TRANSPLANT JOURNAL

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Non-Compliance & Rejection

1/11/2000

Andi was feeling so well that she became overconfident, didn't keep up with her clinic visits and was erratic about taking her medications. She also had some very emotional things happen in her life that were exhausting and depressing. In mid December she became sick and ended up in the emergency room. She was in severe acute rejection and spent three weeks in the hospital. They treated her with very aggressive drugs to stop the rejection. She suffered a lot: weak, nauseous, shaky, and hurting all over. Her creatinine level was 12 when she entered the hospital, and 5.1 when they discharged her on Christmas Eve. But the kidney was barely functioning. In a few months, there will be no function left.

Now, a month later, she's able to work a few hours a week.The creatinine is down to 4.1 now, but she's had to go back to larger doses of all her meds, and some new ones; she has a lot of nausea and weakness. Of course, we are all watching her very closely. We don't know how long it will be until she needs dialysis or another kidney, but we are praying very hard.

I wasn't sure about writing this part, but realized that if it helped one transplant recipient from becoming overconfident, then it was worth the pain of writing this. I cannot begin to describe what this has done to us all emotionally, but especially to me. I feel betrayed, angry, worried. It's like the best I could do for my daughter was not good enough for her to take care of it. I am trying very hard to be hopeful, but I am very depressed.

1/19/2000

Today Andi's creatinine level is 3.8!! This is unexpected improvement. We are very hopeful. She's back to work and feeling much better.

3/28/2000

The creatinine slowly has crept up to 4.5. She has good days and bad. She needs to start the Pre-Transplant procedure over again, and we are praying they don't balk at the idea of a second transplant. We are not the only ones disappointed; the doctors and nurses are upset with her, too. The next kidney will have to come from a cadaver.

5/10/00

Andi's creatinine is over 5.2, yet she still feels well. She will probably need dialysis soon. She is being tested again as the Pre-Transplant process continues. Please remember her in your prayers.

6/7/00

The creatinine is 6 now, and Andi is getting ready for hemodialysis and hopefully peritoneal dialysis as soon as possible. She is painfully thin, skin and bones, her skin has a green cast to it, and she is very weak and tired all the time.

I have been swimming everyday (over a half-mile) and lifting weights, reading Zen and praying. Just trying to hold onto what sanity I have left!

8/4/00 Friday

This was one of the worst days of my life. Andi was vomiting all night, and Aaron took her to the hospital at 5:30 am. She was in terrible pain and very dehydrated. The doctors thought she might have pancreatitis, so they gave Demerol instead of morphine. BUT... Demerol can cause seizures in ESRD patients. At 3 pm, they stopped the Demerol and switched her to morphine for the pain, having determined that her pancreas was fine. At 7pm, I was with her, having sent Aaron home to get some sleep, when she started shaking all over, froth poured from her mouth, her face turned blue and her eyes rolled back in her head. I screamed for help, and they gave her oxygen and Ativan. The nurses were fantastic. Andi slept all night and improved steadily after that.

I made this 36" x 48" quilt, completely by hand, as I sat by Andi's hospital bed. It has come to symbolize hope and the power of life.

She was released on Wednesday, August 9th.

8/16/00

Andi is taking a class in Peritoneal Dialysis. She had her first dialysis yesterday. She is taking it all very seriously now, and told me last night that she wants to help other people avoid her mistakes. They told her to stay at home during the holidays, because there are more deaths at that time and more organs will be available. Not only that, I told her, but now Florida has repealed the motorcycle helmet law!

Next... A Letter from Andi

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