On A Search For Meaning
My experience in the Kidney Donor Program
I had never understood what it meant to find “meaning” in loss. How could there be any meaning in losing my baby and living with the eternal heartache of loss? Then one day, on an ordinary day, I could have sworn, I found it!
In early January 2022, while facilitating a support group for bereaved families, we discussed the topic of “Ways We Honour Our Babies” where I shared that later that year Declan would have been turning 10 if he had lived. He died because his kidneys failed him and I mentioned in the conversation that had contributed financially to various organizations over the years that make an impact of curing kidney disease but that I wanted to do more this year; something with added meaning to honour my son. “Maybe I should donate a kidney!!” is what I said aloud, then laughed for some reason. But that idea stayed with me through the days following. I could not shake the idea from my mind. I found myself seriously considering the idea.
I met with a friend later that week and while looking at his social media accounts together, my path crossed with the Transplant Ambassador Program (TAP) where a volunteer had posted about being a kidney recipient who would be celebrating 10 years of their own successful transplant in 2022. It was a sign. It was THE sign I needed to move forward with my idea and began connecting with living donors to ask questions about their experiences. I knew in my heart it was something I wanted to seriously consider and there was an odd sense of calm in this contemplation. I really felt like it was something I was supposed to do in this life. A part of my purpose.
In the meantime, somewhere between my support group night and connecting with the transplant clinic, I met up with a friend (who had been a pillar of support for me when Declan died) and I told him I had some good news I wanted to share. He told me he also had something he wanted me to know about, but it was not good news at all. I could sense the seriousness in my friend’s tone, but had no idea that the news would be that he had just found out that he needed to have a kidney transplant. He needed a kidney, and I had a “spare to share” so the slogan goes. I was stilled by this revelation. The stars had aligned, but I was the only one who knew in that moment.
We started the donor process in March of 2022, only a few weeks later, and after several months of (invasive!) testing we were told my kidney will have a 95% working capacity once transplanted into my friend - we were a match! A MATCH ..! NINETY-FIVE PERCENT! Only one in four people are eligible to donate, and I was one of them. We had found a solution, and I had found what felt like meaning in my loss. Meaningful purpose. I would honour my son by saving my friend. Finding meaning is not to say I would not give up all my learnings in exchange for having my son back. I’d trade it ALL in a heartbeat to have my him here with me now but I was reminded that there can be moments of joy amidst heartbreak.
We didn’t share this victory with many people, as my friend was not ready to share his illness with everyone yet. I was ready to book surgery immediately, but sadly we have had to watch my friend get sicker and sicker as they will not take a healthy organ from a healthy donor any sooner than necessary. We had to wait for his capacity to get to under twelve percent before we could book the transplant, and all the while I have been monitored and continued to pass all of the tests. The doctor said on more than one occasion “You are one healthy individual!” Testing was usually a full day ordeal where I’d take a bag to the hospital filled with things to keep me busy as I waited between appointments. There was a LOT of waiting. Every three months in 2022, I passed these tests. Every three months in 2023 I passed these tests. I continued to be tested and I continued to pass in 2024.
Until .. I failed.
The renal scan shows the donor’s overall kidney function which is seldom 50/50. Mine had been sitting around the 43/57 mark most of the time which made me a good candidate because they need the donation kidney to be at least forty percent. For some reason, in July 2024 my ratio shifted and showed results of 38/62. There is no risk to my heath because of this shift because my function is still 100% overall, but 38 is not high enough to donate. There are seldom any retests done for this process but it was allowed because before this result my previous numbers had been fairly consistent - for the last two and a half years. We retested in September and hoped there had been just some sort of error. We would be back on track once I passed this round. This did not feel like an obstacle for my friend and I. We started discussing dates and were looking at November for surgery.
A few days after the retests, we both received calls from the hospital to say that I have in fact been disqualified from the Living Donor Program. Once you fail a round, you’re out. My friend called me immediately after receiving the news, and we cried together.
I’m devastated. Angry. Sad. Scared for my friend. I feel like I’ve lost part of my life’s purpose of honouring Declan by saving him. I have been sitting with this news for almost three months now and it all still feels raw and unreal. I’m grieving the vision I had for solving my friend’s health issues. I’m grieving the loss of ability to do something profound in honour of Declan. I’m grieving the pain and suffering my friend is feeling as a result of our news. I’m grieving the loss of the meaning I thought I had found.
This is one of those things that is beyond my control and I’m trying to convince myself to trust the process, but it’s not easy. This failure is a reminder that I need to let go of the outcome and stay present in all that I do because we cannot plan for everything. After many weeks of struggling to “fix” this, I am surrendering. It’s taking stillness, breath-work and a whole lot of tissues to do so, but I’m doing this healing work to become centred again after hitting the brick wall of disqualification. Amidst the grief there will be meaning in this too somewhere. It’s just not obvious to any of us yet. As I head into the week of the anniversary of losing my son, my grieving heart is grateful that his existence gave me the courage to try something I probably never would have considered before him, and I find that to be meaningful in itself.
