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Background:
In 1992 skiing over Christmas break, I caught a cold. The doctor
said “have your blood pressure checked out when you get back to
Atlanta”. They checked it out all right, and diagnosed me with
Autosomal Dominant Polycystic Kidney Disease (ADPKD).
When diagnosed I had about 85%
kidney function, 13 years later my function level dropped to 5%. I
was right on track with my rate of decline; PKD is usually noticed
about age 30, and puts people into kidney failure around age 50.
Other patients like my mom and sister, are still running at a high
rate, nearly 90%. I was fortunate to do a 5 year study at Emory on
PKD, it helped me understand the whole disease. The big questions
at the time was:
1) When, not if, I would go into
kidney failure
2) Do we continue to grow a
family and possibly pass this genetic disease on. I'm sure Kyle and
Kristin (our 2nd and 3rd children to follow
our first – Eric) are glad we made the right decision.
Dialysis:
Another really fun topic. I just finished golfing when my
Nephrologist said, “come in, start dialysis next week”. I said “OK,
how much trouble could that be”. How ignorant I was. I had a PD
(Peritoneal Dialysis) catheter inserted in my stomach, then started
dialysis. Basically with PD, you plug into a machine at night, it
fills you up 4-5 times, dwells for about 1 hour, then drains into a
bag removing toxins. There is also hemodialysis; you hook up to a
machine that cleans your blood 4-5 hours at a time, 3 days at week,
at a walk in clinic. If you can, do PD, because it is less
restrictive and gives you a better lifestyle. The worst part of the
whole PD thing is being tethered to the machine once you plug, it
beeps at you if the lines get crossed, usually in the middle of the
night. The other bad part was having anemia, feeling tired and run
down all the time. Additionally, you walk around with 15 extra
pounds of saline solution in your belly, if you fill up during the
day. Tina Marie, the PD nurse was the best part of PD, she helped
me through all the aches and pains. I can be a world class whiner
and moaner, what a fun time being on dialysis for 14 months.
Transplant Testing:
In early October I went to Mayo to test for a transplant. I just
assumed they transplanted almost everyone, but the reality is, no
they don’t. First you have to have financial resources to pay for
the transplant and the ongoing prescription drugs. Secondly, you
have to be a good patient, willing to follow orders. The last thing
Mayo wants is to give someone a kidney who wastes it. Thirdly, you
must be relatively healthy without a lot of underlining health
conditions. I remember sweating out the Tuesday afternoon
"Selection Committee", but got a thumbs up and was put on the UNOS
List. Now it is hurry up and wait time. In some parts of the
country, average donor time is 36 months.
Donor Testing:
Kidney life span of a living related donor is about 20 years, 17 for
a nonrelated donor, and about 10 for a deceased donor. Your much
better off with a living donor. That’s where friends and family
come in. As the word got out that I was on dialysis, I had many
raise their hand and say "Put me down if you need a donor".
Initially I was still in denial, but I started a little list and
checked back with the first responders to see if they were really
interested, if they fully understood what it all meant; everyone
said yes. The initial testing is somewhat simple. The donor must
be between 18 and 60, not have any underlining medical conditions
such as diabetes or high blood pressure, that knocks out about
30-40%. Then it’s on to blood type matching, DNA matching, and the
overall health of the donor. Finally, if you get that far, they
check out the size and shape of the kidney to make sure it's a good
fit. Mayo wouldn't give me statistics, but I bet for every 10
potential donors, they end up knocking out 8 of 10 somewhere along
the line.
I had some fast early knockouts
(Richard, Hal) and actually got pretty far with Robin (whose husband
had a kidney transplant 20 years ago), but in the end, wasn't able
to go thru with it. My appreciation and heartfelt thanks to all of
them, and the potential donors on my handmade list we actually never
got to.
Doug MacGregor, a friend from
high school and the best man in our wedding said early on, if you
need me, I'm available. So, after a couple rounds of long distance
blood work and a 4 day trip to Mayo, the doctors approved Doug and
we scheduled the Big Event. Initially we were going for a July
transplant, but I got peritonitis, which is a painful infection of
the catheter and stomach, and begin to urinate blood. Mayo
immediately cancelled the transplant. After several painful
outpatient scopes, I was finally cleared to go, and we scheduled the
Big Event for September.
Operation Week:
Doug works as a cartoonist for the Ft. Myers newspaper. He and his
editors thought it would be a great way to raise awareness for organ
donation and assigned a reporter (Franchesca) and photographer (Adi)
to document the transplant for a feature article. Adi took over
1,000 pictures and both had access to all the surgeon consultations
and the operating rooms for Doug and myself.
