Saturday, September 6, 2008

Update/Prayer Request

So I am still not feeling good. I got the rest of the results of my culture done last week. As I said in the previous post, the culture did grow pseudomonas. Now, all CF patients have pseudomonas in their sinuses. However, I don't think I have it all the time now since transplant and have only known to actually grow the bacteria once or twice since transplant. I still have "CF" in the sinuses, but I don't think that means that pseudomonas is constantly present in the sinuses. The sensitivity results showed that the antibiotic I am most sensitive to right now (meaning the one that would work the best) is actually the study drug that I am currently doing. We decided to hold off on any more antibiotics right now and finish this last week of the study drug. Upon clinic next week, I have a feeling I will start on another oral abx, if all goes ok and nothing serious is going on. It's a little frustrating because the study drug has definitely not done any good, and knowing that this is the one that should work, is a little upsetting. We can't seem to knock whatever this is out, and it is getting extremely aggravating. I woke up this morning with a chest full of junk and more sinus issues. I'm trying to go to school and work, but recently things just keep interfering.

There is a theory that this study drug may be causing some of my issues right now, such as nausea and wheezing. However, I'm not completely sure and will not know until I stop the drug next week. This time of year is also not the best time for me, as between September and January, I get sick the most. While I'm not going to stop or give up on the study, it is right now a pain sometimes to do when it doesn't help and it is a 3 time a day drug. This study drug is supposed to go publicly on the market within the next month or two and has already been proven to work really well and according to our local CF research team, not many people have experienced side effects from it. If it was in a phase 1 or phase 2 trial, I would think differently.

I have a friend of mine who is a CF and post-transplant patient, and is here locally. She is not too far out of her transplant and has been constantly experiencing complications. She has a very strong faith in our Lord, and I know HE will get her through these hard times. She was recently just admitted with pneumonia, and is a little concerned, since this is a new issue for her. Having experienced pneumonia MANY times in my post-transplant 4 years, I know how she feels and how unpredictable having pneumonia is. It can be mild and treated with minimal time spent in the hospital, or it can go the opposite directions, requiring more treatment and possibly ventilation. So please keep her in your prayers. You can visit her blog at:

UPDATE as of 10:00 P.M.: My friend mentioned above does not have pneumonia and was sent home from the hospital today after taking an xray and everything being clear!! Praise God!


Emily said...

Hey girl~ I'm so sorry to hear you are not feeling well. I am praying for you. I'm sorry we missed each other at clinic. If you need anything please let me know! Hang in there, I know God is walking with you through this. I love this verse in Psalms and I will be praying this for you.

Praise the Lord, O my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagles.
Ps. 103:2-5