Thursday, July 22, 2010

I am so bad

My life has been very hectic and frustrating. I guess I haven't been blogging because I don't want to sound like I am complaining. I never forget each day how blessed I am to have these beautiful lungs.

The past 5 weeks we have been trying to figure out why my FEV1s and my small airways dropped. They finally hit bottom 2 weeks ago. Last week the were stable and this week my FEV1s increased 5 % and small airways went up 7%.

I did 2 weeks of inhaled Tobi and 3 weeks of levaquin. I had a sinus CT scan. I am in the process of doing a PH probe test today. My chest x-rays still look good and my biopsy at the end of June showed no rejection. I am really frustrated and want an answer. My CT scan was fine. The ENT said I had the clearest sinuses he ever saw for a CFer. My sinuses are wide open.

I am hoping that the sputum culture that I did on Tuesday will give some answers because I don't think I the pH probe will come up with any answers. If nothing shows up with all these tests, B&W Hospital will repeat the bronch and biopsy.

I am down to 5 mg of prednisone. My blood sugars are pretty stable with the help of some long acting and short acting insulin. Not sure if this will be a new way of life or not. Only time will tell.

The good news is I am not experiencing any shortness of breath. No fevers. 100% oxygen. So I sit here scratching my head. I have been spending a lot of time up to camp. Last weekend, I went to OOB and enjoyed the beautiful weather beach side. Sunday, I went to my first Redsox game post transplant. It was very hot but I loved every minute. Felt great to walk up the bleachers with no oxygen, no CF cough and no shortness of breath. I am loving every minute of this even the little bumps along the way.

I have been busy enjoying life while all of this is going on.


Sherri said...

Just because you got new breathers doesn't mean you can never complain again--if so, heaven help us all. :) I know you have a deeper appreciation of "don't sweat the small stuff" than most people, but you've still gotta sweat. When you get a gap between your expectations and your experience, there is bound to be disappointment. Hope they figure out your bump in the road soon with the least amount of discomfort to you. I've been to Fenway once to see a game, it's awesome--Go Sox!

Jamie said...

I find this post quite interesting. I have to remind myself that I traded a disease that I 'understood' for one that I really know nothing about. Curve balls that post transplant can throw at us are all part of learning our 'new disease' which is life after transplant. Thanks for sharing! I think it is healthy to share the good and the bad so we can teach others what we learn :) Thanks!!