Iris and Renee
In 1970, Iris was about 12 years old, and I was 9. We lived on the South side of Chicago in what was then a
middle class neighborhood. At some point, Iris developed a rash on her face across the bridge of her nose and on both of her cheeks. My mother took her to the doctor not only for this, but also because she was beginning to have a lot of pain in her joints. The doctor thought the rash was just an allergic reaction to some unknown substance. He attributed the aches and pains to puberty. At some point the school nurse noticed the rash was on her face longer than what was normal for something that was supposed to be just an allergic reaction to something. I remember hearing the nurse wouldn't allow Iris to return to school until they found out what was wrong. That turned out to be a blessing in disguise. Our mother took Iris to the hospital for some tests because she was so sick, and no one seemed to know why. I went home from school by myself that day, and my sister did not get to come home at all for about a year. Iris was admitted to the hospital and diagnosed with Systemic Lupus Erythematosus. It is a chronic and potentially fatal autoimmune disease. Being 1970, we had never heard of it. Years later she told me she had snuck a peek at her chart because she had a feeling she wasn't being told just how sick she really was. One of her doctors had made the notation, "patient probably won't live to be 15." That was 30 years ago.
The hospital was like a second home to our family. I was not allowed to go upstairs and visit with her because I was too young. I spent a lot of time in the lobby reading and doing my homework. When I ran out of books, I started to read whatever pamphlets I could find. I knew her kidneys weren't functioning properly, and I wanted to know what that meant. One of the pamphlets was about renal failure. This is how I first learned about kidney donation. One section in particular stood out in my mind more than anything else, and I never forgot it. I read she had a better chance of survival if she could receive a kidney from a relative, usually a sibling. I knew then, I would someday donate a kidney to my sister. Iris spent all of her teen years and most of her adult life in and out of the hospital. More in than out. The large doses of Prednisone she had to take to fight the disease and stay alive caused her to lose all of her hair. She had to wear a wig. I remember when our father told my grandfather (our mother's father) about the diagnosis. He couldn't hold back the tears. I knew it was really serious then. Everyone in the family visited Iris just about everyday. She was never alone. Our parents stayed with her day and night, except for when our Dad had to go to work. My parents eventually arranged for me to stay at my grandparents' home for a while. I loved being there because they were wonderful grandparents. Everyone called my grandmother Muh Dear (Mother Dear) because she was such a dear and sweet lady.
In 1973, we moved to Edmonds, Washington. Partially because
Iris needed to live in a calmer and cooler area. Stress and hot weather can cause Lupus to flare up. All of my father's family lives here. In some respects the move helped, but Iris still had to endure many more hospital stays and doctor visits. Each time she was told she was not going to make it, but she would always pull through somehow. When we graduated from high school(my graduation was 3 years later), we both went on to the University of Washington. Iris has always been a fantastic artist, even at a young age. She won a lot of blue ribbons for her artwork even in elementary school. When she was in the hospital in Chicago, one of the nurses asked her if they could use some of her pictures to help decorate the Children's Ward. I always wished I could draw even half as well, but I could only draw stick people. Back then, she thought she would be a fashion designer someday. In her senior year of high school, she realized she needed to pursue a more stable career.
Iris spent her first 3 years of college studying architecture. A wonderful field, but the jobs are few and far between. She began to hear about engineering from some of her friends, and decided to change her major to Mechanical Engineering. About this time, I began my studies at the U.W. Just by chance, we completed our studies at the same time. It was wonderful being able to graduate from college on the same day, especially since we didn't plan it. After college, we both found jobs with the City of Seattle. I don't work there anymore, but Iris still does.
In 1993, Iris told me her kidneys were not working at all, and she would have to start dialysis. I had heard about it, but I never knew anyone personally who had to go through it. I thought it was a fairly simple procedure, but apparently it isn't for everyone. Part of the problem was a lot of Iris's veins had collapsed because of the years of hospital stays and blood draws. Whenever she had dialysis, something would go wrong. On several occasions she had to go to the hospital so they could perform it there. It never really worked well for her. Eventually, they had to put a catheter in her jugular vein to do the dialysis and then another one in her collar bone when the first one didn't work . This method worked better in some respects because they didn't have to find a new vein each time, but it didn't work as well as they had hoped. Sometimes the tubing would get clogged or the area would get infected. She was getting sicker and sicker as a result. Our parents had to make her take a leave of absence from work because she refused to give up. Several of her friends and co-workers donated sick leave to her because she is a single person and only has the one income. They are all very special people, and we have never forgotten them.
