Tuesday, June 17, 2014


I wrote recently that I had gotten the call that I have officially been listed on the UNOS (United Network for Organ Sharing) waiting list.  Well, a few days later, a letter from Loyola arrived in the mail and I couldn't imagine what it was for.

Of course I opened it quickly and there it was - in writing - really real:

"This letter is to officially inform you that on 6/10/2014 you were placed on the UNOS (United Network for Organ Sharing) lung transplant waiting list."

There was a lot more in the letter but seeing those words, in writing on paper made it so much more REAL! I have been working, fighting, and waiting for so long, to see it in writing made it really sink in. This is really real! I'm on the list!

I can't believe it's true. No one could diagnose me. No one knows why I have this awful disease. The first transplant hospital denied me. But with the help of my doctor, I kept fighting. It's taken so much to get here I almost can't believe it's real. It's surreal. I can't believe this is my life. It's interesting how we adjust. You have a "new normal" and learn to live with that.

I'm going to learn more about what my "Lung Allocation Score" means at the second Lung Transplant Education Class next week. I'll learn more about Accepting the Organ, Medications, and so much more. Then I'll have two different Support Groups to attend. So much to learn. They really put you through your paces.

But for now, it's REALLY REAL! WOW!


Although there have been advances in medical technology and donation, the demand for organ, eye and tissue donation still vastly exceeds the number of donors. For more information, read the summary below or create a detailed data report on the UNOS Web site.

-More than 122,000 men, women and children currently need lifesaving organ transplants.
-Every 10 minutes another name is added to the national organ transplant waiting list.
-An average of 18 people die each day from the lack of available organs for transplant.
-In 2013, there were 14,257 Organ Donors resulting in 28,953 organ transplants.
-In 2013, more than 47,000 corneas were transplanted.
-More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
-According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.
-90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.


  1. I'm happy for you!! I am an organ donor

    1. Thank you! I am honored to know that you are an organ donor. Thank you!

  2. I've know you for a long time and am so sad to hear this news about your lungs...although happy you are on a waiting list...you have helped so many people ...please know there are many that you may have forgot about ...but haven't forgot you...healing prayers being sent Cahtherine...Thank you

    1. Thank you so much! I truly appreciate the prayers!

  3. Catherine, I am so happy for you that you will have brand new lungs one day and will not need to struggle so hard for breath.
    I appreciate you sharing the details of this journey because I also suffer from Bronchiolitis Obliterans and may one day be facing what you are facing today. And I think you are very brave, despite the uncertainty of your situation. God has given you this strength and He will see you through.

  4. I'm new here & confused. Is this blog about IC?

    1. I am an IC patient and started this Blog as an IC Patient Advocate, Volunteer and to help raise awareness and share my journey. However, just 6 months ago I was diagnosed with a VERY RARE Lung Disease and need now need a Lung Transplant. Much of my Blog now revolves around that life threatening disease and I've even written how this new diagnosis has changed they way I write. I hope you will take the time to read through old posts that might be helpful to you and still find some inspiration from my journey to get a lung transplant.