My Daughter - Upcoming Live Donor Transplant?

General
1

The following post is from our member Mollie. She asked me to post this for her as she was having difficulty. Please give her some good feedback in support of her care for her dear daughter. Mark

Hello friends,

It’s been so long since I’ve been on this forum I feel I need to introduce myself again! My daughter Alana, has PSC, diagnosed in September of 2017. I believe she had it a few years before diagnosis.

She has had some really bad times and then 3 years of little symptoms! In August of last year (21) I could see a slow return of symptoms and her labs began to show it. University in Cleveland did 2 ERCP’s and she did not show improvement from the process of opening bile ducts and strictures…etc…They told us they were not going to put stents in and actually stopped responding well to my calls etc. In February of this year, she looked so bad and her bilirubin got to 32 if you can imagine that. Not even life-sustaining. I took her to ER at Cleveland Clinic. She was immediately hospitalized, diagnosed with COVID and reassessed, and eventually listed for transplant. They began the process of dealing with her whole body and started her on a series of new meds and she looked like a new person! Her MELD is at 6! She has energy and though the left side of her liver is completely impassable, she is feeling great and as of Tuesday, her bilirubin is 0.2.

Here is my question and this is tough. CC called this week and has a live donor ( anonymous) ready to transplant on August 1st. It’s incredible! Alana is feeling so good and though her alk and other labs are super high she is in her best health.

I’m so afraid to go through with this. But I told them yes. My husband as well. Now I’m dealing with appointments etc. My daughter is also getting married this weekend and we are so busy here.

What would you do? Did we make the right decision? Any advice from your PSC family and friends will help me.

As far as is known, Alana is only person with Down syndrome drone to have a liver transplant…

Mollie Smale

1 Like
2

Mine was a live doner transplant - 10 years ago this month. It is a well established procedure and is as safe if not more safe in some respects than cadaveric organ transplant. Getting it done - from an angel doner who has been no doubt well medically reviewed, and wow! btw - removes the risk of something bad happening in the time interval you wait for the next one, including getting displaced on the waiting list by someone in more dire need.

1 Like
3

I was wondering if you would share what medications she took that moved her bilirubin numbers so dramatically
Thanks

1 Like
4

Mollie,
In my opinion, it is better to take the sure option instead of waiting to the last minute when it becomes life-threatening and a liver may or may not be available.

Good luck with your decisions. I hope she comes through like a champ. You too!

Jeff

5

Following this as well!

6

That’s a tough one and I think I’d struggle too, to be honest.

In the end I’d agree with Jeff. Angel donors don’t come around very often and I’d be worried I missed my opportunity.

Sending you all the best with whichever way you choose to proceed.

Eric

7

Hi friends.
Regarding Alana and her upcoming liver transplant:

She was so very ill in February. CClinic went ahead and did the ERCP and two stents were put in. The left side of her liver was impassable. Once she was released her new meds were this:

  1. No more ursodiols
  2. Vitamin E
  3. Vitamin C, D, D3, 1x a day, And a one time shot of vitamin K.
  4. Mododrine. 5mg 3x a day
  5. Lactu lose solution 10g/1
  6. Xyphaxin 550 mg 2x day
  7. Sertraline 50mg 1x day
  8. Omeprazole 20 mg 1 x day
  9. Potassium CL 10 meq ER 3 times day
  10. Vitamin A

I started her on coffee one cup a day… and also she takes the cholestramine powder drink 2 x a day…

I continued a healthy diet. These are things that have helped so much.

Thank you everyone.
Mollie