Friday, July 18, 2014


This was supposed to be a Blog about my IC illness, and it was until the beginning of this year. My journey through living with life altering IC has taken me places I didn't think I could go but we do what we must and try to move forward. Learning to live with chronic pain and illness isn't easy, but I was doing it. Even though I had to stop working because of my IC, I felt like I was handling it; doing what I needed to manage my disease and try to help others.

Well, clearly this Blog has morphed into the story of my lung disease. Being diagnosed with a rare disease that no one could figure out was life altering. My IC friends must be feeling neglected, but when something like this happens, the road takes a sharp turn and you can crash and burn, or you can follow the road and see where it leads.

When I was finally diagnosed with Bronchiolitis Obliterans and told I needed a Lung Transplant to survive I was beyond shocked! And my writing ground to a halt. This Blog was never intended to be about self-pity but a sharing of my journey, encouragement, and support.

I wanted to keep writing, but even doing this takes energy I rarely have. Deconditioning and side effects from medications make my hands tremble and shake which makes it difficult; medication side effects also now make it difficult to concentrate and have affected my short term memory some. It literally takes energy to sit up with my computer and actually write a Blog. Plus, it has been a journey to process this medical news and figure out how to handle it.

Three stays in the hospital and a trip to Mayo also interfered with posting. Then trying to get accepted for a Lung Transplant has been like preparing to climb Mt. Everest. The testing and demands made of Transplant Candidates is truly monumental. One hospital turned me down. I was running out of options. Finally being accepted by Loyola and getting that letter that says I am Officially listed in the UNOS system and given my Lung Allocation Score gave me hope.

Based on my most recent Pulmonary Function Test last Friday, my condition is continuing to worsen, but the good news is that increased my Lung Allocation Score which pushes me up the system and hopefully will mean I get my transplant sooner rather than later.

But I wait. I go to Rehab and keep my doctor appointments, which are key to making sure your UNOS score stays Active. I have a wonderful family that is supporting me and going out of their way to help me. I have wonderful friends who support me. All of you help me in ways big and small. I am fighting, but there are ups and downs. Medication side effects, being permanently attached to oxygen. It truly "takes a village" to get me anywhere. It's been a learning experience but we've kind of figured it out and are getting "systems" in place for all the different things I must deal with.

Calling the Fire Department, Police Department, Electric Company to let them know there is a person living in the house on 24/7 oxygen is recommended so in an emergency they know where to go first to help that person. Who knew?

I could go on. But this Blog that started out to Support my friends in the IC Community is now mostly focused on my battle to get a Lung Transplant. My IC isn't happy about this either which is another challenge I'm trying to deal with.

Yes, this Blog has had a Change of Tune I'd say.  I still want to share my journey and will do so whenever I can manage.

Most days, I feel a bit like Wile E. Coyote who never sees it coming!

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