Sunday, May 5, 2013

Had some follow-up...

This past Monday, Greg and I traveled to Wisconsin for routine follow-up.  Once you are listed at a center you need routine testing and follow-up.  Some of the testing can affect ones score. Everything is stable currently.  U of W transplant center seems to be a well oiled machine and that brings me some comfort in a very uncomfortable situation.
The waiting can be excruciating, especially as the weather is getting nicer and I would love to be able to travel or plan a trip.  My life feels like it is on hold, will perfectly matched healthy lungs come my way?? When?? These are questions I do not know but they go thru my mind many times a day.  Then of course doubt starts to creep in, it's never going to happen.  But then I remind myself there is The One that is greater than all of us, He is in control and His timing is perfect.
It is a daily battle, please continue to pray for perfectly matched, healthy lungs and never take a day for granted.


  1. we keep praying for you, daily.

  2. You are an inspiration for my son and my family.I am so grateful you decided to share your story. As rare as this disease is you have done an amazing job bringing not only your perspective but a wealth of information about Organ Donation and the true gift of life. Truth is before I found your blog I was a mess of emotions which I had to keep inside. When doctors chose treatments like chemo and still can't give you any answers if it will work and then mention that Lung Transplant has been the prognosis for this type of disease can be a pretty scary and lonely place,when you don't want to place fear and sadness onto your loved ones. For this I want to thank you on behalf of anyone who has to face this disease now or in the future. You have opened up your heart and allowed this platform to become a safe and comforting place for all .


  3. Hi Kirstie,
    It's been a real light in my world meeting and talking with you and your sister. Thank you for giving me hope, love, and so much support!