Tuesday April 21, 2009

Friday Robbi was feeling bad so she called her transplant doc @ Hopkins and he said he wanted to see her Monday morning. So we made the trip to Baltimore in the pouring rain yesterday.
He said her liver is "going downhill fast" and give or take she has 6 mos to 1 year before she will need to be transplanted. They did bloodwork and we started on the trip back home. Before we got anywhere near home, Robbi was nauseated and looked terrible. When we got back, she had to lay down, had chills and couldn't get warm, and had a fever.
Mike ended up having to take her to her local hosp emergency room. They scanned her, did labs, etc and gave her some morphine and something to bring her fever down, and some antibiotics for urinary tract infection, and contacted JHH who said she did not need to be transported down there.
So today her hubby is staying home from work to take care of her, and she still feels pretty bad. Hopefully its just a bug she picked up and she will be feeling better soon.
Her next regular scheduled appointment is June. We won't know her updated MELD score till later today, from when they drew the labs yesterday at Hopkins. Her last one was 17.
Thanks for all your well wishes for Robbi.

Robbi's Mom

Saturday April 17 2009

Robbi was having a few symptomatic things going on yesterday, spontaneous nosebleed she couldn't get under control, a couple other things I don't think she would appreciate me putting on the blog, so she called her hepatologist @ Hopkins and he wants to see her Monday morning at 10:30am. He said he will get blood work done then too. Maybe we will get a new MELD score. Please keep her in your thoughts this weekend.

Robbi's Mom

A really quick note to let you know Robbi is doing ok. Shes still a yellow-ish color, something I didn't really realize till lately because its been coming on so slowly. Whites of her eyes are still white, though. Shes starting to have problems with ascites. And the itching has gotten a little bit better but not much. Her spirits continue to be good (as it relates to this issue) but still NO LETTER YET! Its Friday!!!!

Robbi's Mom

Waiting on the Mail Bunny, Not EasterBunny

Hope you all had a nice Easter. The whole family ate Easter dinner at Robbi's, with the kids and grandkids, and Mom & Rich. My girls are very good cooks!
This week is the one we are expecting the letter from Hopkins regarding the waiting list. Pins and needles, man!
Robbi got a letter last Friday from Hopkins, on the 29th this month they are having an all day seminar for pre and post transplant patients, her surgeon is going to give a talk about how the surgery goes, and a few other speakers, then lunch, then a tour of their transplant unit.
That should be interesting.

UNOS: What it is and How it Works

http://unos.org/

Here is a wonderful website for UNOS explaining organ allocation and how their organization operates.

How they calculate the MELD scores

The MELD score is what determines who gets the next organ. Its an allocation system I am just learning too, as the year of my transplant was the last year before they initiated the MELD system. Anyway, heres a link to how they do it and why:
http://www.janis7hepc.com/transplants5.htm#How%20to%20Calculate%20MELD%20score

THURSDAY April 9 2009

Today is the day the Medical Committee meets to discuss Robbis case and decide if shes a candidate for the transplant list. Please keep her in your thoughts today. We will get a letter next week to let us know what their decision is. Nail-biting and pencil-chewing time.

Robbis Mom