When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%.
Last night I finally got started after home health delivered 4 different and wrong huber needles for my port. Luckily, I had some extras left over from last time that were correct. I was able to access my port so I could get started and didn’t have to wait on them to send the correct size the next day (today). I am on Amikacin every 24 hours (IV eclipse ball) and Cefapime every 8 hours (IV push). I was on Amikacin in January and I tolerated it well. I was a little nervous because these strong drugs like to make my kidneys rebel and have my creatinine elevate. I’m having labs drawn twice a week so I feel better that they are paying close attention to my creatinine. If it raises, depending on how much, then it could mean an inpatient stay for fluids to flush out my kidneys. I’m not the best at drinking water or much of anything throughout the day so I’m trying to be better, especially while on IVs. Oh and no ibuprofen which sucks because my arms/shoulders are so sore. We still don’t know the reason for that. I think the antibiotic levaquin may have something to do with it because it can cause tendon/ligament pain. I just got off a round of it orally. All I know is, that it hurts and makes it hard to do much of anything. I can’t reach behind my back. I did see my primary doc about it and she is going to try to get a MRI approved to look at it better. We shall see.
I saw my psych doctor today and we did some genetic drug testing (Genesight). Now let me explain the best way I know how. I swabbed my cheeks and they sent it off to be read. It is supposed to give us a list of antidepressants that should work for me based on how my body would process it. Or something like that. Seems weird but I’m willing to try anything to help. So we kept me on the Trintellix for the time being. I had to call for some help with the withdrawal from effexor. It was brutal so she put me on a low dose of Prozac to help which it did help. We are waiting to hear these test results to see what we try next. It is so hard with these medicines because they aren’t a quick fix/return in investment. You have to give it time to get in your system and see if you feel any different. I know what it’s like to have nothing working so I’m ready for something to work. Depression and anxiety are real.
I see CF clinic on the 13th as of right now (if I do 14 days of IVs) as well as my psych again at the end of September.
Until next time…