The Journey Begins

I got the call on April 1st. Unfortunately, it was no April Fool’s joke.

Although I knew it was inevitable, and I had been hanging around the “danger zone” for awhile, it was still a bit surreal to get that call. Hearing my nephrologist say it was time for a referral to the transplant team was a little shocking.

For years I visited the nephrologist only once a year. As my polycystic kidney disease (PKD) progressed, it switched to every six months. Now that I’m in stage 4 kidney failure, I go about every 3 months. With each visit to the nephrologist, a number of tests are performed, but the ones I pay the most attention to are my creatinine and my glomerular filtration rate (GFR). These essentially reveal how much kidney function I have left. My creatinine has been creeping up, which then means my GFR has been going down. I’ve been hovering in the 28-26% functioning level for a little while. This time, however, my kidney function fell to 22% (Coincidentally, 22 has always been my lucky number...not sure this is so lucky). The magic number, if you will, is 25%. Once the kidney function falls below that, a referral to the transplant department can be made.

Yesterday I attended my first session at Maine Transplant, which is affiliated with Maine Medical Center. It was an orientation for people who are at the point of needing a transplant. I was 10 minutes early, but I was the last person to arrive. As I made my way to my seat, all eyes were on me. I’m thinking that they were wondering why I was there. Like when I have my nephrology appointments, I am by far the youngest patient there. I’m sure those people thought I was in the wrong place. Well, sadly, I was just where I was supposed to be.

The orientation was essentially a slideshow with an overview about how the kidneys function, what is involved with the transplant, about donors, the side effects that can occur from a transplant, statistics, etc. One of the first slides was a diagram of options with kidney failure. The arrow pointed to dialysis, transplant, or death. All three sound like awesome options, but I think I’ll choose the transplant.

At the end of the slides and after people had an opportunity to ask questions, we were given a form to sign indicating whether we wanted to move forward with the next phase of the transplant process, or if we had decided against it. I signed my consent to move forward in the process.

The informational folder

On the "pathway", which gives sort of an overview of the transplant process, I am on step two. I just attended the class, so I now need to wait to be scheduled with certain members of the team and then on to testing.

I did not expect to be here at 42, but it is what it is and I will have to deal with it. This is where my journey begins...