It's been a long week with many tests, lots of meds, not so great news and working to understand how I got here and what is happening to me. It's been a roller coaster of emotions as I learn what we know about my new lung condition. I've written a few Blogs about it, but the clinical diagnosis is "Idiopathic Bronchiolitis Obliterans". Idiopathic is an adjective used primarily in medicine meaning "a disease or condition the cause of which is not known or that arises spontaneously". That certainly appears to be the case with me as the doctors cannot find a cause and this came out of nowhere and is kicking my butt and putting me in the fight of my life.
The doctors are doing all they can to try to stop the progression of the disease but so far it's been a losing battle. Things seem to just keep getting worse and that's what landed me back in the hospital on Monday, with my symptoms worse again as they attempt to step me down from the high dose of steroids I am on. Every time we make an attempt to do that, my symptoms increase and things go downhill. Frustration.
No one enjoys being in the hospital, but it's where I needed to be this week. I have had so much help and so many doctors coming to talk to me to see how they can try to help. But the bottom line is, I need a lung transplant. That's where we are. New lungs, or these old ones won't keep working. I've been denied for a transplant by one of the only two Chicago area hospitals that does transplants already, so my doctor is working to get me evaluated by the other hospital. We will see what they say. Meetings with many doctors to discuss if I can even be managed through the process since I have so many problems with anesthesia and pain meds. The Palliative Care doctor talked to me at length and he has ideas. It might be possible. So can I get accepted for a transplant by hospital #2? Ah that's the question. We shall see.
My family. What would I do without them? I am so blessed to have the most loving and supportive family. They are wrapping me in love and lifting me up as I face this battle ahead. I am so thankful for them.
I am in a great hospital. Every single doctor, nurse, staff person - every single person I have had any interaction with has been beyond kind and caring. It's comforting. I need to dig deep and rally my resources that I have used to fight my IC and use all I have to fight this new battle. I'm working on it.
This is the biggest challenge I have ever faced. I will need all the support I can get. My family, friends and online team are sending me their well wishes. I can feel it. Thank you one and all! I will take it all in and hold it with me as I work hard to fight this latest health challenge.