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CF Appointment

My 1st appointment for 2018 is in the books.  And I'm happy with my report!  It's been forever since I've had someone tag along to an appointment, but my mom was free and able to join me!  It was pretty quick, just under 2 hours.

I met with my social worker first to do the annual updates.  They ask about finances, stress, work, family life, insurance, etc.  Thankfully, I don't have anything to complain about.  Then, my PFTs were done before seeing the Psychologist, then the doctor.  My dietician popped in to say hello, but I didn't have any needs and my respiratory therapist was out.

Having a psychologist on the CF Care Team is a fairly new thing.  And I really like ours - he's a West Virginia guy, so we get along great :)  I'd talked to him about my memory issues.  I don't remember shit sometimes.  So, he did a cognitive exam with me that took about 15 minutes.  And, I passed with 100%! Go me!  I just worry about forgetting things being that my Pap had Alzheimer's.  There are things that Will tells me and I have no recollection of them.  And of course the normal daily things about forgetting to get a certain thing at the store, etc.  So, I'm sure big in making lists, setting reminders on my phone, and keeping my planner updated.

Anyway, then I saw my doctor.  We talked about all my meds and usual stuff.  Got a check up and said the lungs sound great and everything looks good!  Woohoo!

Now for the numbers!

                        2/14/18     11/17/17      2/7/17      2/2/16
FVC                 103%            99%          96%          95%
FEV1                95%            89%          88%          84%
FEF25-75%      79%            66%          71%          60%

* my notes on where I was on/off Cayston:
2/2/17 - week 2 of Cayston
2/7/17 - week 2 of Cayston, slight sinus congestion
11/17/17 - off cayston
2/14/18 - 5 days after completing Cayston

I was SUPER happy!  Crazy to say, I haven't vested in a week as we were out of town.  But we were in South Padre, so perhaps the ocean air was good.  I was happy to see my FEF 25-75% increase!  That numbers indicates your smaller airways.  I didn't remember the last time it was that high, so I went back through my notebook.  It hasn't been this high since June 2011 when I had 84%! Yeah buddy!!  Take that CF!

So, I celebrated by eating a bag of Sour Patch Kids! HAHA!  I know Lent started yesterday and I usually give up candy and Diet Dr. Pepper, but I decided I'd break the rule for that good news.    I'm thinking I'm going to change up my plans being that I'm drinking a DDP now 🤣.  I'm thinking beer and potatoes.  Eek!  I think I'll lose 20 pounds if I make it - hahahaha! Wish me luck! 🍻


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I never thought about losing a parent before.  As I grew up, I lost my grandparents and understood that I would have to worry about losing others as they too got older.  But, I never imagined being 30 and having to think about a parent leaving my life.  What a scary thought.  It definitely got me thinking.

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I am not done with my parents.  I still need them ALL.  I don't think that will ever change though.