We started the week with a couple
of rounds of golf. Tuesday we entered Mayo for final pretesting; it
was a go for early Wednesday morning. We had a very emotional
dinner the night before with Mr. and Mrs. MacGregor, Doug's
girlfriend Sarah, Lisa (my wife), our 3 children, my sister and
mother-in-law. Doug, “The Miracle Maker” got a special red plate
and Mr. MacGregor read the prayer. We had a toast after dinner and
I gave Doug a trip to St. Andrew’s to play golf in the Spring. Of
course, I couldn't let him go alone, it wouldn't be right. Really,
what do you get a friend who gives you a kidney? A gift certificate
at Outback Steak House just doesn’t seem appropriate.
Transplant Day:
We arrived early. Doug ran a red light, but the cop was in a good
mood and let him go because of the circumstances. Doug mentioned
how powerful he felt, as if 1,000 angels were lifting him up...
still gives me chills. After a round of "good lucks" Doug left at
7:30 am to prep for surgery. He would have a 2-3 hour head start.
I went to the prep room around 9 am, got final checks and paperwork
completed (Living Will).
I said goodbye to Lisa and got
wheeled into the OR around 11 am. The gas came on and I was out. I
awoke that afternoon and was pretty groggy. Lisa assured me all
went well, and Doug was doing great. I spent the next 5 days in the
hospital while they checked for rejection and infection. Doug was
released Friday morning. I walked down to see him off, very
emotional...hugs all around. I was released Monday morning. The
car ride home was very surreal, as if everything in the world was in
slow motion. Very powerful feeling.
Post Surgery:
Doug came in for his 2 1/2 week checkup, he sang a couple of songs
(he is in a Blue’s Band). One was " The PKD Blues.... I got the
blues.....the urinating blues”, which the kids really enjoyed. The
other was "New Lease on Life" here's a verse:
"The kids are great, the dog's OK
I plug in four times a day and
Thank god for my wife
I wonder when, I wonder if,
I'll ever get that special gift,
The donor gift of life.
The gift of Life
To get the Gift of Life"
It was a 3 week roller coaster
ride of ups and downs, I'm glad the worst is over. It's even nicer
having this 14 year journey behind me. What a great gift of
friendship from Doug, “The Miracle Maker”, and what love and support
I received from Lisa and the kids.
What I learned:
A lot of really great people stepped up to the plate. Some I
have known for years and surprising, some I have become friends with
recently. It's very revealing of character to say you'll be a donor
and mean it. I have been truly blessed.
-
Dialysis
runs about 15k a month, but exactly for what I do not know. I did
all the work and all they did was deliver bags of saline solution
“Made in Mexico” to my house. A kidney transplant will run about
150k from start to finish, so your better off just getting a
transplant.
-
We have an overpriced, highly
ineffective medical insurance/reimbursement system. Two shots
at Mayo were over $875. I could have gone to the corner drug
store and gotten them for $55 each.
-
I now have 3 kidneys and Doug only
has 1. It may be easier to leave them in and watch them shrink
up over time, than to take them out.
-
Over
85,000 people are on a transplant list, it's growing much faster
than the donor list. A person is added every 16 minutes, while
deaths on the waiting list run about 4,000 a year, or about 12
patients a day.
-
Due
to HIPPA, the hospital will tell you nothing about the medical
status of the potential candidates, even if it is your spouse. So
you have to be proactive and keep calling the donors and ask them
the status, I felt like a kidney chaser, here they are willing to
give you a new lease on life, but you have to call them every week
to find out how things are progressing.
-
Because
of insurance reimbursement, hospitals will only screen 1 candidate
at a time, even if you have 100 people on the list. Early knockouts
are easy, but it can take about 2 months for further testing, that’s
only 12 potential donors in a year. It's a frustrating. Another
hurry up and wait process.
-
In
case Doug ever needs an organ, he goes to the top of the transplant
list because he is a donor.
In the end:
Words cannot express the gratitude to all my friends and family
throughout this difficult time. All of the potential donors, and
you know who you are, should sleep well at night knowing that you
tried to do a good thing. As for Douglas, I have a very rare friend
who unselfishly did a very honorable thing. I am eternally grateful
and proud of “Douger”...what a great gift. I know he is looking
forward to watching my 3 children graduate from college and grad
school at my side.
God Bless,
John Bielefeldt
(C) 904-535-8416
(W) 904- 737-0037
(F) 888-203-8659
John served as an ARPKD/CHF
Alliance board member for 2 years after
his daughter participated in the NIH study, “Clinical
Investigation into ARPKD/CHF." His daughter had a GI bleed at a
young age and was diagnosed with Congenital Hepatic Fibrosis. |
