CF Appointment 6.7.19

I had my 2nd quarterly CF appointment this year, and my first appointment as a 36 year old!  I was due for my annual tests, so I went in the morning for a glucose test, more blood work and a bone density scan all before clinic started.

I was grateful for a short and sweet visit.  I saw the whole team my last visit, so I just needed to see the doctor.  We discussed the decision to discontinue the Tobi Podhaler.  She said we could try the nebulized version or even have the respiratory therapist come in to go over how to use it (to make sure I was doing the breathing correctly).  So, we may do that on the next visit (go over the breathing part), but I'm going to stick with Cayston.  Tobi takes around 20 minutes to nebulize, and who has time for that? Obviously if it was needed I would do it, but I can get what I need from Cayston, so I'm thankful for that!

A physical therapist was in the visit shadowing my doctor to learn more about CF.  His experience is mostly with those that are being hospitalized, so he got to see a glimpse of life outside the hospital.  He was happy with my exercise routine and told me to continue doing it.  And that's my plan!

I also mentioned to my doctor about wanting a new vest.  While I'm happy with my SmartVest, I would like something that's a bit more travel friendly.  The AffloVest is on the top of my list.  She told me to do some research on it and the version that Hillrom makes (Monarch).   So, anyone out there with suggestions - please let me know!!  I'm excited to get the ball rolling with this soon!

I was feeling great and was on day 23 of 28 for my Cayston cycle.  I do at least 3 tests for the PFTs and that's usually where I max out.  I went for try 4, but as usual #3 was best.  But, I still like to push myself and try to do better.  Here are the results:

                         6/7/19             3/13/19         5/16/18           5/9/17           5/10/16
FVC                   102%               100%               99%              99%                 96%
FEV1                   93%                 92%               91%              87%                 84%
FEF25-75%         72%                 72%               73%              62%                 57%

I can't complain!

I got the results of my glucose test, and fortunately that all looks good.  I was at 92 before the test then 2 hours later after drinking (I chug) the orange drink, I was at 95.  Anything over 130 would make me have to get tested again in 6 months, then over 200 would mean that I most likely have CFRD (CF related diabetes).  So, I'm free until next year when they will test again.

My blood work wasn't all in, but vitamin D was great - yay!  The rest will take a few days and then the bone density can take a month or so before it gets read and reported back to my peeps.  Oh well.  Hopefully my osteopenia is holding steady.  My weight lifting should be helping me too :)  Plus all the calcium and vitamin D.  Fingers crossed!  I'll report any results when I get them back.

And some exciting news - I'm going to be participating in another CF study!  I'll start the week after next and share the details.


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