CF Clinic Day

Today has been an interesting day to say the least. On my drive to the hospital I rubbed my eye and my contact popped out, yes while driving! Thankfully I had rewetting drops in my purse so I was able to get it back in my eye (while stopped) but part of it had torn from the sides being stuck together but it hasn’t bothered me since I put it back in. While holding my contact on my finger I missed my exit because I was all flustered haha. I managed to get turned around and get to where I needed to go. I then get to the hospital and the regular parking garage is closed and it directed me to another parking garage. I had no idea where I was going. I parked and the elevator was not operational yet so I had to take the stairs. All I could think of was the way back is going to really suck. I walked all the way into the hospital/medical building huffing and puffing but I made it. I hate change!

I had to get checked in for lung functions (PFTs) and then went up to the second floor. I had to have a rapid covid test which was negative then was called back for my lung functions. While waiting on the covid results my nurse took all my vitals. My lung functions were actually up which surprised me. My FEV1 was 41%/1.13L. Last time they were 35%. Maybe it was all the huffing puffing I did walking in. haha. Then I went over to clinic and checked in.

First up was the nurse checking me into my room. Since all my vitals were already taken she just verified info. Next up was the pharmacist to go over all my medications and to make sure I didn’t have any questions or need any refills. Next up was the doctor. I complained about the weight gain from Trikafta (new CF drug I’ve been on for about 2.5 years), more to come later on that. He listened to me which I was wheezy and my throat was red which it’s been sore for a few days and one lymph node on my right is a little swollen. We decided to do a week of Augmentin and 20mg of Prednisone for a week as well. I will be stopping Fosamax which is once a week for osteoporosis since I have improved to osteopenia. He said there’s not much research of people being on it for longer than 5 years considering most people that take it are over 65 with brittle bones from age. So he wants me to stop it and we will recheck my bone density next year when I am due and see where I’m at. I’m still continuing my vitamin D and calcium as usual. Now onto my inhaled meds. I am increasing my inhaled Pulmicort (Budesonide) to 2 ampules twice a day from one twice a day. We are trying another inhaled med, Brovana, to see if it will help with my wheezing and tight chest. So if you are keeping track that means longer treatment times with more meds. I’m still doing Pulmozyme once a day as usual.

Next up was dietary. We discussed my weight gain from Trikafta. I will start using a calorie counting app to help me keep track of calories. Since I have CF and am not a normal healthy person it’s a bit different. I need 2800 calories to maintain my weight because they taken into count my lung function. With that said I will be trying to do 1500-1800 calories and we hope it will help me lose weight. Exercising is part of this. We finally have a treadmill again so I can walk once again. If you know me I hate exercising but it’s what I have to do. The extra weight doesn’t help my breathing so I’m hoping I can do this. It’s not going to be easy for me.

Next up was social work. Just talking the usual mental health stuff. I have to do a questionnaire that helps assess how I’m doing. My anxiety has been more since I started Trikafta so we are keeping an eye on that with my counseling and psych meds.

All in all not too bad of an appointment and got some issues worked out with my wheezing and sore throat and a game plan with my weight. Some may wonder why I’m so open about my life with CF. I talk about these issues to let others know they are not alone in this fight of CF and you normal healthy people are also not alone in the fight against weight gain/loss and mental health issues. I keep fighting everyday. Oh yeah my walk back to the car was brutal. Those stairs were not my friend at all. I now know that I should have parked on the second level and it goes right into where my clinic is. Yes I have a handicapped placard but it didn’t help me today, unfortunately. I will be seen in 3 months for a regular check up.

Until next time…

One thought on “CF Clinic Day

  1. This is first update I have seen in a long time, don’t know why I haven’t been getting them but sure glad I am now. You had quite a day, thats why you are “Super Woman” in my eyes. You are a trooper, I hope your plan of action goes well
    Love your spirit

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