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

Jon 3-16     page updates
 
Joshua 3-16     update, Coreg titration question
 
Ginger's 3-16 reply to Liz D's 3-15     about that test and doctor
 
Joe S' 3-16 reply to Tom's 3-15     Dr. Atkins' Diet
 
Jack 3-17     Dr. Atkins' Diet
 
Harlan 3-17     seek southwest Michigan info
 
Jon 3-17     COMPANION trial
 
Cindy 3-19     heart pictures
 
Michael S 3-19     seek ADD drugs info
 
Bill B 3-19     my girlfriend is afraid
 
Jimmy 3-19     intro, is my CHF not reversible?
 
Barb L S 3-19     update, thanks
 
Tom's 3-19 reply to Jack's 3-17     the Atkins' Diet
 
Jim R 3-19     seek Southwestern restaurant recommendations
 
Liz D 3-19     thanks, update
 
Mary Lou L's 3-19 reply to Anna M's 3-13     Disability info
 
Brandy L 3-19     have PPCM, seek Coreg experiences
 
Cristina L's 3-20 reply to Jimmy's 3-20     doctors and getting better
 
Jon's 3-20 reply to Jimmy's 3-20     getting better
 
Thelma 3-20     question - taking both ARB and ACE inhibitor
 
Jon's 3-20 reply to Thelma's 3-20     taking both ARB and ACE inhibitor
 
Vee 3-20     metoprolol for CHF dose questions
 
Jon's 3-20 reply to Vee's 3-20     metoprolol for CHF a new indication
 
Bill D's 3-20 reply to Cindy's 3-19     cath pictures
 
Jon's 3-20 reply to Bill D's 3-20     cath pictures
 
William B 3-20     what are normal blood levels of stuff?
 
Jon's 3-20 reply to William B's 3-20     here's a start
 
Mike J's 3-20 reply to Tom's 3-20     the Atkins' Diet
 
Ben B's 3-20 reply to Bill B's 3-19     relationships and CHF
 
Jon 3-20     drug warning
 
Jan R 3-20     seek help thinking positively
 
Jon's 3-20 reply to Vee's 3-20     found the FDA approval
 
Vee's 3-21 reply to Jimmy's 3-19     BP, meds, CHF, docs & more
 
Ginger's 3-21 reply to Jan R's 3-20     CHF, docs, & more
 
Walter K's 3-21 reply to Vee's 3-20     Toprol XL dose for CHF
 
Jon 3-22     page updates
 
Stephanie 3-22     checking in, Marc Silver's book is great!
 
Patrick M 3-22     have you seen Centerwatch?
 
Lisa H 3-22     seek experiences with Texas CHF doc
 
Cheri S 3-22     iron & cholesterol questions
 
Sharon P's 3-22 reply to Walter K's 3-21     Toprol XL dose
 
Dana J's 3-22 reply to Walter K's 3-21     Toprol XL dose
 
Charles K's 3-22 reply to Vee's 3-20     Toprol XL, update on me is not so good
 
Marsha H 3-22     how often should we have blood testing
 
Jon's 3-22 reply to Marsha H's 3-22     blood and urine testing
 
Jon 3-23     to Randy B
 
Joyce 3-23     seek other insulin dependent diabetic CHFers
 
Ben B 3-23     Enbrel for CHF
 
Cristina L 3-23     Toprol XL dose, BP, questions
 
Ginger's 3-23 reply to Jon's 3-22     blood testing, seek suggestions about getting new doc
 
Jon's 3-23 reply to Ginger's 3-23     blood testing, getting new doc
 
Mary A 3-23     intro, have HCM, questions
 
Jon's 3-23 reply to Mary A's 3-23     stress testing, CHF & more
 
Jon 3-23     chest x-ray to determine CHF
 
Walter K 3-23     to those taking Toprol
 
Lee R's 3-24 reply to Mary A's 3-23     disability, doctors & more
 
William B 3-24     update, docs, Coreg
 
Bill B's 3-24 reply to Ben B's 3-23     CHF & relationships & more
 
Robert J 3-24     intro, cholesterol levels, niaspan questions
 
Leland Y 3-24     update, overdoing it
 
Ginger's 3-24 reply to Jon's 3-23     finding doctors, numbers, numbers, numbers
 
Jon's 32-24 reply to Ginger's 3-24     I know what you mean
 
Jenny L 3-24     retaining fluid & taking extra Lasix questions
 
Donna Z's 3-24 reply to Joyce's 3-23     meds, diabetes & more
 
Phil M 3-24     seek CHF tests experience
 
Ernest D's 3-24 reply to Robert J's 3-24     HDL cholesterol, update
 
Tom W 3-26     finding a PCP
 
Judith's 3-26 reply to Joyce's 3-23     insulin dependent diabetes & CHF
 
Julie G 3-26     seek CHF doc near Quincy, Illinois
 
Doris R 3-26     seek dieting help
 
Jon 3-26     The Doctor's Page
 
Jon 3-26     Toprol XL and target doses
 
Maureen Mock's 3-26 reply to Lisa H's 3-22     Dr. Yancy
 
Peggy's 3-26 reply tp Brandy L's 3-19     positive Coreg experience
 
Vee's 3-27 reply to Jon's 3-26     Toprol XL, BP questions
 
Luc D 3-27     what is Cozaar? & more
 
Milt 3-27     sugars and diet
 
Tom 3-27     is climate a factor in CHF?
 
Tracey C 3-27     is hair falling out meds-related?
 
Walter K's 3-27 reply to Jon's 3-26     Toprol XL & other meds - dose question
 
Jon's 3-28 reply to Walter K's 3-27     Toprol XL & other meds - target dose
 
Dana J's 3-28 reply to Tracey C's 3-27     hair falling out
 
Donna Z's 3-28 reply to Milt's 3-27     seek diabetic CHFers' experiences
 
Cheri S' 3-28 reply to Tracey C's 3-27     hair falling out
 
Claire E 3-28     there are good PCPs
 
Claudia 3-28     new treatment questions, Coreg questions
 
Jill M 3-28     just touching base
 
Milt's 3-28 reply to Donna Z's 3-28     diabetes and CHF - meds
 
Linda S' 3-28 reply to Donna Z's 3-28     diabetes and CHF - meds
 
Nadine 3-28     hair loss & more
 
Sid K 3-29     seek advice on chronic diarrhea
 
Wayne S 3-29     low BP, reduced doses, am I losing benefit?
 
Sharon P's 3-29 reply to Tracey C's 3-27     hair problems and CHF drugs
 
Donna Z 3-29     thank you for input & more
 
Joe S' 3-29 reply to Tom's 3-27     climate and CHF experience
 
Tony's 3-29 reply to Nadine's 3-28     hair loss and heart meds
 
Jon 3-29     target doses, mutiple meds & more
 
Bill C's 3-29 reply to Linda S' 3-28     heart failure and diabetes meds
 
Marsha H's 3-29 reply to Sid K's 3-29     chronic diarrhea, meds, potassium
 
Tony's 3-29 reply to Sid K's 3-29     chronic diarrhea and taking meds together
 
Sid K 3-31     thanks, cayenne & digoxin questions
 
Jon's 3-31 reply to Sid K's 3-31     cayenne
 
Sigmund B 3-31     thanks, update, interesting url & more
 
Bill D 3-31     update, hospital practices & more
 
Ken N 3-31     new web site seeking suggestions
 
William B 3-31     what is a MIVI test?
 
Lil 3-31     CHF questions
 
Joe S 3-31     back to square one - weak hearts are weak
 
Yvette's 3-31 reply to Lil's 3-31     exercise, docs
 
Sharon P 3-31     life style counts!
 
Pati F 3-31     what now?


Jon, March 16, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Transplant Update
  2. Nutrient Stew - Vitamins
  3. Nutrient Stew - Minerals
  4. Medspeak
  5. Phil S' bio
  6. Nutrient Stew - Diet
  7. Heartbytes
  8. Heartbytes 2
  9. ICD page

A note: CSC - the world's third largest supplier of computer services - has announced a tremendous drop in profits from last year. CSC notes that it is seeing an accelerating decline in sales of high-margin healthcare software licenses as well as related healthcare services. I would say this suggests that healthcare companies and hospitals are going broke fast - not a good sign. It is mostly due to government interference, in my not too humble opinion. :-( Jon.


Joshua, March 16, 2001 - Hi, I'm now up to 12.5mg Coreg per day. This is my third day at that dosage. I am having some energy drain but it's tolerable. I stayed on 6.25mg for 3 weeks and did alright. Does anyone have any info on when to boost the dosage? I'm kind of handling this myself, at tolerance, because it is such a hassle to get to talk with my doc. I'm still on Norvasc, Vasotec, and Zocor. The doc says when I'm up to 50mg of Coreg, he's going to try to get me off Norvasc. I'm like an old tired mule, just trying to go straight. jatilton@huntnet.net
 
Jon's note: Never raise Coreg dose more than once every 2 weeks and make raises as small as possible, although technically 12.5mg per dosage raise is okay


Ginger's March 16 reply to Liz D's March 15, 2001 - Hiya Liz, First of all, If this happened at your cardiologist's office, then he should have either told you he didn't want to do the test or better yet he should never have set it up.
     Second, I never had to bring an EKG with me for a stress test. I think the $15 is the least problem of all that happened. Somebody really messed up and if it was your doc you need to talk to him or get a new one. It doesn't make sense to me that your doc would order a test he didn't want done. I would have felt like I was in the twilight zone too, but I also would want some answers from the cardiologist who ordered this test to begin with. Good luck. Hugs and prayers, Ginger. angelgin@bellsouth.net


Joe S' March 16 reply to Tom's March 15, 2001 - Hey Tom, Join the club regarding Dr. Atkins' Diet. I am convinced it started all my heart problems but it wasn't the low carbohydrate part; it was the fact that a "friend" told me I could eat all the sausage, bacon, ham and cheese I wanted and I did. Good luck in the future. I stopped these stupid things, started exercising regularly and moved to a high, dry climate and now they say my CHF is gone. Good luck, Joe S. jes@pronet.net


Jack, March 17, 2001 - Yo Guys, If anybody had actually gone on the Atkins' Diet instead of having some friend tell you about it, you would have read that the recommended protein was from fish and chicken. Nowhere does he say you can eat all the bacon, sausage, and cheese you want. He even recommends that you go easy on the beef because it builds up an acid in your system. Cheese is okay in moderation because it has so many calories, but the Atkins' Diet is like so many other things in life: you have to follow instructions and that's one of the most difficult things to do. Jack. maddjak@hotmail.com


Harlan, March 17, 2001 - Hi, I'm looking for MediGap insurance for southwest Michigan, and the cost or name of HMO. Thanks. rochefort@triton.net


Jon, March 17, 2001 - Hi, I normally do not post this kind of information since you can obtain it easily through my Links page but Centerwatch sent out an unusually long mailing so I am making an exception. The COMPANION study is "Comparison of Medical Therapy, Pacing, and Defibrillation in Heart Failure." Info on the study's locations and on other studies for heart failure can be seen at Centerwatch, available through my Links page.


