Back in Pittsburgh

Well even though John was inactive on the transplant list we still got an early morning call on Wednesday!  Packed everything up and back we came.  Once here, white count was still elevated so again passed over!  No one knew why we got the call when we were not to be active to another week.

After speaking to our hepatologist she said she would find out why we were called because they were very confused also.  Our next visitor was the transplant surgeon, he said that he was the one who made the decision to call us down because he knows how sick he is. 

Well all labs were off the charts again, bili elevated to 9.1, INR elevated, and Creatinine back up also.  The surgeon said that his MELD is 40 or above, but his white count is still to high.   He explained that if we went home now John would be off the list.....    After listening to the docotor, John agreed that he needed to stay here and get the infection cleared up.  

Well today, white count is still down, kidney function is down but not anywhere normal, INR still high and bili still high.  MELD is around 35 or so...

Docs have advised that after tomorrow we should be reactivated, I hope!!     They also informed us that he is Number 1 on the list(even with him inactive) he is still # 1.

I know, its just a matter of time!!!!!!!!  Trying to stay positive and hope and pray that the infection is gone and that  he is reactivated tomorrow!!! 

I will keep you updated after the test tomorrow!!  Hope to have good news.

Amy

Wow Amy!! What a roller coaster ride!! It's good your there tho and they plan on keeping him . . It'll be soon . . especially with this being a holiday week . . sad but true!! Get that infection cleared up John!!

Keep us posted . .we wish you and John healthy days to come!!

Debbie

Amy,

  Thinking of you both.  Sounds like that surgeon has your back.  And, he will help make it happen.   Soon hopefully.

Wishing that liver godspeed your way.  Hope you are getting some rest.

Angie1953

Ok, Update.... we are home again! The counts are down, however he is still inactive until they get the final reading from the lab tests on the ascites fluid. All I can say right now is that we are spending the 3 days waiting for the results with the girls since we have not spent more than 2 days with them in the last month.

Everyone is happy to be together for the holiday! Hopefully after the holiday we will get the good news that he is active again and he gets a liver real soon.

And, when he went for paracentsis today, we were advised that they can no longer drain him because he has developed pockets in the abdomen and he would have to be stuck multiple times just to get some of the fluid off. He really needs to get this liver so he can start to get better.

As soon as we have any news I will let you all know!!!

Amy

praying

Sorry I have not posted anything but we were still waiting to get the final report from the fluid. As of today, he is relisted, not sure what his MELD score is but the good thing is that he is relisted!!!! I must say it was nice to have a week with the kids and know that we were not going anywhere for a few of them.

We are back in Pittsburgh tomorrow for a dr appt. I have already planned on taking our stuff with us, just to be on the safe side. I would hate to be there and told that he was getting admitted and not have all my stuff with us.

Our transplant coordinator told me yesterday that the TP surgeon wants us down there every other week to see the hepatologist since his MELD has been so high. Hopefully we dont have to do that too much, hoping for the late night call again!!

Maybe third time is the charm.

Amy

Amy,
Taking you things with you is a good idea . . it's great to hear about being active on the list too!! It seems as tho the surgeon is aware of the problems, and the urgency of the TP . . I hope the MELD is up there for ya so all goes quickly to transplant!!

Glad you posted . . I've been thinking of you daily and hoping to see a post!! The week you spent with the kids sounded very positive and well deserved for all!!

Take care and let us know how the appt. goes!!

Debbie