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When I was almost one year old my mother took me next door to meet the neighbors’ new baby girl, Michele. From that day on we were inseparable playmates. We laughed, we cried, we fought, we watched the Wizard of Oz. As we grew up our habits and social circles changed and there were months when we didn’t even see each other. But the bond was always there. I knew if I needed her I could call Michele and she would come. She is truly like a sister to me.
As a result of juvenile onset diabetes Michele’s kidneys were failing in 2000. The day she called to say that she was "on the list" (to receive a kidney) I said "well, where do I go to get tested?" never really thinking that anything would come of it. One by one the tests came back a match and I woke up to the frightening reality of my situation. I was nervous – after all I have 4 children to take care of. I could die on the table! I could be sick for the rest of my life! I’m going to be in a lot of pain! But I remember saying to a very religious friend "please pray that this works out – I want it to happen".
Once the decision was made and the date was set I began to get startling reactions from people. Most thought I was heroic and selfless (yeah, yeah, that’s me all right). Some though thought I was crazy. "It’s no problem for her to get a cadaveric kidney – why take this risk?" (It is a problem and cadaveric kidneys are rejected much more often); "Doesn’t she smoke? She’ll ruin your kidney!" (Once I give it to her it’s not my kidney anymore – she can do what she wants to with it. I wish she would stop smoking but I’m not going to let her die just to teach her a lesson.)
The day of surgery we checked in at 5:00 am. I had been on clear liquids for two days and laxatives for one. The routine tests and preparations for surgery were not too bad – a few needle sticks, a sedative (whee!) and the epidural was in. I remember demanding to see Michele before they put me under and she came over and said "hi" in the hallway. The operating room was cold and blurry. Next I woke up in recovery, vomiting, and wondering how everything had gone. They told me Michele was still in surgery and handed me an emesis basin (my new best friend).
The next couple of days were a blurr of puking, pain, visitors with flowers (lots of flowers!) and more puking. The morning of the third day I knew something was wrong – I was shaking and felt particularly miserable. The night before I had dreams of eating dark red cookies, and the clicking of my IV sounded like I was in a tunnel. Eventually the doctor came in, took one look at me and at my blood test results and said that I needed a transfusion. Since I had "banked" some of my own blood, they brought it in and hooked me up. Now I know how vampires feel when they need to feed! The blood helped immediately. (I think my strange dreams the night before of blood-colored cookies were trying to tell me something!)
My biggest problem now was the vomiting and muddled thinking brought about by the drug meds. I knew from previous experiences that I don’t enjoy narcotics and told the doctor that I wanted him to take them away. The nurses thought I was crazy, but the pain wasn’t really any worse without the drugs and at least now I could think clearly enough to relax and deal with it. My recovery speeded up considerably now, and by the third night after surgery I could toddle across the hall to Michele’s room for a chat.
I’d say that within a week after surgery I was feeling fairly decent. I was still living on the couch for the most part, but the pain was getting better. At least the pain in my abdomen was better – the rest of me was falling apart. My shoulder hurt, my knee hurt, my wrist hurt, my jaw hurt. The doctors kept saying that it was just a side effect of the anesthesia, but the symptoms only got worse and worse. Finally I went to my regular doctor and she told me what I had suspected – I had rheumatoid arthritis.
My mom has RA and I have watched her suffer incredible pain and disfigurement because of it. I looked at my thin, graceful hands, really my only body part that I’d always been proud of, and imagined them red and gnarled. There were days that I couldn’t walk from my bed to the bathroom and thought that my life was over. I offered my husband a divorce so he wouldn’t have to live with a handicapped wife. Kharmically, this didn’t make sense – I’d done a brave and generous thing and this was my reward?!
Of course donating my kidney didn’t cause the arthritis, but I think that the trauma and stress of the surgery triggered the onset. I would have gotten it eventually anyway. Through the next year I was fortunate enough to find a medication that keeps my disease under control. As for my lack of a kidney – I don’t notice it. I try to stay hydrated, avoid ibuprofen and struggle to lose the excess weight that I carry. Michele is doing great. The regimen of anti-rejection drugs and constant lab tests has been a difficult adjustment, but she looks, sounds and acts like she’s 20 years younger.
I haven’t mentioned that during the six months prior to surgery I was also taking care of a dear friend while he died an excruciating death from oral cancer. His wife had kicked him out of the house and kept their children from seeing him while he died. It fell to his mother and me to clean him, hold him while he cried and try to ease the emotional and physical pain he was in. He died the day I came home from the hospital, and later that week I gave the eulogy at his funeral. I think that last year was my year to be a giver. I’m glad that when it was my turn I was able to answer that call and do some important things that I’ll always be proud of.
© 2002 International Association of Living Organ Donors, Inc.