Cindy, March 19, 2001 - Hi all, Shannon, I think someone goofed and gave me angiogram pictures. Bill's description really fits what I can see, but thanks a lot! Bill, I can actually see that lifesaver. <g> Do you know if it will rejoin at some point? Is it a real accurate guidance concerning ejection fraction? I noticed that some pictures show a white circle (hole) in the center of the lifesaver, while some other ones show blue-black. Is that blue-black hole the part that is damaged or is that just another view of something else? Would you happen to have any sites that explain these pictures, or show some pictures? Thanks muchly! Cindy.myelo@email.msn.com


Michael S, March 19, 2001 - Hello, I was recently released from the hospital with CHF. I am 32 years old and until about a month ago, I was relatively healthy. I have never had any heart problems or any health problems, for that matter. In December I was diagnosed with attention deficit disorder and was prescribed a drug called adderall. I believe this drug is what caused my heart failure. Does anyone have any information on where I can research this possibility? Thank you, Michael. Stroman69@yahoo.com


Bill B, March 19, 2001 - Hi everyone, I hope you are all well. Maybe someone has gone through a similar situation and can help. My girlfriend lives in California and is afraid to move here to Texas because she is afraid I will die soon and will leave her all alone. We are both Christians and know that death is a part of life and is a wonderful new beginning with God, but she is so afraid. I have tried all I know to comfort her. She reads this site all the time trying to understand about my disease. If you have any advice I sure could use some help here. God bless, Bill B. fedx44@yahoo.com


Jimmy, March 19, 2001 - Hi, I don't know where to start. Of course I am new here. I am a male, 56 years old. I had bypass, CAD, uncontrolled hypertension, and CHF. All my doctor is telling me is, "I cannot do anything else for you." My blood pressure is not controllable, although it very seldom goes over 180 over 90. He has me on several medicines including a daily diuretic. I just don't know where to go from here. Apparently my heart failure is caused by my hypertension, along with the CAD. Does that mean it is not reversible? Jimmy. jimmywpope@yahoo.com


Barb L S, March 19, 2001 - Hello Everybody, Bill, I wanted to thank you for the list. I forwarded it onto Paula and I believe that she has found even more support. Maureen, thank you so much for posting to me. I had my whole reply written out and my 3 year old toddler shut off the computer. <g> I'll just say that I and my gynecologist agree that everyone should be on the same page. I've just gotten used to the idea of having a hysterectomy and now my doc is considering one other option and that's a hystascope. There are 2 reasons. I still have to see a gynecologist oncologist for one surgery, and he and my gynecologist want me to have the hysterectomy at a major university hospital. The oncologist is one of a whole new set of doctors. If my CHF specialist would join in, maybe I could get on with my life. Now, I'm still on hold and unfortunately, still a little frightened. I really just want it to be over, especially because I already had one blood transfusion and need another one before surgery. I can say that I am grateful though, because I now know why I've been so, so tired for a long time. Also, my CHF specialist did offer for me to have it at his hospital or the hospital of my choice but we felt really uncomfortable with my last visit.
     You are so right about hemodynamics and anemia being our true enemies. I've been anemic since during my pregnancy and many of my health problems have come as a direct result of that anemia, including my CHF. They could never figure out why I was anemic or what they could do to help me until my h and h dropped to 6.3. Thank you again and everyone, please take care and God bless, Barb L. S. Alikeys@hotmail.com


Tom's March 19 reply to Jack's March 17, 2001 - Hi Jack, I did follow the diet; I had the book. The diet puts you into ketosis. When that happens, it also starts messing with your electrolytes. For someone with CHF that is not a good thing, seeing as our hearts are already subject to arrhythmic problems. That is what happened to me, as well as a general feeling of ill health.
     This is not a new diet. I was on Dr. Stillman's Quick Weight Loss Diet back in the 70s - same thing - only I didn't have CHF and lost 15 lbs in 2 weeks. This time I was almost a goner. Thankfully, I was in the right place at the right time! The Atkin's Diet is now under scrutiny in many medical communities. I am on a crusade to ask people with CHF to stay away from the diet. There are numerous heart-smart long-term diet alternatives for those of us with CHF. Tom. tome44@accesstoledo.com


Jim R, March 19, 2001 - Hi, I'm traveling to Santa Fe, Phoenix, and Tucson soon and would really love to eat some of the wonderful Southwestern and New Mexican cooking. Can anyone recommend some restaurants where I might have a chance of getting low sodium regional cooking? jross10@attglobal.net


Liz D, March 19, 2001 - Hi all, Thanks Jon, Ginger, and Roz for responding to my post. I'm relieved that this was unusual. Fortunately, reading this forum had prepared me psychologically for these kind of mess-ups so I wasn't stressed by it, just frustrated! The upshot is that we've notified our insurance company and we've requested our money back. Next, I will be writing letters of complaint as you suggest Jon, and lastly that outfit of cardiologists is history. Thanks so much for your help. You all are a courageous bunch! Liz D. MaryAstor@aol.com


Mary Lou L's March 19 reply to Anna M's March 13, 2001 - Hi Anna, You can find a lot about SSD at www.jonsplace.org/CHFssd.htm on Jon's Social Security Disability page. Jon has gathered this information and made it available to us. Thanks Jon! Mary Lou. MLBinks@aol.com


Brandy L, March 19, 2001 - Hi, I have peripartum cardiomypathy. I have been on metoprolol for a year and have improved from 30%-45%. Now they want to start me on Coreg. What symptoms should I expect? Should there be a lot of side effects? Any info appreciated. I have read Jo'ns Coreg page but would also like your opinion. brandylee1114@aol.com


Cristina L's March 20 reply to Jimmy's March 19, 2001 - Hi, I don't think anything is ever reversible. Your doctor is giving up on you? It's now time for you to give up on him and find yourself a real CHF specialist. Get the right doctor, support and diet, and I'll bet you you will start feeling better. Keep us updated. Hang in there. rjlisa@bellatlantic.net


Jon's March 20 reply to Jimmy's March 19, 2001 - Hi Jimmy, I agree with Cristina but that term reversible is kind of tricky. It all depends on what you mean to be reversible. Heart size can be brought down, circulation can be improved, cardiac output can go up and so on; so in one respect, heart disease is reversible. However, some of the damage done before that happens is usually permanent and so is not reversible. In other words, as Cristina pointed out, you can get better - maybe even a lot better - but we don't kow how "reversible" anything may be in your case. Jon.


Thelma, March 20, 2001 - Hi, Does anyone have any information on combination therapy with ACE inhibitors and ARBs for CHF? I read preliminary data from 2 small studies suggesting that combination therapy might be helpful, and 2 large-scale studies are underway (Valsartan HF Trial and Candesartan in HF-Assessment of Reduction in Mortality and Morbidity). Does anyone have info? I'm sure it's on your site somewhere Jon but I just can't find it. Thanks, Thelma. cullingt@qwest.net


Jon's March 20 reply to Thelma's March 20, 2001 - Hi Thelma, It's actually not on my site. Like you, I'm waiting for some more definite results. Reports to date have been conflicting. There is an official recommendation from 1999 at www.chfpatients.com/faq/guidelines_99.htm. I'm hanging my hat on that until some more definite reports are seen on the subject. It seems every report disagrees with the last on this subject.
     PS. My daughter is home on spring break so posts may go up later for 2 weeks as I spend more time during the day with her. :-) Jon.


Vee, March 20, 2001 - Hi, I started metoprolol at 25mg twice a day last week and will be increasing to 50mg twice a day in 2 weeks. Does anyone know what the usual therapeutic dose range is for CHF? I looked in the PDR and another drug reference, and they give the dose range as 100-400mg daily for hypertension, angina, and to rest the heart post-MI. They don't mention use and dose for CHF. I guess that's a relatively new use for this old drug, or the jury's still out? maize2001@hotmail.com


Jon's March 20 reply to Vee's March 20, 2001 - Hi Vee, It is a very new use for an old drug. I haven't looked at FDA approvals to see if CHF has been officially added for Toprol XL but trial results are in. You can read some of them at www.chfpatients.com/coreg.htm#MERIT-HF2


Bill D's March 20 reply to Cindy's March 19, 2001 - Hi Cindy, My old cardiologist explained to me what the pictures meant. An angiogram is the most accurate way to determine what the EF is. After awhile your EF may be going up but in the end it will be coming down. I don't know what the white is or the blue brown spots. Maybe Jon with his accumulated knowledge can tell us where to go. <g> Bill D. billdog@gate.net


Jon's March 20 reply to Bill D's March 20, 2001 - Hi Bill, I honestly have mever seen cath (angiogram) pictures in color, so I don't know. Echo pics are in color but they are usually on videotape rather than stills. You can view heart pics at www.geocities.com/Hollywood/Highrise/1713/mfile.html and http://info.med.yale.edu/intmed/cardio/imaging/ for starters. I hope it helps. Jon.


