Difficult, difficult decisions

Alan here again:
I just spoke with Mom on the phone, who had received a call from one of the doctors at UCSF earlier today.

In short:

1. A liver became available but the surgical team turned it down because it was too fatty.

2. Mom needs to decide soon whether she wants to go with a liver-only transplant or a liver and kidney transplant.

3. It is thought that a liver and kidney transplant would solve her problem with the reduced kidney function brought on by amyloidosis, while a liver only tranplant would stop the production of amyloid proteins in her body but the kidneys might not recover. With a liver only transplant, it is likely she will need a kidney transplant (possibly from a live family donor) sometime after the liver transplant.

4. It may be possible that Mom would retain the same high MELD score (see http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease), which could enable her to get a liver and a kidney in the same time frame it would take to get a liver only. However, this isn't totally clear.

5. Mom is heading to UCSF right now to be matched for a kidney transplant, since a kidney needs to be a closer match than a liver only. The thought is that she could receive a liver and kidney from the same donor.

There is a lot of uncertainty around this situation and Mother is understandably confused as to what she should do. The doctors have not provided lots of information to guide her in this decision, and many unpredictable factors seem to be at work (the priority scoring system for livers and kidneys, the possible difficulties in finding a kidney match, the views of the surgical team, the availability of cadaver donors, etc.).

Although Mom has been feeling bad and getting worse, she isn't feeling deathly ill, so looking forward to a major, major surgery (liver and kidney transplant) followed by difficult months of healing and recovery sounds very unpleasant.

She needs words of encouragement and our prayers.

Ready????

Last night while I was at the temple the UCSF liver doctor phoned. The transplant powers and the doctors had a conference that morning and I was granted an exception score of 32. That means I am very, very close to getting a new liver. There are three transplant centers in this area and at UCSF I am at the top. The doctor said it could be this weekend or a couple of months. I am really scared now! It is a hard recovery--at the meeting they said I would need someone 24/7 for three weeks. Poor Lon.
My kidney function has gotten much worse, so hopefully with the new liver not producing any more wayward fibrinogen they will recover. I will be the first to receive only a liver. I never imagined I would be the first to try out a medical procedure. It's officially time to gather all my courage (and sass and stubbornness and will!)
Prayers are still needed!

Liver transplant patient and family mandatory education class

Alan here:

Today I went to UCSF to attend the orientation meeting for prospective liver transplant recipients and their families. Mom and Dad were there too, of course, along with about two dozen other people.

The meeting was held in a conference room on the liver transplant floor right down the hall from where the transplantees are recovering. Seeing the ICU, nursing staff and the hospital beds being wheeled around made me realize how close (hopefully!) Mom is to receiving a transplant.

A liver transplant is a very big deal. We learned about a bunch of stuff: the priority scoring system (see www.unos.org), getting ready for the surgery, the size of the incision (huge), potential complications, medications (many), family support, thanking the donor family, etc.

The hospital people seem really nice.

I also turned in the completed information packet to be considered as a kidney donor. After the liver transplant, that might be the next step.

Cathy has a birthday on March 19!