On Friday, I spoke with my nephrologist. They have a kidney recipient picked out, and the donation will kick of a 5-person chain: 10 surgeries and 5 transplants. I was hoping for a long chain, so getting this news is extremely exciting and happily emotional! Below is an example from Wired of what that looks like (Just picture it without the 2 blue squares so there is 5 pairs, not 6).
Now that we know how many people are involved and that there is a proposed chain in place, this is starting to feel much more real. It’s exciting to think that 9 other people out there this week will be getting a call with the good news. I hope that they are all as excited as me!
Just because the match looks good on paper doesn’t mean that the recipients won’t have antibodies to the donors’ antigens. Over the next few weeks, the doctors will do a virtual cross match with each potential pairs’ blood through the HLA lab. Occasionally they will need a member of the swap to provide updated blood samples for this. If that all looks good, then they get down to actual cross matching. This means they mix a vile of each donor’s blood with a vile of each recipient’s blood, and watch to see if the blood “likes each other.” The test will be positive or negative. You want it to be negative. A positive result means that the recipient’s blood is fighting the donor blood. From what I understand, it is possible that 1 or more of the kidney pairs may not be ideal- and if that happens they start looking to swap in a different eligible pair that will allow the chain to stay intact. This essentially can result in a shorter OR different paired kidney exchange at the end of the day. If you are interested in the science behind cross matching, panel reactive antibodies, or anything else that better explains how matches are paired, The Living Kidney Donor Network explains this testing in detail.
If the blood for all 5 pairs react well, we can move forward to getting a date on the calendar for the 5 transplants. All 5 transplants will be done at once (or over 1-2 days), and they will all be done at Northwestern Medicine. There is a reason they do it like this which I will cover in another blog because it is really interesting and had me asking a lot of questions over the past few weeks.
What’s really cool too, is that this chain will take 5 people off of the deceased donor waiting list. The people waiting for a deceased donor wait on average 3-5 years for a transplant, and are often on dialysis that entire time (awful, horrible, poor quality of life). Everybody else on that list gets a big bump up on the waiting list when the 5 people in my chain get transplanted! That’s pretty powerful when you consider the ripple effect of how many people besides my new kidney family of 10 will be effected by this.
If you look at the diagram above, you will also see that the chain ends by the final kidney in the chain going to somebody on the donor waiting list. In the past month I have spoken with a few women my age who are on that list. They are both on that list because there is such a limited number of people who would be eligible donors based on the antigens in their blood. One woman has had 18 friends and family members come forward to donate, and the other has has 22 come forward- not a single one has been a match. Non-directed donor chains can get women like this a shot at a miracle. Fingers crossed that the person at the end of the chain is someone like that who has a harder than average time getting a good match. They would be the grand prize winner in that scenario!
So, in summary, I’m excited as all hell that they found a long chain that will allow me to help multiple people, and truly maximize my 1-time gift. So far I can say I highly recommend this journey if you are considering doing it. I feel GREAT, and its been a powerful experience learning how this works; the more I learn, the less I know, and the more I want to know. The fact that we all house this spare bean in our bodies that has the capacity to save multiple lives is a beautiful gift! Besides our liver, what other natural resource are we born with that has the capacity to do such good? So keep thinking about it, and call me if you want to learn more!