[Thank you]

Author: Ken Crawford (---.proxyconn.net)

Date: 12-18-02 06:29

I have just found this site and it is wonderful. I suffer with HCM, congestive heart failure, arrythmia. 2 1/2 years ago I received pacemaker for Bradycardia and 2 days later had blood clot blocking intestines. Spent 27 days in ICU and total of 76 days in hospital. I had 4 surgeries; 2 for the clot and 2 for staff infection. Thank the good Lord every day for being alive.

My questions are: 1. I am undergoing a battery of tests at this time at UT Southwestern medical facility in Dallas. Is this a good facility? The Dr. is a heart failure specialist. 2. I am currently taking, Digitek, Tropol XL, Potassium, Demadix, 300 mg Amiodarone, Prinivil, Coumadin.

I have to nap 3 hrs. a day to make it and I hardly have enough energy to put one foot in front of the other. I realize the medication probably has a lot to do with it, but Dr. is reluctant to take me off of any. I do not have the results of the latest echo but a prior one in June had my ef at 40. I have read in forums of people with 20% that lead an active life. I realize that all people are different but it seems odd to me.

Again, thank you for this site and I wish everyone the best Holidays possible.

I forgot to mention I have A-Fib and have been converted 3 times, with only short term success.

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[Re: Thank you]

Author: Sarah B. Board Moderator (12.144.99.---)

Date: 12-18-02 06:51

Dear Ken,

Well, I would be interested in talking to someone with an ejection fraction of 20 that can run around. But everyone is different. You need to focus on you. You are taking one of everything, that is for sure. But heart faliure and HCM is a tricky business.

I would call Lisa at 973-983-7429 and find out about your doctors. She can give you the 411 on them and hook you up with some top HCM specialists.

take care and good luck,

S

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[Re: Thank you]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 12-19-02 06:54

Ken,

It sounds like you have had a difficult few years! I cannot comment on the center you are being seen at as I have no personal knowledge, I can say it is not an HCM specialty center.

You did not mention your age, what is it? It sounds like you have a burntout form of HCM as the EF is rather low and the meds you are on indicate that your heart may have gone from a thickened state to a thinned, I could very well be incorrect.

Do you know your measurements? they can be found on your echo reports.

Those with AF and HCM do seem to have a great deal of fatigue. Working with a Dr. to achieve the best balance of meds and maybe devices appears to hold the most hope for improvement in quality of life.

Feel free to call the office, I would be more then happy to speak to you further.

Lisa Salberg

President,

HCMA

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[Re: Thank you]

Author: Ken Crawford (---.proxyconn.net)

Date: 12-19-02 08:05

Lisa, thank you for your reply. I do not have the echo measurements from previous echo's but will have from the last one in January. The medical facility is the University of Texas Southwestern Medical School in Dallas, TX. The Doctor I am seeing is a Professor there and I think he only sees limited patients. My son who is in Cardiac Dept. at Children's Hospital in Dallas is the one who insisted I see him. I have had an event moniter for 30 days. Am supposed to try for stress test in Jan. if I can. My son thought I might qualify for transplant. Don't know. I am 62 and feel 200. I try to accept things as they are but would like to be able to see a ray of hope. I said it earlier but I am so thankful to have found this site.

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[Re: Thank you]

Author: Sarah B. Board Moderator (12.144.99.---)

Date: 12-19-02 08:09

Dear Ken,

Please call Lisa and talk about specialists that would best suit your situation.

973-983-7429

S

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[Re: Thank you]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 12-19-02 09:09

Ken, You sound a great deal like my dad. There are options available that may very well make you feel better...give me a call we can talk about it.

Lisa