Mayo - Kidney Transplant Evaluation

I spent Monday and Tuesday at Mayo for my kidney transplant evaluation.  It was an exhausting 2 days, but worth EVERY SINGLE SECOND.  I had to leave the house both days at 5:30am...admittedly it was hard to stay awake during the 2 hour drive in the dark, but luckily I had some entertaining podcasts to listen to (don't judge....I can be nerdy if I want ;).

I originally planned on detailing all of the appointments, but honestly, all of those details aren't all that important, but I will highlight the trip for anyone who's learning along with me.

Monday

• Blood draw
• 2 separate draws by 2 separate techs....blood type (still came back O+ :)
• Transplant Recipient Consult (Transplant Nephrologists)
• There were 2 of them, but I spent a majority of that consult with one in particular, and he was absolutely fantastic.  He knew my ENTIRE medical history.....from memory.  I was flabbergasted in the best way.  He was genuine, thorough and confident, and it was one of the best things about the entire evaluation.
• Medication Review
• I met with a pharmacist to review my existing medicines, what meds I'll be on after transplant, and the challenges with managing all of the meds, and ensuring that I take them every single day.  I did tell her that, for the most part, I'm religious about meds, but I've certainly missed them before (never when on immunosuppressants before though) but that I understand that this is for the rest of my life.  We also talked about the methods I use to manage and remember (pill boxes and iPhone alarms).  I told her that I had severe insomnia on Cellcept and tremors and headaches on Prograff.  Unfortunately, I'll probably be on those again, but I might react differently this time.  We'll just have to wait and see.
• Transplant Coordinator
• I spent an hour and a half with the nurse who will be my transplant coordinator.  A bulk of the time was spent covering the dialysis education class that I didn't get a chance to attend due to the short notice nature of my evaluation.  Again, incredibly thorough.  She did tell me that, once active, I needed to answer every phone call, because one of them could be for a transplant.  She told me that the number could show up as blocked, as it could be directly from one of the surgeons (they, of course, wouldn't want to have their private cell number listed, so it makes sense, but I really didn't think of this option, so I'm glad she explained it :)
• Abdominal Ultrasound
• I never had an ultrasound of my abdomen at the U as part of my evaluation there, so they needed to do one on Monday in order to the arteries and ureters, both in my abdomen and groin area.  They do this in order to check the blood supply, and measure the diameters.  The technician was quite nice, and the whole thing only took a half-hour or so.  However, ultrasounds are a lot more fun when there's a little baby to look at ;)

Tuesday

• Dietitian
• This is never an appointment that I enjoy, but I gotta face facts in that I eat too much salt.    She gave me some guidelines in terms of daily sodium and protein ranges.  I can't promise anything right away because I don't want to fail.  I will say, though, that my visit has caused me to start seeking recipes that I can modify to reduce the amount of salt, so I guess that's progress, right?
• Social Worker
• This one probably makes me the most nervous.  I found myself rambling a bit as it's all just so overwhelming, but hopefully she didn't see that as a negative.  I found out that I have to live in Rochester for the 3-4 weeks after the surgery.  I also need a caregiver with me the whole time, not to mention Joacim needing a caregiver if our surgeries are at the same time, which is a possibility in a paired exchange.  So that threw a HUGE wrench into things, and this is the part that I still don't have figured out.  They do have housing available at a much-reduced cost.  The Gift of Life House is one of them, and it would be like living in a dorm for transplant patients, including communal areas for cooking and TV, but private bathroom and bedroom.  There are also houses to rent that are available as well.  LOTS to consider.
• Transplant Surgeon
• This was the shortest appointment of the day.  I didn't really have any specific questions about the surgery itself, but we did talk about my native kidneys.  If I haven't started dialysis by the time I have surgery, then they'll go in and tie/cut my ureters on my native kidneys during the transplant.  They do this to ensure that the urine that I'm producing (and that's being tested) after transplant is coming only from the transplanted kidney, and this helps them tell if the new kidney starts leaking protein right away, indicating recurrence.
• Financial Services
• Wow, this is going to be an expensive endeavor.  $275,000 by the time it's all said and done (includes living donor expenses).  She also helped explain the whole Medicare thing, and gave me some websites to go to for fairly simple explanations of the covered benefits.
• Transplant evaluation wrap-up
• Last meeting of the evaluation, and back again with the fantastic transplant nephrologist that I met with on Monday.  According to him, everything looks good and he didn't see any issues with getting me listed.  They review cases on Wednesdays, so I should hear something next week.  He also helped answer some questions about dialysis, and DEFINITELY gave me things to think about in terms of what access I'm going to select.

So, that about sums it up.....just waiting on pins and needles for next week!  Aaaaahhhhh....so many moving parts!!!!!