Threw in the towel

Hey all!  It’s been a little while since I have updated.  I have not been feeling well for a few weeks.  I have been coughing more, especially at night.  I went for lung functions and to give a sputum sample today.  My lung function is down just a tad.  My FEV1 was .95L/33%, down from 35%.  That’s the amount of air that I can push out in the first second after taking in a big deep breath.  Which basically means I’m using 33% of my lung capacity. Continue reading

Sick yet again!

Hello friends and family!  Seems like I was just here updating you all.  Well I am not feeling good again after only 2.5 weeks off of IVs.  I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March.  Along with achy and my chest is sore from all the coughing.  Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days.  It hurts so bad to cough.  I’ve been trying to brace myself when I cough but that doesn’t even help.  It’s like something is stabbing me every time. Continue reading

Pre transplant check up

I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.

The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha

Until next time…

Clinic Update

It was a good clinic visit today.  It’s always good when they say that you look the best they have seen you look in awhile.  I don’t know if I can attribute that to the Symdeko or just feeling decent.  I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking.  It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading

Hospital life

I am all settled in my room. I have had my first dose of Colistin which is IV push every 12 hours.  IV push is when the medicine is in a syringe that is pushed straight into my port line over 3-5 minutes and not in a bag through the IV pump. I tolerated it well and didn’t need any Benadryl which is good. I am on IV fluids 24/7 to keep my system flushed, hydrated and to keep my kidneys working good.  The doctor wants to do a broad spectrum antibiotic to cover MRSA in case I culture it in my new sputum culture. I have never cultured it before so I don’t think I will now but this is me who we are talking about so you never know.  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