I have not been feeling good for about 3 or so week, maybe more. I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant. We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs. I made the dreaded call after the 4 days of 40mg of prednisone and no improvement. I need something more therefore I had to call with all the I have coming up. I have a busy 5 weeks ahead. Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself. Then I have a girls trip to the Gulf Shores the next week. Then in 5 weeks we have our good friends wedding weekend.
With all that said, I am very aware of my CF today. I am starting yet another round of IV antibiotics at home tonight. I dodged the being “locked up” bullet by a hair. With only 6/7 days before the concert I didn’t want to run the risk of missing it. I know it sounds silly but for us CFers making plans around sick times is what we have to do. I am NOT happy about being on IVs because it means I will be on IVs for my girls beach trip. I just want to cry. I wanted to be free. It’s partially my own fault. I should have extended and changed drugs when I was at the end of my last round that just ended 15 days ago. I could be done with them now. I’m also going on 80mg prednisone for 5 days with a taper down until I am off of it. I just want these lungs of mine to obey and stop rebelling so much.
I know I said I was trying to be more positive in my outlook but I am having a hard time being positive at this moment. I just want to be “healthy,” is that too much to ask for. Obviously it is because my lungs are assholes. Ugh! So angry right now.
I will be on IV Zerbaxa and IV Colistin as well as the prednisone. I will start off with 14 days which will take me a few days into my girls trip. Hopefully all I need is the 14 days but usually it is 21 days. Who knows how it will play out, hopefully in my favor…yeah right. hahaha
With all this getting sick (sicker) stuff I figured what a better time to say that I am still seeking donations to the transplant fund via gofund me. www.gofund.me/shannonigans or PayPal at www.paypal.me/shannonigans Thank you for all you love and support, it means the world to me and my family.
Until next time…