William B, March 20, 2001 - Hi, With all these blood tests checking to see if you are in a dangerous area, where can you find the norm for what should be in your blood level? Some doctors will take the time to tell and show, while others just have the lab call you your results. When you have 2 or 3 doctors prescribing medicine, it seems they may need all the help they can get. The electrolytes, potassium, dig, and vitamin levels that ar normal I would like to find information about. Thanks, William B. willdet@juno.com


Jon's March 20 reply to William B's March 20, 2001 - Hi William, Potassium levels are shown at www.chfpatients.com/stew/minerals.htm#k. mEq is explained at www.chfpatients.com/stew/minerals.htm#meq. Hypomagnesemia (blood magnesium level less than 1.6 mEq/L) should be corrected. Target INR levels for those taking Coumadin are usually 2-3. A creatine kinase reading of 148 is normal. Normal digoxin level is 0.5 - 1.5 ng/ml.
     The normal range for PHC (homocysteine) is 5-15 micro-mol/L. Hyperhomocysteinemia is mild when PHC is 15-30 micro-mol/L, moderate when 30-100 micro-mol/L, and severe when it exceeds 100 micro-mol/L.
     C-reactive protein (CRP) is a marker of chronic inflammation and acute injury, associated with cardiovascular events. It is unclear whether the protein actually causes these events. High CRP level may predict cardiovascular events. The OPUS-TIMI trial study showed that patients who died had high average levels of CRP (4.03 mg/dL) compared to patients who survived (2.67 mg/dL). Mortality on follow-up was much higher in patients with CRP over 3.4 mg/dL. Another study showed no deaths in patients with unstable angina with CRP levels under 0.45 mg/dL.
     I hope this is a good start.


Mike J's March 20 reply to Tom's March 19, 2001 - Hi Tom, I begged my doctor to let me go on the Atkins' Diet and he said no. This was my internist and he said that the diet was not good for my cardiomyopathy. Even though I do well, have an EF of 42%, work out 4 days a week and work each and every week, he simply told me it messed up too many things. I often thought of doing it anyway but I am glad I didn't. The best way to lose weight is the old fashioned way, and with exercise if you can. Thanks for the post and have a great day. joye13@gateway.net


Ben B's March 20 reply to Bill B's March 19, 2001 - Hi, When I first was diagnosed I had a serious girlfriend. Mainly through my own obsession with my disease I basically communicated to her a lot of the fear that I had, by constantly talking about it and referring her to a lot of reading information which can be unduly frightening. It got to the point where our conversation was consumed by discussion of a hunk of muscle in my chest cavity. It is sometimes difficult to see this obsession in ourselves.
     Thankfully, after 4½ years I have a completely different perspective on this. After a lot of real study I no longer believe I am quickly on my way out and more importantly it doesn't really matter whether I am or not. I'm here now. Ironically, I ultimately discovered that her real reason for dumping me was my continued hesititation with regards to marriage, not any perceptions about my mortality. I'm not saying any of this applies to you but you asked for any similar experience, and that's mine. I've just started a new relationship and aside from any really necessary information, we don't talk much about my internal organs. I'm not going to make any of those mistakes again. bdbrinkman@juno.com


Jon, March 20, 2001 - Hi everyone, This warning really does not fit on any of my pages and I still don't have my mailing lists running so:

     "Reuters Health, March, 8, 2001 - As shown by the sudden death of a US traveler to West Africa, using the antimalarial drug halofantrine can be dangerous to people with heart abnormalities and those taking mefloquine to prevent malaria.
     The traveler, a healthy 22 year old, collapsed and died suddenly in West Africa. An autopsy showed a previously undiagnosed and unusual hypertrophic cardiomyopathy, say CDC researchers. 'The student began taking mefloquine to prevent malaria one week before leaving on July 5,' CDC researchers write. 'On July 12, he developed fever of 102 F (39 C), chills, headache and cough.' The student was diagnosed with malaria and treated with halofantrine, dirithromycin, and acetyl cysteine. He died 2 days later.
     'It was probably not a correct diagnosis,' Dr. Robert Newman said. 'People taking mefloquine correctly are protected against malaria, so the likelihood that he actually had malaria is very small,' he said. According to the CDC, 'the drug (halofantrine) has been associated with long QT interval in patients with healthy hearts and with fatal or near-fatal arrhythmias in some persons.' Halofantrine is chemically related to quinine and mefloquine."

Source: MMWR Morb Mortal Wkly Rep 2001;50:169-170,179. Jon.


Jan R, March 20, 2001 - Hi there fellow CHFers, I just got a confirmed diagosis today. I don't know how to react. I got an ICD a few weeks ago and thought that would fix everything. My v-tach was the big problem. I never knew I had dilated cardiomyopathy too and class 2 CHF. I have 2 beautiful kids age 2 and 3 and a fabulous husband. I know the stats and am wondering how I can feel more positive, how to look at my children without crying. Any supporters out there? Any experts on positivity? I will watch closely for your help, Jan. therowlands@att.net


Jon's March 20 reply to Vee's March 20, 2001 - Hi Vee, The FDA approved Toprol XL for CHF February 6, 2001. I am updating pages and just hit that article, to go on my Coreg page. :-) Jon.


Vee's March 21 reply to Jimmy's March 19, 2001 - Hi Jimmy, I don't have CAD but I do have high blood pressure and was also told that my CHF was caused by hypertension. For a long time my BP was really hard to control, especially systolic. It can still get pretty high sometimes as the meds start wearing off, or for reasons I still haven't figured out.
     Personally, I think the docs' interpretation was only part of the story. I think my blood pressure and heart rate also got so out of control because of all the stress hormones my body was pumping out in panic response to the cardiomyopathy. It took about 6 months on meds to settle this down somewhat. What also helped me was taking calcium supplements and getting more calcium (and of course less sodium) into my diet.
     What meds are you taking? From what I've read, ACE inhibitors and beta-blockers are the most effective classes of drugs for controlling hypertension, while calcium channel-blockers and diuretics are not nearly as effective. Hey, the good news is that many of these same meds are also core drugs used for treating CHF and those of us with high blood pressure are probably less prone to some of their side effects.
     I agree with the comments from others about finding another doctor! Believe it, there may not be a cure but there sure is "help and hope" for anyone with CHF! A good place to start is by reading a lot more here at this site. Jon has brought together a wealth of information and support for all of us. maize2001@hotmail.com


Ginger's March 21 reply to Jan R's March 20, 2001 - Hiya Jan, If you're looking for support you are in the right place. There is a treamendous amount of support here as well as information proving those old 5 year stats wrong. Do some reading here and you will see what I mean. If you have any questions or just need to talk, then just post them or e-mail one of us and I am sure everyone here will be more then happy to help you in any way we can.
     We are all scared at first. Sometimes an unexpected thump in the chest can even be scary but believe it or not, it does get easier to live with. A lot of us here have kids too. Come to a chat and talk, it does help. The chats are listed on the chat page and a lot of times we also have one on Thursday night, thanks to Sarah. Welcome aboard our leaky boat as Bill would say. <g> Don't take this wrong, but class 2 is lots better then some here. I myself am a class 2 right now. If you have the right doc, a lot can be done for you. There are new meds and trials going on all the time and Jon usually has most of them posted here at his site. So hang in there and talk to us and I promise you the support will be here for you. Read The Manual, it can help. I myself am going on 3 years of having this and some here for 10. Stay well.
     Now for one of my famous questions: Has anyone ever gone to get up in the morning and out of the blue find either one or both legs so stiff ya didn't think they would ever move, let alone walk? Is this a possible side-effect of Lipitor? So far this morning is the first time it has happened, but it hurt! If it happens again I will question my doc at my appointment Friday. Remember me saying I was thinking of changing docs due to things I didn't like seeing going on? Well, My insurance changed networks and on this one is a huge CHF clinic about a half hour drive away and they are also doing the Companion trial. So I have decided to at least get peace of mind by going there for a second opinion and keeping an open mind about changng to them.
     My doc admitted from day one he has limited experience with cardiomyopathy caused by virus but as long as I was stable that was okay. However, with my numbers dropping and my fatigue getting so bad I am ready for Jon's advice of seeing what a CHF specialist can change. We all know it's hard to change docs so I am going to start out by just getting a second opinion at this CHF clinic instead of my neighborhood cardiologist. I got in the rut of keeping him because he was close and I trusted him untill the last couple of months that you all have heard me complain about.
     Like the Vo2 max test, here we are 2 1/2 months later and it still hasn't happened - sigh - so I am going to check out the advice of this CHF specialist and see. Thanks for listening. See Jan, you can post any concern you have or just vent here if need be. I have done enough of both! :-) You will also quickly make some good friends in the same leaky boat. <g> Actually it's Bill's boat but he lets us ride in it! <lol> Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Walter K's March 21 reply to Vee's March 20, 2001 - Hi Vee, I don't know what the usual dose for Toprol XL is but I am on 25mg per day. I am also on 50/12.5mg of Hyzaar (an ARB-diuretic combination) twice a day as well as 40mg of Lasix daily. This sounds like a low dose of Toprol to me, primarily because Toprol does not come in less than 50mg tablets but my CHF specialist is happy with it and says she has heard a 25mg pill will be available shortly. I will also be interested in seeing what dosages others may be on. I imagine it would vary depending on the other medications being taken. hknoth@magpage.com


Jon, March 22, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Nutrient Stew - Herbs
  2. Nutrient Stew - Vitamins
  3. Coreg & Beta-blockers
  4. Heartbytes
  5. Ace Inhibitors
  6. Transplant Update
  7. IV Drugs For CHF

Jon.


