On Wednesday, March 27, I started the lung transplant evaluation process.  I had my initial appointment where the pulmonologist goes over my history, gathers more history and information and makes a decision on moving forward with the evaluation process.

I started writing this blog the night before the appointment.  I started with letting you know that I’d gone to the gym and ran 3.1 miles (5K) before the appointment, came home, showered and worked for two hours before heading out for the appointment.  I started writing this ahead of time because I wanted to be able to post this right after the appointment.

 

But then Wednesday morning came.  I didn’t get up as early as I had intended to so I could get to the gym to do my workout because I felt too tired.  No problem I thought.  I’ll go to the gym after the appointment.  So I did my nebulizers, took my shower and worked two hours.  Then I spent 4 hours at the appointment.  I checked in, had the appointment itself, checked out and went down to the lab to drop off a urine sample and pick up the container to do a 24 hour urine sample.  By the time that was all done I was starving and tired.  I did not go the gym that day.

 

And this blog is being posted a week after the appointment.  I don’t always realize or anticipate how much things can wear me out.  Or how long things will take me to get done.  That was part of the reason I started the blog the night before, so I could be better prepared.  Oh well.

 

To compensate though for what I know is my inability to write a blog about my appointments in a timely fashion, I will be doing video blogs on my YouTube channel.  In fact I’ve already posted two.  You can follow me there at: https://www.youtube.com/channel/UCSdVL9ErZQYPJla3qNR4FJg  I’ll also be writing about it here on my blog.  The videos will be fairly timely (I’ll try to post them within 24 hours) whereas the blogs will be slower to be written but they will likely be more thought out and descriptive.

OK, so now back to that transplant thing:

As of right now I don’t think I qualify for a lung transplant.  My lung function, at 38%, is most likely too high.  Usually one has to be under 25%.  The reason I’m meeting with the team now is to start the process.  Everyone and every lung disease is different though.  There are lots of factors that are taken into consideration.

There’s also the fact that I’m doing cardio four days a week and weight lifting two days a week in training for the NY marathon on November 3^rd.  In some ways I feel that training for the marathon should prove I don’t need a lung transplant just yet.  And there are other times where I think it is actually showing that I do need one.  More on that though in a blog coming (somewhat) soon.

I have to admit though, I’m a little surprised that we seem to be moving full steam ahead with all the preliminary tests and appointments.  I thought it might get spread out a little more but they are working on scheduling everything over a two week period – two full days each of the two weeks.

I have completed the 24 hour urinalysis and on Friday had 15 vials of blood drawn.  It took four sticks to get all the vials filled.  Then they did an EKG.

You might ask why I am starting the process now if I don’t need a transplant yet.  My regular pulmonologist referred me for the transplant evaluation because she is concerned that I might not recover as well from one of my exacerbations, essentially a flair-up that requires IV antibiotics, and if we start the transplant evaluation process at that time it may be too late.

This almost happened to my sister.  She took a downward turn and then started the transplant process.  She lost so much weight, which is common with end-stage lung disease, that I was worried that by the time they finally got her listed she would be too weak to survive the surgery.  It took about around 6 months for her to go through all the tests and finally be put on the transplant list.  About a month before she was listed she received a feeding tube to help her get her calories and nutrition.

Even though a lung transplant looks to be in my somewhat far off future, I can feel my anxiety level rise a little every time I talk with the transplant team.  Even though I knew my pulmonologist was reaching out to them to start the process, when I answered that first call that said “Hi.  I’m from … transplant team,” my heart rate went up.  Even at the initial appointment I felt my heart racing, even though I knew nothing was happening at this appointment other than conversations.

Luckily I have two great examples of how life changing a lung transplant can be.  My sister and a fellow PCDer in Texas certainly made it look (relatively) easy.  My sister is almost five years post-transplant.  Her life is so much better than it was leading up to her transplant.  It’s a tradeoff though.  She has to take quite a few medications to prevent her body from rejecting the lungs.  She still has other PCD issues to deal with like sinus infections.  She still has to go on IV antibiotics about once a year because of sinus or lung infections.

My other example is two years post-transplant and she deals with ear pain and ear infections.  Despite this though she certainly uses her new lungs to their fullest.  I love hearing that she is out there running around the tennis court.  It seems like she is constantly on the go.

There are no guarantees that I’ll be approved for a lung transplant.  Although nothing currently stands out that could disqualify me, I’ll be undergoing quite a few tests to make sure there’s nothing else wrong that we don’t know about.  These tests will be happening the end of April/beginning of May.  I’ll keep you updated on what tests and appointments I have and how they go.