2 years

Wow!! It's been 2 years since my transplant! And it's been a bit over 6 months since my last blog; that wasn't deliberate but my first year update blog took a lot out of me. I still can't go back to that blog post-- it's too hard to relive.  And what I'm about to discuss is also intensely personal and difficult to put out there.
When a transplant patient makes it to their anniversary date it is a big accomplishment especially for lungs (highest failure rate of any organ).  It's natural to think back to the day you received the call, the surgery, and for me all the setbacks I had. I remember the day as if it just happened, even as I'm sitting here in Madison awaiting to go to my appointments the weather is exactly the same as it was 2 years ago.  Eerily the same... the sun is shining, the air is crisp yet warm, a slight breeze.  Isn't it amazing how some things trigger our memory? Last year the weather was also exactly the same, I know the Mighty One continues to watch over me and perhaps the weather is a way to remind me He is always present through the good and bad.  Perhaps it also is a sign from my guardian angel who happened to lose his life on this day to save mine.
My guardian angel is a 12 year old boy whose parents graciously allowed him to live in others.  And I am one of those blessed others. I never expected to hear from my donors family, it's just not something that happens in most cases.  The videos I share on my page or what TV shows is not the norm.  I received my letter on my 1 year lungaversary and when I saw a picture of my guardian angel and learned he was only 12, I was stunned.  When I was on the list awaiting my call I prayed for healthy lungs, a child's lungs were never in my thought process. I knew it happened but never thought that it would happen with me.
My guardian angel is named Josh and his father was gracious enough to send me a letter about Josh and who Josh was a person. Josh was an active 12 year old boy who was a Boy Scout, loved to be outdoors, was inventive, and loved his dogs. (Josh had a dog named Snoopy and so do we)

I've been asked if some of my habits have changed since transplant (there has been research regarding recipients taking on new mannerisms/liking new foods that prior to transplant they didn't, and developing new talents from donated organs due to unique cells/DNA that come with transplanted organs). As a recipient you are not told anything about your donor-- and believe me I tried to question/break all the transplant team down. However I knew that my donor was male; I don't know how I just did.  I've also noticed after transplant I like cheese much more, I'm the weirdo that would peel cheese off of pizza and now I don't. I'm not inventive like Josh however I was a Girl Scout.

As I awoke this morning I thought of Josh and his family and how they gave the ultimate gift of life. Today has a different meaning for them; hug your children a little tighter, be a bit kinder to one another, and live life for there are no guarantees in this roller coaster of life.

RIP Josh -my guardian angel; I will make you proud.


LIVE LIFE     LOVE LIFE    GIVE LIFE

Expiration Date...

Expiration date, everything has one--milk, cereal, eggs, make-up, and human life. The big difference is there is no date stamped on my forehead however I know its sooner than most. At different times during my journey this weighs on me heavily. And for some reason its been weighing on me again lately.

Maybe its because I have a child who is growing daily and I think of his future-graduation day, wedding day, grandkids and the stark reality is that I will probably not see that.
Maybe its because the majority of the patients I see are over 60 and many are well into their 80s and 90s--doing well and enjoying life. And I think what a privilege it is to grow old.
Or maybe its because I have daily reminders in the handful of meds I take throughout the day.

You see I've said this before, life is short.  Life is shorter for me. I still encounter people who don't understand transplant life with lungs.  Many think everything is cured. This transplant is not a cure, it bought me some time.  These transplanted lungs will fail. It is true that I don't know when but I do know they will.
The statistics have not changed, at 5yrs it is still only 50% survival rate.  I believe the longest survivor in the world is 20yrs out, but there are not many that make it there. Its overwhelming to think about.

I am well aware that no one knows when they will die but the hard fact is that most of you will live well into your 70s, 80s, and even 90s-you Dutchies :) . I don't have that.
Most of you will celebrate your golden years with your spouse and enjoy retirement. I don't have that.
Most of you don't think about death. I don't have that.

No, I don't have a crystal ball, I just have the scary statistics that have been laid out before me. Sure I will attempt to prove them wrong, but a fact is a fact.
I haven't stopped fighting, its a daily battle but this is my reality.

I will continue the journey whether its for 1 more year or 10 more years. I have a family to be around for and I have a 12year old boy and his family to honor who gave me the gift of life.

LIFE--------make the most of it, don't take it for granted, and give of yourself.


                             Live Life, Love Life, Give Life