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What are the side effects of the medication you take after the
transplant?
That is a difficult question to answer for 2 major reasons:
#1 Patients take different medications for their transplant. Some different
medications taken are Cyclosporine, Imuran, Medrol, Prograf, & many other
types.
#2 There are no 2 people that have the same side effects. Side-effects vary
from person-to-person.
As for me, I had strong side-effects at the beginning, but as the dosage
strength decreased, the side-effects lessened. After 2 years, I really do
not have any side-effects at all.
Some side-effects can be hair growth, hair loss, weight gain, diarrhea, nausea,
blurred vision, and others.
Did you get both organs from the same donor?
Yes. This is primarily the way it is done since the 2 organs have to almost
be a perfect match. Some transplant centers do take the organs from different
donors. Some centers will use a kidney from a family donors & then
wait for a cadaver pancreas.
What kind of numbers did they quote you as far as how long you can expect
this kidney and pancreas to last?
That's another tough question to answer since this can vary enormously from
person-to-person depending on the quality of the organs & the health
of the recipient. I really never received any kind of idea how long they
can last. I know if I take care of myself they can last as long as if they
were my own.
Have you had any complications?
One complication I had was 12 days after my transplant I had a minor
rejection, which is normal. There are many complications a person can have
after the transplant including rejections of the organs & infections
since the medication you are taking lowers your immune system.
In March, 2001
I had a mild rejection of my pancreas but that was controlled with steroids and
since then I am doing fine.
Did you have insurance, and did it pay for most of the cost?
Yes, I was lucky. I had private insurance through my wife's employer. However,
Medicare does cover the kidney & soon will cover the pancreas. For the
time being, the pancreas can be covered through your state Vocational
Rehabilitation program. It is a new program & many local Voc Rehabs are
unfamiliar with this program, yet it does exist.
Do you have any suggestions for us just getting started?
The first thing you need to do is find a Transplant Center near you that
performs the double transplant. (see my web page titled
"List of Hospitals") You do want to check how many they have performed & their
success rate. If you have private insurance, check to see if they use a
particular Transplant Center.
Check with your doctors, particularly your diabetic doctor (endocrinologist)
& your kidney doctor (nephrologist). They will get you started with the
necessary testing. You cannot get on a transplant list until you go through
the "pre-testing" phase.
And.....
Get started early!!!!!! Try and get started before you get very sick!!!!!
What can you tell me about just a pancreas transplants?
They are being done successfully across the country, but the islet cells
are becoming more increasingly used. Check with you diabetic doctor about
this.
Where are they being performed?
This information can be found on my Home Page on my web site at List of
Hospitals. Scroll down & click on the UNOS link on my Home Page.
Some places that are performing quite a lot of Pancreas (alone) transplants
are:
Univ. of Maryland Hospital (Baltimore, MD)
Univ. of Minnesota Hospital (Minneapolis, MN)
Univ. of TN Medical Center (Memphis, TN)
Univ. Hospital (Seattle, WA)
Univ. of Nebraska Medical Center (Omaha, NE)
Yale New Haven Hospital (New Haven, CT)
Univ. of Miami (Miami, FL)
What is the cost of the kidney/pancreas transplant?
It varies with Transplant Centers, but it averages around $150,000 to $200,000
depending on length of hospital stay, complications, etc.
We want to know about your life after the transplant & how you are
feeling now?
Basically I am feeling great, even better that I ever thought I would. However,
I am legally blind from the diabetes still so I have not returned to work
yet since public transportation is poor where I live. I do try to work at
home though. I no longer have diabetes, do not take insulin & I am on
no dietary restrictions.
I can basically do everything I did when I was healthy except things that
require good vision such as driving & particular sports.
The one major
problem I have developed is bone loss, due to the steroids I have taken over the
years for the transplant. I currently have been diagnosed with
Osteoporosis, which I take medication for. I advise anyone who is on
steroids to take Calcium supplements everyday.
How long did you have to wait to get the transplant?
I waited only 15 days. They say the waiting time for this transplant averages
between 3 months to a year, but I have seen most people called within 3
months
Since the transplant do you have any food or fluid restrictions?
I have none, but again that changes from person-to person depending on their
particular health before & after the transplant
What did they do with your dialysis access after the transplant?
It depends on what type you have. I have a fistuls used for hemo-dialysis which
stayed intact. People on Peritoneal Dialysis have the catheter removed during
surgery in most cases.
