Wednesday, April 9, 2014


I've said this before, but I'll say it again. I started this Blog when I was diagnosed with Interstitial Cystitis because I wanted to find a purpose in learning to live with a chronic, incurable and painful disease that is not well understood.

Those of us in the IC community often comment on how we feel so little is known about IC and how much more research we need. I could not agree more. Part of my decision to become involved in volunteering as an ICA Patient Advocate was to help raise awareness, help others become better educated patients and do whatever I could to help others suffering with IC.

Now I find myself in this new health crisis. If I thought I had a disease about which little was known before with IC, let me tell you Idiopathic Bronchiolitis Obliterans is even less understood. There is little to zero information about it to be found to explain it; well at least explain why I have it. There are reasons people can get it. It can be from exposure to certain chemicals and toxic fumes; lung transplant patients get it as part of the rejection process (ironic considering my only option is a transplant); HIV patients can get it; and it can be caused by reactions to certain medications, although the information available on this cause is EXTREMELY limited. And, lastly, we are left with Idiopathic - medical speak for "we just don't know". The only two that have any POSSIBLE bearing on my case are drug induced, which we cannot prove one way or the other or Idiopathic. So my clinical diagnosis is Idiopathic Bronchiolitis Obliterans.

We have no idea how I got this and my attempts at trying to understand it are met at every turn with frustration and lack of information. There are no answers. When I was diagnosed with IC, I did what many of us do and began researching IC and reading all I could find. And realize now how much information there really is out there about IC. And 12 years later, as I have worked to advocate for IC patients, there is so much more information than ever before. Do we need more info? Of course. But when I compare what is available to those suffering with IC to what I'd like to know about my lung disease, I am stunned by the lack of information and understanding.

Doctors need to research the potential link between medications causing this. The doctors have all said there is a chance that's what caused me to get this, but so little research has been done they will never really know. We need to know. If medications presumed safe are responsible, we need to know about it.

Even my own doctor has told me he has spoken to many doctors about my case, asking if they've ever seen anything like this. He has found no information. All the doctors I have consulted admit they are shocked by the speed at which this has progressed. They cannot believe in 3-4 months I went from not having it, to needing a lung transplant to save my life. That's fast!

Friday is the day I expect to hear from the second Transplant Team about whether they will accept me as a transplant candidate. I have already been turned down once. So I wait to see what this team will say. 

In the meantime, I take a ton of medication trying to stabilize me. The side effects are nasty but there is nothing to be done about that. My life or side effects. I'll take my life. 

But I am living in the Big Unknown on so many levels. I think everyone can relate to that. We want answers and when we can't get them it's frustrating. I will never know why this happened; I will never know why I got IC either. 

The Big Unknown; it's not a fun place to live.

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