Wednesday, August 28, 2013


I haven't shared much about this publicly, but now, with my Dad's permission, I (Amy) think it's time.

A couple of years ago, my dad was diagnosed with a terminal disease called pulmonary fibrosis, which is a degenerating condition of the lungs.   For many years prior, we had watched Dad struggle with coughing and breathlessness, but we were all under the impression it was just allergies or asthma.  But when the diagnosis came, it hit pretty HARD.

No one wants to hear you have a terminal condition.
No one wants to bear the thought that you will die struggling for air.

Needless to say it was quite an emotional blow.

The thing with pulmonary fibrosis, though, is that some people can go yeeaaars with very little deterioration, and others can plummet downhill fast.  You never know what your life expectancy might be.  So I think my family chose to do what every family would have to do in that situation-- just continue living life and be thankful for each day of breath.

Over the past two years, though, we watched as my Dad suffered from oxygen depletion.  His oxygen tank was his "Buddy," and any exertion of energy would cost him terrible coughing fits and sometimes panic attacks.  In the picture above from last summer's beach trip, this was our HUGE success to get Dad out of the car and onto the sand to sit at the edge of the beach.  You'd be amazed at what a feat this was.  Still, we were happy he could watch his grandkids play on the beach, even just for once.

It's been difficult to watch my Dad's body transform due to the lack of oxygen.  His fingernails and hands are not the same ones I remember as a little girl.  He has dropped weight significantly, and any laughing sends him into horrible coughing.  

It has greatly impacted his ability to DO, too.  Thankfully he has still traveled (though that has gotten almost near impossible now), and he can sit and chime in on conversation, but my kids don't know a "Pop" who plays with them on the floor, or a Pop who can keep up with them.

When he's sitting down, he usually doesn't need his oxygen, but you can see in this picture above how the oxygen tubes have made a permanent mark on the sides of his face.

So if our family goes out and DOES anything, this is how Pop does it- in a wheelchair.

That's also why this family beach picture was all the more special this year.  Pop made it not only down to SEE the water, but we were able to get him down TO the water this one time.

The only "cure" for pulmonary fibrosis is a lung transplant.  Yes, that's right, a LUNG transplant.  (crazy that this is even possible!?!)  The surgery is a major one, obviously, but it sounds like it is not a completely risky one.  (there would be more risk after the surgery with rejection issues or catching a virus that would harm his fragile immune system)  So the surgery provides an opportunity to extend  life and allow oxygen and breath once again (I can't IMAGINE this for my Dad), but with it, there will be other complications to daily life, too.

However, you only become "eligible" for the transplant and are given an allocation number once the physicians determine you are within one year of dying.

So we all thought this transplant thing would be a loooong way off.

But we were wrong.

Today he was given an allocation number.  Number 40.

Doesn't mean a whole lot, until you find out that the last guy that got a transplant had an allocation score in the mid-40's, and he only waited 11 DAYS for his new lung. (!!!)

I don't understand how it all works, but there's a ton of variables as to when my Dad would be selected.   Currently he's #6 on the list, but that could change in a moments's notice once they match up blood types, determine if it will be a double lung or single lung operation (my dad only needs a single lung), etc. etc.

So literally, he could get a call at any moment from here on out.  It could be tonight.  It could be 6 weeks or months from now.

How bizarre is it, God, that in order to save my Dad's life, You will have to take that of another?

My parents are on standby.
The bags are packed and by the door.

When they get THE call, they have only a short time to get to the hospital (over an hour away), and my dad will be able to take a careflight helicopter to shorten the travel time.

He'll need twelve weeks of recovery and my parents will be living in an apartment very close to the hospital during this time as he is monitored carefully.  I plan to fly out to be with my parents during this time as well.

So that's the news.  I don't even know how to feel about it-- I guess I'm nervous and scared mostly, yet ultimately hopeful and want to see my Dad breathing freely again.  My family would greatly appreciate your prayers, and I will keep you all updated when the time comes.

Life just feels like it's on standby right now.
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  1. Oh Amy, I didn't even know a transplant was a possibility--praying for you all! Scary and thrilling to hope

  2. Amy,
    So sorry that your family has to go through this and yet thankful that he has the opportunity for lung transplant. I just lost a dear friend from college to a rare heart/lung disease. I will be praying for your dad and your family as they wait. I didn't get to see my friend before she died but I was able to text her. The last thing I said to her was "God be with you" and she replied "He is..." May God be with you Dad!

  3. We never know what we will have to endure, but God is with us. Praying for your family.

  4. So sorry to hear this, Amy. I know in many ways what you are feeling. Praying the transplant happens soon and is a huge success!