Tuesday, July 6, 2010

An update from behind bars *cough* I mean the "hospital"

Going to make this quick since I don't have a whole lot to report just yet.

I was admitted last night (around 7:30pm) and after a one night with very little sleep I've had an x-ray and a CT done. The CT was supposed to be done with contrast, but the resident doc didn't order it right (although I spent the entire night hooked up to iv fluids to flush my kidneys and given oral Mucomyst to "protect them"). So, after a CT without contrast one of my cf docs came in and talked with me about his thoughts so far.
He said my CT shows no signs of any serious infections going on, but there is inflammation in my small airways, which is a sign of chronic rejection. My stenosis (narrowing in my right main airway) is closed down to a tiny 3mm when they say it should be 2 inches, so I'm going to be scheduled either tomorrow or Thursday morning for a bronch with dilation to open that airway so I can get a little relief for the time being. After my bronch he wants to talk with either my transplant center or a doctor here at UCD that used to work along with the lung transplant team when they used to have one (long story short, the lung transplant surgeon turned out to be nuts, so they had to shut down their tx center years ago). This doctor my cf doc is referring to (a pulmonary specialist) is the man who was in charge of originally working me up for transplant over 6 years ago, so I have met him and look forward to hearing his thoughts.
I asked my cf doc, besides the obvious low immune system when being treated for rejection, what the cons would be to just start treating me NOW like I have rejection. He said it's the bad impact on my kidneys that is holding him back. My kidneys aren't great, like most people this far out from transplant, my kidneys are sensitive to medication and very weak when pushed. I personally feel that since it's pretty likely that most transplant people would eventually need a kidney transplant down the road at some point, why not treat the rejection now and deal with the kidney troubles later, when I can breathe again. What shocked me was that my cf doc said that once my pfts drop lower, I would be a great candidate for a 2nd lung transplant. I don't want to wait for that to happen; I don't want that to be my goal here. I'm very much NOT okay with allowing myself to keep declining so I can get another lung transplant. There is no question that if I had to make that decision again, I would do it in a heartbeat, but I do not want to go down that road unless absolutely necessary. I'm pretty sure I'm thinking too much into what he casually said, but I was just shocked to hear him say that was an option.
As far as the stent goes, it's lodged itself below where it initially was placed in order to hold open the stenosis I have, so it's causing a lot of irritation and possibly could be the root to the side pain I've been having for so long. He said he wants to look into removing it for good, or quite possibly replacing it, but because it's been there so long it's got a lot of scar tissue grown on and around it, basically making it a part of my body and making it difficult to remove without complication. He would have to most likely have it done by a surgeon in the OR, and the risks could be anywhere from bleeding to having my lung rip when removing it, causing them to have to do an emergency lung-ectomy (removal of that entire right lung). Needless to say, my eyes got huge when he said that. Ummm I think I'll pass, but thanks anyway! lol!
So for now, I wait until I get my bronch then I wait to hear what my doctor has discussed with the other doctors and then hopefully a plan. I need a plan. I'm to the point where I'm feeling like I have my old cf lungs back and it's both frustrating and scary.

I know I said this would be short, sorry! I'll update again after I know more. Thanks to everyone for their well wishes, prayers, and kind words. I really appreciate all the support I get from you all.

1 comment:

Cassandra said...

Love you Leah, hang in there you're in my thoughts and prayers. <3 Cassy

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