Wednesday, January 27, 2010

Bronchoscopy results

I just realized I hadn't posted my bronch results on my blog. They were negative for infection or rejection, which is good, but still doesn't rule out chronic rejection. I continue to have some wheezing with exercise which indicates something going on in my small airways, but other than that, I feel great. My pulmonologist wants me back in 4 weeks to repeat my pulmonary function tests again and see if my numbers have come back up. If not, he is thinking of starting me on a medication called Rituximab, hoping that it would reduce my high antibody count and therefore stabilize any rejection I might have going on. There are many other medications out there to try, so if one doesn't work, we can try another.

I was able to meet one of my CF friends on Monday. We knew each other through the internet, but had never met in person. Her name is Amy, and she had her double lung transplant at Duke 4 months after me. It was so exciting to meet her!!! We hope to meet her hubby Roger soon!

I started my online Photoshop class last week. I haven't learned a whole lot yet, but I know that it is going to be very helpful. I'm hoping to really enhance my photos with it. I know it takes years to master Photoshop though, and my old brain isn't what it used to be. LOL.

Jason and Casey are doing well. Jason is adjusting to first shift with his job! It's nice to have him home for dinner and home at night. Casey gets report cards today. She's pretty sure she has all A's. I'm so proud of her for working so hard. She is thinking now that she might want to work for the FBI instead of becoming a doctor. I don't know about you, but when I was her age, I changed my mind about my future every week or so. I never dreamed at that age that I would ever want to become a nurse. Casey's step-mom has a sister and brother-in-law who work for the FBI, so if she becomes serious about this, she has people who can tell her all about how it is in REAL life, instead of how it's portrayed on TV. :)

I'll leave you with some random photos. I hope all of you are doing well and having a great winter....


Amy said...

MAGGIE!!!!!! errr I mean Mia :)

So stinkin cute!

I hope Casey does the FBI! I always wanted to do something like that but I couldn't pass any kind of exercise tests lol

Katey said...

As the photos!! You are becoming a pro!!

I'm glad the bronch showed no infection or rejection...and praying it rules out chronic rejection as well. I know my docs have told me that they can't completely confirm I have chronic rejection without doing an open/surgical lung biopsy, but are 99% sure based on other symptoms and "things" that have shown up on bronchs and xrays.

I'm guessing you are talking about your lungs right...not kidneys? I know I need to read your blog....i'm way behind sorry. Let me know about the chronic rejection...I hope you get some answers and can nip that wheezing, etc. in the bud. I've been through a lot of chronic rejection treatments, meds, if you ever have questions...ask away!!!

And that is so cool about the FBI!!!

Marjolein said...

Rituximab is bad! At least my first lot was, my bloodpressure dropped so quickly and so low that we had to stop it and I got the meds to counteract it. We started it up again 30 minutes later, let it go in slower and upped it slowly.

Hope you won't need it.
But I can say that my next lots were much better.

Love your pictures, FBI sounds nice too, though for me I think I'd always go for the doctor :-)

OceanDesert said...

LOVE the photos!!!! That Casey is so darn gorgeous!!!... like her momma!

The mysterious CR.... I love reading my medical records, it's like not one doc really wants to write it down cuz they don't really know how to diagnose it! ha! I look at it as more opportunity to have things go in my favor... diagnosis schmogosis. How can the Rituximab be right? I didn't think the Campath was bad but others said it was 'horrible'... I know you'll do great with it... and that is what I'll be picturing!

Hugs, HUGS, hugs!

OceanDesert said...

Shheesssh... I meant, 'how bad can the Rituximab be, right?'

Anonymous said...

LOVE THE PHOTOS! I am looking forward to feeling better and then taking my trip to see you. Miss and LY! Give Casey a kiss for me and tell Jason, whud up! going to sleep..later

Aimee said...

Love the photos!
When I was Casey's age I was always changing my mind about what I wanted to do. Heck I didn't really decide until last year and sometimes I still wonder! haha

Genevieve said...

I miss you!