anything happen to you. :-)
     I have never looked into Chinese Shengmain San, so I can't comment. I have looked into fish oils though and I'd be surprised if anyone (doctor or otherwise) would say they were harmful. If you take CoQ10 and many of us do, it's a good idea to have it with something like fish oil. Here in Australia they sell a capsule which contains CoQ10 with salmon oil. Deep sea fish oil is a very good source of omega-3 fatty acids, which help reduce triglycerides, helping both blood pressure and heart function. Our modern diet is often seriously deficient in Omega 3 oils especially as a ratio to the other oils we eat. I also take Squalene in a capsule, which is a deep sea shark oil that will help with the dry skin from diuretics and also with my scar tissue from the implant.
     They have completed a 3 year clinical trial in an Australian heart transplant center on patients awaiting coronary artery bypass surgery who were treated with Coenzyme Q10. The treatment produced major heart benefits which reduced patient time spent in the hospital and it is helping in long-term post-operative cardiac health.
     I'd make sure you tell your doctor if you are going to start something new. If he has a serious objection, then I think you have to listen to his reasoning and maybe take a second look at the situation. Good luck and stay well, Melanie. falmouth@bigpond.com


Stan, September 12, 2002 - Hi, I'm Stan and am one of the luckiest people on this site. In February of 2002 I was diagnosed with CHF. At age 44 and living in northern New York, it took 6 months to find out what was wrong with me. I made many trips to the local health center where I was treated for phenomena. My last trip they took an x-ray and found my real problem.
     This is where the lucky part comes in. I went to a great internist and a good hospital. The people there took very good care of me and explained what was going on and what my part in the whole thing is. I did not like the cardiologist there and went downstate and got a second opinion. The cardiologist there was great. Again, everything was explained and my treatment started. I started on all the normal meds, had a pacemaker put in, and had 2 months at my parent's house to rest up and get back on my feet.
     After 2 months I had enough and talked the doctor into letting me go back to work. Next was getting the plant I work in to take me back on light duty. They have no light duty positions and I knew this. They took me back with open arms and found a place for me to fit in and do something productive.
     My EF is 15%, I am on 100mg a day of Coreg, have a pacemaker, take 7 other meds including an antidepressant and Coumadin. I still work 40 hours a week, mostly at a desk, but I still walk about one mile a day to do my job. I am able to live on my own, go fishing, pretend to hunt, and enjoy life. I know soon I will have to cut down to 32 hours a week and can accept that after reading the message board on this site.
     I was told about and visited this site when I found out about my CHF. I could not stay on for long because it scared me. I now find comfort and strength from reading what you people have to say and I want to join in the group. I also hope to help someone as much as you people help me. It is nice to know other people are going through the same things I do and see how others cope. sfredett@westelcom.com


Jim's September 12 reply to Jon's September 12, 2002 - Hi Jon, Your treatise on today's medical care was extremely comprehensive and right on target. I would only add that the much-vilified drug industry makes possible the many meds that all of us require to literally keep us alive. These miracle drugs do not grow on trees; they are the result of extensive and expensive research, and I believe that in return for developing these meds, drug companies are entitled to a fair return on their investment. jimoran@aol.com


Ben B's September 12 reply to Tom S' September 12, 2002 - Hi Tom, If everybody posting here can carry out a major plumbing project on their own, then maybe there are a few too many people on disability. Besides, I'm sure there are times when a good plumber is well worth the price. It seems like Tom S and I are frequent sparring partners and I love the honest and passionate sharing of opinion. Sometimes it is so darned genteel around here I start to forget I'm not dead already. I keep getting the image of 2 feeble, gasping CHFers wobbling out to the middle of a boxing ring, touching gloves, and both immediately passing out. <lol> bdbrinkman@juno.com


Jacky, September 13, 2002 - Hi, I have seen a lot of info on beta-blockers and CHF which indicates that beta-blockers are a must for CHF. I am taking Diovan - an ARB, and amiodarone - an anti-arrhythmic. I also take lipitor, synthroid and fosamax. Should I take a beta-blocker as well? I see my doc next week and would like to know if would be a valid request. Jackymwb@aol.com


Jon's September 13 reply to Jacky's September 13, 2002 - Hi Jacky, I always say to start with the official treatment guidelines for heart failure. If you're not on therapy in line with the guidelines, ask your doctor why not. Be sure he has good reasons with trial results to back them up if at all possible. Jon.


