Almost free

B”H I finally stopped bleeding and was able to gradually resume all my treatments without incident. I was scheduled to finish my IV antibiotics on Friday, but we ended up stopping a day early because the ringing in my ears got slightly worse. The tinnitus originally started back in January following a long course of Tobramycin, and gradually improved over several months, but never faded completely. We knew doing another round of Tobramycin was risky, but we also really needed an antibiotic that might make a difference. Fortunately the ringing is still mild and mostly unobtrusive, and hopefully will improve again now that I have stopped the Tobramycin.

The plan now is to finish the last of my IV fluids on Friday and see how I do at my follow up appointment on Wednesday. I had the option of continuing just the IV fluids, but after 2 continuous months of IV infusions I needed a break. Aside from Prednisone interfering with my sleep schedule, I never sleep well while on IV antibiotics since I have to run infusions every 8 hours. So 2 full months of IV antibiotics also means 2 full months of poor sleep, even after my symptoms improved and I got out of the hospital. I am very much looking forward to NOT waking up to any alarms!

I’ve been extremely fatigued this week, but I don’t know if it’s from lack of sleep or if it’s because we’re slowly decreasing the Prednisone and I’m not quite as hopped up on steroids. My appetite has also slipped without the Prednisone munchies, but unfortunately I’m still stuck with uncomfortable Prednisone bloat. If only Prednisone would let me choose my side effects! We’re currently in the process of getting me started on a monthly injection for severe asthma, which we hope will control my asthma-like symptoms enough to allow me to get off the steroids completely for the first time in 2 years. Hopefully soon I can finally say goodbye to Prednisone side effects!

The big question is what will my pulmonary function numbers look like on Wednesday after a few days without IV infusions. Here’s hoping that I managed to regain a few more percentage points, and that a few days of sleep will do me a world of good!