I Love Her With All Our Kidney: My Experience as a Living Kidney Donor
by Kelley Horrigan
At the age of 36, I became a kidney donor for my sister, Lori. This was, by far, the most gratifying experience of my life and chronologically, I would like to relate to you the process of donating that kidney. Many of you may have questions concerning the living-related donation process and I hope to answer, at least some, of those questions.
When I first realized I wanted to become a donor, I searched the library and then the internet for information on what to expect. I think what I was really looking for, was someone to tell me that it really doesn't hurt and the experience would be well worth it. Well, it did hurt, but not as much as I'd expected and the experience was well worth it!
First, a bit of background. Being born and raised in a military family, one can't help but to establish some sort of lasting relationship with siblings. While moving all around the world, there are times when your brothers and sisters are your only friends. My relationship with my sister Lori blossomed when our family was transferred to Izmir, Turkey, in 1976. I was the proverbial "big sister" to her. She would always come to me with all kinds of questions, mostly about boys and growing up. I liked being the older sister and felt it was my duty to help her out. I have always been fiercely protective of her. I was almost shocked when she got married ten years ago. I couldn't believe it, my "little sister," all grown up! Though our lives took different paths, we always managed to keep in touch.
Today, Lori is 33 years old. She has been living with kidney disease since she was eight years old. She had been diagnosed with glomerulonephritis before we left the United States for Turkey, but it had not been a major problem. No one is sure where her original disease originated, it could have been any number of causes. No matter, kidney disease has been her life long misfortune. She had her first kidney transplant in 1985 via cadaver donor. It worked very well for almost 11 years. During the spring of 1996, there were indications that this kidney was failing and another transplant was only a matter of time. Her doctor said she could probably go for another year or so without one, but her quality of life would sink considerably.
Lori came to Nebraska from her home in Maryland to visit with the rest of our family in July of 1996. During her visit, my parents and I accompanied her to a consultation with a transplant surgeon from the University of Nebraska Medical Center in Omaha. The three of us had made the decision to become a donor for her next transplant. We talked extensively with the surgeon and his transplant coordinator who answered all the questions we could think of at the moment. The next step was blood tests for each of us to see who would potentially be the best match.
When word came about a week and a half later that I would be the best candidate to proceed with testing for possible donation, I was very emotional. I had a feeling it would be me, I was praying it would be me, but to have it spoken out loud that it actually was me, was incredible. I felt excitement, dread and elation all at the same time. My dad actually had a better antigen match (he was 5 of 6, I was 2 of 6), but because of our ages, the surgeon thought I'd be the better candidate in terms of recovery, etc. I called Lori and told her, "It seems I have this kidney sitting around with nothing better to do and wondered if you wanted it?" So, with the decision made, more blood work and two major procedures were required. Any abnormality could knock me out as the candidate at any point during the testing. I prayed hard there would be no problems.
The first test was an Intravenous Pyelogram (IVP). An IVP is used to actually highlight the kidneys, to make sure you do have two kidneys (the coordinator told me I'd be surprised at what is found in some potential donors) and that there is no growth or abnormalities on either kidney. It required me to adhere to a very strict diet for 24 hours before the test and drink some horrible concoction that would relieve me of anything internally that would be viewed as an "obstruction" during the IVP. I also had to do a 24-hour urine collection, to be brought in the day of the IVP. The test was done on August 9th. The IVP procedure was no big deal. A nurse injected dye into my veins. A big X-ray machine then took pictures every few minutes for about an hour, up and down the length of my body, to monitor the progression of the dye through my veins down to the kidneys and into the bladder. During this procedure, the X-ray technician, who was fairly young, asked me if I'd been having kidney problems. I proudly said, "No, I'm donating a kidney to my sister." The look of awe on his face made me feel warm all over! This was the start of reality really setting in.