Stephanie, March 22, 2001 - Hi, It is always nice to come back here and read what everyone has to say. I don't feel so alone with this whole thing. Anyway, my main reason for posting is that I just finished reading Dr. Silver's book, "Success With Heart Failure." Tremendous! moodystephanie@hotmail.com


Patrick M, March 22, 2001 - Hi, There are currently 146 clinical trials for CHF patients scheduled through out the US in 39 different states and a couple in Alberta, Canada. If anyone would like to inquire about one in their area, go to Centerwatch at http://centerwatch.com/patient/studies/area1.html for a listing of all the cities and phone numbers for contact at each location. I just signed up for the one at Loma Linda Heart Institute in southern California. This site also lists the requirements that you must meet in order to qualify for a particular clinical trial. NarleyHarleyGuy@webtv.net
 
Jon's note: Centerwatch refuses to consider any of my pages for listing in their Patient Resources section. Drop them an e-mail about it while you're there if you're so inclined


Lisa H, March 22, 2001 - Hi everyone, I read regularly and have not posted in a long time. Due to insurance changes I have to use a new CHF specialist. I have been referred to Dr. Clyde Yancy. He is supposed to be the doctor in Dallas, Texas. Has anyone here heard of him or been his patient? I am anxious because I cannot see him until May. Thanks. wthall53@aol.com


Cheri S, March 22, 2001 - Hello everyone, I hope you are all feeling well. I have a couple of questions that I hope someone can help me with. I have low iron. I take an iron tablet 3 times a day but my iron stays low. Does anyone have any suggestions on how I can get my iron up? Also, my good cholesterol is very low. Every time I ask my doc about how I can raise it, she just tells me to exercise. Is this the only way? Any ideas you could give me would be very helpful. I'm new at all this so mostly I just read the new posts and learn as much as I can. Talk to you later, Cheri S. cmschley1@home.com


Sharon P's March 22 reply to Walter K's March 21, 2001 - Hi, One of the topics of conversation at a CHF support group I attended yesterday was Toprol. I have CHF, DCM, and an ICD. The CHF nurse practioner who facilitates our group indicated that the dosage - to equal the benefits of Coreg - should be 200mg per day. I'm interested in this topic as my husband was diagnosed with hypertrophic cardiomyopathy a few days ago. My concern is that he sees the same doctor whom I fired because I couldn't get any information or emotional support from him. Now I need to talk him into switching to the same CHF specialist who manages my care. Blessings, Sharon. sparker103@home.com


Dana J's March 22 reply to Walter K's March 21, 2001 - Hi Walter, I take 200mg of Toprol XL every day; 100mg every 12 hours. I started out taking 25mg every 12 hours; my doc told me to break the 50mg tablets in half. I don't know if it's just me but it seems like after a few months the Toprol stops helping and whenever I mention it to my doc, he ups my dose again. I'm afraid to say anything to him anymore - pretty soon he might make me eat the bottle! Dana. danajj@excite.com


Charles K's March 22 reply to Vee's March 20, 2001 - Hi, Just to let you know Vee, I've been on Toprol XL for almost 2 years at 200mg once a day. My CHF specialist told me that 200mg is the goal for CHFers like us.
     Here's a quick update on myself, I always read but post rarely: During a check-up in January we found my EF has fallen to the low 20s. My doctor for the first time has brought up the possibility of a future heart transplant, which has me kind of worried and scared. the_bohemian@hotmail.com


Marsha H, March 22, 2001 - Hi, I am looking for information about the recommended frequency for testing blood levels of electrolytes and the drugs we actually take to be sure we are in range and not toxic. I don't know where to begin to look and would appreciate any suggestions. I am in the process of getting a second opinion for diagnosis and treatment but it's another month down the road. I have had potassium deficiencies in the past (accidentally discovered but serious) that occurred when I was not needing to be on heart drugs, so I am concerned about being on all this stuff and not knowing how my body is actually using it. hazelwood_w-m@juno.com


Jon's March 22 reply to Marsha H's March 22, 2001 - Hi Marsha, You should have blood and urine tested:

  1. every 90 days, routinely
  2. whenever the dose of a drug changes, testing should be more often for awhile
  3. if your CHF becomes unstable, testing should be more often until you stabilize
  4. if you develop another serious illness, your testing might need to be more frequent
  5. whenever a drug is added to your therapy, extra testing is necessary for awhile
  6. whenever a drug is dropped from your regimen, extra testing is necessary for awhile

Jon.

Jon, March 23, 2001 - Hi, Randy B, I need your e-mail address for your bio. Thanks, Jon.


Joyce, March 23, 2001 - Hi, I have CHF and I am a diabetic. I have a hard time taking care of both. I have gained a lot of weight due to the insulin I take and my inability to exercise. Sometimes I am too tired to walk from one room to another. I am very depressed. Is there anyone out there who is trying to control insulin dependent diabetes and CHF at the same time? I use to weigh 125 two years ago and now I am at 180. Please anybody, help me if you can. joie6800@aol.com


Ben B, March 23, 2001 - Hi, I just read that Immunex is stopping the Enbrel trials because it doesn't work. Oh well, at least I don't own the stock. bdbrinkman@juno.com


Cristina L, March 23, 2001 - Hi, I am on Toprol too. My daily dosage is 150mg. I tried 200 but my blood pressure dropped too low. Equivalent to Coreg, recommended adult dosage is 200mg (really 208 mg). My good cholesterol is also too low and I've been told the same: "exercise." It doesn't seem to help. I would also love to hear if someone else knows how we can raise it. rjlisa@bellalantic.net


Ginger's March 23 reply to Jon's March 22, 2001 - Hi Jon, I am glad you posted on the frequency of tests. It just makes me realize that my deciding to go to a CHF specialist for a second opinion is the way to go. I am having blood work done today but it has been many months since any was done and it is just for lipids. When he changes my meds, he does not do any tests, he just makes me come in more often for check-ups. Who is supposed to do all this blood work and urine tests - your cardiologist or PCP? I'm just curious. As I mentioned before, due to a new insurance network I have to get all new docs except the cardio doc because he is on the new network. I am to the point where I don't even know what I need to look for in a new PCP. All suggestions welcome. Stay well, y'all. Hugs and prayers, Ginger. angelginger@aol.com


Jon's March 23 reply to Ginger's March 23, 2001 - Hi Ginger, I used to have them done by the lab in my CHF doc's building but now I have my PCP draw the blood and send it to the lab he uses for everything. The lab gives him the results and he calls me at home and reads them to me, number by number. The drive to my CHF doc is too much, is all. It doesn't matter who draws the blood and takes the urine as long as your CHF doc is in touch with your PCP (if the PCP does them). The best thing is to have a copy of the results mailed straight to you and you give them to your CHF doc yourself. In my opinion, that is an ideal solution.
     I have chopped 10 docs off my possible list looking for a new PCP myself. It is intensely frustrating. I decided I want a PCP who does not treat heart failure patients. My CHF doc is excellent and I trust him, so I do not want another PCP like my current one. He is an internist and treats CHFers but he is not nearly as on the ball as my CHF specialist and has some ideas that are out of date - I confirmed that by writing down his answers to some fairly advanced questions about CHF treatment and sending them to my CHF doc. My CHF doc's reply matched that of other CHF specialists to whom I spoke. They all agreed with each other and all disagreed with my internist, thus my decision to get a PCP who doesn't think he knows a lot about CHF treatment. FWIW.
     Honestly, I would like some suggestions about the doctor hunting process myself. It's a real booger. Anyone,...? Jon.


Mary A, March 23, 2001 - Hello everybody, I am so thankful to have found this site! I have been diagnosed with HCM for 5 years, steadily worsening, and now have uncontrollable atrial fib and lots of meds for that. The meds work for a few months, then decrease in efficiency and then the dosage gets increased. Whenever I end up in the emergency room the docs ask me if I have CHF but the fact is I don't think I've been tested for it. My last echo was almost 2 years ago. However the symptoms are all there, including random swelling of my feet and legs, pitting edema and shortness of breath. I've forgotten what it's like to sleep lying down. The smallest amount of exercise - sometimes even standing at the sink and doing dishes - wears me out.
     Now, after all those preliminaries, what kind of questions do I ask the cardiologist to get him to determine if I do indeed have CHF? My EF a year ago was 30% but my condition has also worsened since then. So much to think about. I'm also trying for disability and am feeling very pessimistic about my chances. The lawyer says that because my heart isn't enlarged I probably won't win. What does that mean? How can they determine if my heart is enlarged when I haven't had an echo in so long? I've never had a stress test, never had any other tests than routine EKGs in the ER, an electrophysiological study in 1997, and echos. I'm totally disgusted with the quality of care and inattention that I've been given, and fed up with the whole medical community.
     After reading this site, I feel much stronger about going in to the cardiologist armed with some good information. I do tend to get intimidated by doctors, something that works against me. The whole process makes me so emotional that I have trouble being rational with them. I ask for all your prayers in my disability case. I'm raising children and I really want to be there for them as long as possible. kactus@voyager.net


Jon's March 23 reply to Mary A's March 23, 2001 - Hi Mary, I don't know nearly as much about HCM as I should. Be sure to use the links listed at my Social Security Disability page to find help with your Disability quest. Also, be sure to look through the HCM Association and see what help they can offer.
     I'm not sure how stress testing is used in HCM. It seems offhand to me that it migt be dangerous due to a higher risk of Sudden Cardiac Death. If you want to be sure whether you have CHF, you already are. <g> Remember that CHF is a set of symptoms, not an illness. If you have the symptoms - due to improper heart function of any kind - you have CHF. A BNP blood test would validate it clinically, I suppose. I doubt that SSA is up to date enough to recognize a BNP test's results as valid yet, though. Jon.


