CF Appointment 9.11.2019
I've clearly been MIA lately, but all is well. Just been busy enjoying time at our cabin in West Virginia and soaking up snuggles with my adorable new nephew. 💙 I'll share some pics of those adventures soon.
Yesterday was my quarterly CF Appointment! They had a nursing student doing some shadowing for the day, so she got to sit with me through my appointment and learn the ins and outs of CF.
First up, as usual, were my PFTs. I have just started my Cayston cycle, so I was on day 5 and did a treatment that morning before my appointment. Also, with all my travels in August, I have not been on my vest or workout routine...pretty much at all. 😔 But, being back home, I'm back in the swing of things!! Yay! And this just proves all the more reason that I need an Afflovest to make vesting and traveling easier!!! So, here the results:
I'm a happy gal! I'm feeling great and can't complain. I will say that getting back into the workout routine has sucked. You lose it if you don't use it. My stamina is down and so is my strength, so I'm having to build back up to where I was.
Next up was the Pharmacist, which is a new member to the CF team. We had a pretty quick and easy visit. We reviewed what all medicines I take (prescription & over the counter) and my pharmacy selections.
Then, Don my Respiratory Therapist came along. We've been communicating outside of my last visit about getting a portable vest. We discussed 2 options, the Monarch and the Afflovest. We are going to see if I can get a 30 day trial of each to see which one I prefer. I don't know that I'll use it everyday as my SmartVest is still great, but I'll definitely use it A LOT as I'm always on the go. I want something I can throw in my bag when I fly...as of now, I don't take any airway clearance device when I'm flying. And it will be great to be able to do some household chores while I vest and not be confined to one spot. So, that process has started and hopefully I'll have some news to share in the next week or so.
Up next was the new PT - another new CF team member! We chatted about my work outs, and what all I do to stay active. I told him about my back pain (I think its that stupid Rhomboid again) that flares up from time to time. Overall, nothing crazy to report. I've been taking glucosamine to help with my joints and that seems to help, plus my Osteopenia is GONE! Wohoo!!
Another new face came in next, the new GI guy! It was our first meeting as well, so we got to know each other right away by discussing poop. What's it look like? How many times a day do I go? Does it sink or float? All those fun questions! We discussed my enzymes and the fact that I will need a colonoscopy when I'm 40! EEK - that's only 4 years away. This getting old crap is for the birds!
Finally my doctor came for her time. We did a recap of all the previously discussed topics, chatted about the triple combination therapy that should work on my mutation, and got me a prescription for Flonase. My sinuses have been going a bit nuts lately, so I'm taking my Claritin as usual, but hoping the Flonase will give some more assistance. I've been blowing out these pretty nasty hunks of mucus from my sinuses this week since I started Cayston. Better out then in, right? We looked at my PFT trends which are great and stable - woohoo!! My bloodwork from June came back that all is well, but my sputum is still culturing Pseudomonas Aeruginosa (PA) and Stenotrophamonas Maltophilia. Dang it!!
And last, I couldn't produce any sputum, so I was gagged by Sam, my CF nurse. I even had my container from last visit in case I coughed something up before my appointment, but I didn't. Oh well.
It was a great appointment and I was out the door in about 2 hours! I'll take it! I'll be back again in December :)