Sunday, February 8, 2015


Since coming down with this mysterious lung disease began, I have been unable to go see my IC Doctor. It was just too much; dragging along all that oxygen and it took 3 people to get me there. I couldn't sit in the waiting room not knowing if I would run out of oxygen even though we'd brought all I had. So I just had to stop going for treatment. Doing my at home instillations became too difficult. I literally didn't have the strength to mix them up then administer them to myself. I managed to continue to self-catheterize throughout this lung journey, but it wasn't easy.

Ever since this whole thing began, my IC has not been happy with me. But I just had to learn to live with it. My lungs were taking control of everything and trying to care for my IC became impossible. I learned to just suck it up and deal with it as best I could. 

Well, it's 3 months post transplant and my Transplant Doctor has given me the OK to start getting out and about (mostly to Rehab). So the first thing I did was make an appointment to go see my IC Doctor! What a welcome return to care that was! The entire office staff was giving me hugs and told me how great it was to see me. When the doctor came into the exam room, he gave me a huge hug! It was enough to bring tears to my eyes. He spent 45 minutes with me and wanted the entire transplant story, every detail, along with how it has impacted my IC. Has any or all of my transplant medication helped or hurt my IC? He even wanted to see my incision and check out my not yet healed wound. Then he checked my InterStim, did an exam and gave me my first instillation in over a year! AHHHHH!!! I know they don't work for everyone but they are my life saver and to not have one in over a year has been rough. It was like a gift from heaven when that instillation went in and my bladder has felt better these past few days. 

He is going to write to my Transplant Doctor and give her the full update on my IC situation, much detail regarding my status so they understand better what is going on with me, how the instillations work for me etc. I am so blessed with so many wonderful doctors. 

A Return to my IC Doctor was truly a blessing and I am so grateful to have him caring for me. I am encouraged that I am thinking I may be ready to start giving myself my instillations again at home. 

This week is one year since I came down with this mysterious lung disease and my Blog morphed into the journey through Bronchiolitis Obliterans, being told to get my affairs in order, but finally being blessed to received the Gift of Life and get my new lung. That journey is not over. There are bumps in the road we are treating right now. It's still scary and I am still not completely healed even though I am going to Rehab and told to start going out more. 

And so I am. I went shopping for new walking shoes over the weekend and I have an appointment this week to get my hair cut. I am making progress for sure. If we can just get the kidneys back on track and stop this rejection episode, I will feel much better.

But I have made much progress and I am grateful that I could finally make a Return to My IC Doctor! 


  1. Wow you have had to put up with so much. I followed your ic story and just dropped in by chance. I see you now have had your transplant. Please may you continue to improve and lead your life as you wish. From a fellow ic sufferer. Xx