Sunday, May 30, 2010

Surgery on Tuesday

Well, the plan is to go in on Tues June 1st and get this stomach J-tube taken out! Oh man I can't wait to get it out but at the same time, I'm not looking forward to being in the hsopital again and having yet another surgery! Ugh! I've had this thing in for almost a year! Got it even before TX. It gave me a lot of pain and doing tube feedings is no fun. Having to roll around the stupid poll that my bag of liquid feedings was hanging onto everywhere I went. I couldn't go anywhere while I was on that. At least while I was home, we got it down to doing the feedings only at night. It's still a pain to get around and having to flush it, clean it, fill up the bag every night, setting the pump up, picking up the poll where it wouldn't roll, having to go to the bathroom a lot, having constant diarhea from it, the uncoftableness with the button sticking out and making sure you don't do somethign to hurt it, along with dealing with IV meds too, and pain, ugh! Things have gotten better thoug. No IV meds, haven't been tube feeding for about 2 months now and keeping my weight on despite still not being able to swallow some things without pain. This is one more step in the right direction. My lung function has been pretty good but down a little from a week ago. I have a bronch due on the 15th so that should bring my numbers up again. I'll try to post soon after surgery along with some pics. Till then, I'm lovinng my new pup so much and she's keeping me smiling.

Wednesday, May 19, 2010

It's all good....

Had my appt. today and things are looking better for me FINALLY! My weight has held steady off of the tube feedings so we decided to get the sucker taken out soon. Just gotta call back about what day works best for us. I always worry about the abscess coming back or needing the tube feedings if they ever end up deciding to stretch out this awful stomach wrap. I was told I wouldn't need it and that they've never had to put another one back in after taking one out. I had to remind them that I am not like most people and all the unusual unexpected stuff happens with me, haha. They all laughed and agreed, hahaha. It's not really funny but I gotta joke around about it b/c otherwise I'd cry about it, haha. I'm not feeling like the abscess has come back so maybe the monster is gone FINALLY! Ugh! What a nightmare!
Now for even better PFT's were up even after a month past my bronch. I just hope they keep up! I blew FVC 88% and FEV1 83%!!!! My records so far! My friend Mary took me to clinic this time so I'm thinking she's good luck and I might try to bring her along more often, hahaha. It was also the shortest time I have ever waited at clinic. Everything flew by and only really had to wait to see Dr.H. As far as the brown stuff in my lungs, well, nothing came back on the cultures, which I think is also a first! I can't believe I don't have some flaring big bad bug for a change! I'm thinking the brown stuff was some old blood that got stuck b/c when I coughed some up after the bronch, it looked like it might be that. It definately didn't seem like fluid. Seemed like it was mixed a little with mucous and was all gooey and super sticky. I coughed it up 2 times and that's been it. So everything seems to be going well. I was even lucky enough to see my Transplant Surgeon, Dr. Sheffiled, as he walked by the room I was in at clinic. So, I was lucky enough to talk to him and he definately remembers me b/c I'm a repeat customer, haha.
I'm planning on making it to my first Lung Transplant Get Together on Sat. They are having a BBQ in Tarpoon Springs. Sadly we will all be missing one b/c about 2 weeks ago we lost our Lung Transplant/CF girl, Samantha. She was only 19. She missed her Mom that had passed a year earlier and wanted to be with her and now she is and no longer suffering. But there will be plenty of celebration for all those who have made it with new lungs and enjoying every day.
Also, we adopted an 8 month old Lab mix puppy from a shelter b/c I needed something more to help me mentally and I'd been wanting a dog I could play with. Our other dog is 8 years old and she just sleeps all the time and rarely ever plays. Now that I can breathe, I want one the do stuff with. Our new puppy, named Ripley, has been wonderful and brought lots of love and laughter into my life. She loves the doggy park and the doggy beach. She's pretty well trained and learns pretty quickly. I'll try to get some pics up soon.