To be a Kidney Donor

It was 1986, when my sister started dating her future husband, Rob, nobody would ever have imagined that in 22 years. Me, the “little sister” of his girlfriend, a 10 year old, fairly obnoxious child would have the opportunity to change his life. Their story is the classic high school sweetheart. Having 2 younger siblings himself, he was used to my brand of annoying. But he was always nice to me and I didn’t seem to get on his nerves and if I did he hid it well.

In 2005 he was diagnosed with systemic Lupus. Looking back, we noticed all the signs but hindsight is 20/20. Once diagnosed, everything seemed to go downhill fast. 

Over the next few years there were flare ups, changing meds, and learning life with an autoimmune disease. Every flare up seemed to go right to his kidneys.                           Fast forward to one particular phone call I’ll never forget. My sister called me stating the Doctor told them he would more than likely need a kidney transplant in the next 3-5 years. Instantly I knew it was going to be me. It wasn’t a “yay, I’m going to do this!!”,but it was as if I would say “I’m going to make dinner”…..”I’m going to give him my kidney”. I had no clue the in’s or out’s, no clue what was needed to even match, it didn’t matter, because I was going to be his donor. 

One year later, not 3-5 as expected, the process started. His kidneys were failing and I was put in touch with a transplant donor coordinator at a local transplant center. I was anxious to get this started, so he would not have to go on dialysis.                           Blood typing was first thing. He had to have an O donor, and I was O+. Then started a series of tests, instead of getting them all done at one time it was like 1 a month. This part of the process  was more of a  “hurry up and wait” kind of situation. In all, it was almost exactly a year from start to finish. There were a  few hiccups. The first was learning my kidneys were a little “extra”. These showed up on the CT scan. Each had 2 arteries, rather than the 1. This meant the surgeons had to hook up 2 arteries in Rob as well. They said if there are more than 2 arteries one each kidney, I’m out as a donor. So they had to schedule an arteriogram. Many many years ago arteriograms were standard in screening potential kidney donors. But as CT scans became more advanced, they no longer needed to be done. The surgeon didn’t want any surprises (like a 3rd artery) when he went in, so an arteriogram was necessary to confirm I wasn’t “well endowed” in the artery department. I was very nervous about this procedure because I’m a big baby, and did not want it to hurt – I wanted to be put to sleep but they wouldn’t do it. I did get some really nice gas though, and decided cracking jokes was a good idea. I cracked myself up! But a little bit into it, the Dr. said “Ms. Morrissette, I’m glad you’re having a good time, but we need to stop laughing because when you do, it moves the artery”. I had to lay flat and still in recovery for 5-8 hours after to make sure the artery clotted and the clot stayed put. That was Feb 13, and we had surgery March 20. This was 2008, so there was no social media, Facebook, Instagram or even smart phones. I was desperate for information, I wanted to know what to expect. Even though I felt confident in this happening, I wasn’t scared, but nervous of the unknown. Out of curiosity, I even read up on the history of transplants and how they all started. It is fascinating and it made me very grateful for the progress that has been made in only a few short years.                    

The morning of surgery, I arrived and my husband and I got settled in to preop. I was anxious to see my sister and Rob before surgery, hug him, pick on him, you know, little sister stuff. I asked our nurse and she said she didn’t see them. I got nervous. Rob is infamously late to everything.  I thought to myself ‘so help me, he better not be late for this!” later on I learned, he was scheduled at a later time b/c they had to get it out of me first. Every so often someone would check in on us, to make sure I was doing ok. I was asked if I needed anything for my nerves. This puzzled me for I wasn’t nervous. Excited was more like it, excited that the day finally arrived and we could move on! Because I was lucid and unmedicated, there was no need to wheel me into the OR, I walked in, with the anesthesiologist holding my IV bag and asking me questions about his eyeglasses LOL The OR team was surprised to see me walking in and not anxious or medicated. So they took the opportunity to give me a tour of the OR room, the instruments, etc. I was very surprised at how small the OR table was and laughed “you want me to get on that little thing!?” 

