Friday, July 22, 2011

Finally, some hope.

Good afternoon all to all my blog readers!

I'm very sorry I have not updated my blog until now. I didn't have anything new to share (until now), so I didn't really know what to write for you all. I don't want to bore you, so I waited until I had something worth while to share.

Since I last updated, I did a 4 week course of antibiotics (4 weeks oral/ Levaquin, and 3 weeks IV/ Cefapime ). I was feeling pretty junky in my lungs and running fevers while waking up with my sheets drenched from cold sweats, so I had to give in and get some antibiotics on board to help the infections that were cookin'. The IV antibiotic was ordered for me to do 22hrs per day, giving me 2 hours a day free to shower and run errands. After about a week on the IV antibiotic I was feeling pretty sick from the med itself on top of feeling bad from being sick. I finished up the antibiotic still feeling pretty crummy, so I talked to my doctor and decided that it was probably time to get bronched and open up the stenosis I have in hopes to open it up enough to allow me to cough junk up so I can get rid of the infection easier.

I went in on Thursday the 14th for my bronch; the day after a set of photopheresis treatments. My doctor went in expecting to see my airways red and inflamed, with either 1 or both airways stenotic (narrow). What he saw was my airways almost back to the pale color they are supposed to be! Both main airways were stenotic, so he opened them back up via balloon dilation and took some pictures to show me once I woke up.

I'm attaching both a set of photos that were taken back in February of this year, before I started photopheresis treatments, and a set of photos that were taken last week. Note the very red, irritated airways in the first set. This started to appear on my bronchs around the time that my PFTs began to decline a few years ago. My CF doctors assumed the inflammation and redness is due to chronic rejection and we really didn't think it would get back to it's normal pale color.

The second set of pictures are from the bronch I had a week ago. Note how the redness is almost gone! The photos were taken about 10 weeks after the start of photopheresis treatments there at U.C. Davis. We're excited and very hopeful that this is a result of the photopheresis treatments working! Maybe, just maybe, the treatments are stopping the progression of rejection! I have not done PFTs in a while, so I don't know if I have any improvement with that yet, but my lungs sure look better! You'll see that the airways are still stenotic in the first few pictures, before they dilated, then much more open (and even a little more red) after they dilated and messed with them.

So that's my good news! I'm extremely hopeful that these treatments are actually working. I do not feel better, but we really didn't expect for me to feel better with the treatments. We were just hoping I wouldn't get worse, which from the look of my airways, may be the case!

All of you who are considering photopheresis,
Like all medical treatments, it's not a sure thing. It does not work for everyone, but we chose this treatment over taking medication that would knock my immune system out and I'm very lucky that we may be seeing positive results from it. I feel so grateful that I found a doctor who would not give up on me and decided to give photo a try on my rejection. If it were up to my transplant center I would be waiting on the transplant list right now for new lungs. A huge thanks to my post transplant friends (especially Christy) for showing me all the options there are for people in chronic rejection and not allowing me to give up on these lungs. I know I may be jumping the gun a little, but I'm thinking positive! ;)

Leah's GoFundMe Transplant Fundraising Page