Jon, March 23, 2001 - Hi, Someone mentioned chest x-ray for determining CHF and I wanted to check up on it. I have the following on file from last year (I did simplify the language):
 
Source: Postgrad Med J 2000 May;76(895):289-91
Title: Unreliability of cardiothoracic ratio as a marker of left ventricular impairment: comparison with radionuclide ventriculography and echocardiography
Authors: Clark AL, Coats AJ
PMID: 10775282
UI: 20237872

     "The size of the heart measured by chest x-ray is often used as a screening test for the presence of CHF and for estimating its severity.
     We compared cardiothoracic ratio, EF from MUGA and left ventricular size from echo in 91 patients (average aged 60) with chronic CHF.
     There was a weak relation between cardiothoracic ratio and EF from echo. No measure of left ventricular function correlated with exercise capacity (measured by Vo2max). For the group of patients with a normal fractional shortening (17 patients), the left ventricle was enlarged in all but two. The two patients with normal heart size had a low EF. For the 12 patients with a normal cardiothoracic ratio, the left ventricular end diastolic size was only slightly smaller than for the rest.
Conclusions Chest x-ray is not a reliable indicator of the degree of left ventricular dysfunction. Echo and MUGA are more appropriate for testing heart function."

Jon.


Walter K, March 23, 2001 - Hi All, Well, you are all on much more Toprol than I am. How much and which ACE inhibitor or ARB are you on concurrently with Toprol? Hopefully my CHF doc knows what she is doing having me on such a low dose of Toprol. hknoth@magpage.com


Lee R's March 24 reply to Mary A's March 23, 2001 - Hi Mary, Please do not feel discouraged about trying for SSD. Sometimes it takes a couple of tries but if your doctor (cardiologist or CHF specialist) is willing to write a letter for you saying that you cannot work, with an EF of 30% you should certainly qualify. My EF was 29% and I was refused at first until my doctor worded his letter more strongly. I also wrote a letter and quoted all sorts of statistics and stuff from the Merck Manual, etc, about why I could not work and how CHFers just do not get better. With good meds and some exercise, my EF has gone up but that's only a number.
     Please fire your lawyer and if you have to, get another physician (as Jon would advise - a CHF specialist). If you need ammunition for a letter to SSD, let me know and I'll send you a copy of the one I sent. All states are different and I realize you do not need this aggravation but you deserve to receive the very benefits you have paid for all these years. Take care Mary, and I do hope with all my heart that they get to the bottom of your heart problems.
     To Jon, thanks so very much for the great info on blood work. I called my PCP today and I definitely agree with you about a PCP who is not going to mess around with my (CHF) cardiologist's instructions. God Bless to all! Lee. LeeJRoush@msn.com


William B, March 24, 2001 - Hi, I was blessed in going to the doctor I am under now after 3 others that kept treating me for stomach problems and what I thought was a spastic colon acting up again. He took one look at me and sent me to the hospital for a series of heart tests and called a heart doctor in to treat me. He is testing my warfarin and other blood level tests that his clinic mails me the result to take to the other doctors also. After I was tested for heart problems he then checked my gallbladder and other tests to be sure there was no other internal problems. He also suggested that a second doctor's viewpoint would be good to seek. I have been well pleased with him. I was a little disappointed in the heart doctor in that he did not know as much about Coreg as I thought he should. The second doctor at Kirklin Clinic believes the results are worth the risks. He believes that you try and then check the results for benefits. His reasoning seems to be if it will help, take it. I going to start on Coreg probably in April. The doctor finally gave me a diagnosis of idiopathic DCM and something else, I forgot what he said. A notepad might be good to take next time. William B. willdet@juno.com


Bill B's March 24 reply to Ben B's March 23, 2001 - Hi Ben, I just want you to know that my girlfriend and I have been talking a lot about your response. We both really appreciate you and your caring information. We still talk about my CHF but it does not dominate our conversations any more. We talk about a bright and happy future together. Thanks Ben for sharing. Thanks to all and God bless, Bill B and Carol too. fedx44@yahoo.com


Robert J, March 24, 2001 - Hi, I've been reading here for some time now but this is my first post. I have a long story on myself but don't want go into that now. I have CHF along with lung problems and spin trouble. I had a heart attack in June of 2000 with triple bypass. I saw a few posts here about their good cholesterol being low. My HDL was -10 after my MI and now it is up to 42. What it takes is this exercise and more exercise and then some more. You should exercise and get your heart rate up and keep it up for 30 minutes and if you can do that twice a day then that's good. If not, one at the best. You have to change your eating habits too.
     I am on a drug call Niaspan and it is helping me. I what to know if anyone else has been on Niaspan and what results they have had with it. Jon, you have a great thing going here and I want you and all the others here on your pages to know that I pray for each of you daily. God bless all of you, Robert J. rjett@vvm.com


Leland Y, March 24, 2001 - Hi guys and gals, I just got back from my cardiologist today - my second year check up. Everything is okay, with no changes in meds, just a reprimand for doing too much stuff on the side. I had a little hard time this week. Last Thursday was sunny and warm (about 75° F) and I went outside and cultivated my rose garden. After doing about 10 feet of the planter, I really got woozy, dizzy, weak, sweating and getting ready to pass out, which I eventually did when I got back into the coolness of the house. Squatting and using the trowel for those 30 minutes was a satisfying chore but I am now paying for it. I have been down more than up since last Thursday. We guys never will learn. Luv and salutations, Leland. LLYee@surfside.net


Ginger's March 24 reply to Jon's March 23, 2001 - Well Jon, I don't think you helped me much in looking for a PCP! <g> Actually, you and I are the opposite. My cardio doc is also an internist and since I have no PCP right now he has been the only doc I see. So maybe I should make him my PCP and the CHF specialist I am going to go see my cardio doc; although I would imagine the cardio doc is going to want to know why I went for a second opinion. <g>
     The chest x-ray thing was a question I asked awhile back. Yesterday when I went I asked him about gaining 3 lbs in any given day and losing it the next day so he asked if my ankles swelled. I told him only sometimes, not often. The swelling is not visible but it sure makes my pants tight. He did a chest x-ray and came back with, "Your heart looks normal." <lol> An EF of 40% is not a normal heart. Anyhow, he said my EF was high enough to keep me from retaining fluid. Yeah okay, you be me and see what happens for a week if I am not careful with the salt.
     He scares me in that he does not seem very concerned about the EF drop from 55 to 40 and he assumes that I feel the same. He never even brought up the subject of the Vo2max test he wanted to do 2 months ago after I ended up in the ER with SOB for the first time. It's not my problem he has problems with little office help. Well I sure hope someone else out here has ideas on what to look for in a PCP. It's tough. I didn't know PCPs could treat CHF either. I look forward to hearing what someone has to offer in PCP hunting. I have a feeling it's not going to be easy or fun. Jon, your next page needs to be a guide on how to find a good PCP and what to look for! ;-) Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon's March 24 reply to Ginger's March 24, 2001 - Hi Ginger, That is one page that will never happen! Our current doctoring "system" is still set up the way it worked in the 1950s when you had the same doctor all your life and just accepted whatever he told you as truth. Now we are armed with much better information about our care possibilities but there is no good way to find out any helpful info about a doc. Like I said, I have been through 10 "candidates" and still haven't found myself a PCP.
     The attitude you mention is my number one concern about having a non-CHF specialist treating me. They just don't keep up. Gino sent me an outstanding article from the Eurpoean Heart Journal by the Working Group On Cardiac Rehabilitation & Exercise Physiology and Working Group on Heart Failure of the European Society of Cardiology on CHFers and exercise. It points out that numbers are not a prime indicator of how well a CHFer is or how well he can function day to day in real life. It also points out that exercise testing must be done in certain ways different for CHFers than others to get meaningful results.
     My internist focuses primarily on numbers, thinking that any EF over 40% means the patient should be "okay." Like you said, Ginger, he can bite that! I am in far worse shape than I was with an EF of 13%. I know part of that is poor physical fitness but I also know that this is only a small part of the problem. I just can't afford to trust my care to a doctor who doesn't understand the changing flow of facts about heart failure "reality." By the way, Gino mailed me hard copies of this from Italy because he considers this so important and after reading it - I agree with him. I plan on getting some version of this up on my site very soon but I don't have OCR software for my scanner so it could take awhile.
     Anyhow, I am having no luck doctor-hunting either and I am also worried about a doctor who draws "lines" at certain numbers and shrugs off problems in patients above those numbers. It just cannot be a sign of good doctoring. Jon.


Jenny L, March 24, 2001 - Hi, I have been recently diagnosed with CHF and dilated cardiomyopathy. I am on Lasix, metoprolol, avapro and digoxin. For the last couple of days I have been retaining a little more fluid than I had been. I know I did have too much sodium in my diet for a couple of days. Should I call my doctor? I did read that sometimes people take extra Lasix when this happens. If this would be done, I'm assuming that it would have to be okay with the doctor. Is there anyone who could give me some advice on this? Thanks. RedAutumn@webtv.net


Donna Z's March 24 reply to Joyce's March 23, 2001 - Hi Joyce, Yes, I have CHF and diabetes. Yes, it really stinks but what are you going to do? Because of Coreg my blood sugars have gone way up and I had to go on insulin, I'm still working on adjusting insulin levels and yes, you feel hungry all the time - I just don't eat. The other thing I found out is that blood sugars make you feel tired so if you can try and take a walk, it will bring your blood sugar levels down a bit, which will help with you being tired all the time. I hope this was somewhat helpful, Donna. dzak@worldnet.att.net


Phil M, March 24, 2001 - Hi, In December, I saw my doctor about some breathing and other problems I was having. He suggested at the time that I was showing symptoms of CHF. I am an accountant and at the time I kind of blew him off because of tax season coming and not feeling like I had time to take the necessary tests that he wanted. I just wanted a quick fix to keep me going. It is now 3 months later and after doing some research I believe that he was correct in his analysis of my symptoms. I know I need treatment and just want to hold on for the next 3 weeks and get the tests I need to get a definitive answer on this issue. Can somebody tell me what tests I really need to get done, are they painful, etc,...? I don't want any needless tests. I also have sleep apnea and panic disorder. I know this info is in The Manual but I would like some more first hand experience on this matter. Any help would be greatly appreciated. Thanks, Phil. pmerhley@venus.net