George S, September 13, 2002 - Hi, I have a suggestion. While there are obviously differing opinions on various sensitive topics like the cost of drugs, health care quality, hospital services, government insurance, docs - to name a few, these posts do not directly contribute to the fundamental purpose of this CHF site.
     A suggestion would be to dedicate a separate section for these discussions by major topic area but keep them off the heart forum board. In this manner, the primary board can continue to be devoted to CHFers' questions and issues about how to help each other, while those interested in these supporting topic discussions have a non-distracting forum also. georgeselin@myppi.biz


Jon's September 13 reply to George S' September 13, 2002 - Hiya George, That's a positive idea. Still, the fundamental purpose here is to cope with heart failure and that covers a lot of ground. I think frustration with the health care system is a part of living with heart failure - unfortunately. <g>
     I get frustrated with it myself. I have to get on the phone today with a business office manager because they are illegally billing me before billing Medicare or my third insurance. These issues are real-life CHFer irritants so I figure they can be included here.
     The original posts called for constructive ideas for improving the system or how to cope with it, and if one or two come to light, that would benefit us all. Jon.


Linda Z, September 13, 2002 - Hi, Here's some inside info on doctoring. First there was 4 years of undergradute work, then 4 years of medical school, followed by a 4 year residency, where thankfully a salary was paid but it barely covered minimum living expenses while work days started at 6:00 in the morning and usually didn't end until 8:00 or 9:00 at night. Every third day was a 24 hour shift. It's bad sleeping in a crummy, stinky room trying to grab a few hours of sleep so that when the next call comes in you aren't so tired that you make a dreadful mistake.
     After all that you finally get to practice medicine on your own. Now you either join an existing practice or set off on your own. There are tremendous expenses with either choice. My day started at 7:00 AM when I saw my first patient and ended at 7:00 AM when I saw my last patient. That wasn't the end of the day though because there are committee meetings and in-service training meetings.
     When I graduated in 1984 there were no MRIs. Somewhere along the line I had to learn about MRIs plus every new drug that comes along that may be of help to my patients. As for magazine subscriptions, well, the price comes out of the overhead of my practice. Some part of what I earn goes into those subscriptions. Unfortunately most of the newer and slicker magazines walk out the door within a day or two of arriving in the office. Then my office staff reminds that there is now no reading material in the waiting room, so we all grub around our houses to find something to replace the missing magazines.
     While you are waiting for your appointment, I am trying to keep on schedule while I am also trying to field phone calls from patients and others involved in their care (Jon's note - also from pharmacists). If I am lucky, I can postpone the calls until the end of the day, when I may spend an hour or more returning phone calls. However, if I need to speak to a child's teacher (I see children) I need to return the phone call during the day. Once a week I teach a course at the local medical school for free and have to commute from my office to the school and back. It is only across town but sometimes traffic takes a turn for the worse and then I am stuck.
     I forgot to mention the many patients I see who don't have adequate insurance or any insurance at all that I continue to see in my practice for low fees; or the patients that I treat and who then stiff me and pay nothing at all.
     I am now medically retired because of my CHF, but I never got rich, never turned a patient away, and am pleased to say that I made a big difference in some people's lives. I was drawn to medicine because of my early history with cancer, not because I wanted to get rich. Since my personal circle is filled with physicians and other health care professionals, I can say that most of us live comfortably but we aren't raking in money and we work long and hard hours. We don't walk out the door and forget about our jobs at nights or on the weekends.
     The health care system stinks in this country but this is not caused primarily by physicians. It is a complex problem and neither patients nor physicians are willing at this time to make the changes that would result in better health care. Zame@earthlink.net
 
Jon's note: For everyone's info, I wanted some journal subscriptions but they often cost $500 per year per journal. A cardiologist needs roughly 10 journals to keep up.


Jon, September 13, 2002 - Hi I talked to an FDA official and they have no reported shortages of Coreg anywhere in the USA right now. They believe it must be one single supplier having a temporary shortage. Jon.


Jon, September 13, 2002 - Hi everyone, There is an interesting article about health care trends online. I'm too tired to summarize it but you can read it at www.hschange.com/CONTENT/466/. Jon.


