Beginning with the Transplant Center

We had our first visit with the transplant team today.  It's definitely the beginning of the transplant process.  They are a well-oiled machine, clearly know what they are doing, and appear that they will take great care of us throughout the process.  It was a pretty long day - arriving about 8:30, in meetings until about 2:00, and then a few tests after that.  A little bit about what we learned and what the process was like:

  • We started the day with a group introduction to the transplant process.  There were four transplant patients and their support people in the group.  All of us were kidneys.  Given our experience with transplants we knew a lot of what they covered, but did learn a few new facts:
    • A cadaver kidney could take up to three months to begin working!  Never knew that.  Hoping to avoid a cadaver kidney, but you never know;
    • The waiting list for a blood type A kidney (my blood type) is about 1.5 years to 2.0 years at this time;
    • They now try to match the expected life of a kidney to the expected length of time the recipient will use a kidney.  They are trying to avoid putting a kidney with a 15 year expected life into a person with an expected 5 year life expectancy.  That helps us a little bit because my expected life expectancy is in the top 10% (longest) and they give some priority to people in that category.  Again, hoping to not have to go this route;

From there we went into a separate room and met with various specialists one-on-one. 

  • Finance - this was very underwhelming.  It's an area that we had a lot of questions, but the woman that briefed us was not good.  We are going to have to do some research here to be sure we are smart.  No doubt Todd & Carla will be a big help here.  Ultimately we know that we are Medicare eligible for three years from the date of the transplant, but we need to dig into what exactly that means.  Disappointed in this meeting;
  • Transplant Nephrologist - this was excellent.  The doctor was great.  You always like it when the doctor says things like "the transplant team is too conservative here" or "we will be flexible depending upon how the patient is doing".  A lot of interesting items out of this session:
    • He expects that I'll only be in the hospital 4 or 5 days.  Catheter for only 3 days, possibly 4, but almost certainly will not go home with one;
    • I inquired about having a kidney removed concurrent with the transplant.  Not going to happen.  He explained why they won't do that.  Their preference is to put the third kidney in and do nothing else.  If there is insufficient room in my abdomen for a third kidney, as determined by the surgeon, then they'll do a nephrectomy weeks-to-months before the transplant;
    • Given my physical condition and the job that I do, I'll likely be out of work six weeks.  Possibly as little as four, unlikely to be more than six.  Can likely begin doing some work from home in the third week.  We'll see how it goes, but good to know that he is saying that he'll be flexible and base things upon how I feel;
    • I should be able to get back to unrestricted workouts after 90 days, depending upon how the incision heals;
    • They are generally advocates of a new anti-rejection medication that is a once-a-month injection rather than twice-a-day oral medication.  It's a relatively new drug, but they believe that it extends the life of the transplanted kidney, particularly since the standard anti-rejection medication causes kidneydamage.  If I were to go on the oral medication they ultimately would not have me on steroids; but, a light steroid if I'm on the new medication.  All good stuff here.  We'll see how it plays out, but I like that they really try to keep the medications to a minimum.
  • Dietician - this one was also underwhelming.  We both had high hopes for this and were eager to meet the dietician, but we got pretty much nothing out of it.  Stacie asked what types of foods were good for someone with bad kidneys because most everything seems bad for them.  The response? "There is no food that will repair the kidney damage".  Stacie confirmed that she knew that, but was looking for ones that were easier on the kidneys - same answer.  I sort of throw my hands up at the nutrition stuff because everything is bad for you.  Too much protein, bad; fruits and vegetables, a lot of potassium that your kidneys cannot process; dairy, lots of phosphorous that your kidneys cannot process.  Pretty frustrating and given the lack of information from the meeting, not the best use of our time;
  • Social worker - we were sort of ambivalent about this meeting.  Given everything we know about kidney transplants we knew most of what she wanted to cover.  The burden of being on anti-rejection meds for the rest of your life, the follow-up immediately after the transplant (doctors visits four days a week for about a month), emotional impact of a transplant, etc.  Nothing overwhelming.

With that we then had to do a few tests.  Blood draws, and a lot of it.  They took, and took, and took blood.  Important stuff I suppose, but they were bleeding me for a while.  With that done our transplant coordinator, Sahar (who was awesome), told us that she had scheduled a few tests for us across the street right then.  Pretty impressive, she scheduled us for a MRI, CT Scan, and chest X-Ray.  So, we went across the street to have those done.  Talk about great service.  The receptionist at the radiologist said that it would take about an hour-and-a-half to do all of the tests.  They had me in and out in 40 minutes!  I never waited for more than two minutes.  I went immediately from the MRI machine to the CT Scan with no waiting and from there to the X-Ray and the technician was waiting for me.  Amazing. 

Next steps?  We were unable to meet with a transplant surgeon so we need to do that.  We also need to have a heart stress test done.  We are going to do both of those on the 19th of this month.  From there I'm not sure what is next, but I know they'll let us know.

It was a good day.  The transplant center was excellent and the process was not overwhelming at all.  I feel good about where we are at and I think the day made Stacie feel a little bit better also - but I am open to being corrected on this point.