[Newer pacers for Diastolic Dysfunction]

Author: Midge Rollins (---.obmo.socket.net)

Date: 09-05-02 21:24

Lisa, after our talk a few weeks ago I did talk to the Cardiomyopathy people at Mayo about the new pacer/defib. At this point they have not used them for people with Restrictive/Diastolic failure. They are researching that and will hopefully have some answers regarding that when I return in Oct. They did try some medicine changes adding Altace and D/Cing my Lasix. Did not work. Heart failure symptoms big time. So, I am back to my previous medications, we live at Lake of the Ozarks in Mo. We have been here full time 3 years and now Mayo has recommended that we move closer to them, we are originally from Cedar Rapids, Ia. So we are selling our dream home and moving back, as I move closer to transplant I will need to be closer to the clinic. This has been tough for me emotionally but I am going to land on my feet and keep on fighting this. Just wanted to fill you in and thank you for the tip on the new device. I will keep you posted. They also want to try another medicine that will require closer observation. The good news is we felt that we have had 3 great years here ( sort of like vacation). We have family and friends that are welcoming us back home. So, please pray our home sells and we can go onto another stage in our lives. Thanks for the support. I do not want to scare people. I have had HCM for 30 years and have been very lucky, a successful myectomy 20 years ago, ICD and pacer 6 years ago. Now another stage coming up. Midge

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[Re: Newer pacers for Diastolic Dysfunction]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 09-05-02 21:44

Dear Midge,

You have a great attitude and I hope that everything goes well for you. Are they talking about dofetilide as the new med? Just curious.

hang in there and keep us posted,

Sarah

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[Re: Newer pacers for Diastolic Dysfunction]

Author: AMY (192.76.86.---)

Date: 09-06-02 10:53

THANK YOU FOR BEING SO POSITIVE AND KEEPING UP THE STRUGGLE AND FIGHT OF THIS DISEASE. MY HUSBAND HAS BEEN DEALING WITH THIS FOR OVER 10 YEARS NOW AND SEEMS TO BE DOING GREAT. SAYING THAT YOU HAVE FOUGHT THIS FOR 30YRS GIVES YOUNGER PEOPLE LIKE ME AND MY HUB SOMETHING TO FIGHT FOR. HE IS 32 AND I AM 23 AND AM GOING TO START A FAMLY SOON AND THIS MAKES ME HAVE STRENGH FOR THE FUTURE!!! THANKS AGAIN,

AMY