Ernest D's March 24 reply to Robert J's March 24, 2001 - Hi, In regard to low HDL, the only way that I could raise mine was with Niaspan and Zocor but I had to stop the Niaspan when my Coreg was increased because of gout. It seems that Coreg and Niaspan both cause gout in susceptable people; and I just happen to be one. The Coreg alone at dosages above 6.25mg twice a day gives me enough trouble so that I must be very careful not to become dehydrated by taking too much diuretic but then what else is there to do when you swell up? This whole CHF situation is a Catch-22 proposition but I just keep on truckin'. Oh yes, I am now a class 7 on the heart transplant list, at least until June when I go back to the clinic for retesting. Hopefully I will at least stay the same and not be any worse. Thanks to all of you for all the great questions and answers, Ernest D. bornos@worldnet.att.net


Tom W, March 26, 2001 - Hi Ginger, Jon, and everyone, I am very pleased with my PCP. In selecting this person it is critical that your personalities match or you will be not be happy with him. For those of us who are strong-willed and opinionated the doc has to listen but at the same time I need to be reminded of the consequences of my actions if I fail to follow his suggestions. They need to humor us at times and boot us in the rear at others. <g> In other words, they have to care about us as individuals.
     It is also important that we can tolerate their office staff and their office procedures as well as all the the other reasons that folks on this forum have suggested finding new doctors. He must be willing to refer you to specialists. Again, except a couple of times when I was in the hospital I usually made this final decision. I have on occasion refused to see a specialist based on the fact that I would rather be treated by someone with less knowledge but who cares, than trying to train someone new. :-) Finding someone to put up with my idiosyncrasies is not a pleasant task. Thus, my PCP is much younger and should be around much longer. Tom. tew4515@yahoo.com


Judith's March 26 reply to Joyce's March 23, 2001 - Hi, I am also an insulin dependent CHFer. I have been on insulin 5 years. You're right about it being hard to control. I'm taking Actos and Glucotrol in addition to insulin and it has helped a lot. I have been on insulin for 5 years and my weight problem began after I was hospitalized 10-99 for CHF. I believe it is a combination of all the meds, lack of exercise and quitting smoking. The word "tired" does not begin to describe the way I feel most of the time. I'm on Paxil for depression. That has helped my crying binges a lot. judithbug@msn.com


Julie G, March 26, 2001 - Hi, I need to find a CHF specialist. I live In Quincy, Illinois. If anyone knows of one in this area please let me know. Thank you, Julie. lgoehl@dstream.net


Doris R, March 26, 2001 - Greetings all, I have another dieting question. Has anyone read "Eat Right For Your Type" by Dr. Peter D'Adamo? He's also written "Cook Right For Your Type." According to Dr. D'Adamo, certain blood types should eat a certain diet to help with many health conditions and control your weight. I need to lose some weight for real. Any help would be appreciated. I would like to find a way I could eat for as long as I live, not a fad diet or just eating to reduce and then going back to my old eating habits. Is there anything to this diet and is it safe for people with our health problems? Kindness, joy, love and happiness, Doris R. Roughgoing@aol.com


Jon, March 26, 2001 - Hi everyone, The Doctor's Page will be updated tonight. Dr. Silver was at the ACC convention in Orlando last week but has sent me quite a handful of stuff to put up. I'll have it up by tomorrow (I hope). Jon.


Jon, March 26, 2001 - Hi everyone, I asked my CHF doc about the approriate dose for Toprol XL in CHF and here is what he said (agreeing with previous posts): "Target doses are set by the protocols used and the results of clinical trials. The MeritHF trial targeted Toprol-XL 200mg as the chronic dose. In that trial 93% of patients tolerated 100mg and the average dose was 160mg. The dose issue is very important, particularly when questions about the use of other beta-blockers for CHF arises. Even if a particular beta-blocker is potentially effective for CHF, without a clinical trial proving effectiveness the target dose is not known, nor is the safety of going for the target dose." Jon.


Maureen Mock's March 26 reply to Lisa H's March 22, 2001 - Hi Lisa, You are with a top CHF doctor as well a respected transplant doctor. Yancy was for years at St. Paul's Medical Center, where he performed countless successful heart transplants. He is now at Baylor University Medical Center, where I am being evauluated for transplant. I personally met one of his former transplant patients who absolutely sang his praises. Word is that besides being tops in knowledge, he is also very caring and down to earth; Well, not really - he stands at least 7 feet tall so be prepared to look skyward! I would like to know what you think when you meet him. Keep me posted. lilly383@home.com


Peggy's March 26 reply to Brandy L's March 19, 2001 - Hi Brandy, Since my husband was diagnosed with DCM and CHF in November, he has been on Coreg. His doctor started him on 3.25mg twice a day and slowly raised it. He is now on 25mg twice a day. I have to say that he has not had one complication with this drug. He is doing wonderfully on it and it actually makes him feel like there is nothing wrong with him. There are many people out there who have problems with Coreg but keep in mind that there are many who are doing great with it also! His attitude has been very positive and I think that has gotten him where he is today. Good luck and don't think twice about trying Coreg! Peggy. RyoungAngora4683@aol.com


Vee's March 27 reply to Jon's March 26, 2001 - Hi Jon and everyone, Regarding Toprol, I had the impression from my doc that target dose was based on patient's weight, as with Coreg. Was that part of the trials? Also, I'm taking Toprol in part to lower my blood pressure and heart rate. It replaces another med I was on for that reason. Does this mean that if my BP isn't adequately controlled with Toprol at the target dose that it should be increased? Or another med added? Sorry if this isn't making sense. I think my brain may have slipped off into the beta-blocker fog zone. maize2001@hotmail.com


Luc D, March 27, 2001 - Dear friends, Yes, it's me again, the Belgian. I saw my cardiologist on Friday and he has given me other medications. The new drug is Cozaar. I really don't know what this new med is. Can you help me out? I cannot find much in the Internet either. My ejection fraction is 35% and the cardiompathy is still in my heart and cannot be cured. I also want thank Jon again for keeping this site alive! Greetings to all of you from Luc! luc.deseins@planetinternet.be


Milt, March 27, 2001 - Hi to all, I have DCM and CHF diagnosed in 1996. I am on all the standard meds: Coreg, Cozaar, Lipitor, Demadex and Altace. In June of 2000 I was diagnosed as a type 2 diabetic. I believe it is caused by the meds. I read an article in the Tampa Ledger about a diet called "The Glucose Revolution, The Authoritative Guide To The Glycemic Index." The book explains how food breaks down into glucose at different rates. The faster it breaks down, the higher the glycemic number. Foods in an index of less than 55 are good, foods 55 to 70 are okay and foods higher than 70 are to be avoided. Along with this, low fat intake and exercise, my sugar stays in the normal range. I have also lost some weight. White flour seems to be the big hitter to avoid all the time. Some sugar is okay. spaz_1@msn.com


Tom, March 27, 2001 - Hi, I was wondering just how important the right climate is for CHF patients. I have read several posts from numerous patients from a variety of sites that their doctor highly recommended a warm, dry climate. Most of them also reported a marked improvement in their condition. Is there anything to substantiate this? Tom. tome44@accesstoledo.com


Tracey C, March 27, 2001 - Hi everyone, My hair has started to fall out, not in clumps but definitely an increase. Has anyone else experienced this? I suppose it could be stress-related but I was wondering if it may be a side effect of one of the meds. Thanks! Tracey. nuttytandt@aol.com>


Walter K's March 27 reply to Jon's March 26, 2001 - Hi Jon, What dosage of ACE inhibitor or ARB goes along with the 100 - 200mg of Toprol XL? hknoth@magpage.com


Jon's March 28 reply to Walter K's March 27, 2001 - Hi everyone, I didn't bother trying to answer any questions yesterday because I got zero sleep Monday and my brain was on vacation Tuesday. It always is after skipping an entire sleep period. I have some things to do today (it's still my daughter's spring break) so I don't know when I'll be focused entirely here.
     Walter, you follow the same target doses. The trick with multiple drugs is getting you to that target dose. So whatever target doses showed benefit in trials, that will still be your target dose. Remember that once a drug's safety and effectivess is established (phase 1 and 2 trials), most phase 3 trials then use CHF patients who are already taking best current therapy - meaning the same pills most of us take. I hope that helps. My own CHF doc says if a patient has problems starting Coreg - for example - he cuts back their ACE inhibitor dose, slowly raises Coreg to target dose (if tolerated) and then slowly re-raises their ACE inhibitor dose back up to original levels. It's slow but he says patients get full benefit without any problem if their doctor is on the ball during the process. He does not hesitate to chew on docs who don't do it right either, believe me. It's something to see. <lol> I wish I could find a PCP who doctors the way my CHF doc does. Jon.


