Skip to main content

CF Appointment

Wednesday was the day.  I was rather dreading it because I knew it would take forever due to all the annual tests that needed to be done.  So, I dragged my mom along with me :)  There was a day that she never missed an appointment, but now that I'm a big girl, I go by myself most of the time.  So, it was nice to have some company this time.

The day started at 8am with my oral glucose test.  And of course, my veins wouldn't cooperate, so I had to get stuck twice just to get the first drop of blood :/  They took 11 vials that time...checking my vitamin levels and all the other "stuff" they look for.  They changed the drink from orange to fruit punch! I don't get why people complain about having to drink that drink...its not bad.  Yes, its a little thicker and sweeter, but it by all means in not horrible.  I chugged my 10 ounces and away I went :)

So, from there, I headed over for my bone density scan.  I got there early and they took me right back!  As always, that's super easy and quick.  So then we headed over to x-ray, which I was also early for.  I was called right back, took 2 shots and I was done!  My only complaint was that I was starting to get hungry!!!

My appointment with the CF clinic was at 10am, but it was around 9:30am when I got there and they called me right back.  My clinic always has us do our PFTs before meeting with the doctor so they can look at my scores before seeing me.  I would typically go to the PFT lab, but they have implemented a new rule to help with infection control.  The PFTs are now done in our room we see the doctor.  One less place to run around too was great for me!!

So, I did my PFTs in my room just before Dr. Forseen arrived.  I'm happy to report they are great (with exception to my small airways)!
FVC - 110% (last time 97%) 
FEV1 - 93% (last time 87%) 
FEF 25-75% - 57% (last time 59%)

The FEF 25-75% is what measures my smaller airways.  I'm still not sure why it is a lower number...it used to always be in the 80 percentile?!?!  Probably cause I need to do better airway clearance...boo!!

The social worker came in for our annual meeting and happily I haven't had insurance issues and don't need much from her, so we chatted for a few minutes then she left.  I didn't need to see the respiratory therapist or dietician this time, so Dr. Forseen came right in.  

She was happy with my PFTs and asked how I was doing on the Fosamax (for my osteopenia).  Had no problems to report there.  She asked if I started the hypertonic saline and I of course said, nope!  BUT, I am in the middle of my off cycle for Cayston, so I would like to start it now.  I wanted to get an idea of my PFTs off Cayston and off HTS and now I have it.  So, my goal is to start it tomorrow.  We talked about my exercise routine and personal training...which has slacked off the past few months but I'm back at it now!

She listened to my lungs and said they sounded great, then we chatted about Great Strides and the CF Education Day.  Due to new guidelines from the CF Foundation, only 1 person with CF can be at the Education Day because it has always been indoors and they don't want to increase the risk of sharing germs amongst us CFers.   Understandable, but sucks too.  So, they are brainstorming ideas about how to make Education Day an outside event where the only limits on CFers to attend is that they can't culture Burkholderia Cepacia (which is a nasty little bug that lives in the lungs - fortunately, I don't have it!)  So, they are thinking about combining the two events.  I gave my 2 cents then realized I was late for my blood draw for the 2 hour glucose test - oops!  So, I ran down the hall for the blood draw then came right back.

And I was done!! Woohoo!!! Mom and I were pulling out of the hospital at 11am.  We went and met Will for lunch, then we had a girls afternoon and walked around downtown Aiken, then of course, had to hit Target!  When we got home, Mom helped me hang some pictures and things around the house.  For some reason, I'm not very good at hanging stuff or seeing the vision, but thankfully she is!   I bought these letters a few weeks ago and was just waiting for her to come to help me hang them - I love how it turned out :)  

Hung these in our bedroom
So, Wednesday was a great day! Got a good report from the doc and some much needed Mommy and Me time :)

Being that Halloween was last night, here is a pic of my crazy bullies as Eeyore and Pooh!!

Sarge as Eeyore and Stella as Pooh
Aren't they cute from behind too :)



Comments

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

CFF Blog Post

I was honored when the CF Foundation approached me to write a blog about our decision to not have children.  As a reader, you know how much we love our dogs and feel fully blessed by having them.  So, why not share it with the whole CF community?!!

Check out the blog post here.


I was shocked to see how many responses appeared on the FB.  We had likes, loves, wows and sad faces...thankfully not mad faces.

I enjoyed reading the comments...of course most everyone was very supportive and shared their decisions on having or not having kids.  But in typical social media fashion, people take things to the extreme or can't keep rude thoughts to themselves.  So, I wanted to take a minute to give some feedback.


1) I'm 99% sure we would have came to this decision even if I didn't have CF.  Every couple makes a decision whether or not to expand their family.

2) We aren't irresponsible in our delay of having Will tested for the genes...its called birth control people.  And EVERYONE…