Thursday, January 20, 2011

Bronch and Barium Swallow

SO we were at the hospital by 6am today. Got my bronch done and they had me do a breathing test (PFT) and it was down 5% from a week ago! Not happy about that. Maybe it had something to do with doing it in the bronch chair rather than a regular one. I HOPE! There was white junk in my lungs which was probably fro the sinus drainage I had before my sinus surgery. It will take some tie before any cultures come back on it.
After that they had me do the Barium Swallow test again since I had been complaining about my swallowing again. Turns out for some reason, the area that had been loosened in my esophagus, shrunk back and the barium was having a hard time getting down into my stomach. That means I have to get another EGD with dilation. Ugh! Don't understand why it would go back to where it was after it was ok for the last few months. My body is always a mystery. I always end up with problems the docs haven't seen before. I am a learning experience to them. I should be getting paid! Haha

Monday, January 17, 2011

More tests

Well, I saw my lung doctor and did my breathing test. Good news is that my numbers are good! 90% and 85% for 2 of the measurements. The smaller airways are always lower and some other number that I'm not sure what it's for. Weight is down a little. Sinuses doing good. Problem now is my chest pain has been worse the last few weeks and having a hard time AGAIN with getting food down easily. Getting that feeling that it's having a hard time getting through my throat into my belly. Finally the doctor agreed that it's time to figure out why I'm still having this pain. Plan is to get another barium swallow test, Bronchoscopy, CT of my chest and throat where the abscess was to see if there's anything there..maybe scar tissue or something. He's got me a bit worried b/c there is a possibility they might have to cut me open. I told him that if they have to open me back up on my transplant incisions and put in chest tubes, to go ahead and take my lungs out and give them to someone else b/c I can't handle that again...I give up! He started poking me in the belly saying loudy "WHAT, WHAT, WHAT". Then as he was leaving he said they probably won't have to do that. But just that there is a possibility freaks me out! Oh, also he said that he thinks it probably my stomach that's giving me the pain b/c the stomach is at the bottom of your ribcage. Feels like my lungs but since my breathign is so good, he thinks it's not them. Hopefully we will find out without too many tests and I REALLY hope it won't require another thoracotomy or anything too painful. I've been in pain for a year and half .....I've had enough!

Thursday, January 13, 2011

Sinus surgery

Surgery went pretty well. Still I was told there was a lot of bleeding. Doctor said that bleed really easy everywhere in my sinuses. However, it did not bleed as long or bad as the last time. A few days and it was done. They did have to stuff 6 packings up in my nose/sinus area to soak up the blood and help it clot. Felt like my brain was being pulled out when they pulled those out! Can't believe they could fit all that up there! Went home after a few hours of recovery.
Went in earlier this week for my post-op visit and he took a look and said things look much better. Still wants me to continue the sinus rinse and try to get in some sinus nebulized antibiotic treatments, which I hate b/c it takes like 30 minutes!
Tomorrow, Friday, I am going in for a breathing test (PFT) for research study and also b/c one of my coordinators said that the doc wants to see what my numbers are before doing on bronch next week. This frustrates me b/c we had already decided I needed a clean out 2 times the last month but decided to wait till after my sinus surgery. Not happy that I have to wake up early and drive all the way to Tampa for something I don't feel is needed. Wonder if the doctor forgot about our talk last time. I was upset to also hear from my ENT that my lung doctor had never even said anything to my ENT about how bad my sinuses had gotten before the surgery especially since he sees the guy a lot. I think they are getting overwhelmed there and heard they are looking for another doc to bring on board.
On a sad note, another lung transplant friend ( not CF) is in ICU. He's older so sometimes they get other complications b/c their bodies aren't as strong as us young CF peeps. He was having trouble and they thought it could be rejection at first and wasn't, tested and there was no infection. There were a bunch of cells, white stuff, in his lungs and that's why they thought rejection. I think he started feeling better but then the PICC line they put in his arm ended up giving him blood clots. Now he has one in his lung and leg I believe. They have him on blood thinners and placed a filter in his blood stream. I visited him after my post-op visit and he seemed to be hanging in there but of course wasn't happy to be in ICU which I can totally related to. He'd been there 2 weeks already and they said probably one more week for the clots to clear. He's on a lot of oxygen b/c the clot in his lung is making it hard to function and breathe. Unfortunetly, I heard today that he had gotten worse and they decided to put him on the VENT and keep him under sedation. Ugh! I feel his pain and fear! It really messes with you when you are on the vent and wake up days later wondering what's going on. He's such a nice guy and so is his wife. Breaks me up to see them or anyone in this kind of situation.