The last big hurdle was the renal arteriogram, also called an angiogram. This was done a week after the IVP. The preparation for this test was considerably less than for the IVP. No strict diet, just nothing to eat or drink after midnight. The morning of the test I had to be at the hospital early. They admitted me even though this procedure was considered outpatient surgery. I was told this was standard procedure and I would be able to go home about six hours after the test was completed. They shaved both sides of my groin (they said, "Just in case it didn't work on one side"). I was given a local anesthetic in the groin and they were ready. The doctor came in, threaded a catheter up my femoral artery to my kidneys, and injected some dye. I immediately felt a lot of very warm liquid fill my belly area. I wasn't the least bit uncomfortable, but I'd been told what to expect before the procedure began. They again took X-rays, this time to chart the flow of dye through the veins and arteries to make sure everything worked properly. Before I knew it, we were done. This test would help the surgeon determine which kidney would be the best one to remove, after analyzing the position of the renal veins and arteries. After the catheter was removed, a nurse put a big clamp over the incision area (very small, no stitches required) and the bottom of the table. Pressure was applied for about 15 or 20 minutes, then I was wheeled back to my room. Once there, I had to lay still for about five hours with a small sandbag (yes, a sandbag!) over the incision area, maintaining the pressure so it wouldn't bleed. I could go home once it was determined I wasn't going to hemorrhage.
I passed all the tests with flying colors and asked the transplant coordinator how soon they could schedule the transplant. She checked her books and asked, "How does September 9th sound?" Oh boy, this was already the 16th of August, that date was just around the corner! I was really going to do it. It's very hard to describe all the thoughts and emotions I went through; however, I never had a second thought about donating. I was very worried about how much it was going to hurt but felt it was the least I could do to help out a sister I had come to love so much.
The big day arrived. We checked into the hospital at six o'clock in the morning with my surgery scheduled to begin at noon. We had to give yet more blood (they really do take a lot of it during the course of testing), and then it was off to our room. We were excited about being in the same room, as we'd been told they don't usually put the donor and recipient together in one room. We were told the recipient usually recovers faster than the donor and they didn't want any resentment building; plus, the first day or two Lori would be in intensive care as a precautionary measure. Therefore, this roommate situation would only last until I was taken to surgery. We had EKGs done about nine o'clock, then the two surgical residents that would be assisting the surgeon visited us to explain the procedures they would be using and also told me for the first time, which kidney they were going to take (my left). We spent the remainder of the morning taking pictures, talking to family, reading the newspaper and just being goofy. I think we were both excited but scared, too, and lost in our own thoughts. I got a real feeling of "Oh my gosh, here it is, what am I doing?!" but I knew I would never back down. This was something I really wanted to do for Lori.
At noon, it was time to go down to the operating room. After tearful good-byes, I went down to preop where an epidural catheter was inserted into my spine. Half my back was taped up to keep the catheter in place. I chose this method of pain control after reading Steve Blakeman's article. I also discussed it with the transplant coordinator, asking her what method of pain control other donors had chosen and why. I was given something to calm my nerves, and shortly after that, I was off to surgery. I do not even remember going into surgery, that must have been some strong calming medicine. My next recollection was late in the afternoon, back in my room. I remember two people trying to move me into bed, they told me to relax, they would get me in. I think I made some sort of effort to help, but........ My next recollection was of my brother and his wife standing at the foot of the bed. I tried to crack a joke, but, while I thought it was funny, I don't think he "got it." I was too tired to explain. I don't recall any pain at this point. The next time I recall waking up was about four in the morning. I was dying of thirst! The nurse said I couldn't have anything to drink yet, but she brought me a cool washcloth. I slowly wiped that over my very dry lips and squeezed what I could into my very dry mouth. That scenario went on throughout the rest of the night.
