Phone Call

Well the long awaited phone call from Cleveland has been received. I was wondering if they were ever going to review my case seeing as how I was up there a month ago! My transplant coordinator called me on Friday though to tell me that as long as the surgeon got his notes in that my case would be discussed today and she would call me by noon to let me know either way what the decision was. (or if the surgeon didn't get his notes in on time which would push me back to next Monday...I figured it would be my luck that this would be what would happen) ;)

So she called to tell me that the surgeons (3 of them) met to discuss my case this morning. She said that they "deferred" me for now. Which means they didn't say no, but they didn't say yes either. She said that there were a few things that led to this decision. One of them being that I am still "too well" for transplant. Sounds really stupid,  right? I understand where they are coming from...but to think about being sicker then what I am now and in desperate need of the transplant scares me to death. Anyway, this should be seen as a good thing.

Next she said that there are some things that need to be taken care of first before they will discuss my case again. I need to be seen by someone up there in rheumatology. They know how I've been struggling back here and pretty much not getting anywhere with anyone; so they want me to be seen by someone up there that CAN ACTUALLY HELP ME!!! I say amen! to that! :) They need to figure out why I am having the pain I am having. They are attributing it to my RA (rheumatoid arthritis) because I can't feel pain in my lungs because there are no nerve endings.

She said something else that needs taken care of is that I need to see someone in Infectious Disease. (yay me...yet ANOTHER specialist to add to the list!) Apparently I have hypogammaglobulinemia, which in English means that my body is not producing enough antibodies. This is likely a direct cause of my RA...and/or my lung disease. I've had the pneumonia shot twice now and both times they have not "taken" so I am still at high risk for getting pneumonia. The reason they are not taking is because of this hypogamma...in a "well" person, they can have the shot and expect it to last 5 years. I can't even get the shot to take in my system...soooo...bad news for trying to get transplanted because it means my body will be fighting harder against my new lungs and I would likely reject them right away. (This is my understanding anyway.) So I will see someone there in Infectious Disease and they will come up with a game plan as to what will happen next. Looking on the Internet, I've seen treatment for this being IV transfusions every 3-4 weeks.

Sooooo, the plan is to go back in 6-8 weeks. (mid-late January) and visit with all of the above PLUS my pulmonologist and who knows who else. And then they will go over my case again. My coordinator told me to call right away if I start to feel worse or if I think I need to be seen sooner. I have to try and stay away from IV narcotics...which is fine by me...that morphine I had the last time did nothing for me really. Sure, it took the pain away, but made me feel really sick and really loopy. I had really weird dreams, didn't feel rested at all, and in the end I still had pain the next day! I told Doug I didn't want morphine ever again!! I hope vicodin isn't on that list because it has been one of my very best friend's here lately... :)

Too bad there isn't a magic pill that would make this all just go away. I feel like my tiny caterpillar body is just standing still on that branch not moving forward at all. I'll eventually make it to that leaf and build my cocoon...just not sure when. Timing is everything.