Wednesday, February 26, 2014
WHERE DO WE GO FROM HERE?
I Blogged last week about meeting with the Lung Transplant Doctor to discuss my lung disease and viability for a transplant. He said I was a very complex case and would need to meet with his entire team to discuss whether or not I would be a candidate for transplant and he would call me after that meeting.
Monday of this week the call came. The doctor and his team had met and discussed my case and I will not be getting a transplant. They do not feel I am a good candidate because of my complex medical history and so will not recommend me for a transplant.
What to do with this news? I cried because when doctors tell you that your lungs are in such bad shape you should be on the transplant list, you kind of figure it's pretty bad or they wouldn't suggest it. Now, it's not like I was all excited about the possibility of actually having a transplant! I too could not see how I could get through the process given the many challenges of my medical condition and allergies to medications. But when you are told this is what you "should" be doing and then are told: but we we're not going to give it to you. Well, it's hard to hear and pretty scary.
My Mother held me in her arms while I cried. The doctor isn't giving up on me. That's good news. He's a transplant doctor and I would not have been surprised one little bit if, since they won't do a transplant, he just washed his hands of me. He's a surgeon; he operates. Why would he still be involved in my care? But he told me he would still try to help and I have an appointment today to consult with him again about other options for treating this disease. He says he has suggestions and ideas.
I don't know what to expect. I know it will involve medication(s). I don't know how bad this is especially given I cannot have a transplant. I have questions. So, we're heading out shortly for the 2 hour drive back to the at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) to listen to what the doctor has to say and see: Where Do We Go From Here.
Bronchiolitis Obliterans with Air Trapping