As I got on the table I  made sure to have positive thoughts as I was put under – I thought about the beach, my happy place. When I woke up I felt like my whole abdomen was on fire. I remember not being able to talk, and barely could open my eyes. I remember moving my head back and forth and crying. Someone handed me the pain pump thing and said squeeze. Then I was out. Next thing I know  I woke up in my hospital room, and was more lucid than before. Of course nurses wanted me up and walking. I was cranky, miserable and I had a catheter, and a drain tube coming out of my abdomen. I thought for sure, if I stood up, those things would fall out and surely that would hurt! I begged them to leave me alone until tomorrow when the catheter could come out. Of course, I asked about Rob, and everyone was thrilled at how well he was doing and the kidney pinked up and started working before they sewed (stapled) him up. Such a relief! The catheter was a strange thing and I hated that I was glad to have it. I surely would have struggled to get to the bathroom. But my reflexes and brain could not “just pee” when needed. I’d wake up with a very full bladder and I had to literally close my eyes, imagine I was sitting on a toilet, while telling myself, I will not pee the bed, it’s ok, I will not pee the bed. But it sure felt like I was going to. I was not prepared for the complete loss of my core. They took the left kidney (their preference) via laparoscopy. Then they made a “track” from where it was, and then pulled it down to an incision similarly located where a C-section scar would be. It didn’t dawn on me the disruption it would cause to my trunk. I did get up the next day, as promised. They took the catheter out, and I was instantly feeling better. First things first, to go see Rob. He was down the hall from me. It was so wonderful seeing him! We visited for a bit but neither of us lasted long. I remember his mom and sister coming to my room and hugging me, they were crying. They were very sweet and grateful. I vaguely remember other visits from family and friends but it was kind of a blur. The first day I was off the pain pump and on oral meds, my pain got out of control. Because I had never had any surgeries prior to this, I had nothing to compare it to. But boy did I feel like something was very very wrong. I was crying, nauseous, dizzy and I was convinced they left something in me and because of that I became hysterical. On his rounds the surgeon asked when my last pain pill was. I told him it had been the night before. But I told him it wasn’t that. I wasn’t in traditional pain. But I took one anyway, to appease him and he was right. I guess he had done this a time or two. The nurses didn’t wake me up to take my pain meds and I didn’t know they were supposed to. So from then on, I set a pain pill alarm (remember, pre smartphone, so brought a physical travel clock) every 4 hours. I was rather irritated that the ball got dropped on something that important. I lost an entire day trying to recover from that episode. Anytime I talk to potential donors, I tell them that. I went home after a couple days, Rob had to stay longer. I slept so good at home that I missed my pain pill alarm. I got off track with them again, and had that whole nauseous, dizzy, crying episode again. I Lost another day recovering from that one too. That time, I gave my husband the pain pill alarm so he could wake me up. One thing I did miss was the hospital bed. Because I had no core, I would set the head of the bed all the way up so all I had to do was swing my legs down to get up. I didn’t have that at home. I did go through a very short period of “what did I do to myself?” and felt guilty for putting my body through that. I remember reading about that from other donors. It didn’t last long and I never once regretted it. We’re 13 years in now, and it seems like a thing of the past. I’m sure it’s not the same for Rob, but I often forget about it. I am grateful he gets copies of sonograms of the kidney to share with me. And I’m grateful he lets us poke fun at him having a girl part inside of him. I’ll never forget the first text he ever sent me “yo dawg, heard you got a new car, love kidney”. It was so sweet, and funny! It made me tear up.

One last repercussion I do have is my asthma has been harder to control since surgery. I was very short of breath. They checked for blood clots and all was fine. They chalked it up to possibly having some scarring from the breathing tube AND being a smoker prior to surgery. I quit the day I had the arteriogram so it was only a month difference. And who knows, I could have had the same thing happen after quitting smoking and not having surgery. But I tell myself “I can’t start smoking again, because I can’t donate another kidney to make me quit”. It seems to me, ever since donation, his flare ups have significantly decreased and everything is chugging along nicely. I’m honored, humbled, and grateful I was able to be his donor. It’s a special relationship that I get to share with him and on that I will cherish the rest of my life.