CF Happens

I woke up Tuesday morning coughing much more than normal. My cough at least was productive sounding and not tight sounding (asthma inflammation type cough). I woke up feeling like utter crap Wednesday morning. I canceled the appointment I had that morning and slept until noon. I just so happened to already have an appointment with CF clinic today, so it was good timing.

My lung functions were 29% and 30%. So they are stable compared to the 31% I had at my last appointment, 6 or so weeks ago. With my increased cough, increase in sputum production (I should say, actually having any production at all for once), fatigue and over all blah feeling we decided to go ahead and start home IVs. I will be doing IV Zosyn every 6 hours for 14 days.

We are NOT doing any prednisone right now. The goal is to stay off of prednisone for as long as possible but especially until after my appointment with pre transplant clinic in 5.5 weeks. They wanted me off prednisone if at all possible. I made it this far, by golly I’m pushing through! Yes, I am VERY wheezy but it’s “manageable.” It’s the tightness combined with the wheezy that makes it very hard to breathe. I’m NOT crazy tight at the moment. *fingers crossed*

Next order of business…the amount of arthritis pain I’ve been having. I’ve just been dealing with it for quite a while now but it’s gotten pretty intolerable. So I finally caved and asked for something to help. The mornings are the worst. My hands and fingers are very stiff and I’m unable to make a fist. I have trouble gripping things, opening water bottles, typing on my phone, etc. They hurt like HELL!!! I am going to try meloxicam (an arthritis oral med) to see if it helps give me any relief. I’m also being referred to a rheumatologist for further evaluation.

Since I was getting my normal labs drawn that I always do when I start IVs, they added in inflammation markers to see where they are. One stick in each hand and nine tubes later, we got all the blood needed. For those wondering…my port was not accessed to get labs drawn from it. Also for those wondering…the only place I have left for blood drawls are my hands or some random places they find when they have to get creative. The bends of my arms are ALL scar tissue from years and years of being stuck. If you stick a blood drawl needle in that area on either arm, the person “trying to” drawl blood will feel the pop of scar tissue as will I and I basically can hear it. It’s so much fun. NOT!

If you didn’t know, there is such a thing as CF related arthritis. CF is the disease that just keeps on giving. Just add it to the list of issues I have. I’m just lucky like that. CF is not only a lung disease. It involves many aspects of the body.

Here’s to hoping that I start feeling better soon.

Until next time…