Nine days of IVs down…?? more days to go.  When the port is accessed you are supposed to change the needle weekly.  It’s not the end of the world if it doesn’t get changed on the exact day.  It is also good to give your skin a break from the tegaderm that covers your needle.  The major perk is being able to take a REAL shower which means not having to sponge bathe and wash my hair over the side of the tub.  I deaccessed my port this afternoon after my 2pm dose.  I was due to change my needle on Friday but I wasn’t motivated to do it.  Then Saturday I slept most of the day.  I just finished with my real shower and I’m now doing a treatment.  When I’m finished with my treatment I’ll reaccess my port in time to do my next dose.

I have been very worn out and sleeping quite a bit.  My body has been achy and sore which I’m not a fan of.  I have also been having headaches which I’m pretty sure are from the antibiotics.  Unfortunately I can’t take ibuprofen while I’m on these IVs, well while taking Amikacin because it is hard on the kidneys.  Ibuprofen is processed/filtered through the kidneys so I can’t add to the work load of my kidneys.  Tylenol doesn’t do much of anything for me but I still try it hoping one of these times it will miraculously work.  haha  With that said, my labs have all been good and within the right levels.

I have had some sputum with streaks of blood over the last few days.  It’s not a big deal but I just need to keep an eye on it because it can become a big deal quickly.

I have another busy week with labs Monday, Wednesday and Friday, PT for my should twice and a few other doctor appointments.

Another lovely perk to having CF is having bowel problems.  I have been feeling very “full,” to the point that I get out of breath easy.  It is like my bowels are pushing on my lungs making it harder to breathe.  I have been drinking Miralax to help.  It is hard to eat when you feel full, like there is no more room in there.  Antibiotics usually have the opposite effect on the bowels.

Hopefully I feel better and more humanlike soon.  We will re-evaluate on Thursday to see if I am better and can be done with IVs or if I need to continue another week.

Until next time…