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Non-Compliance & Rejection
A Letter from Andi
Our Experience at the Transplant Forum
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May 1998. Tissue typing and crossmatching showed that Matt, my son, was not a match (which was a great relief to me), but although my blood type is O- and our tissue typing was a 3 HLA match, the cross matching had a positive reaction (That's bad).

June 10, 1998. A very anxious week until they redid the test, and there was no reaction. Jim, Aaron, Andi and I attended the class. Now we all understood the great improvement in the chances for successful transplant with a living related donor. More blood tests and urinalyses. More waiting. A slightly raised bacteria count in my culture prompted a weekend of drinking 2 liters of cranberry juice. On Sunday the 21st, I had to fill a 3000cc jug. I spent the entire day doing just that, between inputting and outputting! Monday I retook the test. Still more waiting.

June 23. Just got the call from the Coordinator. Abnormal results on my 24 hour urine collection because I drank too much water and cranberry juice. Must redo the test this weekend. Another week to wait.

July 2. Long weekend ahead to rest up for three days of testing next week. Wish us luck!

July 8. Great weekend, and Monday's ultrasound and VCUG went well for Andi, although we keep getting lost in the city they call UM/JMH!

I passed my Gyn exam and the Psych evaluation (which lasted 3 hours: 90 min of standardized written tests and 90 min of interview). He determined that I am sane enough to give away body parts. Whew! I was concerned. Will deliver the third collection bottle tomorrow (the second one didn't get refrigerated at the lab).

July 10. I passed the 24 hr test! Seems like that's the biggest hurdle. I am now buzzing with anticipation. Both of us are eager to get this show on the road. Next steps: mammogram, a general physical and a procedure called IVP. They put iodine in the veins through an IV, to see where everything is and to determine there are no stones or blockages.

I heard yesterday that there's a lady in California who was born with 3 kidneys. Sure hope she's an organ donor.

July 13. My IVP and physical are scheduled for this Wednesday, mammogram next week on the 23rd. As many other donors have written, I now find that it is very strange to feel perfectly well, yet approach surgery knowing that I'm going to feel crummy afterward! But, as my mother used to say, "You can't make an omelette without breaking eggs!"

July 15. The IVP was a snap. I have two kidneys, and they look fine. A little warm flush from the contrast medium they injected, but it wasn't as bad as a hot flash! (There's a subject I know about!) The table was hard, but the woman doing the procedure is kind, thoughtful and has a very comfortable manner. I passed.

Then the physical, although I couldn't imagine there was anything that hadn't already been examined. The doctor asked me about previous surgeries, illnesses, etc. Then he looked down my throat and in my eyes. He was looking into the first eye for a long time before I realized I hadn't mentioned my radial keratotomy surgery. When I told him, there was an audible sigh of relief. After checking everything, he determined that I'm pretty darn healthy for my age (52), although he said I should lose some weight. I quit smoking six years ago, and in combination with taking replacement estrogen, this has resulted in a steady increase, now about 30 pounds more than I want.

The arteriogram is scheduled for the 22nd of July, and final appointments with the two surgeons and the transplant nephrologist are scheduled for the first week in August. The date for our surgery has been set tentatively for the 13th of August. If we both stay healthy between now and then, we will be admitted together on the morning of the 12th. Sure feels good having passed these hurdles.

July 21. Just had a call from our Transplant Coordinator, and the date for surgery is now August 6th. The person scheduled for that day hurt her leg and had to be postponed. So we inherited her dates. This is better for us since Jim has to go back to teaching August 24th. Now I'll have him to care for me a week longer.

Andi and Aaron are moving into a newer, nicer apartment next week. That worked out well, too. I wouldn't want her to be moving after the surgery. She's really feeling crummy now, tired all the time, wakes up with her eyes swollen shut, no energy. It's time.

July 24. I had the arteriogram Wednesday and the mammogram yesterday. Wasn't so bad except for the waiting part. Went in at 11am for the abdominal arteriogram, they hooked up the IV at 1:20, but the procedure wasn't done til 4:30, and I had to lie flat on my back until 9 pm. I hate bedpans! The good news is that my kidneys look fat and healthy, and they said my renal artery is the best they'd seen. I must remember to put that on my resume.

July 28. We meet with Andi's surgeon this afternoon, and mine tomorrow. This weekend Andi and Aaron are moving into their new apartment. Busy right up to the day of admission, that's probably a good thing. We are both getting antsy and a little irritable (understandably). I'm packed with my face cream, favorite pink cotton sweater and bunny rabbit slippers. I have a stack of books and my crocheting. I'm reading Creative Visualization which could be very helpful in our situation. Seems I've been doing that for years without knowing what it was called. For example: when I was quitting smoking, I would say to myself all the time, "I am a non-smoker." Now when I think of having a cigarette, I think of being nauseous. Six years now, and the thought of smoking is really repellent to me.

The hardest part of being a mother is letting go. I'm having a particularly difficult time now, trying to balance my respect for my daughter as a responsible adult with my desire to spare her any possible delays or discomforts. Parenthood! A life sentence.

Next... Surgery

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