In 1973 my illness manifested itself for the first time. I had kidney stones that were
removed surgically; they were calcium oxalate stones. My serum creatinine was 2.0
mg/dl. No doctor at that time was concerned about the origin of the stones or my
future health. In 1980 I became dialysis-bound very quickly. I went for treatment to a
renowned University Clinic. The diagnosis was chronic pyelonephritis. This diagnosis
was not abandoned without constant new evidence of another underlying disease.
Examination results which led to the suspicion of oxalosis were neglected,
misinterpreted or declared irrelevant.
Until my first transplantation in 1981 I was on maintenance hemodialysis. At the end
of the 1980s, my kidney function deteriorated rapidly; I was on dialysis for six weeks
and then received a kidney again, the function of which was initially limited, so it was
punctured three times. Oxalate crystals were found. In later sonographies of the
kidney, there was repeated evidence of calcification. In 1997 joint and bone pain
occurred. In September 1998 the kidney function was lost and I started a peritoneal
dialysis. In the following year my vision deteriorated and the ophthalmologist
described crystalline deposits in the retina. In a rheumatological consultation a
crystalline arthropathy was diagnosed. At the same time soft tissue calcifications
were found in arms and hands. At the beginning of 2000 a retinal detachment
occurred. Because of the increasing pain in bones and joints an iliac crest biopsy was
performed, which showed distinct oxalate crystals. The performing pathologist spoke
of "primary or secondary oxalosis". Comment of a senior physician of the University
hospital: "This gives us pause for thought."
A professional liver biopsy was performed at another University, the result of which
showed a low residual AGT activity. On 26.11.2002 I successfully received a
combined liver and kidney transplantation.
In the meantime, I am almost blind, can hardly read without a magnifying glass and
cannot read perseveringly,
I can no longer drive a car, no longer practice my profession and suffer more from
bone and joint pain. Because of the strong crystalline deposits in the skin, extremely
painful tension and increasing neuropathic pain occur there.
Despite all this, I have not given up hope that I will be able to achieve a better quality
of life again in the coming years - also with the help of new medication.
