Dad Needs Liver Transplant in California!

Good luck with your dad and have a Happy Thanksgiving!

Mehran, Have they considered using a temporary suprapubic catheter instead of the foley? It can be reversed when the crisis is over? We have a friend who was SOOOO relieved to not be poked and probed in that way for a while.

Miami Transplant Team told Mike they could do a kidney/liver transplant as part of the same surgery if it came to that. Mike's kidneys help up and though things are not 100% now, he does not need dialysis...which means he is doing pretty good.

I hope they free up a bed for him tomorrow. 27 is a pretty high MELD! Though some here have been much higher and are still here to tell the tale.

Hugs,
Carol

I wonder if catheter insertion is worse for males? I've never really had a problem with it. At one point, I had one in for almost 7 weeks (was in a spica for 5 weeks, and then locked hip and leg braces.)

Mayo always makes sure I'm under anesthesia before inserting the catheter.

Mehran, I hope your dad can get into UCLA soon!

Hugs,
Connie

Mehran, Hi it's Barbara I just read all the posts, when your dad gets over to UCLA your going to love them over there. I hope we get to meet on this journey.

Barbara

Great news, Mehran, about your dad being admitted to UCLA! Hopefully, a transplant will soon follow.

Hugs,
Connie

Wonderful! I hope he can stay there, too!

Hugs,
Connie

thank God... prayin..

Sandia

Update: They've brought my dads sodium from 118 to 129 over the past few days by fluid restriction and giving him sodium IV's every 4 hours or so. He is much more alert.
His blood pressure is higher but he stills gets light headed when he first sits up and stands up. BUT he is able to get to the bathroom with the walker and help from someone.
No problems with Encephalopathy for the past 2 weeks (this lactulose + xifaxan combined is working well) Dietician here also suggested a zinc supplement because it is known to help with HE. Ordered some on Amazon.

So my dad needed a cardiology consult, oncology consult, and to attend a liver cancer class when we were still outpatient before they reviewed my dads case to make the list.
The cardiology consult was done Sunday as inpatient.

They are trying to get the oncologist to do it inpatient but the coordinator tells me they have rescheduled his outpatient appointment to December 10th. I mentioned I was under the impression he would be inpatient til transplant and she told me that doesn't happen. We'll see what they say here. Either way she said the committee is still going to meet and make a decision this Friday the 30th. and he can do the oncology and liver cancer class afterwards.

They are now requesting a PET full body CT scan, which we haven't done yet at Kaiser. The surgeon put the order in and I assume they will do it here sometime before Friday.

I'm a little worried about what the transplant coordinator said about being pretty sure my dad will be discharged.... I was hoping they'd keep him here. The nephrologists that have been monitoring my dad said his kidney bloodwork isn't improving despite what they've been adjusting on his meds and stuff and they are leaning towards the conclusion that its just the result of the liver problem. I don't know if this means they will keep him here or not. We'll see.

Did some checks on the OPTN unos network data and UCLA did 19 transplants last year for this criteria
age 50-64, blood type B, MELD 25+.
This year they have done only 6 as of august 29th(last data update). And there is only 5 people matching that criteria on the waiting list HERE at UCLA.
I don't know if these statistics are good or bad because it can go both ways. It seems like a good thing?
As for my dad, They said his MELD was 27 a few days ago. I don't know if this is including the tumor points or not.

Post Edited (Mehran) : 11/27/2012 6:12:08 PM (GMT-7)

ML, I weigh the same as when the transplant took place. I've always been slim. But, my size did make a difference.

Hi Mehran,
My stats are similar to your dads. I was 59 when I received my transplant, and my blood type is B+. Having a less common blood type is an advantage, as opposed to a common or rare type.

I know ML, just didn't want anyone thinking that losing weight would get them a transplant.

Hey Barbara,

Things are going alright. We haven't made the support group yet. Do caretakers go sometimes without the patients? I won't be able to make it there tomorrow either though. My dad's life is revolving around this hospital bed here right now.

Update: Committee decided on Nov 30th to review his case again on Dec 7th because they need to see 2 things:
1. Cardiac Surgeon needs to review my dads new echo cardiogram to see if the artery blockage he has will make it hard for his heart to handle the surgery. If it is too much then they must treat that first. If they say it's ok then we are good for this part.
2. Oncology needs to review the PET full body scan that was done on my dad on the 30th just after the committee met. As long as their is no random cancer problems outside his liver we should be good.

Aside from this, my dads kidneys are getting much worse. His creatinine was 4.0.They started him on dialysis yesterday. I wasn't here but my mom told me it was horrible when they first put the catheter thing on his neck. He's pretty weak and on morphine right now for the pain on his neck. The nurse tells me it will subside and he won't need the morphine eventually. I hope his kidneys can survive this.
As of last check his MELD was 29. I've been told by the transplant team that once he gets on the list he will pretty much be on the top of it because of his blood type (B+). So I'm just hoping things work out with my dad's heart and this cardiac surgeon.

When liver's become available are most of the time available with a kidney? or is salvaging both a rare thing? Just wondering that if they decide my dad needs a kidney/liver combo surgery it will mean a longer wait for a possibly rare event? Any other things it affects?

I hope everyone is doing well by the way.

Heya thing,

The kidneys have been getting worse over the past few months. And yeah the evaluation has taken that long also. They say this is common when the liver gets real bad. Also the blood pressure drops from frequent paracentesis for the ascites isn't good for the kidneys also.

Man this dialysis really has my dad feeling down right now. He's telling me he rather die. And I had to try for 30 mins to get him to take his last lactulose dose. "How much longer do I have to drink this crap" etc. I keep trying to tell him its just temporary and let him know we are so close and to just hold on. He's telling me hes tired. His skin is really itchy, he's taking all these diff types of medicines at diff times of the day, blood draws multiple times a day. Constant trips to the bathroom cus of the lactulose. Pain from Catheter sticking out of his neck. Ascites pressure and uncomfort. Poor dad :( I know this is a natural thing for him to feel when he's dealing with so much, just venting ;( Liver disease is a terrible thing!