We had a clinic visit this morning and it went pretty well. We decided awhile back to ask to see a new doctor, as things were just not working out with the other doctor. I am SO glad that we did! This appointment went so much better and I feel like we got more information in the 30 minutes we spent with this doc than we have in the years we have seen the other.
Gess's weight was up a bit--which is great. It is still not as high as he wants it to be, but at least it is going in the right direction. His FEV1% was the same as it has been for awhile--so he has a new baseline. We aren't happy with that (it is 43%), but it is what it is.
He has been consistently doing his treatments once a day and it going to try to move to doing them twice a day. He struggles with that move because of the time it takes and also because of how they make him feel. But, he is coming around!
We also talked to the doctor about the lung bleeding. It was nice to hear that this doctor will really go to bat for Gess with interventional radiology if necessary. He also said that he could send Gess to another hospital if necessary (the back story on this is that Gess has had 8 or 9 embolizations and the IR folks at the current hospital do not want to do any more on him. The last one was a huge fight to get them to do it.). It was nice to hear that this doctor will be an advocate for him.
This doc also stressed the importance of exercise, which is great to hear. I get tired of being the only one telling Gess that :)
So, we both left appointment feeling pretty good. (Oh, and this doctor is going to order the Ambry genetic testing so Gess can find out his second mutation).
After CF clinic we went to the Pain Management clinic. That was also an encouraging appointment. The doctor there is going to try to help find something non-IV that can help with the pain when it comes. Gess has so many listed "allergies" but it isn't listed on what that actually means. So on Friday we are going to the pain clinic, Gess is going to take a dose of morphine and then we will wait there to see if he has a reaction of any type. They want to do this while he is healthy, and this gives us a controlled setting so that he is already there if something goes wrong. The doctor is also going to try out a couple of other medications (non-narcatic) that will hopefully help. The CF doctor also was optimistic about the pain and said that just because he has this pain with his exacerbations, it doesn't mean that he will end up with chronic pain. So I think that was a relief.
So...all in all it was a productive and reassuring visit today!