Shortly after Iris's kidneys failed, her doctors talked to her about having a kidney transplant. They asked her to find out if anyone in the family was willing to be tested to see if we were a match. Iris called us separately to talk with us about it . Our mother, Hattie, has diabetes, so we already knew she could not even be considered. After talking with her doctors, Iris decided it was probably better for me to be tested first. Over the years, I have seen Iris in so much pain. Sometimes our parents would have to rub linament on her legs to try and ease some of it. On one occasion in particular, we stayed up all night. The pain was so severe, she couldn't stop crying. My parents tried to comfort her the best they could, but nothing helped. I have always wished I could do something to help her. I didn't even have to think twice when she asked me. We set up an appointment and went in for the test. We were a perfect match. When we told our father, Major, he was mad. I know this sounds strange, but not if you know him. He thought he should have been the first choice because I have two children. He was afraid something would happen to me, and they would be without their mother. I knew in my heart everything would go well, so I didn't worry at all.
Iris's doctors decided to perform the surgery at the University of Washington Medical Center as soon as possible because she was so sick. We had to go through several more tests before this could be done though. The doctors had to make sure I didn't have any major health problems before they would allow me to be a donor. Once this was done, we were on our way.
The first surgery was set for December 6, 1993. It had to be canceled the night before because she was too weak. January 6, 1994 was the new surgery date. Iris and I spent the night at our parent's house because we had to be at the hospital at 6:00 a.m. We stayed up talking most of the night. I couldn't sleep even when everyone else went to lie down. I wasn't worried about the surgery, I was afraid I would over sleep and we would get there late. It seemed like we had waited an eternity for this day. When we arrived at the hospital, we were taken to a room where they prepared us for the surgery. I was going to be wheeled in first because they had to be ready to remove my kidney before her surgery started. Our mother is usually the nervous type even under normal circumstances, so I was surprised to see her so calm and quiet. Well, it was the calm before the storm. She said she was trying to be brave. She lost it when they wheeled me down the hall. My father had to hold her back. Once inside, the anesthesiologist gave me something to relax me. I was so tired that's the last thing I remember.
I woke up about 4 hours later in my hospital room. My mother and one of my best friends, Janet, were by my side. Janet works for the City of Seattle and is like a sister to me. My surgery went well, and they were almost done with Iris. Iris's friend Sharon was by her side before the surgery, and she was waiting for her when she woke up. Sharon knew what Iris was going through because she had received a kidney from her brother, Vince, about a year prior to our surgery. Iris's surgery was successful, and they told us her new kidney was already producing urine. That's a big thing because her body hadn't been able to do that on its own for a long time. The doctors told me they had to remove a small section of one of my ribs to get to my kidney. I was already told this might happen, so I wasn't surprised. I didn't have very much pain at first, because the anesthetic hadn't worn off completely. The second day was the hardest because they actually expected me to get out of bed. I didn't want to move at all, but once I got up, I was ok. We didn't share a room, but our rooms were next to each other's. Once Iris felt up to it, we went for walks up and down the hall. Not fast of course, just enough to help our bodies get back to normal. I was released about 5 days after the surgery, Iris had to stay in the hospital a few days longer. I needed help with the children, so my mother stayed with me for a while. I'm doing very well now, and I have not had any pain or problems since the surgery. It was a wonderful experience, and I would do it all over again if necessary.
Several people wrote and asked me for a little information about how it felt to receive a kidney, so I asked Iris if she would write a little something. The following is what she wanted to contribute. "I went through every test imaginable from head-to-toe. They literally checked out every part of me. This all happened in 1993 (transplant was January 6, 1994) so I'm a bit fuzzy on the details. They took blood tests, a mammogram, pelvic exam, heart tests, neurological tests, joints, muscles, lungs, all major organs, etc. Considering how sick I was from the dialysis and the Lupus, it was amazing that I passed all of these tests. Renee, my sister had to go through similar tests to make sure that she was fit to donate me a kidney.
I know that the night before we couldn't have anything to eat past 9:00 p.m. and also had to take an enema just before the surgery.
The surgery was January 6, 1994 and I stayed with my parents until March of 1994, then I moved back home. Anyway, I'm not sick all of the time. I'm doing quite well. In the Spring of 1996, my kidney did go into a rejection phase, but the doctors managed to save it by using a lot of different medicines. So, it's now doing quite well. The rejection episode most likely was caused by the fact that they were having me try the transplant without one of the anti-rejection drugs, prednisone, as an experiment. I had been on prednisone since the age of 12 when I was first diagnosed with Lupus. Prednisone is a terrible drug, but it can work miracles. It has a lot of side effects, moodiness, depression, and anger just to name a few.
The doctors were able to save the kidney with doses of chemo. I'm doing fine now. I have more good days than bad. My worse days with the transplant don't even come close to my good days on dialysis." So, please give the gift of life.
My Favorite Web Sites
Lupus Foundation of America
National Kidney Foundation
Uproar (games)
