We’re five weeks post-transplant and I’m getting questions about how I am and about living donation. This is a great place to document that, even if the info is pretty dry. Before starting, thank you for helping us reach our goal. We are grateful for your kindness and generosity. I’ve still got thank you notes to write, but am finding the days passing in a blur. I promise that I’ve not forgotten them or you.
As most who’ve been following the blog know, Arabella started testing to qualify for transplant in June and I started testing in August to be her living donor. My initial tests included blood work to ensure we were a good match for type and antigens. Once that cleared, I was able to do additional testing. Both the intended recipient and the potential donor have the same/similar tests. Because I’m Arabella’s mom, I had an inside view of her testing, but under normal circumstances there’s a privacy wall between the two people–and for good reason…both sides need to be protected during the transplant process.
Some people think the purpose of the living donor program is to find a living donor for a person in need. It’s actually almost the opposite…the purpose is to protect the health of anyone who wants to try to donate an organ while still alive. By donating my kidney to Arabella, I’m at an increased risk for cancer, diabetes, heart problems and kidney failure. The program that tests a potential donor wants to ensure you live a long, healthy life and that you’re currently healthy enough to give up an organ that would be a good fit for your intended recipient. After labs, I had evaluations by a nephrologist, surgeon, dietician, anesthesiologist, psychologist and social worker. I had two CT scans, a chest x-ray, ekg and stress test. Before I could begin testing, they needed results from my last mammogram, pap smear and colonoscopy. In the end, they ran everything through a program and showed me what my increased risks were by donating (minimal). One of the most important parts of testing was the physical anatomy of my kidney. First, they checked to ensure I had two–some people live their lives with one kidney and are never the wiser. You must have two to give one away. Also, for donation to a child at Cincinnati Children’s, you can only have one vein and one artery to the kidney. Apparently, it’s not uncommon to have multiple “contact” points, but if that occurs in our program, it’s an automatic disqualifier. (It’s not uncommon in the adult world to use such a kidney. Each program has its own rules.)
During all of our meetings on Arabella’s side to prepare for transplant, each practitioner told us both how much harder the surgery is on the donor than the recipient. As it was explained, the recipient immediately receives a boost by having the transplant (a working kidney), while the donor actually loses something and comes out of surgery automatically worse off than when she entered. A living donor is at higher risk for feelings akin to post-partum depression. Arabella scoffed at the general wisdom and thought that, if true, it was because the recipient was more suited to withstand the pain of surgery because of all they’ve previously endured. Added to this, my hospital used a non-narcotic protocol for pain control. They had me start Tylenol and gabapentin the day before surgery. Before surgery, they gave me a patch behind my ear for nausea and they had me consent to a nerve block that would be performed after surgery, but before I awakened. Bottom line: Arabella had me convinced I might never walk upright again due to the pain and the hospital had me convinced that I would never be pain free because they would send me home the next day with some Tylenol!
My sister and my childhood best friend came to Cincinnati to stay with us. During surgery on Tuesday, Jeff & AJ were at the Children’s Hospital with Arabella while Kim & Cheryl were with me. That night, my sister stayed with Arabella; Jeff stayed with me; and Cheryl brought AJ back to our apartment. Happily, surgery was an amazing success. Arabella’s kidney produced over 70 liters in the first 24 hours! I was discharged early Wednesday afternoon and stayed with Arabella until late evening. My sister stayed at the hospital on Wednesday night before my friend took over the next two nights. I stayed at the hospital with Arabella from around 10 am-10 pm each day, getting rides to and from the hospital to sleep at the apartment. On Saturday, my sister returned home and I was able to stay with Arabella 24/7 at the hospital until she was discharged. My friend stayed with us a final night on Saturday, playing Millenial Monopoly and having a nice visit, before returning to her family on Sunday. Jeff & AJ bounced back and forth between Cincinnati and Louisville. I couldn’t drive for two weeks, and when Jeff returned to Cincinnati to drive me to my follow-up appointment, we agreed that getting my wisdom teeth taken out during college had been much harder. My only remaining restriction is not to lift over 10 lbs and I’m following that faithfully to avoid a hernia. When asked by one of the nephrologists, I told her that it was much harder sitting through Arabella’s hemodialysis appointments than having my kidney removed. Arabella has pointed out that she knew everyone had it wrong all along anyway! In the end, it’s amazing to think of what a miracle it is that I can live with one kidney and that because of one kidney, Arabella can live without being tethered to a machine. So the answer to how I’m doing is two-fold: I’m fine. And I’ll be better once we get Arabella to a place of consistently feeling well.
It’s humbling to think a life can be saved by giving up something that you don’t absolutely need to begin with. On this journey, we’ve met so many people who need a transplant. According to the National Kidney Foundation, 13 people die each day waiting for one. If you have questions or any interest in becoming a living donor, reach out to me…I’m happy to give you as much information as I can.
Tonight’s picture is of us the day Arabella was discharged. My shirt says “Living Donor–See Inside for Details.” Arabella’s says simply “Kidney Thief.” They were sent to us by a beautiful friend and her sweet mom who donated on that day. Our little friend is back in the hospital and she’s having a tough time of it. Please keep her in your prayers.