Clara, September 14, 2002 - Hi, Has anyone had any experience with Diovan (valsartan)? What were your side effects, if any? I have IDCM, class one CHF with an EF of 14%. I take no other meds except CoQ10. I couldn't tolerate either enalapril or Cozaar. Any information would be appreciated. I am almost afraid to try it after terrible side effects with enalapril and Cozaar. ncdossetts@aol.com


Dorothy Powell's September 14 reply to Jon's September 11, 2002 - Hi Jon, I wanted to let you know that I also had problems getting my Coreg prescription refilled. It happened about September 2. I get my prescriptions from Express Pharmacy Services in Largo, Florida. They called me and said they had it on back order. They then transferred the prescription to the local Eckerd pharmacy, which did have it. DPowell806@aol.com


Herbert L's September 14 reply to Myrtle's September 12, 2002 - Hi, If turning 65 was the only reason you are not on Tricare - the government medical program - you are misinformed. They now have a "Tricare for Life" program that acts as a secondary insurance after Medicare for government-retired employees and their dependents and widows. It also has a prescription drug program that supplies name brand drugs for a $9 co-pay and generic drugs for a $3 co-pay. These programs just came out last year and they are great the-honey-do@home.com
 
Jon's note: Is this just for former government employees?


Katherine's September 14 reply to Linda Z's September 13, 2002 - Hi Linda, Thank you. I could not have said it better myself. Both my father and sister are physicians and I have seen up close the effort, long hours of work, and the emotion toll it has taken on our family. I remember family dinners, even Thanksgiving dinner, when my dad had to leave for a patient's medical emergency. I even remember a phone call received halfway around the world from a patient who was concerned her bowels had not moved for 2 days. I know some doctors don't deserve the patients they have but like everything in life, most fall somewhere between the very worst and the very best. kholian@msn.com


Jon, September 14, 2002 - Hi everyone, The BNP test page has been massively updated. I have more to add to it later and have contacted Biosite Diagnostics for yet further information. It looks like doctors and researchers may come to rely heavily upon this test and I have some reservations about it in certain areas, so I am trying to get them answered and will post that info as it becomes available. Jon.


Rita S, September 14, 2002 - Hi Jon, Yes it is for retired military personnel and their dependents. It came about because they closed all the military hospitals. RDeanStokes@aol.com


Karen K's September 14 reply to Herbert L's September 14, 2002 - Hi, Not all retired government employees and their spouses are eligible for Medicare. There was a window of time when civil service employees did not qualify for Social Security and hence no Medicare coverage.
     I know this for a fact since my father was employeed by the federal government and my mother does not receive Medicare benefits of any kind, medical or otherwise. She does receive a pension payment from the federal government and is offered a fairly good health plan for which she pays. Karen.
     PS. I just did a Net search on Tricare for Life and it appears to be offered to military service retirees. karenk@mchsi.com


Derald G's September 14 reply to Clara's September 14, 2002 - Hi, I'm sorry Clara, I have no experience with Diovan. It's an ARB, right? If you are seriously taking no prescription medications and have an EF of 14%, that is not a good thing. There are other ACE inhibitors and ARBs than enalapril and Cozaar, like Diovan, that might work for you. You might try smaller doses at first but by all means try things until you find something that works for you. You haven't mentioned trying a beta-blocker like Coreg. Are you seeing at least a cardiologist or just your family doctor? How long have you had CHF? You are amazing if you are class one! If you haven't already, please read Jon's "The Official Treatment Guidelines for Heart Failure" and discuss it with your doctor. If he is not any more aggressive than it appears, you need to get a new doctor. deraldg@earthlink.net


Ruthie A's September 14 reply to Clara's September 14, 2002 - Hi Clara, Like you I had a major problem with my ACE inhibitor and with Cozaar. I took Monopril when I was first diagnosed with high blood pressure, about 8 months before being diagnosed with CHF. Six months after learning I had CHF I developed the world's worst dry cough. I would sit on the edge of my bed coughing every night until hubby put his food down and made me go to the doctor. Diovan was rather new then and the doc put me on it more as an experiment than anything else. Later, I was switched to Cozaar by my CHF specialist in Tennessee, but I don't remember why.
     I took Cozaar for nearly 3 years, when all of a sudden I developed angioedema and my airway was almost totally blocked. We switched back to Diovan with trepidation, but I have not had any problems with it like I did with Cozaar. I am very sensitive to medications and I seem to get every side effect in the book and then some! However, thank the Lord, Diovan has worked like a charm without any side effects whatsoever.
     If your doctor suggests you try Diovan, Clara, give it a shot. You won't know whether it will work for you unless you do. However, it might be smart to be prepared for some type of reaction if you have reacted negatively to Cozaar and other meds. I hope you can tolerate Diovan or find another medication that you can handle. Ruthie A. rlaba51@yahoo.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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