Dana J's March 28 reply to Tracey C's March 27, 2001 - Hi Tracey, My hair is doing the same thing, not exactly clumps but up to 10 strands at a time from the same spot. It started about 10 weeks ago. Luckily, I had really thick hair to begin with but I'm really starting to worry about it. I'm even having nightmares when I sleep about being bald. I thought maybe it was stress but I've been a lot more stressed than this and it didn't happen before. I asked my doc if this could be a side effect and she said no. Dana. danajj2@aol.com


Donna Z's March 28 reply to Milt's March 27, 2001 - Hi Milt, What type of medication are you on for your diabetes? I was on Glucatrol XL and it worked until I was on Coreg for awhile. When I was switched from Lasix and K-dur to spironolactone (Aldactone), it seemed like my blood sugars went way up and I am having a very hard time getting them under control even with insulin. This is becoming very frustrating. I'm not as concerned about dying from CHF but I am starting to get very concerned about the fact I am having so much trouble getting my blood sugars back to a normal range and that will be my downfall. I have been to a endocrinologist (I call her the endocrinologist from Hades) with no help from her. All she did was yell at me. My CHF specialist does not want me on Glucapahge. She just doesn't like it so that is not a option. Is anyone out there using Actos or Avandia with good results? Donna. dzak@worldnet.att.net


Cheri S' March 28 reply to Tracey C's March 27, 2001 - Hi Tracy, I had the same thing happen to me a couple of months ago. My hair didn't fall out in clumps but I noticed a lot of hair coming out when I brushed it. Also, when I would shampoo I would lose a lot of hair. I think it had something to do with my medicine but I never could find out for sure. My hair is starting to look better and it has stopped falling out. Maybe it's because my system is getting use to the drugs. Good luck to you, Cheri S. cmschley1@home.com


Claire E, March 28, 2001 - Hi Jon and everyone, I hope my post finds you all feeling well in body and mind. Just a quick word on my PCP. I guess I lucked out in this area. My PCP and CHF doc work very well together. He treats me for non-cardiac things such as a cold (which we all know can be a catastrophe for the likes of us), a tummy bug (all of you with small school age children can relate, ugh!), an infected spider bite, etc. He is very aware of my cardiac situation, is in regular contact with my cardiac doc, draws my labs and has copies sent to my cardiac doc, etc. He takes my cardiac situation into consideration at all times but does not and will not touch my cardiac meds. If he has a concern or a suggestion he calls and discusses it with the heart guy and they make a decision together, with my approval, of course! I am very opinionated where my own ticker is concerned.Can you tell? <g> It is a situation that works well for us, at least for me; they probably think I'm a pain in the you know what!
     My PCP is really good about my overall health picture of diet, stress levels, etc. In fact, he taught me how to meditate, which has been an invaluable coping tool for me since I got CHF. I am sure we looked and sounded wierd to his office staff with the lights dimmed, going "Om, om, om" but I really feel like he cares. My cardio guy is very good and listens to me, asks a lot of life style questions, etc,..., but if I just need to talk and I feel anxious, I go to my PCP. Keep searching guys, there are good ones out there! Peace and love, Claire E. weezey62@aol.com


Claudia, March 28, 2001 - Hi, A few days ago my husband said he heard of a new drug put out by Scios called Natrecor and a new heart assist device from Medtronic. I did not see this news but he said they both sounded very promising. I am not sure if he got all the information correct, and wonder if anyone else saw this, or has more information.
     I am also wondering how the increase works going from 25mg Coreg twice a day to 50mg twice a day. Is it slowly increased? I have to start this at the end of the month. I am wondering if I will be exhaused all over again. I would like to hear from anyone who has done this increase. I hope everyone is having good days. God bless. CMSchm@aol.com


Jill M, March 28, 2001 - Hi, This is basically just to touch base again and I mean it when I say "base." It was good to hear from Luc in Belgium again - hi Luc. I re-read my old Who's Who entry - it really needs updating - and I recall how scared I was going on 4 years ago when I was first diagnosed. Part of it was that my poor husband John was so ill and I was terrified of dying first. There is life after bereavement and life with cardiomyopathy. I have wonderful friends, my condition is compensated and I feel very blessed, even though my EF is still in the low twenties, despite maximum dose of Coreg et al. Lots of love from Jill in South Africa, who has one of Bill D's best bunks in his leaky old boat because I checked in when there were still plenty available. jillm@iafrica.com


Milt's March 28 reply to Donna Z's March 28, 2001 - Hi to all, I take Glucatrol XL and Glucophage. My dose of glucophage has been lowered From 1500 per day to 500 per day. Milt. Spaz_1@msn.comJon.


Linda S' March 28 reply to Donna Z's March 28, 2001 - Hi Donna, I have been taking Avandia for several months. It is keeping my glucose levels in my target range. Of course I'm taking it with glucophage, but I was taking it with glucotrol. It was causing low blood sugar reactions so my doc put me on glucophage. I guess it is just a preferance of the different docs. Mine is not a CHF doc. I don't have one anywhere near me. I sent you a message to your e-mail address but I'm not sure if it went or not. Hang in there and God bless. linretta@hotmail.com


Nadine, March 28, 2001 - Hi, I heard a doctor speaking on the radio last week who claimed that Coumadin can cause hair loss. The program was about unwanted hair loss. Has anyone else heard about this? Also, my husband Niels, is having his Vo2max test tomorrow, March 31. Even though his EF is up to almost normal, he cannot tolerate any level of activity higher than "couch potato" (not intended to be a put-down) and emotional situations are even worse - he almost passes out. So I hope this test gives us some answers. I'm still worried sick about him. theplayer10@yahoo.com


Sid K, March 29, 2001 - Dear Friends, I was diagnosed as having CHF last December. I am 69 years old. I presently take 10mg Altace, 0.125mg digoxin, 13.5mg Coreg, and I was taking 2mg bumetanide daily until recently. On the above dosage I have developed diarrhea that occurs 6-7 times a day. I have never had these symptoms prior to taking these drugs. Can anyone tell me of a similar experience? How was it eliminated? Many thanks, Sid Kleiner. SKleiner@aol.com


Wayne S, March 29, 2001 - Hello everyone, It's been awhile since I have posted. I hope everyone is doing well. I went to the hospital with shortness of breath. I was admitted and put in ICU because of very unstable blood pressure. I was given dobutamine and my heart reacted very badly to it. It skipped several beats (PVCs). I was given nitro twice and a morphine shot before it was in control again. Needless to say, it scared me very badly.
     I am implanted with a defibrillator but it did not go off. It seems that I had blood pressure problems because of Coreg and Accupril together so each was reduced. Now I am wondering if I will lose the benefit of these drugs. My Coreg dose is 6.25mg twice per day. My Accupril dose is 10mg per day - half of what they were. My blood pressure has stabilized at 95 over 65. I feel somewhat better. I went to get my defibrillator checked and they found 2 incidences of tachycardia and have put me on amiodarone. I sure wish I knew if I am getting worse or better. Only one knows that. God bless everyone, Wayne S, DCM and CHF. frances@blkbox.com


Sharon P's March 29 reply to Tracey C's March 27, 2001 - Hi, My hair hasn't fallen out but it sure did get dry and unmanageable. I did, however, lose my eyebrows. It turned out to be thyroid problems, which are a side effect of amiodarone so now Synthroid has been added to my medicine cabinet. Blessings, Sharon P. sparker103@home.com


Duane C, March 29, 2001 - Hi everyone, I am still kicking. I changed heart doctors and have an agressive one now. I have been having bad low heart beats - in the 30s. I also had v-tach a couple of years ago. My doctor wanted to get me off amiodarone so we agreed on a pacemaker. I went in Monday and they tested to see if a unit would control heart beat high and lows, and also give a defib shock. I am hoping to have some more energy now. I have a serious case of sleep apnea so we are working that at the same time. My back pain is at a level that I can live with it. Duane. djclink@kdsi.net


Donna Z, March 29, 2001 - Hi Linda and Milt, Thank you both for your replies to me and Linda, I did recieve your private e-mail. I guess it's time to find another endocrinologist and try and get my sugars under control. Thank you, Donna. dzak@worldnet.att.net


Joe S' March 29 reply to Tom's March 27, 2001 - Hi Tom, I i am living testimony that climate helps CHFers. I moved almost 2 years ago from the coast of California to the eastern Sierras, where the humidity averages less then 30% and the air is clear all the time. My health improved greatly. I stopped waking up wheezing and I was able to walk further. Of course, the lack of tension from living in a very small town with zero crime doesn't hurt. Joe S. jes@pronet.net


Tony's March 29 reply to Nadine's March 28, 2001 - Hi, My hair has really been leaving big time over the last several years. I figured it was just genetic. When you said a doctor mentioned that Coumadin can cause hair loss, I went to Google and did a search for coumadin AND "hair loss". There were many returns. Two of them that list coumadin and other heart meds that can cause hair loss are at: www.afraidtoask.com/hair/medshairloss.html and www.newhair.com/resources/women.asp. I won't vouch for the accuracy or integrity of these sites but there were quite of few others that said similar things about hair loss and heart meds. t0nyt@yahoo.com


Jon, March 29, 2001 - Hi everyone, Several things: First, I may not put up posts tomorrow. I am going to install another hard drive in my pooter, one salvaged from our oldest system (the drive you readers bought me long ago, which kept me from shutting down my web site!). The rest of that pooter we are putting to sleep after many years of good service. My daughter has her college system up and running now so the tired old antique can rest. I envy it. <g> I'll be spending a good part of the day tomorrow walking her through a bunch of pooter know-how she'll need in college and setting up my system with the new drive.
     An excellent CHF doc here in town has been talking to me about doses and multiple target doses and so on. Here is some info from that conversation, which has been going back and forth for 2 days to be sure I understand it all.
     Target dose remains the same whether you take one drug or five. The target dose is defined as the dose which gave maximum benefit in clinical trials of that drug for that illness. Even if you take an ACE inhibitor, for instance, the target dose for an added ARB would remain the same as if you were not taking an ACE inhibitor too.
     Then there is the matter of patient tolerance. If a patient tolerates it, all drugs should be raised to the target dose, period, because that is the dose proven to give the most benefit. If however, a patient cannot tolerate all drugs at target dose, decisions are made as to what drugs will provide that patient the most benefit and those drugs are raised to target dose while others - which may provide less benefit to that patient - are kept at lower doses.
     So usually if a patient has low BP and cannot tolerate target doses of both Coreg and an ACE inhibitor, the ACE inhibitor dose will be lowered and the Coreg taken to target dose. Why? Because a Coreg target dose - 25mg BID for those under 190 pounds body weight and 50mg BID for those over 190 pounds body weight - has been shown in trials to reduce mortality more than an ACE inhibitor.
     Of course, patients are in charge of their own treatment when it comes right down to it. I have talked at length with my CHF specialist and we've kept my ACE inhibitor dose high (40mg Monopril daily) and my Coreg dose under target levels (25mg BID - I weigh 200 pounds) because certain side effects of Coreg are not worth the reduction in mortality risk to me at high doses. It's my call. My doc disagrees but I am the patient and it's my body. I should note however, that he flatly stated that if I went under 6.25mg Coreg BID, I could find myself another CHF doc and that I had better seriously consider a minimum dose of 12.5mg BID. <g> He has his principles and I definitely listen because after all, I pay him for his judgment as well as his medical skills. He's very, very good.
     I will incorporate all this info into The Manual first chance I get, with links to it from the Coreg and ACE inhibitor pages. I have an excellent transplant bio from Randy B underway, another new bio and bio updates, a new recipe, and 2 new pages on coping with heart failure emotionally and mentally, as well as ACC meeting results to work on. I'll get to it all but not all at once. ;-) Honestly, except for the halt to the TNF trial, I did not see any truly new info come from the conference on CHF. I do plan on asking some of the presenters from the conference to write some articles for the site. We'll see how it goes in the next month or so. Jon.


