So for starters, I haven't been back in the hospital (WOO!) There were several close calls but I had access to all the meds they give me at the hospital & turned my room into my own version of the hospital. That being said.. I haven't been doing too well. In the past few weeks alone I have been through 5 rounds of different steroids. Each round just adding more side effects and no relief. My lung function has slowly been getting lower despite all efforts. I didn't have many options left for a "next step." If my lung function continued to drop, I was looking at admissions, high-dose infusions, and just trying to find possible answers. If my lung function stayed around the same, we would talk about trying a lower-dose infusion of a medication I've had before, outpatient. In my mind, these were both lose - lose situations. I didn't want to be admitted & struggle even more but I also was nervous for the outpatient infusion...
Ok- so the reason I was nervous about being outpatient for this infusion is because I received this medication for over a year, 3 days in a row, monthly. I was getting high doses and this made me very sick. I was hitting every side effect listed, (not the severe ones thank goodness) but after a while it got to be too much and I was spending more time severely sick than not! Although it was a great deal from my lung perspective, the risks were just greater than the benefit. So we stopped and managed with different meds.
Back on subject.. after yet another round of steroids, I managed to stay at the same levels. Again not necessarily a good thing, because my body isn't responding to the meds it should, but also good thing that I'm not getting worse. So since I had an appointment in the Infusion Clinic to get my regular injections, my pulmonologist wanted me to stop by and get some tests done. (FeNO and PFT) To refresh your memory, FeNO measures the amount of inflammation and PFT measures airflow. So today my FeNO test came back at the lowest it has ever been. While normally this would be something to celebrate, with endless steroids and increased meds, it wasn't an "accurate" reading, but was curious to what it would show anyways. 3 weeks ago when I did this test, my number was 75, today it was 25 (which 25 & under is considered normal.) So when I go back in about a month, we will see what my level is then. My PFT was confusing. I've been reacting to almost anything, very easily, and have a big variability in my numbers, and there shouldn't be much of a difference at all. So I will just keep track of my function every day with my machine, here at home, and hopefully will start getting steady, increasing numbers again.
So after seeing the results from the testing, we decided to go ahead and pursue the idea of doing a low-dose infusion, outpatient. Basically, I didn't like any of the options I had but I guess that was the "lesser of the two evils." So today, I did just one dose and that's all that I will do until I see my doctor in about a month to talk about whether or not we continue/increase etc.. At this point, I know the side effects will come (as many have already started showing) but I'm praying that they do not get as intense as they did in the past. It's horrible having to pick which part of the body that suffers because one medication for one illness flares up the others, and trying to treat/save the others will only worsen another. Here's too hoping my body cooperates!
"Sometimes when things are falling apart, they may actually be falling into place."