My Moments to Breathe

Friday, February 12, 2016

PFTs, Duckmasks, and Donors

I had a doctors appointment yesterday, on a cold winters day. It wasn't really a "planned"visit, at least not a planned for more than 4 days type. With all the germs flying around and this nasty whatever I have in my sinuses that hasn't gone away with 4 weeks of antibiotics, my doc wanted to check me out.

I admit I was a tad nervous. I had to fess up that I was around more than your average germs, I had to fess up to having a job, and had to fess up to being sick. But once again, the Lord has me in his protective arms. My xrays must have been clear of crud or infection because nothing was ever said about them, I walked 1920 steps in 6 minutes and my oxygen stayed pretty normal around 97% (although I liked seeing that 100% I had for over 1.5 years....I'm wondering if my body is just so use to O2 now that its getting lazy with it. Expand those lungs and get back to that 100%! But here is the kicker. The levels in my lungs went up even more. Yes, thats right, they are even higher. They are now at 119%. Can we all just pause and look at the number for a moment.


I mean we are talking about the little CFer right? The 1% less than 120. Thats like more than 500x better than I was pre transplant. I was in tears yesterday after I saw this. Happy happy tears. I am living pretty close to how an average normal person lives. My mind can't comprehend this. 

The next 2 weeks I will be going into Madison 2 more times for 2 more appointments. And praying those turn out much like yesterdays. This crazy doubly-blessed life of mine.

On a sad side note. One of my nurses is retiring and yesterday was the last time I will see least in that setting. She was a blessing. The first face you saw going into clinic, and even when you were sick she would smile and get a smile out of you. She made me feel so loved, always did. She told me how happy she was that I was there, living. That she remembers everything about my journey since I started at UW. I will miss her so very much.

The little bit of me inside (Ok I say little but really its HUGE...more than I will ever lead on) is still wanting to know anything and everything about my donor and family. Its hard for me to know that their lungs are inside of me, keeping me alive, and so unbelievably emotionally undesirable to me; and I don't know anything about the person they were born into. Like these lungs, think about it, had a good home for who knows how long and now they are mine. The ones I was born with are in a garbage (and some pieces used in research!) and the ones I breathe with now don't belong to me. 

And thats how I treat them, they aren't mine. They were a priceless gift, given to me blindly and I need to take care of them better than I take care of any other things on or in my body. OK, but to get back to what I was going to say...

I asked if anyone knew anything about my donor...basically age and sex but nobody knew. But....BUT...I found out so much about my potential first donor. My dry run donor from back on the July day. Like I know their story. I know it. Crazy emotions right now. Even though those lungs couldn't survive in me, I now know who that person was. I know about them. 

I know the name. The age. The sex. What they look like.

I know.


Right now I feel like I can't say much on my blog for probably dumb reasons, but at the moment don't feel comfortable. This helps some sort of mental state of limbo a tad. One of the donors I know, even if its not the person who lives inside of me, its the person who still signed their donor card and therefore was giving me a chance at life. I still am so thankful for that. And of course thankful for the surgeon who know that those lungs were too damaged from the cause of death. I can't even tell you the feelings, in full, of how and what I am feeling. I don't even know if any of the things I just wrote really make sense.

But hug your loved ones right now. Laugh just because you are here to do so. Eat that extra piece of cake (I know I ate about half of it!) And sign your donor cards!!

Saturday, February 6, 2016

Shortribs, Wine, and the CFF

Lastnight I got to do one of my favorite things, help raise money for the Cystic Fibrosis Foundation. And the food and drinks were out of this world!

It was the Milwaukee Wineopener and I was asked to be the speaker. There really isn't too many things that humble me more. I open up about my story of CF patient turned transplant survivor. To this day all the emotions run high when I talk about it, and at events were everyone there is her to support people like, tears and smiles both flow pretty steadily. 

The feelings of pre-transplant come flooding back. The getting ready to die feeling that my brain pushes back are now brought up to the foreground and I need to take to minute to remember that, yes, I am breathing. Yes, that is cool air coming in and out of my lungs. Yes, dying has been put on hold. Deep breathing, expand those beauties and show everyone what donations can do. 

I said it lastnight, and I will say it again and again. Without people like those who were there lastnight, and people like you who have supported, donated, and helped out...I wouldn't be here as long as I have. I wouldn't have been a sister, daughter, wive, and mom as long as I have. Isn't that crazy!? Thank you all and give yourself a hug from me (and my family.)

Bid for a cure set a new record for the event, and that money and donations from other events help make a cure something that could happen. The cure for CF may be too late for this girl, but if it means that there are little girls and boys out there right not don't have to worry about what CF will rob them off, of hurting them, then I will forever speak (or volunteer) and the Foundation. I will forever do my part and make CF stand for Cure Found. 

I meet incredible people with some incredible stories at events. I get to catch up with so many I have met in the past. I hear from parents how well their own children are doing. All from putting skis out and going in the snow, to moving on to the next big chapter in ones lives....and the best part if these things are huge for CFers, for their families. I talk to parents about how they feel about their child, about the accomplishments. I really have no words for the feelings I get when I have conversations with them. No words. I not only understand a little more the thoughts  and feelings of my parents when I was young, but can understand the scared hope in their eyes. 

Keep on fighting CF warrior and caregivers, keep on fighting!!!