Last week was my 18 month assessment. I have been living and breathing and fighting with these new pink, disease free, lungs for a year and a half now.
The week started off well.
My pft's were stable at 62%.
My six minute walk was stable at 615 meters.
My CT scan showed no changes.
My blood work came back very good.
My kidneys are working well.
Liver is in check.
My tac level (my anti rejection drugs) was a little low. It has been in the past. It sometimes bounces around the place the level. All in all everything checked out. I had even gained a little weight (love weight, or winter weight? Still debating...jury's out on that one)
I did my bronchoscopy Tuesday morning at 8am.
Thursday evening I had a jewellery show.
Thursday night, I got a phone call from my coordinator. My bronchoscopy results were in. I have acute rejection. (enter scary duh duh duh music...at least that's what happened in my head when I heard those words)
My new pretty little lungs were not happy with something I was doing...so they decided to start to reject a little. Just when I thought we were getting along so well.
It was not the nicest news to receive, the night of a jewellery show, 5 days before I leave for Vancouver for 4 months, and on a rainy awful night, when I stepped outside, missed the step, and went down in to the gravel in the mud, rain and cold...mustard sweatre and grey dress pants a mess: check.
Picture a very distraught girl.
What does this all mean?
Well I guess they do not treat grade 1 rejection. There are four levels. I have level one.
They upped my tac mg (anti rejection drug) so that the blood work will become in the normal level.
They are thinking and hoping this will eradicate the rejection. Please pray and hope that it does.
It is probably one of the scariest things in the world to hear your lungs are rejecting...no matter what level it is.
These awesome new little lungs that I worked SO hard to get, and SO hard to be where I am now are rejecting... sigh...a little discouraging. New Lungs don't you know, you and me are in this for life? You are suppose to cooperate from here on out! Please and thank you.
The good news is, I do not have a fever, my home spirometer has not changed, and my exercise tolerance is still a ++.
I have developed a tightness in my chest and a heavyness, almost like inflammation...maybe it's all in my head though? I can't decide, since on friday I received another voice mail, announcing that I had pseudomonas in my lungs (an icky bacteria...nobody really wants lurking around), another bronchoscopy result was in. Oh lovely, cause that's EXACTLY what I wanted to hear.
Perhaps my little mind is working over time, thinking how the heck am I still going to get to Vancouver, live a 'normal life' and deal with these two things thrown at me?
The brain is a POWERFUL tool. I think it's tricking me in to thinking something is wrong with my chest, because EVERYTHING ELSE is absolutely normal. Worry wart over here.
Tomorrow I go in for blood, and to see the doctor.
I am planning on keeping an eye on everything when I am in Vancouver with the lung team out there in Van city, since with grade 1 it seems you don't really do anything, just monitor. I will get another bronchoscopy done in May when I am home.
As my friend Lindsay said when I exclaimed "but is this normal to get rejection this far out!!! (panic filled voice)"
"Yes hattie, that's why they do bronchoscopes for the first two years, because rejection is common in the first couple years, hence why they keep up with the bronchs"
Thanks Lindsay for being the calming soothing voice of wisdom.
OF course I txted all my other TX post and pre friends to make sure I was going to be okay. You know who you are. Thanks for listening patiently and guiding me with encouraging words. Sometimes a cystic has to freak out every once in awhile.
Anyways I'll let you know how tomorrow goes...If all goes well. I'll be writing to you from my new home in Vancouver!
Goodnight sweet sweet blogosphere. Thanks for listening.
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