Cooeee

[Guest guest]

Hello, I'm back I've only just got home and I'm still a little uncomfortable but at least I wasn't left in a room with a strange man and no knickers Tbh, I found it very painful which I was told is rare and considering I have quite a high pain threshold quite surprising.

The results are that I have very mild PAH, possibly too low to bother medicating yet, but it is there and they will keep an eye on me by regular echo's and probably another angio if it deteriorates further.

I have also agreed to be in a study. Some of the docs think that a particular breathing test might detect PAH in fibrosis patients. What they have done is taken this breathing test, which is very easy and involves breathing quickly and deeply in and out of a deflated bladder for 20 seconds. You do this 3 times for them to get an accurate reading. They told me that according to the breathing test I was at the top end of normal, borderline PAH. They then look at these results up against the results of the angio, which as I said showed slight PAH. They are hoping that if the results are consistant (and apparently they're looking good) they can use this to help reduce the need for angio's in patients with lung fibrosis. The machine that they use looks like a small computor monitor with a flat basketball attached to a hose. This size means that it could be something that the docs have and just test you along with your other pft's. It's considerably quicker than an echo. They are currently in the first phase of the study, which means they need 30 people. If this is successful they can go for funding to increase the amount of people in the trial.

Also, the hospital I was at this week has specialists in lung fibrosis. My doc, while lovely, is a cystic fibrosis specialist, not a pulmonary fibrosis specialist. They are going to transfer me to there. They think a different treatment might be more beneficial to me.

I have a weeks worth of posts to catch up on now so I'll check those out later

Love Ze xx