AN EARLY CHRISTMAS GIFT
My experience of donating a kidney to my sister, Stephanie
I know anyone who is reading this is most likely searching frantically, as I did, for any and all information to be found on living kidney donation. The personal stories here on TransWeb were such a tremendous help to me, I felt compelled to write my story as well. So, here goes:
My name is Jennifer Robins. I am a 28 year-old actress/receptionist in Los Angeles. My sister, Stephanie, 30, was diagnosed with Lupus when she was 15. The disease has primarily affected her kidneys, which have been in decline for some years. Her doctors informed her about two years ago that a transplant might be necessary somewhere down the road. They were estimating about five years. It took only two. Stephanie had grown very weak and was fatigued so often that she had to eventually cut her full-time job down to two days a week, a few hours a day. She also had no appetite whatsoever and was generally not in the best of spirits. When Stephanie first talked to me about being tested as a possible kidney donor, she made it very clear that she wanted me to be 100% sure that it was something I wanted to do. Not something I felt I had to do because I felt pressured, or guilty, etc. I wanted to do it immediately, but took a couple weeks, at my family and friends' request, to really let it sink in and think about it. I thought about it and even made a list of pros and cons on paper to help me see it more clearly. But, in the end, the biggest pro of all, outweighed the rest: my sisters' health improvement and life. This whole process has really made me realize how I've always taken for granted my good health. I've been so lucky to never have to worry about more than the occasional cold or flu my whole life. My sister deals with her disease every day. I knew this, of course, but I never really grasped the importance of it until then.
My decision made, I called my sister and family and began the initial testing. Needless, to say my sister and her husband were very happy and very relieved. I should include that I am the only other sibling and my mother was ruled out as a donor because of high blood pressure and other minor health concerns. My father has been out of the picture for a long time, so basically, it was just me. Stephanie lives in Houston and I live in Los Angeles, so I did all of my tests in L.A. Most of the initial testing was bloodwork, to make sure we were a good enough match. It turned out we were a perfect match, so I then did an EKG, 3 different 24-hour urine and creatinine clearance tests, some x-rays, an IVP, which is where dye is injected into your vein and x-rays are taken of your kidneys as they function, and a few other tests to make sure my kidneys were in tip-top shape. Those tests went well, and a transplant date was set. The final test, the angiogram, was scheduled. This was the most major of the tests, I thought, because it required admittance to the hospital for a day. This was where they injected dye into an artery in my groin and took x-rays, similar to the IVP, but it was way more intense. There was a computer screen right there beside me where I could literally see my kidneys functioning. I didn't really look at it until afterward because it kind of freaked me out. This was the only test that was slightly painful. When the dye went into my system, it was hot, not warm. They said I might feel a heated sensation, and boy, did I! It was really hot all through my body, but luckily it only lasted a few seconds. I had to stay in the hospital for 8 hours afterward not moving the lower part of my body to make sure the incision didn't bleed. Usually, this test is done the day before the actual transplant, but in my case, it was easier for me to do it in L.A., before I went to Texas for the surgery. The angiogram, I understand, also helps the doctors decide which kidney to take.
As we had hoped, the results from the angiogram proved that my kidneys were in good condition. After a couple of "Good Luck/Goodbye to Jen's Kidney" get-togethers with some supportive friends, I was ready to go.
X-rays in hand, I was on my way to Texas! The transplant had been set for October 2nd. I started testing the beginning of May, so it was about 5 months from the beginning of everything to the actual transplant. We had some insurance problems that slowed things down a bit, and also, I had to do a few of the tests over, due to the lab not doing some of the tests ordered.
Our surgeries were at St. Luke's Episcopal Hospital/Texas Heart Institute in Houston. A couple of days before the surgery, my sister and I met with our surgeons and anesthesiologist, got all of the admittance paperwork taken care of, and had some last minute x-rays and bloodwork done - 14 vials! A new record for me. The doctors told me they would be taking my left kidney, because both kidneys are the same, and in that case, they always take the left, because it's easier to get to and remove.
THE BIG DAY - October 2, 1998
We had to be at the hospital at 5:30 a.m. the day of the surgery. I'd have to say that the night before and that morning were the scariest times for me. Having never had surgery before, I was pretty nervous and scared, as was my mother and Bob, my boyfriend of four years, who was there with me the whole time. My sister, the "rock"of the family, seemed mildly affected. She was in good spirits and ready to get the show on the road. I, meanwhile, hoped I wouldn't have to ask Mom to pull over so I could throw up on the way to the hospital! When we arrived at the hospital, my sister and I were put in the same room, given our gowns and stockings for our legs that help circulation during surgery. Our I.V.'s were also started then. I had relaxed a little by then, and we were all joking and trying our best to keep the atmosphere as light as possible.
My surgery was first, and they came to get me pretty soon. I started to cry as I was being rolled out and was able to quickly grab my sister's toe and give a quick squeeze as we had our exchange of "I love you"s. My mother and Bob, my boyfriend, were allowed to go all the way with me to the pre-op room. It was very emotional for all of us and I was crying like a baby when they finally wheeled me into the operating room. I dried up a little as the anesthesiologists started joking with me about California and administering the drugs through my I.V. He said I was going to get very sleepy very soon and I was out in a matter of seconds after he said that.
