Transplant Testing Round 3

Well, hello there!

Last week on Thursday, my mom and I headed down to UTSW for another full day of tests and meetings.  The day started with an abdominal ultrasound.  That's a pretty simple test, so it was quick and painless.  

After that test, my mom and I made our way over to the office building where we'd be the rest of the day.  We had breakfast in the cafe downstairs before heading up to the kidney transplant office.  The biggest part of the day would be spent in that office in a "kidney transplant orientation" class.  It started at 9am and finished up just before 1pm.  Basically, my mom and I sat at a conference table with a couple of other transplant candidates while different people cycled through the room, each giving a little presentation.

I find the stories of other people fascinating.  Especially in a place like UTSW.  You see folks in the elevator, and you just know that they all have a story.  Pretty soon, these ladies and I were sharing and talking with each other as well.

Neither of them had started dialysis yet, and they had each entered renal failure for different reasons.

One of the women had donated her kidney to her mother 20 years ago.  Now, she's in stage 5 of kidney failure, needing a transplant.  Of course, I was alarmed when I first heard that, knowing that I have potential living donors, but she assured me that her kidney failure was not a result of the donation.  Her doctors aren't quite sure what caused her kidney failure, but suddenly, several years ago, her remaining kidney started failing.  Due to her prior donation, though, she'll go to the top of the list, and her husband is a possible living donor for her.

The other lady is a breast cancer survivor, but they have now found a cyst on her kidney, so they have to remove it.  She'll also need a transplant to make up for the loss in function.

So anyway, back to the orientation.  There were five different people who came through to give information.  We got a lot of handouts, and I took some notes for reference.

The first visit was from the pre-transplant coordinator.  This is the person who probably shared the most.  She started the day by clarifying that transplant isn't a magic bullet that will fix everything.  It's a treatment option.  Just like dialysis is a treatment option.  In other words, while transplant would most likely increase my quality of life and life expectancy, I will still have the same underlying illness (Wegener's granulomatosis), and therefore, I will still need to manage that.  My doctors have assured me that it is extremely unlikely that my Wegener's would attack the new kidney, particularly with all of the anti-rejection (and anti-inflammatory) meds that I'll be on for the rest of my life.  But, for example, my chest x-ray showed a calcified granuloma in the lower left lobe of my lung, as well as prior granuloma activity in my heart.  So I suppose the point here is that a kidney transplant won't necessarily guarantee that a subsequent WG flare won't cause problems somewhere else, in another organ or body system.  This was a good little reality check for me.  I'm still optimistic, though, and I'm hopeful that I can keep the flares away with medication.

I learned that - after all of these tests are completed - I'll be presented to the transplant committee.  They will review everything (medical records, scans, etc.) and come back with one of three decisions: yes, no, or maybe.  Yes means I get listed.  No means that transplant isn't a great option for me.  Maybe means they need more information (more tests or scans or whatever).  Obviously, we're hoping for a straight up yes.

After the committee makes the decision, then they will do additional blood tests (using some of those many, many vials of blood I gave) to determine my level of antibodies and tissue type.  Those are expensive tests, so they hold off on them until after I'm approved to go on the list.

There's only one list, and that's UNOS.  Different hospitals are in different regions, and UTSW is in Region 4, which includes Texas and Oklahoma.  All of the DFW area hospitals use the same list. There are also Organ Procurement Organizations that are responsible for getting and transporting the organs.  It's possible to get on multiple lists with different OPOs, but it gets a bit complicated.

The average wait time for a kidney is 3-5 years.  For people like me, with O blood types, the wait is the longest, usually 5-6 years.  Currently, I have 5 1/2 years on dialysis, and they factor my "wait time" from day 1 of dialysis.  Since I've got so much time already earned, it's possible that I could get a kidney very soon after being listed.  Basically, they explained that I'll be notified after the committee meets, and if I'm given a "yes," then they'll do my tissue typing and antibody tests the next week, so I won't go on the list immediately.  It will probably be at least 1 week before I'm actually listed.  Then, they will start testing my living donors.  If - during the 4-6 weeks it takes to test my living donor - I get a call from "the list" for a cadaver donor, then I get to decide if I want to go ahead and take that kidney or not.

It was a little strange because she kept using the word "offer" relating to the kidney.  In other words, when I get "the call" saying that a kidney is available, they will give me information about the kidney and donor so that I can decide if I accept the "offer" or not.  They also use something called the KDPI (Kidney Donor Profile Index), which is an estimate of how long a kidney should hopefully last.  I had to sign a consent saying that - because I'm under 50/55 years old - I refuse to accept a kidney that has a score of 85% or higher (meaning that it would only last 5-5.5 years).

They also use something called the Estimated Post Transplant Survival Score (EPTS) to determine how long I'm expected to survive post-transplant.  This number is then "matched" with the KDPI.  This is to ensure that the youngest kidneys with the most life left go to the youngest patients with the greatest longevity.

She also discussed the possible risks of transplant.  Of course, it's major surgery, and the drugs decimate the immune system, so I have to be very, very careful of infection (no more sushi!).

Next, we heard from the living-donor coordinator.  She shared information for living donors, so I took notes for Mike.  Living donors have to go through very similar testing to the recipient, and my insurance will pay for all of the tests.

We also heard from the transplant team pharmacist who shared information about the medications I'll be on.  There are three anti-rejection medications, and then there are 4 prophylactic medications that will help me avoid major infections (like I had in 2011-2012).

Next came the financial coordinator who shared information about coordinating benefits with Medicare and private insurance, copay cards, etc.  The medications are expensive.  Seriously. Over $6000.00 a month.  For the rest of my life.   I'll be able to keep Medicare for 3 years post-transplant, but then Medicare will drop me, so I'll have to rely 100% on private insurance.  Needless to say, I've been watching the news a lot recently, trying to keep up with all of this crazy healthcare news.

Our final visit was from the dietitian, and she shared information on the renal diet.  I have been on that diet for years, so that wasn't very new for me, but I did learn that my diet will relax a bit after transplant.  However, instead of watching phosphorus closely, I'll probably have to watch potassium carefully to avoid interactions with my medications.  So, there will be new things to learn and adjust to there.

After the full morning of meetings, my mom and I grabbed a bite of lunch and headed to the cardiac office for my echocardiogram.  I was a bit anxious about this test because the leading cause of death for dialysis patients is heart failure.  The tech was wonderful, though, and she assured me that my heart valves looked thin and pliable, like any non-dialysis patient.  I was extremely relieved to hear that.

This next week, on Wednesday, we have another long day.  I have a nuclear stress test at 7am.  It's a 3 1/2 hour test, so that'll take some time.  Then, at 1pm, I have my infectious diseases appointment to ensure that I'm clear of all infections.

After that day, I'm finished with the exception of my cystocopy on May 16.  Once all of the results are in from those final tests, I believe that I'll be presented to the committee.

We are definitely making strides in the right direction!