Skip to main content

3rd Quarter CF Appointment

Better late then never, but I had my quarterly CF appointment on October 27th.  It was a long day, but its just one of those things I have to do.  I went by myself as I couldn't recruit anyone to endure the long day with me, but I didn't mind.

My morning started at 10am at the blood lab...I of course had to fast for my glucose test :(  From there, I proceeded to Radiology for my chest x-ray for a 10:30am appointment.  Since the blood drawing went by so fast, I was at x-ray early and they were able to take me back early - woohoo!

All finished with my x-ray! Isn't my gown cute :)
On a funny note, the x-ray technician said I had a nice chest after the x-rays...lol.  I headed to the PFT lab for an 11am appointment.  Unfortunately, they were swamped so I didn't get to sneak in there early.  While I waited, I popped back in the blood lab for my 1 hour drawing of the glucose test.  After PFTs, I went for my bone density scan scheduled for noon.  With much surprise, I finished that early and headed over to get my last drawing for the glucose test and then went to the clinic office for my 1pm appointment with Dr. Forseen.

Face mask and bandaged arms...I looked like a complete mess!
My appointment went well - I met with the Respiratory Therapist, Social Worker and a Respiratory Fellow (I think thats what he was called) before seeing my doctor.  Everyone was proud that I've kept up my exercise regimen.  My doctor then recruited me for a 10K in February - yikes!  All in all, they were happy with my health...but of course they would like me to use the Vest or some additional form of airway clearance to help keep my lungs clear - blah :/  I think it was about 3:30pm when I was finally released and headed home.

The North American CF Conference had just taken place a week or so before my appointment, and my CF Team was excited to show me the program:

Yep - that's me in the purple on the bottom right :)  Page 16!
A few test results were ready that we reviewed: 

Glucose Test - all normal!  Starved for nothing!
X-Rays - looked good...no significant change from last time
Sputum - still pending
Bone Density - still pending
and the PFTs....

They were slightly down from July but still good.  I was interested to see the results because it was Day 28 of my Cayston cycle.

FVC - 101%  (previously 103%)
FEV1 - 85%  (previously 89%)
FEV25-75 - 47%  (previously 57%)

Don't like that FEV25-75 number...thats telling me I've got some crud in my small airways that I need to get OUT!  

I'm happy to see that my health is stable...I pray it stays that way for a very long time!!  I will go back in December...somehow my appointments got off schedule and I've only had 3 appointments as of the end of October, so they want me back in December to get my 4 in for the year.  It's December 14th...any takers?!?!  :)

Comments

  1. So you do not use the VEST???

    I cannot live without mine......My question is do you feel like you have mucus in there?

    Maybe thats why the one PFT number is down. You got to get that mucus out my cyster.

    I suggest if you do not like the vest to at least use the flutter or acapella.

    But if the vest bothers you how it fits you can ask for a different size jacket to wear or maybe its to tight when its all straped together.

    ReplyDelete
    Replies
    1. Hey John. Yep, I have the vest but don't use it. I know, shame on me. I just absolutely HATE that thing. Its a miserable experience altogether. Every once in a while I can feel something rattling down deep and usually get my hubby to pat my back and that helps. I have the flutter and acapella, but don't particularly like those either. I keep telling my doctor that I need a pill for airway clearance! I know I need to do something more than exercise, but just haven't found a routine that I've been able to stick with yet :(

      Delete

Post a Comment

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…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…