FROM IC TO TRANSPLANT: A BRAND NEW JOURNEY!

If you follow my Blog, you know I am an Interstitial Cystitis Patient, ICA Volunteer, Fundraiser, Tweeter, IC Blogger & Passionate Patient Advocate for millions suffering with IC! When I was diagnosed I felt I had a choice about how to live my life with my new diagnosis. Did my life change dramatically? Yes it did. But I have worked to be a voice for awareness, education and a resource for others struggling to learn to live with IC. I still felt productive and this Blog has been part of my journey.

Then out of nowhere, when I think I have figured out how to live with chronic illness, yet another blow comes and tries to take me down! Idiopathic Bronchiolitis Obliterans! What the heck! 

Bronchiolitis Obliterans is a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are compressed and narrowed by fibrosis (scar tissue) and/or inflammation. Bronchiolitis means inflammation of the bronchioles and obliterans refers to the fact that the inflammation or fibrosis of the bronchioles partially or completely obliterates the airways.

This came out of nowhere. I was cruising along, coping with my IC, Blogging, Tweeting, using social media to raise #ICAwareness and - BAM! - the next day I am laid low by something going on in my lungs!

It has been a long and difficult journey to unlock the mystery of what has happened to me and what is wrong including 9 days in the hospital here at home in December; multiple consultations with many specialists and even a trip to the Mayo Clinic. Finally at Mayo the mystery was unlocked and I am told what is wrong with my lungs. Idiopathic Bronchiolitis Obliterans. They have no idea what caused this. That's hard to hear. I should be used to it. We have no idea why any of us has IC either. Another week in the hospital just last week to try to stabilize me. 

But the lung disease is getting worse and very rapidly. I must have a lung transplant; that is the only option left. Urgency to seek out an opportunity for a lung transplant is paramount. One hospital has already denied me for a transplant. That was hard to hear. But yesterday I got the call from the second hospital and, thanks to my doctor's persistence and hard work, the doctor will see me next week and at least I get to be evaluated to see if they will take me on for transplant. A glimmer of hope shines in the distance. 

There are many obstacles in this path in order to get new lungs. Each a hurdle I must get over in order to make it to the next hurdle. One hurdle at a time. It's not easy. It's been very emotional and scary. I have struggled to dig deep to find the strength I need to get over these hurdles and not let the fear overtake me. I am working on it. 

This is a new and very different journey I am on now than the one I was on just 4 months ago. Along the winding road of IC, the road took a turn. A very sharp turn and I ran smack into a mountain standing in my way that I must begin to climb. As a metaphor, I think I've been just staring at the mountain for quite some time. Trying to figure out if I can climb it. Do I want to climb it. If I do try to climb it, how do I approach it?

This is the fight of my life yet I feel my battle with IC has taught me so much about how to fight. So I will try to draw on that strength. I want a fighting chance. Just give me a fighting chance. It's not a fair fight and I feel like I'm being ganged up on. But I have the support of so many family and friends who are trying to pull all those ganging up on me off me and help me fight back. I need their help. 

So next week I get to meet with the Transplant Doctor who will evaluate me and present my case to his team and see if they will take me on and give me the fighting chance. That glimmer that is so far in the distance, yet I can see it still. It's there; far in the distance, but it's there.

From IC to Transplant - this is indeed a brand new journey. A far different one than I was on before. And certainly not one I ever expected to have to take. But I am on it nonetheless. Reaching out into the darkness toward that glimmer in the distance. Just give me a chance.