Friday, February 28, 2014


Since getting the call on Monday that the Transplant Team at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) was denying me the recommended Lung Transplant I was told I needed, it’s been a very emotional and scary time. 

I saw the doctor at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) again on Wednesday. It was a good meeting with the doctor. He is not giving up on me and has a plan with meds that he wants to put me on in an attempt to STABILIZE me. That's the word of the day "Stabilize"! They want to stop the decline and just get me stabilized for now; that's the biggest concern. I gave him all the reports from Mayo and he and the Mayo doctor were on the same page; he had no disagreement with anything Mayo did.  That said, he believes this medication tweaking will be helpful. So, we're not throwing out the whole Mayo plan, just tweaking. Adding a new Drug, keeping me on most of the rest and just changing dosing a bit. It’s an aggressive plan, medication wise.

The Transplant doctor doesn't know if we can "heal" the damage that's been done yet. His first concern is to stabilize me as I said. He said he will be very satisfied if we can stop the decline, get me stabilized and have no further damage. He said your body can adapt and even though it might be a VERY, VERY "new normal" you'd be surprised what you can live with so he doesn't want me to give up. I did say, well, what if this plan doesn't work. He said,"then I go to Plan B". He has plans; I like that. He's SO kind and caring, yet I can tell he's brilliant. I feel lucky to have been sent there. He wants me to call in a week to report in (unless something bad happens first) and I have another appointment to see him in 4 weeks. He will be doing periodic testing to see how things are going and if we are getting me stabilized.

Being diagnosed with Interstitial Cystitis 12 years ago, learning to live with chronic pain and ending up on disability shook my world. Or so I thought. That changed everything for me and I’ve done all I can to become an activist fighting to raise awareness about such a little known and poorly understood disease. This new crisis has not helped my IC one little bit. My IC is very angry that it has to take a back seat to my lungs. It is screaming at me and my pain is worse than ever. I have no options right now; I must cope and manage it as best I can. 

Now, after this new - and truly rare and mysterious - illness has hit me, I am in shock that this is where I am. How did I get here? We likely will never know. It’s a one in a million chance this would have happened. But it did. Two rare diseases; how did I get so lucky! 

This is a whole new level of shifting my expectations that is really hard. Not being able to breathe - that’s scary. Not being able to get a proper diagnosis, while I continued to get seriously worse - that’s scary. Laying on the floor gasping for air unable to speak for help - that’s scary. Heck this is just plain scary. 

My family is rallying around and surrounding me with their love and support and help and encouragement. I am blessed to have them. Friends are flocking to offer help and support, bringing us meals, offering to drive me to doctor appointments, offering prayers. We are truly blessed with so many wonderful people, family and friends in our lives. I knew this was so, but when you see it in action when you really need it, it just brings tears to your eyes.

So we have a plan. We need it to work. My mantra these days is simple: “STABILIZE”. I keep repeating it to myself, over and over:  “STABILIZE ME; STABILIZE ME; STABILIZE ME.” 

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