Fundraising...

So this one was hard for me. I know that I'm on a transplant list and all, but I still don't consider myself ill.  Obviously I am not well, but I hate to use the word sick or disabled, while obviously I'm both.

I heard little tidbits here and there about a fundraiser for us and immediately was like.."oh no!! Not for me!! Those things are for SICK people!'  The last thing I wanted to do was sit and smile and put on a happy face while people sat around and talked about how unfair...how sad...my poor kids....and Steve.

Well I was wrong. Not a little wrong. A lot wrong. It was just what we both needed.  Fundraising is an amazing way to let a family know how much they are loved and how many people are willing to help meet our each and every need.  From the organizers of the event, community church groups ( I think one church's whole congregation came right after church ended!) a surprise helicopter landing, neighbors we had never met, colleagues, friends, family and the list goes on. Each one with a kind word, a donation, and even phone numbers for when I finally decide we will need more help.  

It was amazing and humbling at the least to know that so many people came out to support me, love my family and spend their day helping a friend in need.  

I wish I had a better way to say thank you, but THANK YOU from the bottom of my heart. You all know how to make a girl feel loved! I hope I get to a point soon where I can pay it foreword because you can believe I will...
And I'll file this one under Boy was I wrong about Fundraisers :)

(and BTW for those of you who have asked, the website we are using as a fundraiser throughout our journey is:

https://m.helphopelive.org/campaign/5178

Well...It's Official

I HAVE BEEN OFFICIALLY LISTED FOR A DOUBLE LUNG TRANSPLANT. Wow. Those are certainly not words I ever thought I'd be typing. It's kind of shocking to see it right there in black and white.  But to me it's more than fear and anxiety and worry, its more exciting than anything! My one chance to get my life back. It was hijacked a few years ago. Well my lungs were anyway. The rest of me thankfully is very healthy, but my lungs defected a few years back. And they are closing in quickly on becoming useless.

Most of you know that I have been struggling to breathe for a few years now. I was diagnosed in 2011 with Pulmonary Hypertension and Idiopathic pulmonary fibrosis.  Idiopathic is a fancy medical term for "who the heck knows why and how you got it. You just did" So Yay me! Winner of  The idiopathic lottery. I'd rather we had won the mega millions.

I have been on oxygen for a few years now. Carry it in my purse with my lip gloss and sunglasses. No big deal, I can handle this has been my mantra. And I have done a pretty good job of maintaining a "normal" lifestyle.  (haha)
Now that my kids are getting older and are better able to understand the whole transplant thing and now that my oxygen needs are getting to be more and more, and that I have finally accepted that this REALLY is the only "cure" for me, we finally decided that this is the time to pursue a lung transplant.

So after spending the last 6 months burning up I-71 to the Cleveland Clinic and having more tests done than I can count (even as a RN I was shocked at some of the tests that were done. Strange stuff-modern medicine! I have eaten radioactive eggs...just sayin') I have finally been officially listed for a lung transplant at the Cleveland Clinic.

I am keeping this "journal" so that my friends and family can stay up to date with me during this journey. I don't know how long I'll be listed. Could be a month, could be a year. Unfortunately, it all depends on the sad fact that someone healthy has to die in order for me to get my healthy life back.  My size, gender, blood type and antigens all play a part in the waiting time. I have been told that being vertically challenged (aka...short) and having O- blood may make my wait longer. But I guess that's where I stop worrying about it. The timing of all of this is really not in my hands. There have been so many instances and "coincidences" that have happened thus far that I know this is out of my control and that God has a plan and a timetable specific to ME. People ask if I'm totally freaked out and I'm just not. It could be due to lack of oxygen to my brain, but I like to think God has really given me a huge big load of patience and trust in Him and therefore I really do not worry about this. My journey has already been written and I hope I can show patience, grace and courage through it.

I don't want you to read this and feel sadness or pity for me. I think everyone has issues (some more than others) with their health, their family, etc... but one thing is for sure EVERYONE has SOMETHING.   Mine is just an super exciting something.  So I ask you that as you think of me getting healthy again that you please keep my family in your prayers, thoughts, well wishes... whatever it is you do- I'll take it!    

And ...ahem...go sign a Organ Donor Card...   (that was probably not appropriate) haha

Feel free to ask any questions. I'm pretty much an open book about this whole journey and have become a "google-induced" wealth of knowledge and information of all things transplant.

So here we go, and here I wait....
xoxo