Transplant Update

Well, this entry will probably be pretty "nuts and bolts" since I have quite a bit of news to share.  I'll save the mushy feeling stuff for another entry.

This is Easter weekend, so we had last Friday off from work, and we also have this coming Monday off.  Hallelujah!

So, to pick up the story where we last left off, let's recap a bit.  I received a phone call from UT Southwestern a few weeks ago, inviting me to apply for a kidney transplant.  I completed the application and submitted it that same day (yes, I was definitely eager).  Laura, my pre-transplant coordinator, then took care of my insurance verification and approval (getting pre-authorizations for the transplant testing).  She then called to tell me that I would need to make an appointment with the transplant-team nephrologist, which I set for yesterday.
Side note - the first available appointment time was actually on April 10, which was the 6 year anniversary of my dad's double lung transplant at UTSW.  I was tempted to go on the 10th just because that felt like some sort of sign, but I also knew that - from a practical standpoint - four days wouldn't make much difference, and I need to save as many of my days as possible for surgery and other appointments.

My mom agreed to go with me.  I have to have a support person with me at every appointment, and Mike is also trying to save his days and avoid missing work.  He had to work on Friday, so I went to my mom's house, picked her up, and we headed to UTSW yesterday morning.

We got there early, and I could tell things were a little eerie for her.  My dad had to go to the heart and lung transplant offices in the same building (one floor down) regularly, so it was strange going through the building again.

First we met with the medical assistant and nurse, reviewing my medications.  I wasn't sure what to expect from this visit, so we just rolled with their agenda.  Dr. Rojas, the transplant nephrologist, came in to see me.  Now, to clarify, I already have a nephrologist, Dr. Saxena, but he's my dialysis nephrologist, not the transplant nephrologist.  Dr. Rojas and Dr. Saxena work together, but my appointment was to begin evaluation for transplant, so I had to see a different doctor.

Dr. Rojas spent time going over my medical history in great detail, asking about family history, previous surgeries, previous infections, etc.  It was quite thorough.  She then explained the testing process, the benefits of transplant, and some of the risks of surgery.  There was a LOT of information, and here are some of the tidbits I remember from the discussion:

• Kidney transplant is a major surgery with a 4-6 week recovery time.  
• The surgery comes with some very real risks, but... it also brings come big-time rewards.  See this Q&A with my doc for her explanation.
• The transplanted kidney would be inserted into my lower abdomen, in front of my pelvis.  I would have open surgery, with an incision of about 6-7 inches in length.  My own kidneys would remain intact.
• After transplant, I would be severely immuno-compromised for several months.  I'm sure that - like my father - I will have to limit my interactions with people, wear masks regularly, and work hard to prevent infection.  I will be on anti-rejection medications for the rest of my life, but they will try to reduce the dosages within the first couple of months.
• Most likely, after surgery, I'll spend several days in ICU.  Eventually, I'll probably be moved to a regular room and monitored, staying in the hospital for about a week to ten days.  After that, I'll probably be able to go home, provided that I have 24 hour care from someone else (my mom and/or Mike).
• I won't be able to drive for at least 4-6 weeks.
• For the first few weeks following transplant, I will need to go in to see the transplant team at least 3 times a week.  
• The first few weeks/months after transplant are the most dangerous for me.  Transplant will definitely increase my life expectancy, but the risk of death actually increases immediately following surgery before it plateaus and decreases.  In other words, I will have to be very careful in the weeks and months following transplant.
• Kidneys from deceased donors typically last 10-12 years.  Kidneys from living donors typically last 20-25 years.  Because living donor kidneys are typically healthier, they last almost twice as long.
• Potential living donors are evaluated independently from the recipient.  The team takes all the applications for potential living donors, and they select the one person with the greatest odds of being a good donor.  Then, they begin a workup of that potential donor.  Only one potential donor can be evaluated at a time.  They work carefully and deliberately, checking every aspect of the donor's health, just like they do with the recipient.  Therefore, they can ensure that the donor remains as healthy as possible.  This part of the conversation made me feel much, much better about my loved ones considering living donation.
• The testing process typically takes about 60 days.  It's comprised of a variety of tests, including, but not limited to, blood tests, chest X-ray, EKG, echo cardiogram, abdominal sonograms, nuclear stress test, PAP smear, dental exam, etc.  Along the way, if questions pop up, then other visits and tests may be required.  For example, I have a history of urinary tract infections, which can be life-threatening after transplant, so I am seeing a urologist on Wednesday to investigate further. 
• I have 5 years of dialysis under my belt, and they count the first day of dialysis as your first day "on the list," so I should hit the list with at least 5 years of time logged.  The average wait for a kidney in Texas is 3-5 years, but people with 0 blood types (I'm 0+) have to wait the longest.  We're only able to accept from other 0 donors, so - if I don't have a compatible living donor - I could still have a wait ahead of me.  

