Wednesday, March 5, 2014


I'm starting to feel sorry for my IC. It's being ignored a lot lately since I got so sick with this lung disease. It was all consuming and took all I had to cope with having IC and several of the typical associated conditions. I'm on Disability because of it. I write this Blog because of IC. I try to raise awareness about IC from my comfy chair by using social media. I have raised money for IC research. I am a devoted Patient Advocate for those suffering with IC.

But since that fateful day in November, when I woke up coughing and wheezing and suddenly short of breath, things have taken a turn. I've Blogged about this new lung disease and will likely continue to do so as I find my way through this new medical journey. But my IC is taking a back seat to actually breathing. Coughing so hard for so long has not only cracked 4 ribs, but I can tell you that my bladder is NOT happy with me one little bit. What can I do? I can give myself instillations at home for now when I have the energy to mix up a cocktail. That's not often and it's so hard to expend the physical energy to do what I have gotten down to a science and can almost do blindfolded. Yet, I can't put the energy into doing it as often as I want. So my bladder pays the price. It's playing second fiddle to my lungs. And that's something I'm going to have to learn to deal with it seems, at least for now.

I saw my Pulmonologist yesterday. Last week I Blogged that the word of the day was "Stabilize". They did another Pulmonary Function Test in the office yesterday to see where I am since I began this new drug treatment plan. I've lost count of how many of these I've had now. But it is the test that tells the tale and as of yesterday, the doctor said - the test shows you are STABLE! I was not worse and while I was not better, I was where they wanted me - stable! It's been so important to stop the rapid decline and at the moment we have. The doctor also told me that I "looked" better and that I was talking better. OK, I'll take it. Stable was what we wanted and stable is what we got. Time to focus on that. It's hard, but I'm working on it. The doctor was very glad to be able to say those words to me, I think, and he wanted me to take them to heart.

Still working on not thinking worst case scenario. Need to work on that with my therapist. I need to see more than ONE report that says I am stable. To me, one report does not a trend make. But I am not the doctor and he is glad to see I am no worse. I should be too.

In the meantime, my poor IC bladder is screaming at me. Who even knows if some of it is because of all these new medications I am on. I will do what I can to manage my IC but for now, trying to get this Bronchiolitis Obliterans to stop in its tracks comes first. It isn't easy. I'm trying.

This isn't cheap either! As of March 1st I'm already in the Medicare Donut Hole! 8 weeks into the new year and I've already hit it! Yikes! I just found out that since I hit the Donut Hole one of the new meds will now cost me $2100 for one month! Just ONE of the drugs! More stress. I know many can relate as they have no insurance, so I know I'm not alone in this. But it's rough no matter who you are. I'm taking so many meds I made a check list so I remember to take what and when. That's just one drug's cost now that I've hit the Donut Hole. Two of my other IC meds came to $100 the other day; I was paying a $3 copay and now $100! This will all add up VERY, VERY fast. So much to think about and try to figure out. 

For now, I got the word the doctors all wanted - STABLE! STABLE is good. I'm trying to focus on that. 

1 comment:

  1. Hi Catherine.
    Just stumbled onto your posts, and I have at least two of the same diagnosis that you have- BO and IC.
    I am 62 yrs old, and not eligible for Medicare so I enrolled in ObamaCare, which means that I can have an affordable health care plan that cannot deny coverage for preexisting conditions. The maximum out of pocket that I will have to pay per year is $1500.00 and that includes all medical and pharmacy costs. I have a POC so don't have to drag a portable O2 tank. Thank you for sharing all the details of your experience. I will be praying for you.