The next thing I know, I heard someone's voice saying "Everything went fine, Jennifer, you're all done." I looked up and saw my mother and Bob standing beside my bed. They told me Stephanie was also doing good and that the kidney was working. I was relieved and happy to hear that, but the nurse asked me how I felt and I remember pointing to my side and saying, "It hurts." I was hooked up to a morphine pump and kept in ICU for about 2-3 more hours. Then I was moved to a private room. I'm not going to lie. It hurt to move! They removed my lower rib to get to the kidney, so even breathing was not always pain-free. I was finally taken to my room, and getting into the bed from the gurney was not fun. When the nurses moved me over, I was yelping out in pain. I kept apologizing, because I'm compulsively polite, but realized later, screw it! I'm supposed to be screaming - this hurts! I was not allowed to have any water or food the whole day, but Bob and my mom were able to give me ice-chips. They definitely helped. I started feeling a lot better, just being in my room and learning how to press my morphine pump when I needed it. I didn't get to see Stephanie until two days later! She was kept in ICU overnight to be monitored closely. She was moved into her room the next day down the hall from me.
Day two was, as most donors say, probably the worst day, because the nurse came in and said, "Okay, do you feel like sitting up and sitting in a chair today?" I thought she was crazy! It hurt to move - I couldn't imagine actually sitting all the way up and standing! They had removed my catheter that morning, so I didn't have to worry about that, which was nice. The nurse said the doctors wanted me to sit up in my chair at least 3 times that day. I said I'd like to wait for a little while (procrastinate, yeah, that's it!) and try it later. She came back later and I did sit up with a lot of help and sat in the chair. I did it a few more times when I had to go to the bathroom that day.
I started taking short walks in the hallway, with Bob or my mom pushing my IV and morphine pump stand. I was finally able to see my sister - she came to my room. She looked great and was walking and pushing her stand on her own. I couldn't believe it. I was still too weak - it was kind of heavy! I was started on liquid foods (soup, pudding) this day and began taking oral medication for the pain instead of the morphine. Recommendation: A good pair of comfy slippers that you can slide your feet into are a small luxury that I really appreciated when in the hospital.
Real food! Yea! My doctors could hear my bowels starting to come back to life (constipation - one of the joys of having surgery and taking morphine), so I was given the go-ahead for food. My sister was way ahead of me - she started passing gas pretty fast and even had a bowel movement (a big accomplishment as far as the doctors are concerned). I wasn't having as much luck, unfortunately, and was told that we wouldn't be able to leave the next day as planned unless I came through. Boy, talk about pressure to perform! Finally, I did start passing gas and on day five, the day we hoped to leave, I did the deed. I also had my IV removed this day and was taking longer walks a few times a day around the halls. My sister and I alternated between each others rooms. I actually felt better sitting or standing because my back was sore from sleeping at night. (That soreness lasted for a couple weeks, because I couldn't sleep on my side or stomach, which I prefer, and my back was sore quite a bit.)
We go home! I was especially apprehensive of riding in the car, but with the help of a pillow (a pillow became my best friend during a lot of this) against the incision, I made it. I recovered at my sister's house for about two weeks before returning to L.A. My mother helped my sister and me with everything and I really enjoyed spending time with Stephanie, since we normally don't see each other but maybe once or twice a year. In fact, I think the transplant brought us closer than we've been in years. Note: Throughout my recovery, I had little bouts of depression, on and off, only because I couldn't do the things I was used to doing without having pain or getting tired. Although the human body heals very fast, it does requires patience, I discovered, to let it take it's own time.
FIVE WEEKS LATER
It is now five weeks after the surgery. I returned to my receptionist job four days ago. I have to say, I feel pretty darn good. I've still got a little soreness sometimes, but nothing that can't be handled with Tylenol. The doctor sent me home from the hospital with Vicodin, but I only needed them for about a week. Tylenol seemed to do the trick for me most of the time. I have a pretty big scar, but the doctors did a really neat job and it is already healing quite nicely. I also still have quite a bit of numbness on my hip and part of my belly area, which the doctors said might not go away for a few more months. Every once in a while, I'll get a weird, sort of shooting, stinging pain, but I think that's the nerves growing back in my numbed area. So, I guess it's actually a good thing. This first week back at work has been good, but it does make me a little tired some days.
My sister is doing great. She has lots of energy, a terrific appetite, her creatinine levels are normal, and with her husband, is happily able to focus again on adopting a child. The kidney is working well and is being watched closely by her doctors, who she sees once a week.
No matter how discouraging some of my experience may sound, the worst part was over in a week or so, and I would do it all again if necessary. I have absolutely no regrets and it was so worth it to see my sister so happy and on her way to a healthy life. The opportunity for me to donate has been a blessing for my family and I strongly encourage anyone who is considering being a donor. Although my family most likely won't be celebrating Thanksgiving together this year, I know it will be a special holiday for all of us. We are very thankful.