Posted by Mollie's husband Steve:
3 Years ago today I got a call at work to go immediately the the ER, My wife Mollie was very sick. After several weeks in the hospital and several months of follow up visits and specialist we finally learned that she had Pulmonary Fibrosis. Unfortunately in her case the disease was serious and predicted to get worse, and it did. Over the past three years her use of oxygen to help her breath has increased. In June she was listed for a double lung transplant and we have been on 4-hour stand by ever since. Today 3-years to the day of when she was first hospitalized by this disease she was admitted at the Cleveland Clinic, no lung transplant yet, but her/our ability to manage her breathing and dependency on Oxygen has become to  much to handle at home. Tonight she is resting in the heart and lung transplant unit getting the oxygen therapy she needs while continuing to wait for the perfect set of donor lungs. So many of you have supported Mollie and I in so many ways over the past three years and I have just a few more request:

1. Pray for Mollie, that a match will be found, transplant will be done soon and her recovery will be swift and complication free.

2. Pray for my kids Jack and Riley who's new normal has been a sick Mom and they have been GREAT (so has Mollie), but now are stuck with Dad for a few months :)

3. Pray for the donors family, whoever they may be? for in order for Mollie to get a new lease on life someone elses family must suffer a great loss.

4. Be a donor, sorry to be blunt but most of my FB friends are firefighters, nurses and cops so you should get it; once your dead you don't need your heart, lungs, liver etc wouldn't it be great to save someone else's life if you could?

It has been amazing what I have learned and observed over the past three years, it puts a whole new perspective on life, priorities and faith. Mollie (and I) will be updating as our journey continues:.
 

Looks Like it's about to Get Real

Earlier this week Steve and I headed back up to Cleveland for my monthly checkup.  My numbers have fallen again and therefore my LAS (listing score) has gone up again. At this point I am in what is about the top 5% on the list for people waiting for a double lung transplant. I have been passed over multiple times at Cleveland because of my size. To put it in perspective lets say Cleveland did 5 transplants last week.  Based on my blood type and antigen match I qualified to receive 4 of those lungs.  However they were all too big.  Basically I need a petite size small.  A normal man sized set of lungs are 6.5-7L capacity.  I need a 4.2-4.8  which is pretty small. So in a nutshell that is what we are waiting for. The perfect lungs.

My doctor thinks the transplant will happen very soon, especially with my LAS score increasing. She really wants me to think about being admitted ASAP.  In the hospital I can do preop "rehab" (exercise) focus on my diet, nutrition and have a large amount of unlimited oxygen that I'm constantly having to refill here at home. My jobs here as wife, mom, social director and secretary at this point are leaving me exhausted to the point that I'm probably NOT resting enough, eating enough, or just taking good enough care of myself. Frankly at this point just packing lunches and folding the laundry leave me physically spent.

Obviously we weren't ready to stay in Cleveland, but the Dr strongly suggests we rethink this in 2 weeks. So the plan now is to sort of tie up loose ends here and head north in a few weeks if not sooner.

We are immensely blessed to have an amazing family, friend, community and church support system. My sister, Jolie and my Mom,  Judy will be the ringleaders of this circus here while I am gone.  Steve will be bouncing back and forth and I have a list made of school friends, family friends, neighbors and church folks who will be filling in the blanks. And if you see my kids or Steve give them an extra hug from me...they probably need it.

So, Please keep us in your prayers. We are continually praying for the perfect lungs at the perfect time - God's perfect plan. I'm not afraid. (I'm a little worried Jack won't pass 6th grade without me micromanaging him, and Riley will go to school with ratty hair, but that's another story... )
I am not afraid. I am ready. And so grateful that this is even an option.
We'll keep ya posted...

Just an update...

It has been a little while since I updated, so here's where we are now.
Steve and I went back up to the Cleveland Clinic on Monday. Nothing new.  They just want to keep a close eye on me - mostly my respiratory status, so until I am transplanted I will be going once every 4-5 weeks for a quick checkup. I gotta be honest I really really hope that I get "THE CALL" before we have to go back up. While we have come to absolutely adore my pulmonologist and her crew, I'm getting sick of blood draws, arterial blood draws, pulmonary function tests and walking evaluations.  Every time my numbers drop ever so slightly. This is a good thing in a way because it makes my listing number go up, therefore increasing my chances of getting some lungs.
My doctor obviously has no real way of knowing because it is all based on a big algorithm of numbers and need (and a good amount of divine intervention)  but she says she has a gut feeling that it will happen soon. I sure hope she's right. Waiting is hard work :)
So that's about it. We'll keep you posted and in the meantime keep praying for me and my family.  If and when it DOES happen it's gonna be a huge change in our "normal" routine for a while. So while I ask you to pray for me and the actual transplant itself, I also ask that you remember my kids and Steve and the village that will be taking care if business until I can come back to my "command" position here at home. ( I have been married to a fireman too long! hhaha)
Love you all....

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