Now for a slight change of plans…

In April, my doctor told me it was time to start dialysis and had me meet with a peritoneal dialysis nurse. That went fine, although no one here was really looking forward to shipments of 120 bags of solution every month. (Where on earth would I store them?) And trying to figure out future travel plans was even worse: I was picturing me and TSA and a portable dialysis machine ;-)

Two weeks ago, I met with my doctor (this happens frequently). This time, she told me I could go straight to transplant if I wanted. Given that I’m extremely logical, and given that I’m going to need a transplant anyway, I’m perfectly fine skipping the “dialysis” step.

In two weeks, I meet with the transplant team at MGH. This is an all-day affair…looks like there’s a lot to learn. I’ll meet with the surgeon, transplant coordinator, nutritionist, financial specialist (transplant drugs are really expensive), and a few other people. I’ll have more lab work done. (Yay! More needles!)

And I’ll have more information on what comes next.

What I do know is that I do NOT need a transplant immediately. My numbers are in the “let’s get prepared” range. I have time. How much? No one knows for sure. But I won’t be scheduling surgery any time in the next three months.

I’ve already started researching transplant information. I’ve gotten pointers to several websites. (I always feel like a fraud on those sites…I’m so not sick when compared to what other people are dealing with.) I’ve talked to a friend who was a live donor for someone she didn’t even know. But I know I need to learn more. (Have you figured out yet that I’m really proactive when it comes to medical stuff?)

Let me know if you have any questions, or if you think of questions that I should ask during my “transplant information” day.

And thanks for being here :-)

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