Sunday, July 21, 2013

Is there a pause button?!?!?!?

So the last 2 yrs have taught me that life is uncertain, you are not guaranteed tomorrow, and I'm not in control.
I have frequent doctor appointments and monitoring. My last lung function testing showed an improvement---WHAT?!?!? It isn't much of an improvement--currently 28% -it was 22% earlier this year but when you have such crappy lungs it feels like I can run a marathon.  Of course I thought Jesus performed a miracle with all the prayers being said so I went out to a steep hill by our house and walked up it.  I was still short of breath, chest tightening occurred, and fast heart rate developed--this is normal happenings after someone has run miles and miles; this is what happens to me when I walk up a hill or more than 5 stairs.  Ok, no miracle yet but something else developed--HOPE.

Most of you do not know what it is like to be listed on a transplant list--it feels confining.  My family and I cannot freely go where we chose-I must be close to my chartered flight if Wisconsin calls so I can get across the big lake in time. There is a strict time limit.  Organs are not viable for hours and hours--there is a small window of opportunity for the transplant to occur.
Being listed also makes me feel anxious--when will the phone ring? Will everything and everyone be ready for their designated roles?

I decided to talk to my team of docs to see if I could take a time out from being on the transplant list. After all I was feeling a bit better, I still tire easily and have to limit myself.  All my docs were on board--I was told it is important to 'milk' your lungs as long as possible.  When my lung transplant occurs the clock starts--what clock? The clock countdown to lung rejection--this WILL happen to all recipients. One does not know if that is 2days, 2wks, 2 yrs, or 20yrs. (I think the record is 20yrs) Lungs have the highest failure rate-the nose is a direct vector for bacteria, viruses, allergens, and spores into the lungs.
A lung transplant is NOT A CURE, it just buys one time.
So please understand my trepidation, there is so much more which I have discussed in previous blogs.
Greg, I, and friends prayed about this decision.
There is a 'pause' button and I have activated it. Its more complicated than that but I'm still on the list but there is another part I am on. 
Is it risky? Sure, but a lung transplant and all that is involved is risky as well--very risky. I am fortunate enough to be very in tune with my body and I know when something is going wrong. I continue to be monitored closely and will have lung function tested routinely.
God is in control.
I was also contacted by a man in Ohio who is struggling with asthma and BO.  He is 32 and currently living with 15-18% lung function! He plans on being listed at Barnes Jewish in St Louis this fall. He is still working. Pete has given me hope!! As unbelievable as it sounds Pete is still functioning with very limited lungs! Maybe I can continue to push myself and 'milk' these poor lungs of mine. They are mine and that makes them a perfect match for me.  I am not naive, I know a lung transplant is in my future but can I hold off on starting that clock? Can I take my son to Disney and make some memories NOW, can I live in the moment ? Yes, yes I can!
God has given me some time and I'm gonna take advantage of that. I feel peaceful and I haven't felt this way in over 2yrs.
Thank you for the prayers and support.


  1. I can understand this decision. We keep praying for you.

  2. Joyce, all the best to you and your family. Our phone conversation felt a little like two people passing opposite directions through a revolving door. I'm jumping on the crazy train of transplant listing while you hop off. That you feel at peace with your decision (as I do mine) says it all. May you be gifted with much, much peace and health during a very long pause.

    Now, go see Mickey!

  3. My thoughts will be with you and your family as you take this pause. Enjoy your time with your family at Disney!!

  4. You are an inspiration and so happy to hear that you have decided to take a break and enjoy your life.