CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • 21 days of IVs done

    I did 2 weeks of IV Zosyn and was still not back to baseline. My lung functions had dropped from 35% at the beginning go IVs to 31% at the 2 week mark. We decided to do another week hoping to get over the hump. IV Zosyn is a bit daunting at every 6 hours but I manage. It wears me out to say the least. I sleep at every chance I get. I am able to “bump” my doses an hour either way which helps me get a little more sleep at one time. I’ve mastered it over the last few decades. At the end of 21 days/3 weeks my lung functions hadn’t come back up to where they were when I started IVs. I was at 32% at the end of IVs. With all that said, I am feeling better for the most part. I am however coughing a little more and coughing more up. I say better out than in! So it’s a good thing.

    We had talked about putting me inpatient for IV colistin which was the one that messes with my kidneys and sent me into acute kidney failure a few years ago. That being said that is the reason they want me in the hospital for it because they would want labs everyday and be at the ready for extra IV fluids if needed. We decided against that for now. I may have to revisit that in the future when I get sick the next time (have a CF exacerbation). Yes, I say WHEN because it’s inevitable…it’s life with CF. I have another chest x-ray on February 16th to see if the pneumonia is gone. Hoping it is. If it’s not we will have to revisit IVs again I’m sure.

    I barely made it through January emotionally speaking. This year my mom’s passing anniversary was harder for some reason. I found myself in bed more. Being sick on top of it didn’t not help either. I hope I’m coming out the other side of it now. My birthday is Monday which I always celebrate gladly unlike others. haha. I love getting older! Every birthday is a great milestone in my life. Especially since I am now past the “life expectancy” for CFers. I am always happy I made it another year. I might post on my birthday, I might not. Just depends on how nostalgic I am feeling…haha.

    Until next time…

  • IVs for the new year

    February 2020 was the last time I was on IVs. I would like to think it is Trikafta making the difference. I usually do IVs every 3-5 months so that’s a plus of Trikafta. It makes me attempt to take the bad (weight gain) with the good. Oh I did my lung functions with my home spirometer. My best fev1 was 35%. So basically holding steady which is good. They had dropped a little over the last few weeks but managed to be back to my baseline today of course. Haha

    With that said I have been fighting something for a few weeks. I’ve had an increased cough, coughing more stuff up (which is less since Trikafta), more short of breath, been using my oxygen at night to help, wheezy and fatigue. I made the call for IVs. I have a telemed appointment on Thursday with my CF clinic. So I called to see if they wanted to see me or would prescribe IVs without. Thanks to Covid I was about to get things going without being seen but still have me appointment on Thursday to check in. My port is accessed, labs are drawn and a chest X-ray is done. Busy day at the hospital. Now I wait for the home health to deliver my IV supplies. I will be on Zosyn every 6 hours for 2 weeks. Here’s to no sleep!

    Mentally I’ve been in a funk. We are coming up on the anniversary of my moms passing, Jan 19. It’s always a tough time reliving it. We are coming up on 5 years. So my depression has been creeping up. I’m trying my best. Yes I’m still seeing a counselor and taking my antidepressants but that’s not a cure all. There are still bad days. I take what I get.

    Until next time…