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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › liver transplant

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liver transplant (Read 2323 times)

mandyz94

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I love YaBB 1G - SP1!

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Auburn, USA, PA, Pennsylvania
Gender: female

liver transplant
Jun 13^th, 2008 at 3:06pm

My son is 20 mpnths old he has moyamoya and liver cirohsis. He had mm surgery in Boston last year now he needs a new liver. Even the surgeons do not know if thier have been any mm patients that had a liver transplant. WE had big problems trying to find a hospital willing to consider doing a liver transplant on our son. It is hard to believe some physician don't think mm patients deserve a chace because they might have deficits. We are now at AI Dupont and Tyler is being worked up for transplant. Do you know anyone with mm and liver transplant??
Amanda

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: liver transplant
Reply #1 - Jun 30^th, 2008 at 7:58pm

Hi Amanda,

Although I do not know of anyone diagnosed with MM needing/having a liver transplant, I wanted to reply to your post because I believe, in general, many medical professionals are hesitant to administer (especially for serious procedures) to those diagnosed with MM disease. For most of us, we are on blood thinning medications, and surgical procedures usually require the pt to stop taking these medications 5-7 days pre-op which will put the pt at a higher risk for stroke, TIA's, etc. However, as you know, if these medications are not stopped prior to surgery, there is a high risk for bleeding... Embarrassed

I hope there is someone out there who can provide you the information you need~ Wink

Please keep us posted on how Tyler is doing...

You are in our thoughts and prayers.

Take care,
Shan Smiley

« Last Edit: Jun 30^th, 2008 at 8:00pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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mandyz94

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I love YaBB 1G - SP1!

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Auburn, USA, PA, Pennsylvania
Gender: female

Re: liver transplant
Reply #2 - Jul 1^st, 2008 at 9:20pm

Tyler did have his liver transplant on June 16 his father was the donor. He did have a TIA's before due to blood loss for GI bleeds. He was more at risk for due to the mm. He is recovering fine. he does need to get his VP shunt replaced on Thursday. His new liver is functioning great. We are so greatful for the surgeons here at AI Dupont. Without them Tyler would not be here today. I could not believe how many hospital did not think a pt w/mm did not deserve a transplant just because he would not ever be completly normal!! Thanks for replying
Mandy

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: liver transplant
Reply #3 - Jul 1^st, 2008 at 9:54pm

Hi Amanda,

Good to hear that Tyler's surgery went well, and his new liver has been accepted and is functioning well! I agree~we should not be pushed to the side and not considered for other medical procedures unless all medical and non-medical issues have been carefully looked at, especially in Tyler's case where he needed a liver transplant. (Sometimes we may even have to seekf 2nd, 3rd...opinions).

Keep in touch and know that your family is in our thoughts and prayers!

Take care,
Shan

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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