CF is not my friend today

We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. 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

On a new journey…

A few months ago I shared about the new CF drug Symdeko (Symdeko post).  After much tossing around of the idea of taking the new drug I finally decided to give it a try.  I started the drug 3 days ago.  It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb.   Continue reading

Spring cleaning of sorts…

I went to see my CF doctor today on national doctor day…haha.  I was there for a sick visit not to wish him a happy day.  I have been coughing more, especially at night which sucks.  I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend.   Continue reading

Impromptu clinic day

Well my 2018 has been shitty so far, literal and figuratively speaking.  Not that you cared to know that.  I got that virus around Christmas weekend and it seems to have found a happy home in my body.  I have been super short of breath just walking and even sitting therefore I have been using my oxygen pretty much 24/7, unless it doesn’t reach where I’m going in the house. Continue reading

Virus hell

I started having viral symptoms on the 22nd)…fevers, body aches, chills, horrendous cough, horrible chest pain from all the coughing, shortness of breath, etc. I finally had enough yesterday and had to go to the ER. There was no CF clinic for me to be seen in this week so ER it was. I tested negative for the flu which I was exposed to. My chest X-ray showed no changes and no pneumonia, all good there. Labs showed that my white count was elevated so my body was definitely fighting something.  I was started on IV Zosyn and oral Levaquin. I didn’t get to my room until 9pm.  I did lung functions while in the ER and my FEV1 was down 10% to 28%.  That’s a decent drop.  This virus or whatever it is a doozy. Continue reading

Clinic appointment today

After 3 weeks of antibiotics, I am not all the way better.  I still have an annoying cough that wakes me at night.  I cough so hard that I see stars and almost see black…not cool.  Today’s appointment went as follows:  Vitals (all good,  O2 was 96 on 2L), My lung function was FEV1 of 38% / 1.08L which is still stable.  Stable is good when it comes to lung functions. Continue reading