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My
First Reality Check- Kidney Transplant Registration
In November 1999
my name was placed on a kidney transplant list through my local
hospital in Philadelphia.
All patients on the waiting list are registered with the
United
Network Organ Sharing (UNOS), a nationwide network that prioritizes
kidney transplant candidates through a centralized computer system.
Once listed, a transplant candidate waits until a suitable organ is
found. Waiting times may vary significantly due to individual
circumstances, including location of your hospital. I learned that
the country is divided into ten regions and patients in region 2
(Pa., NJ, WVA, DC) have the second largest kidney waiting list, with
a waiting time averaging three to five years or more.
As of
January 30, 2004 there were 59,537 people on the UNOS kidney waiting
list.
As time moved on
and my symptoms became worse I realized that my chances for a
cadaver donor (an individual who has recently died of causes that do
not affect the kidney function) through UNOS were becoming slim.
My
Second Reality Check- Health Insurance
I began looking
at the other regions of the country for a shorter kidney transplant
list. While it may be possible to register in multiple locations,
other factors such as transportation logistics, residency and
hospital transplant protocol make it difficult.
The most
significant issue was my health insurance company. Kidney
transplants are expensive. Without complications, the average
hospital cost can exceed $75,000, excluding physicians, post
operative procedures, and medications. Medicare may be
available; however, I did not apply until after my transplant.
Since the other regions were outside my insurance company’s network,
only a portion of the medical expenses would be covered.
Winning the lottery seemed like my only alternative.
My
Third Reality Check- Inability to locate a family donor
The best donor
for a compatible kidney is from a close family me mber.
My family is very small, two children from a prior marriage, Kelly
and Bryan, and one
brother, Richard.
Asking someone to donate his or her kidney is nothing to be taken
lightly. Emotional, psychological and medical issues need to be
explored. I did not feel comfortable asking my children, who were
relatively young at the time to be a kidney donor.
My brother,
on the other hand, was willing to donate his kidney.
Unfortunately, after blood tests were completed, it was determined
that his creatine level was higher than normal indicating the
possibility of PKD (not surprising since it is a genetic disorder);
Therefore, he was not a suitable donor.
The
End is Near- Preparing for Dialysis
When I started
developing symptoms of end stage renal failure, I prepared for
dialysis. Peritoneal dialysis (the process of cleansing the blood
while at home) was not suitable due to the size of my abdomen and, therefore, hemodialysis was the only alternative. An arterial venous
fistula was surgically implanted in my left arm in order to connect
the dialysis machine to my blood stream. This out patient procedure
is normally done 6-9 months before dialysis. Locating a compatible
donor within that time frame looked bleak.
Dialysis was
becoming my only alternative. There are 300,000 patients on
dialysis. Some tolerate dialysis well and others call it “hell on
earth.” Hemodialysis is done at a designated clinic where a
dialyzer is used to filter out wastes and fluids. Each
treatment lasts 2 to 4 hours, usually three times a week. Requiring
sizeable time commitment, it could have had a significant impact on my life
style, relationships, activities and employment.
At the time I was
special counsel specializing in government relations at
Cooper Levenson a prestigious New Jersey
law firm. I was active in a number of civic and political
associations. My wife and I loved to travel, play golf and do long
distance bicycling. Dialysis was definitely a “life-altering event.” |