Bill C's March 29 reply to Linda S' March 28, 2001 - Hi, On the subject of diabetic meds, I started out with glucophage and was quickly changed to actose by the diabetic clinic. The reasoning behind this was that glucophage and heart failure combined can cause kidney and liver damage. I can't be sure but I suspect I lost my mother-in-law to this. My aunt is now in liver and kidney failure, which I suspect is from the same cause. My kidneys are also slightly damaged. Get expert help now from a CHF specialist and diabetic clinic. Thank you Jon, for this site. Bill C. bcraw50049@aol.com


Marsha H's March 29 reply to Sid K's March 29, 2001 - Hi, When I had a similar problem last fall, my PCP took me off Coreg for awhile because he has had 3 patients who have nearly died from dehydration from diarrhea that was linked to Coreg. He had to hospitalize all 3 and one was in very bad shape for awhile. Please talk this over with your doc. He may need to check your potassium. My PCP has a rule of thumb for vomiting and diarrhea. You can have one or the other for no more than one week before being seen in the office; or no more than 48 hours if you have both. That holds when you don't have heart problems, so don't fool around with it, please. hazelwood_w-m@juno.com


Tony's March 29 reply to Sid K's March 29, 2001 - Hi Sid, Regarding your diarrhea that occurs 6-7 times a day, I had a somewhat similar experience when I first got CHF but with constipation and severe cramps. I was taking 5 heart meds at the same time. When I separated taking my Coumadin by at least 2 hours from my other meds, my constipation and cramps promptly left and have not returned. Unfortunately, it took me weeks to find out the cause of my pain. If your doctor approves, you might try separating taking your meds to see if there is an interaction caused by 2 or more meds taken together.
     I'm on Lanoxin, Coumadin, Verapamil, Nitro-SR, Accupril and Lasix. I separate all meds by at least an hour, Coumadin by 2 hours, and my Lanoxin and verapamil by 2 hours because if I take certain meds too close together it causes additional painful, uncomfortable heart rhythm disturbances. I don't know if my own experience with taking my meds relates to your problem at all but since Jon has a special "Two posts for the price of one" sale today, I figured I'd take advantage of it. <g> t0nyt@yahoo.com


Sid K, March 31, 2001 - Hi, Thanks to all for your helpful responses. At least I know that others have had similar experiences. Last evening I was reading a book and it mentioned that in about 30% of CHF hospital admissions there is evidence of toxemia from digitalis. The chapter went on to relate that diarrhea is one of the early warning symptoms of digitalis (digoxin) poisoning.
     Now, I have been on digitalis for months. Does anyone think my daily diarrhea might possibly be the result of digitalis build-up in my body? The chapter on digitalis states that it does accumulate in the body and ultimately brings on toxemia. Is it possible that my ongoing bout with diarrhea is really the result of all that digitalis building up in my body?
     One more question: A friend of mine advises that cayenne pepper is toxic to the body. I am not taking cayenne pepper at this time. It says so in the herbal book by John Lust. The late Dick Quinn told his readers that cayenne pepper kept him alive for 17 years. Is it possible that John Lust is right and no one should ingest cayenne pepper? Any thoughts? Again, thanks to all of you for your kindness. Peace, love and blessings, Sid. SKleiner@aol.com


Jon's March 31 reply to Sid K's March 31, 2001 - Hi, Cayenne is not toxic in any usual dose, certainly not through any dose in food. If it was, I'd be dead. <g> Jon.


Sigmund B, March 31, 2001 - Hi Fellow CHFers, I recently received a new pacemaker. The battery output in my old one had dropped too low. Anyhow, a recent letter from the manufacturer referenced a web site which I found to be pretty interesting, including simplified cardiac waveforms, which are presented to illustrate various CHF conditions. It's on Medtronic's web site at www.medtronics.com. Look under "Health and Diseases."
     I've had CHF for about 5 years and also have an implanted defibrillator. I was the recipient of a double bypass about 15 years ago and have gotten through many medications for arrhythmia. I will be 80 years old next month so I feel very fortunate that I have a loving family. My wife and I have been married 59 years so I thank the good Lord for His kindness. Many thanks to Jon for this site. It has been a god send. I read the posts every chance I get and feel informed and part of the CHF family we all share. My best wishes to all and God bless, Sig. sbegun@juno.com


Bill D, March 31, 2001 - Well folks, I lived to tell about my endarterectomy, cleaning out my right carotid artery. I had a little stroke that affected my speech center and I no longer can speak right. I weighed myself before the operation at 194 pounds. I didn't have anything to eat for 2 days but when I got back home I weighed myself again. Instead of losing weight, I gained 10 pounds! The only thing I was given was a saline solution drip. Everybody gets that. When I was discharged, I could hardly breathe. I knew I should get out of that hospital to save my life. Did we talk about the saline solution drip before? I don't remember. If it's salt, it can kill us! Bill D. billdog11@earthlink.net


Ken N, March 31, 2001 - Hi, I want to invite everyone to check out a new site. It is a list of notable persons who have died of CHF. No, I'm not ghoulish. I have CHF and I have always taken note when I read of a famous person dying of CHF. I sort of take an interest in it. Anyway, the site is at www.geocities.com/ollieninh/index.htm. It needs a lot of personality information fed it to get it started. Asking for some help and feedback in getting this site going. Thanks, Ken. kennoetzel@aol.com


William B, March 31, 2001 - Hi, I have an MIVI test set in about 2 weeks. My doc said this is about a 6 hour test. My wife took the phone call from the clinic and did not ask many question. Has anyone had this test and what all does it measure? Thanks, William B. willdet@juno.com


Lil, March 31, 2001 - Hi, I have had dilated cardiomyopathy for 15 years, since I was a teenager. Since I hit my thirties, my cardiac fuction has changed. After being misdaignosed with asthma, I now have been diagnosed with CHF and daily find it more difficult to breathe. My EF remained stable at 27% for 15 years and now has decreased to 20%. I have one cardiologist who takes me very seriously but is not very available - I live in Canada and the health system here leaves much to be desired - as well as a couple of family docs who send out mixed messages about CHF.
     My questions are: Did I cause my CHF by being overweight? Can CHF be reversed or is it something I will always deal with on a daily basis as I seem to be doing now? Is this the beginning of an irreversible downward spiral? I know you are not doctors but I cannot get in to see mine until the end of April and I'm a little scared and feel a little out in left field. Some answers from a person going through a similar experience will be so appreciated.
     My hope is in Jesus. I know He is ultimately in control. For now I need more anwsers. I hope you can help. Thank you so much for your replies, Lil. lsab@on.aibn.com


Joe S, March 31, 2001 - Hi, I've been bragging to everyone about how well I have been feeling, then bam! This morning I swung a 30 lb trash can about 20 feet and it seemed like I reverted right back to how I was 2½ years ago. I keep forgetting that a bad heart is a forever thing and no matter how good I feel, it is still there. Joe S. jes@pronet.net


Yvette's March 31 reply to Lil's March 31, 2001 - Hi, You say you have had cardiomyopathy for 15 years. Do you exercise? If not, you should start. If your doctor tells you not to, find another doctor. I am on my third cardiologist, who insisted and greatly approved of exercise - not vigorous but mild to moderate exercise might help. Besides, it's nearly impossible to lose weight and keep it off without exercise. mommahouse@att.net


Sharon P, March 31, 2001 - Hi, I have had DCM and an ICD for 3½ years and have felt fairly well after the initial diagnosis and adjustment to the illness and medications. I did all the things recommended by Dr. Silver in his book and by my own doctors. Well folks, I got pretty complacent and early in March I went to a 3 day retreat and broke every CHF rule that was ever made. I took in too much sodium and fat, did no exercise, took no naps, and got little night-time sleep. Four weeks later I am still suffering the effects of my poor choices that weekend. I bring this up because of the valuable lesson I learned, which was by doing all the right things we can truly lead a much healthier, better life. Blessings to all, Sharon P. sparker103@home.com


Pati F, March 31, 2001 - Hi, I haven't posted in awhile because I thought I was all over this. Ha. I was diagnosed 2 years ago with DCM and CHF with an EF of 20%. Lo and behold, 6 months later the cardiac doc said, "Bam! It's a miracle, you are cured." She said my heart function was normal at about 50-55%. She even offered me a choice to go off meds completely or stay on them for one year just in case. Needless to say, I had some sort of repeat episode and had to go back for an echo within 6 months. The next thing I knew I was still in the "normal range" but to stay on the meds for awhile longer. Any guesses?
     Yep, that's right. In January of 2001 I was experiencing all the classic symptoms, which I ignored mostly. I eventually ended up in the emergency room with a repeat performance and an EF of 30%! I was led to believe that I had suffered a virus that causeed my initial DCM and that it won't happen again. Since all this started again I am now facing borderline diabetes and the possiblity of colon cancer. Does life get any better than this? I am also worried that I will lose my job permanently. I have been out of work almost 6 months. Any advice? Thanks a lot anyone who can help. Where was that rope I am desperately clinging to? stella02@aol.com


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

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