The doctor was wonderful, answering my questions and explaining things in great detail.  Everything they do is with a full team approach.  I have a pre-transplant coordinator (I'll have a post-transplant coordinator also), social worker, financial coordinator, nephrologist, transplant surgeon, medical assistant, and nurse.  Every person we met was informed and focused.  If they didn't personally know the answer to my question, they made every attempt to get the question answered for me.  I was amazed and impressed by their communication and dedication.

One of my questions was about weight loss.  I wanted to know how many more pounds I needed to lose to get listed.  The answer?  20.  Not too bad!  That brings me to the endocrinologist.  Dr. Rojas explained to me that - sometimes - she tells candidates that they need to go and lose more weight before continuing the evaluation.  However, she told me that she has faith that I will be able to lose more weight, so she'd like to do two things concurrently.  One, begin the transplant evaluation.  Two, get me in to see Dr. Almandoz, who specializes in non-surgical weight loss.  Apparently, he's a very popular doctor with a waiting list for new patients, so the scheduler is going to get me the first available appointment, and then we'll hope for a cancellation so I can get in earlier.  He will meet with me and review my history, my thyroid and metabolism issues, and help me lose those 20 pounds quickly, effectively, and healthily.  

Meanwhile, she wanted to start the transplant evaluation.  She doesn't want me to continue sitting on dialysis when I could work toward getting a kidney.  After completing a physical exam, she told me that I was an "excellent candidate" for transplant.  Yahoo!  Then, she went and got Laura to come in to talk about next steps.  

We told Laura that we had no plans for the day, so she started making her way through the list to see what tests we could do that same day.  She got me set up for a chest X-ray, lab work, a visit with the social worker, and an EKG.  The medical assistant came and did the EKG first. She told me that I had "beautiful lines," so I guess that's a good thing!  Heart disease is the leading cause of death for dialysis patients, so that was a huge relief to me.  

Next up was the social worker visit.  She asked a LOT of questions about our plans.  For example, who will be my caregiver?  Who will be Mike's caregiver if he's the living donor?  Do we have paid time off of work?  If we lose pay, do we have savings?  Etc.  She promised to get "all up in my business," and she did, but it was good because it made me realize what details I still need to iron out.

After that, I did the chest X-ray, and then we went to the lab.  They drew 19 vials of blood for all kinds of tests.  They check for every possible illness and virus.  For example, when I was on my lovely Cytoxan/Prednisone cocktail back in 2011, I picked up cytomegalovirus, which isn't a big deal in healthy people, but it can be a very big deal for people with a weakened immune system, like transplant patients.  

Long story short, by the time all of this testing is finished, if there is anything wrong with me in any way, they will have found it.  

After the labs, we left for the day and went to get lunch at Pappadeaux.  Now I'm waiting for a call from the scheduler to book the nuclear stress test, echo cardiogram, and sonogram.  I'm hopeful that she'll call Monday after the holiday weekend.  Since I'm heading down to UTSW on Wednesday to meet with the urologist, I'm hopeful that we can "cluster" a test or two on to Wednesday.  I also have my monthly dialysis center visit that day, so at least I'll be able to take care of multiple appointments on the same day, making the most of the day off from work and the trip down to Dallas.  

In the meantime, I'm counting my Weight Watchers points and doing my best to keep myself happy and rested.  I still have so many questions and uncertainties, but I'm highly encouraged by this step in the right direction.  I'll keep you posted!