CF Appointment 6.8.22 Updates and Pupdates

It's been busy around here - I turned 39!!  What?!  Only 1 year away from 40...and I'm looking forward to that awesome milestone, but I'm definitely freaked out by the number a bit.  I just have to remember that getting older is a blessing.

I also had a CF appointment on my birthday week, and the conclusion of the Trikafta study I've been participating in.  I started the day getting a liver scan, then bloodwork - 12 vials 😖.  Thankfully I did't have to fast for the oral glucose test since I had one in March for a different CF study.  Yay!  Next on the list was PFTs - I actually got to do them in the PFT lab which is always great cause I get to see some of my favorite people and talk bulldogs with another bulldog mom. 

Back in clinic, I met with my CF doctor who had a student with her; my GI doctor, who kindly reminded me that I'm now 1 year away from a colonoscopy; and my respiratory therapist that was happy with my lung functions.  I wasn't able to produce sputum so I was gagged to get a sample (my least favorite thing of all).  It was a pretty quick and efficient...thankfully, I'm feeling well and didn't need anything.

The day concluded with a sweat test, which is part of the Trikafta study.  

Here's the results of my PFTs:

	6/8/22	6/16/21	6/17/20	6/17/19
FVC	96%	102%	108%	102%
FEV1	92%	99%	102%	93%
25-75%	93%	94%	89%	72%

Look back they look slightly down but are still great numbers!  I think I get a bit lazy doing my PFTs too and may not reflect as good as they can be.

Before leaving, my team shared with me a couple more opportunities.  First, was to continue in the Trikafta study for 2 more years...it would be 2 appointments which would include bloodwork, liver scan and sweat test.  I happily agreed.  I'm all about keeping a close watch on everything - and hopefully should I encounter a bad side effect, it would get caught early.  Secondly, there is another study which involves answering questions via an app daily.  I figured why not, since I'm on my phone everyday...haha.  I've been doing it about 3 weeks now, and its super easy.  

Nothing else to report over here.  Like I said, I feel great and am busy living and loving life!

Sweat test

Fun times

My pups went to the oncologist they next week on 6/13.  I was anxiously awaiting that appointment.  The weekend before I noticed Stella had started coughing some which made me a bit nervous.  Then the morning of the appointment, Sarge decided for the first time in his entire life that he didn't want to eat.  So, that totally freaked me out and I was so happy we were going to the vet that day.

Stella's x-rays showed that her lung nodule did not shrink on the chemo pills but in fact got bigger and now there is another good size one.  UHHHH!  So, we have stopped the chemo treatments are are just letting her live life.  Of course, she is still on her gabapentin and carprofen to help with arthritis and the wear and tear on her remaining 3 legs.  She is in great spirits and you can see the fight in her eyes.  She's gonna be around a while yet.  The vet didn't give us a time estimate, but wants to x-ray her again in July to see the progression.  

Sarge it turns out may be developing side effects from the Palladia.  She's had dogs uses it before for several weeks before it starts irritating the belly.  Poor guy didn't want to eat for about 3 days.  He'd have some treats and eat peanut butter to take his meds, but had no interest in his food.  Plus he had some nasty diarrhea for a few days too - you could tell in his eyes that he did not feel good.  But we've got him nursed back to happy and feeling good.  We decided to stop the Palladia indefinitely.  The vet advised to give a week off, but even after the week I wasn't ready to hit his system again when he wasn't 100%.  He is panting more and more and these 100+ temps are not helping.  He has his spunk back and is playful and happy, so we will just keep him that was as long as we can.  He will go back in July as well and have an echo to see any progression of his heart mass.

Best behaved pups at the vet!