Thursday, March 13, 2014


Waiting and Watching. That seems to be what we do. It's been 4 months - 120 days - since this lung disease struck out of nowhere. Bronchiolitis Obliterans. What the heck is that I want to know. I've been to Mayo. I'm working with the University of Chicago top Lung Transplant doctor, even though I've been denied for a transplant. It's been explained; I've seen the scans and read about it. But it is not well understood and little is understood about why a person gets it. How did I get here is all I keep asking myself.

It's this ongoing process of prescribing medication and come back in a few weeks and let's see how you are doing. We did that for 3 months and all that happened was that we missed what was going on and my lungs deteriorated to a life threatening state. I can't have a lung transplant so we are left to try to treat this with medications. Watch and wait. Right about now I kind of feel like watching and waiting is for the birds. 

Calls back and forth to all the doctors about symptoms that are getting worse as we step down one medication and start increasing another. OK, re-up that medication and see how you do. Am I better? I guess the coughing is better again now that we've re-upped the one medication. I am told to stay the course. Watch & wait.

Today I ask my Mom to take a look and confirm what I am seeing in the mirror - my lips are turning blue, even with oxygen 24/7. It's not severe, but it's definitely there and they are not the nice pink they were even a week ago. Call the doctor and report this issue and he wants to see me tomorrow. 

I have a lot to deal with and it's all scary. I don't want to overreact to things but I am not sitting around waiting for something bad to happen; if I have a question I'm calling the doctor. They are ever patient and kind and responsive and that helps. 

When I was diagnosed with IC it was a difficult time. I have had IC for 12 years and I've been on disability because of it for 4 years now. This was challenging enough, or so I thought. But this new lung disease has really thrown me. I have an appointment with my psychologist tomorrow and that's important. I have a lot to talk about and it will be good for me. Then we have to race over to the Pulmonologist's office since I called and reported the blue lips, he wants me to come see him tomorrow. So it will be a long and difficult day: dragging portable oxygen with me; getting a wheel chair at the hospital because I can't possibly walk from where we park the car all the way to the doctor's office, even with oxygen. 

Yesterday I discover that one of the medications I'm on was prescribed incorrectly and I don't have enough pills based on what the doctor instructed me to take. More phone calls back and forth to make sure I'm doing it right. Yes, I am and they'll call in more meds so I can take the right dosing. It's a good thing I'm paying attention and asked the doctor to write it down for me.

Waiting & Watching. I'm working on it. I need to work on using my Positive Affirmations. I found a new one that I like that I need to use:
I can heal
I am healing
I am getting healthier
I am getting better
My health is improving 
My lungs are getting better 
I am healthy
I am a healthy person
I am well

So I wait and we watch for any sign that things are getting better, or even that they are not worse. 


  1. Okay, sweet Catherine, you one upped us and now I once again feel blessed to know that I have IC and it does not have me! My body may be decrepit but I am not on oxygen and my lips arent getting blue! I will hold you up in prayer and pray for your journey and that you get to feeling so much better! Keep us posted, please!

    1. THANK YOU SO MUCH! I am glad for all the prayers and well wishes and will keep Blogging about this new journey.