On day two, the surgeon and his residents visited in the morning to check on me and the incision. As I understood it, my left kidney had been located just a bit higher than normal. As a result, I was only cut in the front, not from front to back as is typically done. Staples closed the incision, and when I asked the resident how many staples were there, he looked hard and said "Well, let me just say, not one more than was needed!" Later count revealed 26 staples. They took the dressing off permanently and said the incision would heal faster without it. I was cleared to eat a liquid diet and the oxygen tube I had been wearing since the surgery was removed. Later that morning, I attempted my first of many walks around the ward. I have to say, this was actually the worst day of all. I don't know what they did to my insides, but I had the worst gas-like pains I can ever recall having, and there was really nothing I could do to make it feel better. My mother and a friend alternated rubbing my back to try to relieve some of the pressure. Thankfully the pains subsided later in the afternoon, but at the time they were happening, I felt it would be better to just go ahead and die right then. On the brighter side, though, the trips around the ward were made, albeit very carefully. I pushed the pain pump every 20 minutes and that made the trips bearable. I held a pillow over the incision area and held on to the rolling IV pole for support. I napped on and off during the day. Because of some complications my roommate was having, I was moved into a new room in the afternoon. My new roommate was a scream. We laughed a lot and got to know each other a bit. She was 30-something, and a 21 year recipient of her sister's kidney. She was a lot of fun, took my mind off my misery and as a result, I know I recovered faster.
Days three and four were pretty much the same. The Foley catheter and the sugar water portion of the IV were removed on day three. The epidural catheter was not removed until the morning of day four (this did a wonderful job of controlling what pain I did have). Once the epidural was removed, the Percocet I took for the pain worked very well. By this time I was getting around the ward with no problem, could get myself into and out of bed without the assistance of any of the nurses, was eating a normal diet and generally recovering faster than I ever expected. One of the nurses generously offered to wash my hair and with that done, I felt human once again. I spent a lot of time with my sister in her room (once she was removed from ICU), who was doing equally well.
On day five I was ready to go home. To my surprise, a nurse came to remove the staples. I couldn't believe it, only five days since the surgery and they wanted to remove the staples! I was sure the incision would split open and everything inside would fall out, but of course, that didn't happen. Tape strips, which the nurse said would come off on their own in the next few weeks, replaced the staples.
I spent the next nine days at my parents' house. The ride from the hospital, and rides anywhere for the next two weeks, required my trusty pillow to be placed across the incision area. I called it my "air bag." The only real problem I had once I got home was a very uncomfortable bout of constipation. I was told that could happen with the oral medication. So by the third day home, I was only taking Tylenol for the pain and the pain was very manageable. I also had problems with my upper back (across the shoulder blades) for about six weeks after the operation. My doctor said I was unconsciously hunching over to protect the incision area. I made a concerted effort to stand up straight, but it took those six weeks for my back to feel normal again.
Lori was released from the hospital and into my parents' care just two days after I was. After about a week post-hospital, we made a trip somewhere each day just to get out of the house. As for the time I was away from work, I was very fortunate in that the company I work for has a disability sick leave program for which I was eligible. I was off work for eight weeks and had no problems going back. I mainly work at a computer and feel I probably could have gone back earlier had it been necessary, but it was good to have that time to recover completely and just absorb all that had happened.
In looking back, I have absolutely no regrets doing what I did and can say emphatically that I would do all over again! It's definitely been worth it. Lori is slowly recovering (she's not as young as she was for the first transplant) and we all expect her to return to some form of normalcy soon. My relationship with Lori has, obviously, changed. I still feel very protective of her, yet there is a much more wonderful bond between us, a friendship that will continue to blossom and grow.
I would like to publicly thank Steve Blakeman (his story can be found on TransWeb as well) for all his support and guidance. My family and I were well prepared for each phase of the entire process thanks to his unselfish sharing. Thank you, Steve. I also would like to thank the transplant coordinators, especially Connie and Tavie, at Clarkson Hospital. They have continuously made themselves available to answer each and every question I've had. Of course, I also thank my parents and the rest of my family. Words can't explain what their support and help throughout this has meant to me. And Lori, God Bless You and I Love You.