|Non-Compliance & Rejection|
|A Letter from Andi|
|Our Experience at the Transplant Forum|
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March 1995. On spring break, my daughter, Andi, and her boyfriend, Aaron, drove from Syracuse to Miami. She had a bad cold, spent most of the week in bed. The return trip was non-stop, and her ankles were swollen. After a few days they were still swollen; she went to the school infirmary.
A urinalysis revealed large amounts of protein and blood. She was referred to a nephrologist in Syracuse. Exam and biopsy indicated IgA Nephropathy, a rare idiopathic and incurable disease. The doctor estimated 8 to 10 years before she would need a transplant. Three years later, I can still remember feeling as though lightning had struck.
She bravely went through all the tests and dietetic counseling. In addition to medication for edema, anemia and high blood pressure, her diet was very strict: no animal protein, very little salt. The doctor recommended a Mayo Clinic experimental regimen of fish oil capsules, 12,000 units per day.
Andi continued in school, made good grades and lots of friends. Aaron was a good companion and source of strength to her.
I felt so helpless, so far away.
March 1996. One week after Spring Break, Andi was in a terrible car wreck and broke her neck. The great trauma team in Buffalo saved her life and avoided both paralysis and surgery. She was in the Erie County Medical Center for a week. Aaron and his mother, Sharon, stayed with me at the Ronald McDonald House, and we took turns sleeping at the hospital. Andi and I flew back to Miami (first class were the only seats big enough for the big halo rig around her head). Three months in that vest and halo.
Back to Syracuse in early June 1996. Tests every few months to determine rate of kidney deterioration. Thank heaven the neck healed 99% perfectly.
May 1997. Graduation. What incredible strength and perseverance Andi has!
September 1997. Andi and Aaron moved to Miami. The head of UM Nephrology Department agreed to be her doctor. Tests showed more rapid deterioration than the Syracuse doctor had anticipated.
April 1998. After several months of close monitoring of her kidneys, the nephrologist told us to make an appointment with the Pre-Transplant Clinic to get the testing started. Stress building.