Wednesday, February 4, 2009

Still On The Transplant List:

It has been quite some time since we have updated the blog right? Well no excuses here, I'm just lazy. But on the bright side, there will be lots of interesting things to talk about, won't there?

We have just finished up another round of tests to see if the cancer has spread and make sure I am still a candidate for liver transplant. This was a couple of tests ordered by the UNOS group, the people who decide who gets new parts and who doesn't. The tests both came out good. The CT scan showed no signs of growth. The other test was the dreaded Octreotide Scan which makes me radioactive for almost a week. Luckily we were able to schedule that test to coincide with my going to Arizona for my Dad's knee replacement surgery. That test also showed no signs of spread. They also said there was less uptake of the chem in the tumors which, as far as I can tell, is a good thing. So with these positive results, I am still on the transplant list with a score of 22. In three months I will be taking these test again. At that time, if all is good, they will be increasing my score to 25. Right now, at UCLA, they are transplanting livers for people with scores of 25 to 27. They still expect I won't receive mine until another nine months or so from now.

When this whole thing began, and we started looking at the possibility of a liver transplant, they told us about the possibility of doing a living donor (LD) transplant instead of a cadaver. At the time, I really didn't like the idea of that, and I'm not even going to try to explain to you why. Recently though we have started to re-evaluate this possibility. UCLA has a policy of only considering LD if the person is from the same family. I asked them why and the response was, "Our general policy is that it is family due to the extreme invasiveness of the procedure and the psych aspects". Although I think they would make exceptions. But not only does it need to be family, you of course have to be the same blood type.

Sarah, my sister, came to me recently and said she really wanted to be my donor. She got her blood tested and it turned out she was O+ like me. We called my coordinator and she got Sarah in touch with her own Coordinator to start the process of evaluation. Holly crap!! The idea of getting part of Sarah's liver is very exciting. We are both very excited about it. I have looked into statistics a bit and it looks like people who have LD's vs. Cadaver's livers typically do better. So that's cool.

Sarah spoke to her coordinator today and there is some question as to whether her liver is going to be big enough for me. I am quite a bit bigger then her. They are talking to the Surgeon to find out what he thinks.

Whether or not this works out, I can't help but feel lucky. Not only did Sarah offer to do this for me, but everyone else in my family did also. I am a very lucky person to have such a great family. And that is the biggest understatement of this blog. I can't tell you how much they mean to me.

On another note, my Dad is doing great after his surgery. The day I left, he was actually able to get out of a chair and into his bed on this own! Wow!!! I am really proud of him and his determination to get better so he can be with me during my surgery. Seeing him in the hospital has also helped me be less scared about what is coming up for me in the near future.

3 comments:

Anonymous said...

Hi Mark,
I have been following your blog for quite some time. I also have PNET. Are you still taking Nexavar? I haven't seen you mention it for quite awhile? Glad you are still stable. I have been on Nexavar since May of last year and my cancer is stable too. - Cindy Danks

Anonymous said...

Hey You,

Just so you know your family loves you more than anything in this world! However, I love you more than any of um!LOL LOL LOL LOL. Glad your doing well. I love you and miss you so much. It was great to see you and I cant wait until next time. Take care and I will talk to you soon!
Sissy

Anonymous said...

Thanks for the update, it's good to see that the news continues to be positive on all fronts! Melissa