Posted 1/16/2015 10:20 AM (GMT -6)
Themister had his MRI and labs this week. He has been on the transplant list since July 2013....and had not moved much in any direction until this visit. He is ticking upward with MELD.
In October, themister was well enough we asked the tx coordinator if he felt we could go out of state to a family wedding. It was only 3 days, but a lot can go wrong in 3 days with my husband. We were given the go ahead, and the best tx coordinators in the world thought it was a "good time" to do that now his HE was controlled more, nothing crazy happening, and themister was "stable".
We got over excited about this new found freedom to travel...decided to plan a trip to visit our home town after the holiday's. We won't be doing that now.
Themister has been more ill. Looks old. Is tired. Small cuts and scratches bleed and won't stop easily. He sleeps an hour or two longer each day. No longer wants to walk the dog. Everything is a huge effort. Forgets everything. Not HE forgetting, this is something different, but HE peeks in too regularly. More jaundiced. Not functioning on his old, normal, "stable" level.
He told me he thought his MELD would be higher because he felt different and knew something was worse. He knew he was not as well as he had been. And he was right. MELD is 18, MELD-Na 20. First time out of low-mid teens.
The tx folks will now pull labs in 3.5 weeks, not 90 days from now. We were asked how long it takes to get to the tx center. The whole conversation was different. More about distance, timing, and being available. We will be.
Then there is this thought...because we are all about saving his life right now. And this changes everything. We knew when he hit 20, we would decide about this one thing. Mayo AZ offers at 28. We want to have his tx where he lives, where we are comfortable, where everything would be easier. Who doesn't? But, but, but. Themister has type "0", which is usually a longer wait. We decided we will wait for the next lab, yet there is a thought about dual listing now. Some tx centers are pumping out 175 tx a year, transplanting at MELD's that are lower. Close to the MELD he is at now. Can we afford it? Is it worth it? Will he survive to get to the top here in AZ?
Is 28 that much higher than 22, in this process? Risks, rewards??? Any thoughts, boardies? Big Hugs