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Transplant update from PA VA

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Posted 1/13/2012 9:34 PM (GMT 0)
The TP Co-ordinator called today to make us aware that Phil is # 3 on the list!! Great news!! I went to transportation at the VA here and got all the info on luggage, transportation to the airport etc . . Phil is in the hospital now with HE/ammonia problems again.  It has been a roller coaster day!!

 

Posted 1/13/2012 10:34 PM (GMT 0)
That's great news, Debbie! That call could come at any time, as the first 2 above him may not be a match. So I hope they stabilize him really fast while he's in the hospital!

Hugs,
Connie
Posted 1/14/2012 3:34 AM (GMT 0)
Me too Connie . . he is not in good shape right now. His brain is not allowing him to respond. He is having trouble getting his meds down/ swallowing, not talking well and in a trance like state most of the time. He has a nurse in his room 24/7, until further notice.
My cousins are going to be coming to Pitts for the surgery. They live 3 hours away, and are going to bring me some winter clothes and shoes, so I don't have to over pack!! I have Phils ready and I will have mine ready tomorrow. All we will have to throw in is shaving kit and my shower bag, cell phone chargers, and pack up the computer and wifi card . . I am exstatic!!

Debbie
Posted 1/14/2012 3:38 AM (GMT 0)
Deb, is he in a FL hospital or already in PA? I pray that he can make it to transplant, as it sounds like he could possibly be going into a coma.

Hugs,
Connie
Posted 1/14/2012 4:36 AM (GMT 0)
He doesn't sound healthy enough to withstand a transplant at this point.
Posted 1/14/2012 4:42 AM (GMT 0)
Deb,

  Hope that incoming liver has wings and gets to him quickly.  Best to you both.

Angie1953

Posted 1/14/2012 11:20 PM (GMT 0)
Deb,
Saying prayers that he stabilizes and that a liver (God bless the donor) is available SOON!
Emma
Posted 1/15/2012 12:49 AM (GMT 0)
He is in FL with PA monitioring the doctors notes and bloodwork. The problem is the ammonia . . he is healthy otherwise!! He has not changed at all since yesterday. They cannot get the lactulose in him, because his brain is not telling him to swallow. They are doing bloodwork tonight, and if his ammonia has not gone down they are going to put a tube down his throat to his stomach for medications . . lactulose and rifaxamin. A few weeks ago when his ammonia was high, and he was in the hospital, he did not remember the first few days. He is worse now, so I doubt he will remember this either, Thank God!! he is comfortable, and they are keeping him clean, so hopefully he will start responding soon.

I am trying to stay positive . . no coma . . healthy enough for transplant . . I've stopped praying and started begging!!

Debbie
Posted 1/15/2012 12:55 AM (GMT 0)
Thanks for the info, Debbie. I know this must be excruciating for you. But one way or another, they're going to get that Lactulose and rifaximin in him!

When he's well enough to travel, will it be a private flight? I just couldn't imagine him going through the hassles of a commercial flight.

Thoughts and prayers going out to you both.

Hugs,
Connie
Posted 1/15/2012 3:27 AM (GMT 0)
Deb ..they had to put tube down al before transplant to get meds and feed .....it was the only way to get his h.e down as he was bad around august 15 ..he thought in the middle of the night I was his mom .....he was transplanted Sept 27 and he doesn't remember much from the month after til all the toxins and meds came out his system ...I was really starting to worry but everything turn out find and he is so with it today ..somethimes I have the tendency to treat him like a baby and he like stop ......lol ...I hope things get better ..you will be in my thoughts and prayers I was in your shoes not long ago ....keep faith
Posted 1/15/2012 3:54 AM (GMT 0)
Lactulose can be administered as an enema.
Posted 1/15/2012 5:47 AM (GMT 0)
I thought so, David! Hmmm.....tube or enema. What a choice! But since they need to get nutrition in him, too, I can understand placing a tube.

Hugs,
Connie
Posted 1/15/2012 10:37 PM (GMT 0)
Well, he got the enema last night, brought his ammonia down to 65, and tube today for meds!! Best of both worlds!! He is still not responsive . . not in a coma, he did say hi to me . . only thing I could get out of him. The Dr.'s think it's gonna take a few days to get his brain clear and working with him again. He's already schedule for a draining . . hopefully he will be feeling more like himself in a few days . . I never thought I'd hear myself say "Grumpy" is good!!

Debbie
Posted 1/15/2012 11:12 PM (GMT 0)
Debbie, thanks for the update! They do whatever they can, don't they? Glad his ammonia is down and hope that he will be feeling much better soon.

Hugs,
Connie
Posted 1/16/2012 2:18 AM (GMT 0)
Keep us posted ...prayers sent your way
Posted 1/16/2012 3:21 AM (GMT 0)
Prayers for you and your husband Deb.

Emma
Posted 1/16/2012 8:36 PM (GMT 0)
Deb, Best to you both.
Angie1953
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