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…

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

(Pre) Transplant Appointments

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. 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