The paperwork never ends The Archives
June, 2007 Archive Index

Jon 6-2     still alive, but.......
Laurie N 6-5     what is more accurate - MRI or echo?
Linda K 6-5     does anyone get cold and chills?
George C 6-5     seek advice on different therapies
Christine A 6-5     seek heart transplant experiences, please
George C's 6-5 reply to Theresa B's 5-22     meds therapy, heart transplant and stem cell therapies
Marty C 6-5     questions about Lipitor side effects
Lowell P 6-5     seek suggestions on taking meds
George C's 6-8 reply to Theresa B's 5-22     post correction
Maria D 6-8     amiodarone is a very risky drug
Linda K's 6-8 reply to Marty C's 6-5     beware statins and muscle problems!
Jon 6-18     got it figured out, anyway

Jon, June 2, 2007 - Hi everyone, It turns out I have nerve conduction problems in my hands in addition to my rheumatoid arthritis. Getting my house completely ready for a third occupant (my daughter) meant hanging cabinets, hardware, assembling furniture and more, which made my hands go numb and lose their ability to do anything precise - neuropathy. Unfortunately, I still haven't received enough money for the spoken typewriting software so I just had to wait until my hands got better to type. There's nothing I can currently do about this since regular painkillers don't help neuropathy regardless of type. I have been catching up on e-mail and will work on posts more later. Jon.

Laurie N, June 5, 2007 - Hello, I have had 3 echocardiograms over 5 months, all with an EF of 22 to 30% so I am in line for an ICD. I went for a second opinion and he scheduled a heart MRI. That test showed an EF of 46%! Does anyone know which test is more accurate and which one is considered the better indicator? Thank you!

Linda K, June 5, 2007 - Hi all, I have a quick question for you all. I'm trying to piece together a timeline of my symptoms before I was finally diagnosed with CHF, (and why my doctors kept missing it) and I was wondering if anyone experienced extreme cold and chills?

George C, June 5, 2007 - Hi, I am wondering if Jon or anyone else have ever made a logical evaluation of the pros and cons of these options: success, longivity, quality of life, etc. Also, I would appreciate comments and suggestions regarding stem cell treatments. In the US, most doctors would recommend you to see a heart surgeon. As you all know, there is a lot of activity involving stem cell therapy with different kinds of cells. The most widely used appears to be the autologus adult stem cell from bone marrow or blood cells. These treatments are mostly in trials using bone marrow cells at university medical centers.
     Then you have Vescell therapy from Theravitae that claims a lot of successes, including Don Ho. These procedures seem to have the limitations of the multipotent cells and new procedures using pluripotent cells are being performed. Unfortunately, outside of the US and with no reputable endorsement. Please help me decide.
Jon's note: You do know that Don Ho died, right? See,, for just some of previous reader (and my) input.

Christine A, June 5, 2007 - Hi everyone, I have had CHF for 15 years after having a heart attack caused by dissection of the arteries. I had triple bypass surgery to bypass the affected arteries. Shortly after the heart attack and surgery, my EF was 32% and I had few symptoms until about 4 years ago. Since then my health has steadly decreased. My local cardiologist sent me to the University of Utah for consultation and they implanted a BiV pacemaker/ICD. My last EF was 9%.
     I just found out that they will be running all the final tests in preparation for being put on the heart transplant list. Last week I had a Vo2 test and scored 12 after having the test twice before, scoring 16 each time. I live in Idaho and I am going to the University of Utah Medical Center. They are scheduling 2 days worth of testing and interviews with a financial consultant and social worker. I should be receiving the exact schedule in the mail any day.
     Does anyone have any suggestions or comments to help with what I am going to have to go through in the next several months? Thank you!

George C's June 5 reply to Theresa B's May 22, 2007 - Hi Theresa, It seems like we have a lot in common. I am a Type 2 diabetic and was diagnosed with Class 2 CHF and DCM 2 years ago. I take the following medications and they have worked so far:

I have been informed that I may need a heart transplant if my condition deteriorates, so I have started an intensive research campaign for a possible stem cell solution. Navigating through all the hype, myths, scams, etc,..., on this topic has turned out to be a major undertaking. Please feel free to contact me with any questions or exchange of information.
Jon's note: Stem cell therapies are currently so confusing I have avoided making a page about them. Best wishes with your research.

