The MELD Goes On.....
So, we spent the day on Tuesday at UWMC for more meetings, tests, etc. This all went very well. Alex's MELD is still 18, where it has been holding for a while, which is good. Transplants are currently happening at 24-26 from what the surgeon told us. So, we have a ways to go, but as always with Alex's condition, it could drop back to 15, or jump to 30--and vice versa. So, we are just hanging in there for now.
A Tidbit of Awesomeness...
They are considering Alex for a liver/pancreas transplant. This is very cool. They haven't done one at UWMC, but their surgeons have at other facilities, including Dr. Reyes, who does them frequently at Children's Hospital. With a new pancreas, Alex would no longer be diabetic or have pancreatic insufficiency. Which would all be great! There is, however, more risk involved and they haven't decided if they want to do it or not--we are just being 'considered' at this point.
We got to meet with a transplant surgeon for an hour and go over all the risks/benefits/and liver types that we have options for. This sounds strange, but there are a few different types that come along, as follows:
Liver from a donor who is clinically without brainwaves:
These are the ones that allow for the most preparation, as the process of decision to donate is typically made a bit more in advance and the surgery is not rushed but a more orderly process in terms of collecting the organs (they are technically a 'harvest', but even when I worked in surgery I didn't like calling them that--that is a person who God created and is loved by a family, after all).
Liver from a donor who may or may not clinically have brainwaves but is determined to be unable to live without life support:
These donors fall into that area where it is felt that they will not live without significant life support, but with it they could live for sometime. Therefore, the family must decide which route they wish to take and if the life support is removed, then they wait until the person has passed away (no longer has a heartbeat) and then proceed with the surgery to collect the organs. This is a bit more hasty, as they must remove the liver within 30 minutes of the heart stopping. Therefore, there is a small chance of increased damage to the liver, and therefore a small chance of increased complications.
Hepatitis B
Seems strange to transplant a liver with disease, but since Alex has the antibodies to Hep B through the vaccine, it wouldn't make him sick.
Hepatitis C
In the very worst case of scenarios, i.e. MELD of 40, we can accept a Hep C liver that is not damaged yet by the virus. However, in any other case, they would give this liver to a Hep C positive patient instead.
Split-liver
Kiddos with liver disease get preference in the transplant world, but they only require 20% of an adult liver so they can donate that to a child and also give the remaining 80% to an adult, and the 20% will regenerate in 6 weeks (yep, that is how amazingly we are made!).
The Jist
There are four main types of complications that can occur. Some require only an intervention, some require a new transplant--sometimes within 48 hours. The risks are calculated on the typical donor age of 55, and so it is fair to say that Alex actually has a reduced risk since he is so much younger. Also, the pancreas is a much more sensitive organ, so it has more risks. But, not being diabetic anymore will reduce so many other risk factors later in life that it will likely be a good choice for us, if we are chosen.
Alex...
Is feeling pretty bad lately. He's started having problems with vomiting, which is a normal but unpleasant consequence of chirrosis. We are working on getting his pain managed better, and God is good in our lives. Some days it's so hard to be patient and keep the faith, but we are making it day by day. It's funny how much things can change. I have always been such a planner, constantly looking to the next five years and trying to plan and push myself to do and be what I think I should, and doing that to those around me, too. But now I am learning to live in the moment, day by day. This was a prayer I had prayed sometime ago, and God answers prayers in such unexpected ways sometimes! But He is good, and our family is trying our best to stay upbeat and look to the future with joy and hope, even on the bad days. I was listening to the radio today and this song by Tom Petty made me kinda smile, since this stanza is so true:
(From "Learning to Fly")
Some say life will beat you down
Break your heart, steal your crown
So I've started out, for God knows where
I guess I'll know, when I get there
Sometimes I feel so helpless, so much like an island being beaten by the stormy waves of the sea that surround us what seems so infinitely. But we are learning to fly---without wings, without our own knowledge and understanding, but still, we fly.
