[Heart Transplant/Michael Phillips]

Author: elizabeth (---.proxy.aol.com)

Date: 10-14-02 09:44

Hi I have a 16 year old son who in some time in the future will need a heart transplant I was woundering if there is any more parent's with whose children may need a heart transplant some day maybe in the near future?If there is I would Love to hear form you .

Thank you for your time

Elizabeth

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[Re: Heart Transplant/Michael Phillips]

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

Date: 10-14-02 10:00

Elizabeth,

How is Michael, last I saw on the board he was very stable and heading back to school.... how is it going?

Lisa

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[Re: Heart Transplant/Michael Phillips]

Author: Heather I. (65.247.157.---)

Date: 10-14-02 10:24

Elizabeth,

I had a heart cath. done about a year ago and the dr. said I would most likely be a transplant candidate in the future. I am going to the Mayo Clinic next month and will see what they have to say........How can a dr. determine if you are a transplant candidate before you are even having problems or should I say serious problems that would indicate a transplant? Do they know what your heart is going to do in the next several years? Is there specific things they look for? Just wondering.......

Heather I. 29-HCM

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[Re: Heart Transplant/Michael Phillips]

Author: Matt (---.disney.com)

Date: 10-14-02 12:24

Elizabeth,

My kids don't need a transplant, or even tested positive for HCM yet, but I do. I am working on getting on the list at this moment.

I was diagnosed with IHSS at 15, myectomy at 20. I am now 39. I saw Dr. B. Maron in July after finding the HCMA and talking with Lisa. My symptoms were increasingly getting worse this year and local doctors were doing nothing for me.

Let me know if you have any questions. I hope Michael is doing well.

Matt

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[Re: Heart Transplant/Michael Phillips]

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

Date: 10-14-02 12:34

There are a number of things that are looked at...including wall motion... these can be indications that a transplant may be in the future..HOWEVER!!! new drugs are being developed everyday and new devices too...so you never know what wonders medicine holds for us!

Hey Matt - I met Mary over the weekend, my daughter is so impressed that she works for Mickey Mouse!

Later!

Lisa

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[Re: Heart Transplant/Michael Phillips]

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

Date: 10-14-02 17:19

Your right there is many things before transplant. I am 56 and they are now getting me on a list, but I was diagnosed 30 years ago. As Lisa says wall motion is the big factor. They tell me my walls have little motion left. Just be sure you are dealing with the HCM centers as Lisa keeps stressing.

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[Re: Heart Transplant/Michael Phillips]

Author: john jordan (---.public.lawson.webtv.net)

Date: 10-14-02 21:35

i just had my myectomy at age 56 and im on tropol 50mg twice a day. i dont understand what all this means longterm. it sounds like the septum could get thick again in a short or long time or never. what are the averages. do they ever do myectomy more than once. i feel i should know more about this condition at this point with all ive been through. thanx, john

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[Re: Heart Transplant/Michael Phillips]

Author: john jordan (---.public.lawson.webtv.net)

Date: 10-14-02 22:21

i just had my myectomy at age 56 and im on tropol 50mg twice a day. i dont understand what all this means longterm. it sounds like the septum could get thick again in a short or long time or never. what are the averages. do they ever do myectomy more than once. i feel i should know more about this condition at this point with all ive been through. thanx, john

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[Re: Heart Transplant/Michael Phillips]

Author: elizabeth (---.proxy.aol.com)

Date: 10-14-02 23:28

Thank you for everyone response, Hi Lisa as far as Michael goes he is doing great he is going to school from 7:00A.M tIL 2:00P.M that is a long very long time for Michael to go to school like I have said before Michael has not went to school in more then 3 year's I am ery proud of him Michael even want's to go and get a job.

I tock Michael to the pacemaker DR. this week and found out that he has to get his replaced most likely within the nexted couple of month's.

Lisa as far as transplant center's I heard recently that Sutter Memorail Hospital here in Sacramento is performing Heart transplant's have you heard anything about this? If you have which one is the best Stanford or Sutter?

Please let me know if you have heard anything about any of the two.

Thankyou for your time

Elizabeth

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[Re: Heart Transplant/Michael Phillips]

Author: Bob Pensack,MD (---.tnt2.steamboat-springs.co.da.uu.net)

Date: 10-15-02 00:29

Dear Elizabeth,

I am 52 years old and have had a heart trantsplant now for 10 years. My brother Yisrael has had his heart trantsplant fo 12 years. We were both diagnosed wih HCM at age 14, that is 38 years ago. We both had septal myotomies and myectomies in our 20's. First of all, you should know that it is very rare for a patient with HCM to require cardiac transplantation. It is only for those patients who go on to develop end stage HCM. This occurs when the heart has warn out from many years of gradual deteriation and eventually becomes dilated and the walls thin. At this point the heart can no longer pump blood efficiently and becomes a flabby thinned out weak pump. Approximately 2 % or less of patients with HCM go on to this dilated cardiomyopathy requiring transplantation.There are also rarely seen patients usually infants whose septum becomes so thick that the left ventrivular cavity becomes totally obliterated and a few of these have come to transplant.All other patients with HCM have powerful pumping action of their hearts with thickened walls. Most of these are managed quite nicely with medications,alcohol septal ablation, or surgery (septal myectomy). As Lisa will tell you, most HCM patients live past average life expectancy of 73.

I am always skeptical of physicians who are not true experts on HCM prognosticating or predicting the future outcomes of HCM patients when they themselves may have only treated a handful of us.It is vital that all HCM patients are managed by physicians who have either a huge treatment experience with HCM or are consulting with another cardiologist who has that backround.I wish you and Michael well and feel free to contact me. Sinceely, Bob Pensack