Cough cough cough

Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading

3 weeks of IVs complete

I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. Continue reading

3 Weeks of IVs down

Just a short update:  I finished 21 days of IV Aztreonam on Monday.  The Levaquin was not extended which I am grateful for.  It causes me lots of arthritic pain and makes moving around painful in my joints, all over.  As for how I’m feeling now…I’m decent enough.  I still have a dry sounding productive cough.  I will keep an eye/ear on it. Continue reading

CF Clinic day

I managed to get myself up and out the door for 2 doctor appointments.  I had a very hard day yesterday, emotionally and physically.  I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc.  Physical symptoms are non productive cough which sucks.  I can’t sleep for more than an hour at a time it seems.  I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

October CF Clinic update

Today was a good day and a good clinic day at that.  First stop is always the scale, everyones favorite thing.  I have been keeping my weight up which is a good thing medically speaking but not so good in the clothes department.  I have gained 12 pounds since January, 4 of which have been since last month. There is a lot of yoga, sweatpants and other workout gear being worn around here.  Mind you, there is no “working out” going on here except shoving myself into my skinny jeans/non stretchy shorts and “fitted” tank tops. Of course there is the real exercise going on at Physical Therapy for my shoulder, which is getting much better by the way, but that is it.  hahaha Continue reading

9 days down

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. Continue reading

And the verdict is…

…IVs for 2 weeks then reevaluate how I’m feeling to determine if I need to continue to the usual 3 week (21 day) course.  I will be doing the same antibiotic cocktail that I did last time in May/June which was Aztreonam (2g every 8 hours) and Amikacin (25 mg/kg (1250 mg total) every 24 hours). I have managed 3 months without IVs which is possibly the longest in awhile.  I will be doing labs every Monday, Wednesday and Friday to monitor my creatinine (kidney function) and all the other normal stuff. Continue reading