Marty C, June 5, 2007 - Hello all, I'm 46 years old, have non-ischemic DCM/LBBB, 35% EF, and my cholesterol has been stubbornly sticking in the 240 to 250 range, with LDL just tested at 170. My heart failure doc put me on Zocor a year ago and my legs just cramped and ached so much he said stop taking it. After stopping, it seems my LDL actually bounced higher than before and HDL came down from 63 to 50. So now he has put me back on a different statin, Lipitor. I just started taking it yesterday, but I'm concerned about trade-offs with using a statin.
     I am well-read on this site, so I am taking 300 mg of CoQ10 daily, and exercise as much as my body will allow. I read a pretty comprehensive MedScape article on the SCD-HeFT study ( and I plan to go ahead and try real hard with the Lipitor. My basic question is, "How much should I suck it up with the side effects I get with taking this statin before stopping it?"
     Thanks for any feedback, and God bless. Marty.

Lowell P, June 5, 2007 - Hi all, I am now taking Avapro in the morning and Toprol-XL in the PM. This causes me to need two prescriptions and I have a minimum $50 per prescription four times a year. I wonder if I could take just one of those two pills twice a day and have one prescription? I also wonder if I could just go directly to Coreg 25mg twice a day without a gradual transition? Anyone care to answer or give me your thoughts. Thanks. Lowell.

George C's June 8 reply to Theresa B's May 22, 2007 - Hi Theresa, My previous response to you shows an error. I take the Cordarone after breakfast and Vytorin after dinner only.

Maria D, June 8, 2007 - Hi all, I wrote here about 2 months ago when my mother was sick. I wanted to post in order to make others aware of amiodarone toxicity. My mother was hospitalized April 21st in Miami, Florida due to edema and naussea. After not responding to medication we looked for other alternatives. After some research we transferred her to Shands Hospital at the University of Florida for a possible implant of a HeartMate 2 LVAD.
     After stabilizing her, many tests were done in order to determine if she met the requirements for the research. To our surprise it was discovered that she had amiodarone toxicity. Since her lungs, liver and thyroid were affected, she could not receive the LVAD. My mother began taking amiodarone November 22, 2006. My mother kept saying that she had an overall feeling of illness since November 22nd which was the date that she received an ICD. She kept insisting that the ICD was not working properly. This was the same date she began amiodarone.
     She was at her doctor's office at least once a week explaining her symptoms. Never was an X-ray done or lung test. I was shown the scan other lungs and could not believe the damage done in such a short time. My mother passed away June 2, 2007 and the death certificate will show CHF and not amiodarone toxicity. Because the symptoms of amiodarone toxicity are similar to those of CHF it goes undetected. Had we not gone to Gainesville for the research we would have never known that my mother was suffering from amiodarone toxicity.
     I am posting this to make all persons taking amiodarone aware of the dangers associated with this very toxic drug. Maria.
Jon's note: If it were subjected to FDA trials today, it would fail spectacularly because of the high mortality rate from side effects.

Linda K's June 8 reply to Marty C's June 5, 2007 - Hi Marty, I'd be real cautious about statins from what you described. The patient information for Lipitor warns you to tell your doctor immediately if you experience muscle pain or weakness because it could cause permanent damage and in rare cases lead to kidney failure.
     My mother-in-law tried two different statins, Lipitor being one of them, and got such weakness and aching in her arms both times that she gave them up. Unfortunately, with the second try, she has yet to completely recover the strength in her arms. Fortunately, she finally got her new doctor to recongnize the thyroid problem she had been treated for for years, and that brought her lipids down dramatically.

Jon, June 18, 2007 - Hi all, Well, tests today showed serious carpal tunnel syndrome in both hands. Add peripheral neuropathy and rheumatoid arthritis in both hands and my delays make more sense. On the plus side, 2 donors have given me massive support that will allow me to buy the voice software today so this forum will go on, although it will be slow until I get the software down pat. Thank you all for your patience. Jon.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.

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