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Kidney Transplant

Summary

Overview of the First Year After Transplant

The past year has been a roller coaster ride. It has been full of euphoria and despair, hopefulness, frustration, major inconvenience, major financial expense and resultant dealing with payment sources, and vacillation between thankfulness for and exasperation with the many members of Sam's extended health care team. He wonders at times, "Who's in charge here--my surgeon? My transplant nephrologist? My regular nephrologist?" This common frustration affects almost all transplant patients despite dogged attempts by transplant teams to communicate via phone, fax, mail and in person with each other to provide optimal patient care.

Sam's and Charles' expenses have passed $100,000, not too surprising considering Sam's problems and hospitalizations for fluid collection around the kidney last summer and for rejection therapy in January and February. Charles' total bill as a donor was $24,800, which was covered by Sam's insurance. Sam's out-of-pocket expense each year has been $1,250 which includes his deductible of $250 plus 20% of the first $5,000 of care per year.

Although Medicare covers kidney transplantation expenses under the ESRD Program, Sam and his wife were misinformed last year when they visited the Social Security office in their county and were told he was not eligible because he received a kidney transplant rather than dialysis. His transplant social worker encouraged Sam to apply early in 1998 for Medicare should he ever lose insurance or be unable to work and stay insured through employment.

Financial coverage for dialysis and transplantation is complicated. In general, a person's insurance is the primary payer for the first 30 months and Medicare is the secondary payer. Medications to prevent rejection comprise the major expense for transplant patients after the initial expensive costs of evaluation, surgery, and frequent monitoring the first year. Transplant patients currently lose their Medicare coverage at 36 to 44 months post-transplant unless they have lost the transplant and are on dialysis.

Efforts are being made by transplant professionals to have Congress extend this coverage so that transplants won't be lost because patients lack the funds to buy their medications. Despite great strides in improvement in transplantation and better success rates, transplant patients in the U.S. still face enormous difficulties with employability, insurability, and coverage for expensive drug therapies needed to keep themselves and their transplants going.

Sam, Charles, their mother and their wives, and Sam's daughter have experienced an unfortunately common brush with the reality of transplant problems and rejection. After smooth sailing all during the fall of 1997, they hit a crisis in early 1998 that caused a great deal of adjustment mentally and emotionally.

Charles doesn't regret for a moment giving his kidney and would willingly do so again for his brother. He worries about the possible loss of the kidney, but with more wisdom than usual for a 24-year-old man, realizes that "it's a risk you take in trying to make things better" and that life doesn't hand out warranty cards. His main frustration is the fact that no one will ever know what caused this kidney to go through such a rejection.

Sam and Tina are relieved that the creatinine has stayed on a plateau now for over two months. Her tests at the time of her hysterectomy showed no malignancy, and his stability means he won't have to initiate dialysis in the near future. Sam is aware that dialysis and another transplant may well be in his future. He is thankful that the final biopsy report did not show a recurrence of his underlying kidney disease, a fact that was confirmed when the pathologist sent his slides to another pathologist in a different state for a second opinion. Finally, he is thankful to have his employment, good insurance and the continued love and support of his family.