Monday, May 24, 2010

Life Without Kidneys

Well, I need to change the title of my blog to "The Best 9 Years" because I did not graduate this Spring and so it will be 9 years since I graduated from high school when I finally (here's hoping!) graduate from college. Things didn't exactly go as planned this year. I was supposed to finish my senior year, walk at commencement, and then fly to London for the study abroad I've been trying to go on for 3 years. Instead, my transplanted, and only, kidney rejected and failed in January. I had to drop my perfect class schedule, relinquish my position as Senior Class Vice President, go on Family Medical Leave at work and move out of my house in Officer's Circle.

Everything changed in January, and I became very angry and bitter because I hated it. I hated my life and everything about it. I started back on dialysis, something I vowed never to do again, and had multiple hospital stays throughout February. I was really sick, and my poor attitude and self pity didn't help the situation much. I ignored text messages and didn't return phone calls. I never checked facebook and when I did it just made me mad, all those people and their happy, healthy lives thinking they had real problems because their phones weren't working. I was really mad at my life because this was supposed to be my year and now it was all shot to hell. I didn't want visitors, I didn't want friends. I wanted to be left alone in my self loathing. It's easier to feel sorry for yourself than to face your problems and try to solve them with a positive attitude. At least that's what I led myself into believing.
I thought I'd get another transplant quickly. I had a donor (my wonderful sister Liz) and was only 27, so why should my medical team wait? Well, just because I had a donor doesn't mean she was a match. I know, you're thinking "But it's your sister, how can she NOT match??" My first kidney was donated by my brother Ben. My body developed antibodies against his DNA because I had his kidney. Being siblings, Liz and Ben share the same DNA, so those antibodies in my blood make her incompatible.
So I waited. And waited. And waited. I watched the deadline for London study abroad applications pass by, knowing I couldn't go. I endured hospitalizations and bone marrow biopsies and numerous tests to rule out diseases I knew I didn't have. I kept on with dialysis and had blood transfusions and wondered if I'd made the right decision leaving Dr. Cline's care as I began to feel like my medical team was... incompetent. On the same day I should have been graduating from college I had my transplanted kidney taken out. My mother spent her Mothers Day sitting with me in my IMCU room at University Hospital. As it turns out, that kidney was necrotic (meaning there was dead spots in the tissue of the kidney) and was likely what was making me so sick. The lymph node Dr. Nelson removed was unremarkable and ruled out the PTLD the team was afraid I had. PTLD is a form of post-transplant lymphatic cancer.

Since the surgery, I feel much better than I did before. I've even been out a few places with my sister and friends since the incision stopped hurting. (Word of advice: if you're thinking about going to see "Robin Hood", don't waste your time or money. It's awful.) I've registered for fall classes and The MUSS and I will be crushed if I can't return to school August 23rd. In a week or so I'll be cross matched with my sister again because my antibodies have changed, hopefully enough that she is now a match. I'll also be cross matched with one of my best friends, Stephanie, to see if she's a match. If all goes well, we could be having a transplant this summer. If neither Liz or Steph are matches, we'll enter the paired donor program, which cross matches you and your potential donor with others who are in a similar situation to find a match and a kidney for you.

For now, it's life without kidneys. Dialysis 3 times a week at 6 a.m. Being bored every day with nothing to do but take naps (it's not that great, trust me). Sitting, waiting, wishing, hoping for a miracle, and a new, working kidney, and renting movies from iTunes while I wait.


  1. You're so strong, Sarah! Keep it up! And I'll see you in the MUSS next year! Just registered for fall classes! Go us!! Xoxo

  2. I am amazed by you, dear brave Sarah. The wisdom you have at your young age is inspiring. I believe you are stronger because of what you have had to endure, not to say it wasn't awful, and that I wish you had never had to go through it. But know there are many out here who love and care about you, and are praying that all your hearts desire will come true. Hugs to you.

  3. IT is so hard to accept the Lord's time versus our time. You have been through so much in your young lifetime. All learning experiences, but still . . . . I heard this quote attributed to Mothers Teresa and it says it all " I know that God only tests those that he loves, sometimes I just wish he didn't love me so much" ! ! ! All I have to say is 'AMEN, Sista ! ! ! Love ya . . Aunt Lita