067- Be an organ donor!- part 1

I remember when I first got my original drivers license at the age of 16. There was a tiny pink circle sticker I could put on it to signify that I wanted to be an organ donor. Now, you check a box on your renewal and the pink circle is permanently there. I've always been supportive of the concept of organ donation but never gave it much thought. Until 2013.

In July 2013, my cousin Karl died as a result of an ATV accident. Being the planner he was (it's a Giacomini thing!), he went above the little sticker on his drivers license, and actually registered as an organ donor. He left no doubt in anyone's mind that he wanted to save lives by being an organ donor. Our family was told that Karl's organs saved at least 6 lives which helped a little to ease the pain we were all feeling during that extremely difficult time.

Fast forward to this year... my cousin Pete Giacomini decided to donate a kidney for the benefit of his brother Henry. I'd like to share some of what he wrote during the days after his surgery to remove his left kidney, aptly named "Lefty." He shares about his experience with the donor approval process, removal surgery, and squashes some myths regarding live organ donation.

“Lefty” is gone. Two weeks ago at University of Wisconsin Hospital in Madison my left kidney was removed. Later in the day it was transplanted into its new home with a person, unknown to me, who needed Lefty more than I do. In the process, my brother Henry moved to the top of the list to likewise receive a new kidney from another donor like me, donating on behalf of someone else, hopefully very soon. 

It’s been a long journey - over a year - since Henry was first diagnosed with impaired kidney function. When he first told me in early 2023 my initial reaction was, “If you need a new one you can have one of mine.” That kicked into high gear last September when, after treatments failed to produce improvement, he was officially classified as “chronic” and placed on the transplant list. Since then it has been an extensive and interesting process leading to my donation today.

Two weeks out I feel great. I’m pain free with only minor tenderness at the incision keeping me in shorts yet for awhile. I’m walking 3-4 miles a day and the only limitations I have is a 10 lb. lift limit for another month. If all goes as planned I’ll be back on the ice, stopping hockey pucks by fall. My reason for talking about my experience is not to call attention to myself but because more people should be willing to do this. Every year 5,000 people in the US who are on the transplant list die because there are insufficient numbers of donors. There are a lot of misconceptions about organ donation in general and kidney donation specifically that prevent people from acting. If I address some of those with others like you, maybe that will give my donation even more value and purpose. 

My experience with organ donation began almost eleven years ago when my cousin Karl Giacomini was killed in an ATV accident near Appleton, Wisconsin. He had previously registered as an organ donor - a step above signing a drivers license. Libby and I stayed with his wife, Stephanie, in the hospital and watched as they posted on the white board in his ER room when and what organs were paired with recipients for his heart, liver, pancreas, two lungs, and two kidneys. We were there when the transplant team arrived by private plane to harvest the organs, then returned to Madison for transplantation. If there was any solace in such a tragic time, the fact that Karl was saving or extending the lives of up to six people offered at least a little bit of meaning to his death.

The following summer Libby and I represented the family at a reception at the Wisconsin Governor’s Mansion honoring organ donors (Steph wasn’t ready, and she and the girls attended the following year). That was my first exposure to “living” donors and  visiting with and hearing their stories was nothing short of inspirational. I remember thinking at the time that would be something I would like to do someday but I never thought the chance would present itself. I learned a lot, then and since, about the need for organ donation and, in spite of the minimal risks to living donors, what the challenges are to increasing their numbers.

The identities of donors and recipients to each other is carefully guarded and shared with the parties only after some time and with clear mutual consent. Right now I don’t know who Lefty went to and I’m not sure I ever will. Some people don’t want to know their donor or recipient for various reasons - for example, it’s pretty heavy to consider when someone had to die for you to live. A few years ago Libby’s sister, Lucy went to the wedding of her friend, Erin Stahl. There Lucy saw the tribute on the back of the wedding program to the person who had saved Erin’s life through kidney donation - under a picture of Karl. It was a shock when Lucy called to tell us. Erin attended Lucy’s celebration of life last February where we met her personally for the first time. Finding Erin was a blessing.

I posted about my donation from the hospital the following day and immediately got a note from Erin. She was also at UW Hospital for a regular appointment and asked if she could come up and see me. Connecting with Karl’s kidney recipient right after my own donation felt like completing a circle of sorts. Somehow, I don’t think it was a coincidence. It made me realize my donor journey didn’t end June 12, it just entered the next phase.

I'd like to thank Pete for sharing this journey will all of us. Next week, please catch Part 2 of this series. Thank you everyone for reading and please share this with your family and friends.