Catching up on CF Appointments

Good gracious! It has been since March.  Not sure how that happened, but I guess I've just been busy with life.

I'll do a quick catch up on my health and CF appointments.  I had an appointment in March and then again in June.  

March was pretty quick and easy with not much to report.  June was a bit more intensive as I had some annual labs as well as my Trikafta study.

Being that I'm vaccinated for COVID, I was able to do my PFTs in clinic.  In a pre-pandemic world, we would do our PFTs in our room, but since not everyone is doing them at clinic, I was able to go to the PFT feels like it's been forever since I went there.  It was so great seeing some of my favorite PFT people!  

FEF 25-75%94%86%89%72%73%

My March PFTs were just a touch lower than they had been, but I blame that on the glorious pollen season here in SC...makes my sinuses go crazy.  June was fantastic which made me and my team happy!

I had LOTS of blood drawn for the Trikafta study, annual labs (like vitamins, liver enzymes, etc) and a glucose test.  I was also due for my bone density scan and had to have a liver scan (for the Trikafta study). Those are short and so easy to do...the longest part is waiting to get taken back to the room.  

A few concerns I addressed with my team were regarding my enzymes and skin - having some big time acne issues.

Enzymes - my insurance only covers Creon so I tried them at the start of the year, but I was having bloating and felt gassy (🙈).  No fun! So, we agreed that we would submit some documentation to insurance about the complications and see if they would approve me going back to Zenpep.  Fortunately for me, they did! Yay! So, I'm back on my Zenpep and the tummy is feeling great!

My skin has been flaring up on/off for a while now.  I've spent some time getting facials this spring to see if we could nail down whats causing the acne.  My esthetician suggested I cut out dairy and gluten and start a probiotic.  It seems that the problem may be internal as all the topical treatments aren't doing much (you name the cream, gel, product - I have tried it).  So, I wanted to talk to my CF team before starting a probiotic and ask if it could be from Trikafta or some other meds.  My CF doctor thinks it could be hormonal and/or stress related.  While I don't "feel" stressed, there definitely is some added stress and worry in my life with my poor girl going through chemo to treat her osteosarcoma.  

So, our plan is that I'll add in a probiotic (which I have) and will have my hormones checked when I go to my next gynecology appointment (beginning of August).  I also have a dermatologist appointment in the beginning of August, so I want her to weigh in on the issue too.  Acne at 38 is NO FUN!  I never experienced this mess as a teenager and I hate it.  I feel so self-conscious with these pimples on my face.  UHHHH!  I guess if acne is my biggest issue, I'm doing OK.

That about sums up my recent CF appointments.  I'm happy to be feeling fantastic, getting plenty of exercise, eating like a champ and enjoying life.  

This summer has been full of time with family and friends, which I'm so grateful for.  I definitely missed seeing my loved ones while we were locked down from COVID.  

We've had some great adventures this summer and I'll be sure to share soon :)


Popular Posts