April is my birthday month. It’s also National Donate Life Month, and I’m a living kidney donor.
It all started when my husband Tony was diagnosed with Polycystic Kidney Disease. PKD decreases kidney function until there is failure and death. Besides trying to prolong life a few years through dialysis, the only other chance at survival is a transplant.
There is always risk: that a person cannot receive a kidney, that a match cannot be found, or that anything can go wrong along the way. But Tony’s disease progressed quickly and we faced a transplant sooner than expected.
The wait list for transplant is long. People die every day waiting. The person in need must go through extensive tests before they can even be determined as a possible recipient, and through this they must also endure meetings, endless medications, pain, and waiting. Meanwhile, their disease still progresses and they are left wondering if they have a future. The day finally came when the doctors told us Tony was a candidate!
I made my intentions clear early that I wanted to be tested to donate. At first, there was an issue due to blood type differences. Now no longer an issue, I began testing. Meanwhile, we told our friends about Tony’s need, leading many to register online to see if they too could be tested. In the end three people including myself were cleared for advanced testing.
Friends and family donated money and created fundraisers. Since we are both self-employed, we would be out of work for a few months before and after surgery, so our medical related bills and our regular ones piled up. It continues to be expensive, but many like us have no choice since the alternative is death.
I remember the day I learned I was Tony’s match. After months of tests, my coordinator called to tell me. It was the biggest relief. Knowing that no matter what happened going forward, Tony would get a kidney.
Immediately as I got off the phone, I told Tony. He never hugged me so tightly. They also told me I’m a “super donor,” which means I could match a lot of people. Now, before we knew I matched Tony, our doctors also told us about the Paired Exchange program, wherein if the person being tested is not a match for their intended recipient, then the donor could go into a larger pool of donors and recipients to allow cross-matching. This way everyone has a chance at finding a match.
Now that we had this information on my status, we had choices. I decided I still wanted to participate in the Paired Exchange program. There was a chance they could find an even closer match to Tony than mine and we could help the most people.
The following year, when Tony was closest to needing his transplant, we were told they found a closer match than mine that might mean less rejection issues. That was all I needed to hear. Our surgeries were scheduled for 10 days later. We had assembled a great group of friends as our care team and were set.
Then another surprise came. The day before our surgeries, they told us our chain had broken. But, within 24 hours they assembled another one and this one started with my kidney going to a recipient who had been waiting years. I was her only match. We were overwhelmed. I of course said yes and was grateful that not only was I an active part in making the best kidney match possible for Tony, but that I could help this stranger have a chance at living.
Our surgeries went well and July we’ll celebrate two years, along with 34 other people in our chain across America. There’s more to this story.
I can’t express how amazing the feeling is to donate. You can have this feeling too. You can be a living donor and be healthy and live a full life expectancy. And if for some reason you aren’t able to be a living donor, you can still be a deceased donor. Either way you can save lives. It’s an amazing gift.
Happy Birthday to us all.