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Three years ago, I was placed on hold with UNOS for a kidney transplant at Denver Porter Adventist Hospital. I have been waiting for "the call" now for three long years. The main reason is that I have tested high for the "PRA" (Protein Reactive Antibody), meaning that the chances of me matching with a random cadaver donor is less than 20%.
We have been working with OHSU over the last year to become listed with them, as they do a High PRA Rescue Protocol with a living donor for people like me. Making my chances of not rejecting a living kidney donor kidney much better.
After talking to my coordinator today, I anticipate being "active" on the OHSU list right after my next appointment with them on January 20, 2010. This means that those interested in being tested can contact the OHSU Living Donor Coordinator at that time.
This is a crucial step for me since we know that I will be a hard match.
To refresh the situation, as a transplant candidate I am required to submit a PRA blood test every two weeks. It basically measures the level of antibodies / antigens in my blood at that moment in time. This will determine what organ would best "fit" me with the lowest chance of rejection.
Since my PRA levels have been so high to this point, I stand a greater chance of rejecting 80% of the organs that may become available through the general population.
So, it becomes a numbers game. The more available organs I can be exposed to for consideration, the higher the chance I have of finding one that will work.
Right now, they are estimating my wait for a cadaver donor to be 6-10 years.
I don't have that much time.
The best match would come from a family member. John's blood type is different, and the kids are not 18 (the minimum age required to donate). This is one drawback to being an only child.
I'm going to step completely outside my comfort zone here.
Since this started, I've been uncomfortable with asking the question of anyone, but as this disease progresses I am beginning to understand that my current treatment is not an effective long term solution. At times and in the back of my hear, I've just assumed this would all work itself through.
Would you consider being a living donor? (More information below this section, please read on)
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Here are some FAQ's on the process:
Who can be a kidney donor?
While it is not
necessary for living donors to be related to the recipient, they are
usually friends or relatives. The decision to donate an organ is
important and must be made by the person and his or her loved ones. You
should not, under any circumstances, feel pressured to donate an organ.
Our experienced transplant team stands ready to advise and assist you
in this process.
General requirements of living kidney donors are:
- age 18 to 70 years
- good general health
- normal kidney function and anatomy, as determined in the evaluation process
Conditions that would exclude a person as a living kidney donor:
- diabetes
- certain forms of cancer
- intravenous drug use
- certain infectious diseases, such as AIDS or hepatitis
How do you donate a kidney?
When you agree to donate a kidney, you need to be evaluated at either Portland OHSU or Porter Adventist in Denver.. You will first have a brief
telephone interview. Based on this information, a kit for blood
sampling may be mailed to you. You then take this kit to your local
medical lab or hospital and have a blood sample drawn. Instructions for
mailing the samples to the transplant clinic are included in the kit.
If these results prove suitable, you will need to have a medical evaluation to make certain that the donation will not cause you harm. Much of this can be performed by your own health-care providers.
At a suitable time the donor must travel to the transplant clinic to meet with a Nephrologist (kidney specialist) and surgeon and complete the assessment. These Mayo physicians will discuss all aspects of the testing and donation with you.
If at any time a test result shows that you do not meet the criteria for donation, the evaluation is stopped. One of every five potential donors is found not to be suitable for donation.
What risks are associated with kidney donation?
Although some risks are associated with any major operation, donating
one kidney does not pose a major risk to a healthy donor. Studies show
that the remaining kidney will continue function normally and will
compensate for the loss of the other kidney.
Kidney donation should not restrict or interfere with your lifestyle after full recovery from the surgery. There is no routine need for any special diet or medication after donation.
When is the transplant scheduled?
When a suitable donor is identified, the transplant is scheduled at a
convenient time for both donor and recipient. Every attempt is made to
identify a time convenient for both parties. This is usually four to
eight weeks after the completion of the evaluation. Donor and recipient
both return to Rochester a few days before the transplant.
How is the donation surgery performed?>
The term "nephrectomy" refers to the surgical removal of a kidney. Two types of surgery can be used to accomplish this:
- Laparoscopic Donor Nephrectomy
This operation is performed by using a "scope" to peer into the abdomen through a small incision. This approach makes it possible to locate, secure, and remove the kidney through a surprisingly small wound. This "minimally invasive" surgery allows for a faster recovery than with the traditional operation. Donors are generally able to leave the hospital one or two days after the surgery and can often resume work within two to three weeks. - Traditional Donor Nephrectomy
This operation is performed using an incision across the flank on one side of the back. The kidney is secured and removed under direct vision. Most donors need to stay in the hospital for four to five days and can usually resume work in three to six weeks, depending on the type of work they do. This method is widely used in other transplant centers, but is rarely required at Mayo Clinic.
Will I need any follow-up evaluations?
Six to nine months following your surgery you will need to have blood
and urine tests and be evaluated by a nephrologist. The kidney
transplant coordinator will schedule these follow-up tests, which do
not require a stay in the hospital. The results will give a good
indication of the function of your remaining kidney.
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The first requirement is that you have a blood type of either A or O. If you don't know your blood type, no worries. They will test you if accepted for consideration.
*To answer the questions below, I have been told "any A or O" will be considered. Thanks for asking to clarify :)!
Please know that all costs associated with the entire transplant experience (with the exception of costs related for travel to/from the hospital for surgery) are completely covered 100% by my insurance. We are working on ways to offer payment for travel related costs to the final approved donor.
The process can be done anonymously (to me) if you choose, simply
by contacting OHSU (Oregon Health and Sciences University) in Portland,
OR or you can contact me directly at jkbach(at)comcast.net. . Ask for the Living Donor coordinator and tell them you are interested in consideration for Kelli Bach. She will ask some basic health related questions from the list above, and if you are ok, they will mail some paperwork to fill out. A simple questionnaire.
From there, they will take all candidates and put them in order of potential match. Testing would be done locally to you and mailed back to the transplant center. No travel to the center is required (that we have been told about) until the actual surgery.
I know this is a huge request. I don't expect a huge response.
Also, another request - would you consider a link back to this post on your site? There may be someone out there beyond our scope that would be interested. Maybe not for me, but another person needing an organ transplant. We never know.
Either way, if God lays it on your heart to participate in this in whatever way, then all glory to Him.
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