Weekly Wednesday Update - 9/6/23

Posting this a day early because I felt the need to write this.

A lot of highs and lows since my last update. This past week was a rollercoaster beyond the usual spectrum of typical chemo-onset emotions. After I wrote my last update I felt severely fatigued, physically like normal after an infusion, but also mentally with the entire process. I have been doing these infusions every-other-week for nearly the past year and, I’ll be honest here, I’m getting pretty tired of it. I’m tired of it, not just for me but for everyone around me, Kelly, the girls, all the people who support us, it has been exhausting. I can’t tell you how often I stare at my phone wishing for it to ring and hear those magical words, “we have a donor for you.” 

And last Friday I got that call. 

It was a pretty typical chemo-Friday. Having just completed my 46-hour take home pump, I drove into the clinic to get disconnected and feel the euphoric freedom of not wearing that gigantic fanny pack everywhere. Everything was pretty typical. Now for the next couple days after I get disconnected there are moments where I just feel so cruddy I just need to lay down for a while. During one of those moments my phone rang. A number I didn’t recognize. A 734 area code though, so I picked up the call. 

I was finally getting that call. The call that was going to end this seemingly never ending cycle of chemo, and finally give me that opportunity to put so much of this behind me and start again. The voice over the phone explained to me that they had identified a potential donor, and that I would need to come into the hospital as soon as they called me again to let me know that they had secured the organ. They explained to me the risks and gave me some instructions, but to be honest I only heard about every third word. I was ecstatic. 

We started packing, and while I thought I could live in the hospital for 10 days with the contents of a backpack, Kelly disagreed and soon we were packing a carry-on full to the brim. We waited for that next call. The phone rings. They explain that there’s been a delay getting the donor to an OR to retrieve the liver. This donor was a DCD donor, which means donation after circulatory death, and as an organ donor, their organs were being harvested for likely a bunch of other people beyond myself. This donor was at an outside facility (I still don’t know where), and the team at UM was doing all it could to coordinate the handoff but this outside facility was “struggling to find a surgeon to do the case”. 

Phone rings again. We’ve been punted by a day. It looks like they’ll be able to retrieve the organ on Saturday evening and we can get into the OR for my transplant on Sunday. No matter. I’m ok waiting. So we continue planning and organizing things so that we will have people to watch the girls, and sit in the waiting room with Kelly for the potentially 12 hour procedure. There’s a lot of logistics involved and we weren’t really prepared to get this call. Like I said in the previous update, it was a non-zero chance but still a very slim probability that I would ever be offered a deceased donor organ. But it was happening.

Saturday afternoon and the phone rings again. Once again I’m laying in bed, sore and fatigued from the chemo. Immediately I could tell by the tone of the voice on the other end of the call, that something wasn’t right. They informed me that because it had taken so long to get the donor to an OR, their organs began to fail and this was no longer a viable option for me. I was crushed. I had the golden ticket and I honestly thought I was going to make it to the finish line, but it was snatched from my grasp. 

So since then I have felt a range of emotion: 

• Sadness and grief over losing the opportunity for myself, but also the opportunity that a number of others may have had from this organ donation that experienced the same loss as I had

• Depression and feeling like this whole thing may never truly end

• Anger that we were so close, and from the sound of it, the incompetence of this outside facility to make this happen caused a major loss for me and others

And I’m still angry, and sad, and depressed, but I’m getting closer to my emotional baseline with each passing day. 

So for now, we keep pressing on the same as we did before and continue to hope that the call comes again, or that a living donor match is identified and we can move forward either way.