Short Gut Syndrome Parents' Support Group
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February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Intestinal transplant

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Chloe's future
By: Tricia           (1:39 PM 06/22/2013)
Hello everyone. I'm Chloe's mother, Tricia Chapman. My daughter is 4 months old born with ultra short bowel syndrome. She is currently doing well with no line infections she was born at 37 weeks all other organs functioning fine. She is on 20 hours of continuous variable TPN and a continuous feed of 20 cal elecare formula at 13 ml per hour along with 2-3 bottles of 10 ml breast milk and 5 ml of elecare. She is undergoing some lab tests and other pre transplant tests that Riley children's hospital require. Her transplant doctor wants her to be on the list at 6 months old. We recently just switched GI doctors The new GI doctor thinks she is going amazing. With less than 10 cm of small bowel left he feels its not fair to put her through the transplant since she is doing so well. I have mixed emotions because the transplant doctor has told us she can't survive without a transplant? I was at peace after much praying about the transplant. Now we have the new GI telling us that he thinks she could go off TPN it may take a long time but even thinks maybe a lengthening procedure might be even better for her? So we will continue the tests to list her for transplant while we wait for the doctors to talk to one another. I was just wondering if anyone out there has gone through a small Bowel transplant or a lengthening procedure.? What is your experiences with either?
Re: Chloe's future
By: Emily H          (2:20 PM 06/22/2013)
Do you use Facebook? Our facebook message board to so much more active and I think that you'd get a really good response there if you asked the question.

I have a son who's been waiting for and is listed for a transplant, and has been for many years. The question of transplant vs. rehabilitation is a very hot topic right now in Short Bowel Syndrome care. The heart of the debate is that transplant doesn't mean a normal life for most children. There is long-term immune surpression and risk of infection and rejection. That's no small thing.

On the other hand, while many children survive long term with TPN (I know some patients who have had TPN support at night for going on 20 years).. it also comes with it's own set of issues.. which I'm sure you're well aware of.

But, there are kids who with lengthening surgeries and strict diet and good GI support, are able to wean off to TPN.

And there are other people who say that it's worth the wait for technology to improve... waiting on TPN trying to rehabilitate and letting the medical science get better.

It can be confusing and overwhelming. And usually my answer is to go ahead and go for a transplant evaluation because most transplant programs also have a strong intestinal rehabilitation program and they won't list a patient for transplant unless they feel that they have failed rehabilitation.

However, Riley Children's has some of the shortest transplant wait times and highest transplant volume in the country. On the one hand, that means some very experienced transplant surgeons and a very experienced post-transplant recovery team. On the other hand, they are one of the only transplant centers that I don't know to also have a strong rehabilitation program.

So - what do you do? Well, since I know you're the praying type, I think you pray about it. I can tell you that we prayed and felt very strongly to list my son for transplant at a smaller transplant center near us with long wait times to give him time to get older and stronger before transplant. For him, that was right for many years.

Then one day, we had the feeling that we needed to change centers and work on getting the transplant faster. (Yes, he is still waiting. Rare blood type.)

For you? I don't know what is best. But I think you are doing the right thing talking to the GI and the transplant surgeon. You could consider going to another center for a 2nd opinion before deciding which route to take.. good doctors can surpress ego's enough to honor that choice... if your insurance will pay for the 2nd opinion.

I do have faith that God has a unique plan for each child. No one treatment is right for every kid with SBS. But I have faith that a prayerful mother can find the right path for her child.

Please use the link on the left to Facebook and reask this question in our group. You'll get answers on all sides and from both extremes, so weigh the answers carefully. But I know we have other Riley's transplant patients there and that may give you some great insight.
Intestinal Transplant
By: Saved by Grace          (6:43 PM 03/22/2014)
Hello, I received an Intestinal Transplant on July 20th 2013 after suffering from SBS for 2 years. In 1996 I received a total collectomy due to a Mega-Toxic Colon. I did well with a ileostomy until 2011 at which time I suffered a small bowel Bezor. After a long complicated surgery , I was left with 35cm (1 foot)of small Intestine. I was put on TPN and basically sent home to die. My wife contacted the Cleveland Clinic and found that the doctor who had perfected small intestine transplant was now head of the transplant program. Dr. Kareem Abu-Elgad called me back and discussed my condition and 1 month later I was on the way to Cleveland for a evaluation. 6 months later I moved to Cleveland and rented a studio apartment while I waited for the call.5 Days later they called and I received my transplant. It's now 8 months (March 2014) later and I'm back home and doing well. No more TPN and no more dehydration. Dr. Kareem has the "best" recorded of success and is "solely" responsible for getting Medicare to approve the procedure. Dr.Kareem also was the inventor of the anti-rejection drug FK-506 (Prograf), which is used by 90% of all organ transplant patience's. Call the Cleveland Clinic. Your Miracle awaits you..

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