What's up Nina? Thoughts from a Cystic Fibrosis Survivor & Lung Transplant Recipient

My Transplant Story: Part 1 – Listing

I was recently thinking about the first time I was listed for transplant all the way through my transplant and up until now. Trying to remember everything I could and even some little details. I was 16 when I was first sent over to the other hospital to be seen by the transplant team. I had been sick for a long time, to the point a lot was taken away from me, snowboarding, running, walking even. But looking back at it now, that first time, even though I thought I was as sick as I could get, I wasn't as sick nor as ready for transplant as I was the second and final time I was listed.

The first time I was sent over the University of Washington medical center was mainly due to the fact that the bacteria that was in my lungs was very antibiotic resistant and I was on non-stop antibiotics for years pretty much. I was just on a bunch of intense antibiotics (usually on 4 or 5 together) all the time and most of the time it was IV, or a mix or IV and oral.

Then I had to do the transplant evaluation. I had actually done this work-up twice, between my two different list activations, some of the test included Bone Density scans, CT scans, Heart Catheterization, a million blood labs, walk tests, Pulmonary Function Tests, Arterial Blood Gasses, Electrocardiogram, Chest X-Ray, Echocardiogram, among other things.

Well, during this whole time I was questioning and even doubting my need for transplant, maybe because I wasn't ready, or maybe it was just considering I didn't make it through surgery or the possibility the lungs rejected quickly. Which caused me to I wonder.. should I be waiting longer? Should I wait and get sicker incase the lungs don't hold up or something goes wrong. Should I make these ones that are actually mine last until their last breath? And thoughts like that went through my head daily. I know that the transplant team knew what they were doing, I trusted them, and they to were weighing those odds, but I still thought about it myself. Sometimes I thought they made me wait too long, but sitting here today, I think the timing could not have been more perfect.

One of my longer hospitalizations, as you probably assumed by my weirdness.

I was listed on 3 different occasions, and deactivated, because of an increase in lung function most of the time, which was awesome, because most the time I had been continuing to exercise to my best ability. One time I even went through a pulmonary rehabilitation program to try and safely exercise while improve my lung function. I would recommend this type of program for anyone struggling to stay in an exercise routine mainly with an illness or injury so that there is someone to guide you while you are exercising safely depending on your abilities.

Although my lung functions were in the high to low 30's during this time, I quickly adapted my life to the level of sickness I was experiencing (which changed often), and had been keeping up with life for the most part, while still having a pretty good time and never too miserable. Sometimes this was not the case, sometimes I was hospitalized for months due to my condition, and those were the times I did not doubt my future (or current) need for transplant was drawing near.

As years and months went by I required more and more oxygen. Soon I was completely oxygen dependent, and I was needing up to 5 liters 24/7. My daily tasks of eating (which I rarely did much of as I had a feeding tube to help keep weight on while I was fighting all this infection), showering, treatments and medications were all I could do. Other than that my schedule was pretty much bed - couch - bed and a I only left the house on occasion. Towards the end, I could not even shower without assistance as I had to use a stool, and handheld sprayer to shower.

There were some days when I would spend entire days to weeks coughing up loads of phlem, it would be non-stop and never ending, my body would just be so sore and tired from all the coughing it was wearing me out more than fighting the bacteria. Besides the bad and the ugly of coughing, I always had killer abs! Lol.

Read part 2 of the story tomorrow!!