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

12Apr/11Off

Running

My very first 5k

I have ALWAYS wanted to be a runner. I have always wanted to just slap on a pair of running shoes, lace em' up, and go for a run. Not just once, but whenever I wanted to.

4 mile - Honeywagon Race - 52 minutes

When I was constantly sick with Cystic Fibrosis exacerbations, I tried to run but really running was few and far between. I did 3 5k's in a period of like 4 or 5 years, ran one, did one with oxygen, as well as ran/walked another. Every time I made it to the finish line I would be totally wiped out. And always wondering how the other people with normal lungs felt. Because of course most of them did not look even remotely tired comparing to how I felt. I know each person felt completely different after those 5k's, all racers feel different after any race of any kind for that matter, depending on how fit they were and how much training they have, as well as many other factors. I was just very curious.

I had actually completed the couch to 5k a few years (5-6 years maybe) prior to my transplant but the other times I just had done random slow run/walks and then just went out and tried so hard to push myself on raceday to make it to the finish. Usually shortly after the race I would end up sick or just super tired from overdoing it, and sleep a lot for a few days. I would also let my heart rate get to sometimes above 180.

Since I have been working through the couch to 5k program again in the past few months. I've been doubling most workouts, like instead of 20 I do 45 and instead of 30 I'll do 60. Then I started to realize I don't even get very tired durning those and was not tired afterwards. So I finally made it to week 5, which has a 20 minute run at the end, of course I was worried for this all week, but I surprised myself, I did it and felt good! I was just amazed!

2 mile Race - "Runnin' O' the Green - Ran in 26 minutes.

So the next day I ran I tried to go further (totally bagging the couch to 5k plan), instead of 20 minutes I ran for 35 minutes straight! So the next time I stepped it up even more. I started covering the clock on the treadmill so that I just ran without any knowledge of time. It made it a TON easier for me! So this time I ran for an entire hour. I was in complete awe! I felt so good and I couldn't help but think that this is how the other runners must feel.

It was like a turning point in my new life, with my new lungs. I just did something I've always dreamed of doing. Like now it was all real. So during my run I decided to peek at the clock and it showed 45 min and I was still feeling really strong, at that moment I realized I could do everything I've ever wanted to do, of course I knew I would be pushing myself to do more now, but by then there were tears falling down my face. It's actually just really hard to describe the feelings I had towards my new found ability, and the whole time, there was only one thing on my mind… my donor, mostly their family, but I had their lungs, inside of me, and now they are gone, and they are the only reason I am here and able to do all these things, and continue being me, is because of the CHOICE THEY MADE. To be a hero and donate their life.

I also constantly think about the doctors, nurses, and surgeons who got me here today. As well as my family and friends. Because not too long ago I was dying, on full time oxygen on the couch. While just about a month ago I ran 4 miles.

There is an amazing God out there, and absolutely no way I can deny it.

13Oct/10Off

Free at Last!!

As many of you know I received the gift of a a new life, a second chance, and that is all because of the selfless act of my donor choosing to be an organ donor. On September 16th 2010 I received new lungs. Lungs that are not infected with Cystic Fibrosis. Although I still have a routing of medical care to closely follow, and CF still remains in my pancreas and sinuses, it is nothing compared to the 22 years of fighting Cystic Fibrosis which my wonderful Doctors at Children's Hospital in Seattle kept me alive through.

Yesterday I was released from the hospital only 1 week after getting off of the ventilator which I was wide awake on for almost 3 weeks. I ended up walking and getting out of bed while on the ventilator which allowed me to keep some strength and not need physical, occupational therapy or rehabilitation for any longer than my hospital stay.

So now I am free! With only twice daily oral medications, blood glucose monitoring, blood pressure, lung function, weight, temperature, and heart rate monitoring. It may sound like a lot but is PROVEN MUCH LESS THAN I AM USED TO. I don't even know what to do with myself.

This morning my mom and I were amazed that the whole routine only took about 10 minutes. Compare that to 2 hours of inhaled medications twice a day, an hour of a therapy vest and/or flutter to loosen secretions, 3 times a day Iv antibiotics and sometimes 3 times a day inhaled antibiotics, and just about the same amount of oral medications that I have now. Thats not including all of the cleaning of the nebulizers and preparation of the Iv's, changing needles, flushing my port, blood draws for IV levels and everything else I have been doing my entire life.

Weather I have 8 hours or 30 minutes of treatments or monitoring in a day NOTHING COMPARES to the fact that I now have the energy to do things and CAN BREATHE! In short, I will be livin it up, as I always have, with the gift of breath and a whole lot more free time!!

16Sep/10Off

New lungs for Nina

Well it's finally here Nina has gone in for new lungs. Everything looks good so in she goes. Send your love and well wishes. Here's Nina pre-op.

4Jul/10Off

Lung-less-ness

Thinking about being lung-less (my new word for not being able to walk even a block) and that's and over-statement. I walk about 100 feet and wish I was not walking anymore. Then plop down and almost cant breathe at all. Anyways. Lung-less and sitting at the computer I ALMOST feel perfectly normal. Until i remember how many treatments I have to go make or that I need to eat (I mean who needs to eat anymore?) I actually decided that it is a blessing that I lost my hearing because I cannot hear myself breathe, when I am on the bi-pap I can and its sort of annoying how fast I breathe and sort of nice I cant normally hear it. So! I decided that all my photos will just be taken from either my hard-drive (past photos) OR from my desk (not very interesting) OR from my patio (also not very interesting). All in all, I need to be more lung-full. So... not sure how that works, I just need to take more lung-full trips (less walking more exciting car rides!) YAY! So that's it for my thoughts about lung-less-ness. (Sort of like weightlessness, so I guess now I am an astronaut!)