Not Settling

The last time I blogged was when I was sick a couple weekends ago.  Well I called that Monday to see what the doctor wanted to do.  Since I was feeling better we decided that it would be fine to go to my originally scheduled appointment.  She still wanted to see an x-ray though.  On the 3rd I got one done locally so they could see it.  A nice thing about this too is we won't have to do it when we go for our appointment.  Anything to make the wait a little less for Joe.

The place I went was the same place I got a lot of my tests for evaluation done at. While I was there I asked for a copy of my x-ray from back then.  I wanted to compare x-rays from before and after the transplant.  I could have done this earlier by getting an x-ray from Children’s and then using one from Presbyterian, but I wanted to compare two that were taken from the same place.  You can see how damaged my lungs are back in August of 2011.  That was two years before my transplant however.  They obviously got much worse.  I am just using these to show the contrast of all the damage compared to these beautiful lungs I have now.

Also this week I donated most of my CF stuff to a fellow CFer.  I gave away all my Boosts, Ensures, and pulmozyme.  I am gaining weight so easily now that I don’t need the supplements and I will never need pulmozyme again.  I did not want to throw anything out.  All of this stuff is so expensive and I knew it could go to someone who really needed it.  I hate throwing away anything that someone else might be able to use.  Just because I don’t need something anymore doesn’t mean that someone else might not get use out of it.

Yesterday Jason and I went to NYC for my appointment.  We flew there with Joe.  We obviously got to skip the x-ray and we went straight for PFT’s.   My weight is 93 pounds and my FEV1 is down to 80.  Even though it was a very small decrease, Jason did not like it at all.    When we went to my appointment my doctor said not to worry.  It is not a significant loss, but we will keep an eye on it though.  I asked her how long after transplant does she typically see an increase in FEV1.  She told me that normally it is four to six months, but there are some people that will surprise her and eight months out they have an increase in FEV1.  I really hope that is me.  I am really happy with FEV1 in the 80’s, but I am not settling.   I would love to see them higher.