Transplant Testing Round 2

Greetings!

Well, today was my first "big day" of appointments down at UTSW, so I thought I'd write up a bit of an update and overview.  The kidney transplant gears are definitely in motion!  Previously, right after my appointment with the transplant nephrologist, the transplant testing team was able to squeeze me in for an EKG, a visit with the social worker, chest X-ray, and lab work (19 vials!).  However, that was just the tip of the iceberg!

Today started with a visit to the urologist.  When I was diagnosed with Wegener's back in 2011, I was placed on high doses of prednisone and Cytoxan.  Well, Cytoxan use has been shown to lead to an increased chance of developing bladder cancer.  That, combined with my personal history of urinary tract infections, alerted the transplant team, and my doctor wanted me to see the urinary specialist.  Today's visit was pretty quick, and the urologist basically confirmed that he would like me to get some scans done.  Thankfully, I already have an abdominal ultrasound and an abdominal CT scan on the schedule.  He also wants to do a cystoscopy after he sees the results from the scans.  The cystoscopy will allow him to get a good look at my bladder to ensure that there are no issues.  I've got that scheduled for May 16.  Thankfully, it's at the Richardson office, so I won't have to take another day off of work.  I can probably get some coverage for my late afternoon classes so I can make the 3pm appointment.

After the urology visit, my mom and I hopped on the UTSW shuttle and went over to POB 2 (Professional Office Building 2).  I had been told that I needed more labs, so we went there first.  Thankfully, today they only needed 1 tube of blood to redo my blood type test.  The phlebotomist said that they always do the blood type test twice, so I guess they want to make sure they've got it right!

By this time, it was closing in on noon, so my mom and I grabbed a bite of lunch at the cafe on the first floor before the last test of the day, the 6 Minute Walk Test.  We went up to the heart/lung transplant office, which was where my dad had gone for all of his appointments.  While I waited for my test, my mom asked if she could see my dad's former nurse, Marci.  She was there, so she came out and visited with my mom while I completed the test.  The 6 Minute Walk Test is exactly what it sounds like...you walk...for 6 minutes.  I was anticipating a treadmill or something, but no - it's just laps in the hallway outside the office.  They monitor your pulse, oxygen levels, and distance as you walk for 6 minutes.  I earned a "gold star" on that test, so yay for me!  After the test, I got to meet my dad's former nurse, so that was cool.  She was my mom and dad's first line of contact, so she got to know my family pretty well.  Talking with her was very encouraging, and she's just so incredibly sweet.

Since the walk test was my last appointment at UTSW, my mom and I hopped a couple of shuttles back to the parking garage and made our way to Davita, my dialysis center.  Today was also my monthly appointment with Dr. Saxena.  He went over my last lab reports and was pleased to report that all of my labs were in line.  Yahoo!  Victory!

When we got in the car, I looked at my phone, and I saw that I had a text message from Mike saying that he "got approved to be [my] donor for now depending on [my] wait list approval and testing."  Apparently, he had spoken with the living donor transplant coordinator, and she said that - as of now - he can be my donor.  Of course, it's not quite that easy.  They still have to do plenty of testing on him - and me - and us - to ensure that he's healthy enough, I'm healthy enough, that our tissues are compatible, our blood mixes well, etc.  But that means that he doesn't have any limitations to being my donor.

I know I discussed this more at length in my last entry, but I just can't get over it.  I have to say again how blown away I am by everyone's generosity.  Just in the last couple of days, I've had several other people volunteer to be tested as a potential donor.  It's truly mind-blowing.  

So, what next?  Basically, I need to lose a bit more weight.  I have an appointment scheduled with the endocrinologist, but his first opening is August 29.  I signed up on the wait list, so I'm hopeful I can get in earlier.

I have a ton of tests scheduled.  Just to give you an idea, here's what's been done thus far...

Friday, 4/14/17 
  • Transplant Nephrologist visit
  • EKG
  • Social worker visit
  • Chest X-ray
  • Labs

Wednesday, 4/19/17  
  • Urology visit
  • Labs
  • 6 Minute Walk test
  • Dialysis visit (monthly)
And here's what's still to come...

Thursday, 5/4/17
  • Abdominal Ultrasound
  • Kidney Transplant Orientation (5 hours of back-to-back appointments with transplant coordinator, social worker, financial coordinator, pharmacist, and living donor coordinator)
  • Echocardiogram
Wednesday, 5/10/17
  • Nuclear Stress Test (3 1/2 hour test where I'm injected with some radioactive material or something and then "scanned" each hour or so)
  • Abdominal CT
  • Infectious Diseases doctor visit (This was added because of my history of cryptococcal meningitis and CMV infections.)
Tuesday, 5/16/17
  • Cystoscopy appointment
Tuesday, 8/29/17
  • Endocrinologist appointment (I'm really hoping to get in to see this doc sooner.)
Whew!  So, yeah.  That's everything so far!  Of course, as we proceed through these tests, if they find anything that needs to be addressed, we'll have to add different tests, but this is "the list" as of now. 

After all of that is done, assuming I've lost the 17 remaining pounds, I'll be presented to "the committee."  If they decide to list me, then that's when they'll start testing possible living donors.  

I still can't quite believe that this is happening.  Everyone at UTSW has been amazing, especially with the scheduling.  I can't quite believe that I can get all of these tests done and only have to take three days off from work.  Crazy!  They have been wonderful at "clustering" my visits into clumps.  Today, for example, by the time my mom and I shuttled from building to building for the appointments, we didn't have any down time, it seemed.  We were busy the entire day!  

I'm so incredibly grateful for all of your love and support.  Thank you for reading.  These blog entries help me process all of this information, and it's surprising how often I look back through entries to clarify things I had forgotten.  I really appreciate your continued encouragement.  You are loved!

#teamkidney



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