As with any medical process, it seems it's always two steps forward, one step back. Louie not only reached his goal, but surpassed it by almost 2 kg last week. In light of that, I began asking at dialysis what the process is now....where do we go from here? They didn't know, so I reached out to the Nurse Coordinator and let her know he reached the goal. After a bit of back and forth, which takes days because even when I immediately reply, she has 48 hours to respond, she told us she had taken his case to the review board.
In speaking to the transplant team and nephrologist scheduled to see Louie in August, it was decided that he needs to continue dialysis until the first week of August when he has the annual re-evaluation. If everything still looks good like it did last year, they will consider him for active status on the list at that time. Hurry up and wait.
Last year after the initial evaluation, it took over 2 weeks for a response from the review board. If that happens again this time, it will be roughly the 20th of August before he can potentially be active on the transplant list. If the doctors and nurses here are correct, it will be a month or two on the list before we get the call (but there are no guarantees and it could be longer), which puts us into September or October, then 6 days in the hospital, then 6 more weeks here before he is released to go back home. What we thought would be a short-term gamble is suddenly extended by almost double, best case scenario.
We have this house until the end of August, and the landlord will let us extend it, but I am in the process of looking for something cheaper. It sucks to have to move in the middle of this process, but frankly we can't afford this house for 6 months or more, and the money is non-refundable so whatever we pay for, we need to use, if that makes sense.
So, while I wish I was sharing only good news, this is kind of a double-edged sword. We can't just leave and come home- nothing has changed on that front. There is no way to get him back here in time for surgery when he gets the call, and we're already here. So, after long discussions yesterday, the plan is to keep focused and put some more distance between him and that goal number, and wait for the evaluations the first week of August. After that, depending on what they decide, we will have some decisions to make.
Please keep the prayers coming. It was such a good week hitting that goal but the message from the Nurse Coordinator kind of took the wind completely out of our sails. We're still pushing, still working on it, still fighting...it's just going to take a bit longer than either of us anticipated.