Down syndrome with transplant…

Continuing the discussion from PSC & Down Syndrome:

Hello everyone,

Wanted to let you all know Alana had her transplant from a live donor on August first of this year. She is home doing pretty well though she had a few problems the first month. She ended up back in the ICU (Cleveland Clinic) with fluid buildup in the cavity around the transplanted area pushing up into the lung cavity which caused her lung to collapse on the right side. There was a part of her lung not collapsed and of course the left not at all. The fluid had travelled up from a pocket of fluid around her liver. Anyway, the team ended up putting in two drainage tubes intermittently and she has been home on a pick line with vanco twice a day infusions. We are down to once a day for an hour in the morning….Her labs look pretty good and the new liver is functioning well. She did get an infection in the fluid near the liver but this treatment seems to have taken care of it.
I was wondering if anyone had this kind of complications post transplant? We are very grateful for this live donor and feel blessed to have gotten to this point. Just seems the complications post transplant are now our new normal.

Mollie Smale

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Hello there,

Cheers to Alana!

My husband experienced a pool of fluid in the cavity a couple day’s post transplant. We were told it wasn’t abnormal.

Thank you for sharing this update. I wish you and your family, and the live donor, all the best!

Mollie, I am glad she is doing better.
I had no problems with fluid, thankfully.
If there are complications post-tx, it is most likely to occur within the first year. So that is a great anniversary to have. So have patience and think long term.

Thank you. She just had pic line out last week as she had an infection but things are looking up and progressing forward.


Hoping for the best for you all.

Thank you!!!
Mollie ( mom of Alana)