2 years and 137 days

Mass General Hospital has taken a very hands off approach to my kidney disease. When I was with Lahey Clinic I would get regular phone calls from my coordinator. MGH never calls me, unless I call them or email them first. I'm not saying this is a bad thing... I'm just mentioning it.

When I first moved my care over to MGH they did a full work up on me. Based on what I had heard from the coordinator at Lahey and from my nephrologist I should have expected one of these work ups annually. When I hadn't heard from them by fall of 2014 I had decided to contact them in December to ask if I should be coming in for my annual visit. I was told at that time that MGH had changed their process relative to the typical transplant centers and only asked their clients to come in every two years. So I was to expect an appointment sometime in the summer of 2015 to re-evaluate my condition.

All summer I've been anticipating a phone call or letter from MGH asking me to come in for a full work up and re-evaluation. This week I decided it was time for me to make the first move and contact them. I sent an email to my coordinator and she called back about 20 minutes later.

MGH has once again changed their process. Now they estimate your transplant and don't have you come in until approx one year before estimated time of transplant. In my case being of blood type A in Massachusetts the average wait time is approx 4 years. I've been on the wait list for 2 years and 137 days (2 years and 139 days on the day I'm writing this). So in about 6 to 8 months I should be called in for the workup (assuming the average wait time doesn't change to 5 years).

This is actually the first time I've really had any inkling of an idea about when to expect a transplant. In a little over a year and a half I should be somewhere near the top of the list. Its kind of nice to know that. I can now work out how many more times I'll be able to enjoy eating sushi... an important thing to know when you love to eat sushi and know that after a transplant you aren't supposed to eat it.

I'm also not a guy who likes exercise... I'm just too darn lazy to make time for it. Hey! At least I'm owning that. But having recently turned 50 and knowing that surviving an operation like a kidney transplant can often depend on your physical health, I often ponder when I should start taking my lack of exercise a little more seriously so I'm prepared for the operation. I mean why exercise for a year and a half if I really only need about 6 months to get my 190 Lbs of twisted steel and sex appeal back into shape? Clearly I'm putting off the inevitable.

Knowing that I've been on the list for 2 years and 137 days allowed me to also estimate the number of needles I've had poked into my arm. I'm somewhere up in the vicinity of  520 and there's a path of tiny needle scars from my wrist to halfway to my elbow as evidence. A sort of history of my days on dialysis. A calendar if you will. Notches in my lipstick case... only its my skin.

Somehow this knowing about the approx 4 years has given me a sense of direction and purpose. A goal to actually aim for. Being over the half way mark upon finding this out is also a favorable place to be. I theoretically have less time left than the amount I've invested. That is a good feeling. Like taking a loan out on a car and being more than halfway to having it paid off.

That's pretty much all I have for today.

My name is Bil... and I have kidney disease.