Well, I've made it 3 years now! Things have improved over the years but I still continously face challenges. My lungs seem to be stable at least. Had sinus surgery that went well. Got a lot of junk out and cut out some polyps. Cultured a weak bug that I am being treated for with antibiotics. Fungal growth showed up too but still waiting to find out what kind. Blood work came back good! My main problem is my stomach. Seems here and there I get gastroparesis AKA lazy stomach. The stomach just slows down digesting and food builds up in my stomach and causes a lot of pain and nausea. It's usually better by the morning but that means too much pain for too long! Sometimes I'll take laxatives for it that help some. Also, I had a CT done on my stomach that shows some sludge in my gallbladder and that it and my liver are dialated. I recently did a MRI so they can check it out more. Still waiting to hear back on that. Hoping I don't have to have surgery to get my gallbladder taken out! Ugh!
The toughest thing I have had to deal with this year is the passing of my lung transplant friend, Missy. I visited her after my sinus surgery when she was in the hospital and not doing well from rejection. She passed away 2 days later. We were both the same age and she had her transplant not a whole lot longer than me. Very sad and scary :( My heart is still broken from losing her. Being friends with lung transplant people is helpful but sad and heartbreaking at times. I'm glad there is a new med in trials that seems to be helping out a lot for CF sufferers to breathe better and hopefully prolong their lives before needing a transplant. It's a tough life!!! I don't know if I could make it without my family and friends. I try to get out once in a while and have some fun at least. My dogs keep me smiling.
Friday, August 17, 2012
Thursday, March 22, 2012
My lung function has been doing well around 85 - 90% for the last few months!!! I've finally gotten my weight up to 107 but the doc still wants me to put on more weight. I'm doing a little more and driving more but still have my days of no energy. I've been able to make the 2 hour drive by myself to see my friends in Orlando too! I still have some congestion I can hear in my lungs but can't get it coughed up. The docs don't seem to be worried though since my breathing tests are going well. All my other vitals are ok too. My resting heart rate used to me in the 90's and even lower 100's for many years and now at rest it's lower 90's or even as low as upper 80's!!! I still have some sinus issues but they aren't bugging me too much. I know I have polyps that will need to get cut out sometime this year. Haven't had any bronchoscopy this year yet and hopefully won't until my 3 year annual exam! Looking forward to the transplant Bar-B-Q this year. I am sooo thankful to finally be in a place where I can start enjoying my new life!!!!!!!! Thanks to all my supporters and friends and family!!!