Skip to main content

CF Update

Greetings!

I had my first CF appointment of 2017 last week...and it was a busy afternoon.

First, I started with PFTs, which were stable...so that makes me happy.  I was on my last day of week 2 of Cayston.  I think I do my PFTs incorrectly some times.  The mouthpiece you have to blow on is pretty big so I think I get too focused on my jaw being open abnormally that I don't blow right.  Anyone else feel that way?  Anyway, here are the results:

                        2/7/17           11/1/16        2/2/16         3/11/15
FVC                  96%                 99%                95%               97%
FEV1                88%                 89%                84%               86%
FEV25-75%     71%                 69%                60%               60%

Afterwards,  I met with the dietician and discussed my improving diet.  Part of my new routine at the gym involves a meal plan.  While I'm not 100% compliant, I am making a conscious effort to eliminate bad foods.  I haven't had a Diet Dr. Pepper or Sour Patch Kids (nor any other candy) in 4 weeks.  What!?!? I have cravings, but I'm learning to supplement them with better things, like fruit.  She's happy with my weight so I can keep up my plan.  Also, when I'm eating healthier, less fatty foods, I don't need quite as many enzymes. Whoop whoop!

My respiratory therapist came in next.  He was happy my PFTs are good.  We talked about the nasal congestion I was starting to have again and the drainage that might be bringing them down just a bit.  So, I'm going to make sure I bust my butt not to miss any vest treatments while I work out the kinks in my sinus drainage.

The social worker was up next.  All good here - she had her annual questionnaire that I completed.

Last was my doctor.  She checked me out and noticed my throat was a bit red and one ear looked agitated.  I had just flown 2 days prior and had another trip this past weekend, so she put me on an antibiotic just to be sure to fight off whatever might be starting up.  That means I'm on Levaquin 750mg once a day for 14 days.  (Update - I'm a week in and already feel like I'm clearing up!)  We did talk about my ENT visits and my speech therapy I've been going to.  She said she read all the reports - that made me very happy that even though it wasn't their office, they still keep up with me :)

And since I couldn't cough anything up, the nurse came in and gagged me to get a culture...lol.

Once the regular stuff was over with, I needed a bone density scan and some blood work.  So I ventured to both of those offices.  The scan is super easy and fast, so that's great.  Hopefully I'm maintaining so I don't have to start back on Fosamax.  I only had to have 1 vial of blood drawn to test the vitamin D levels that were slightly low at my annual blood work.  I've been extra good about taking my vitamins so I'm expecting that to be just fine.

So, that was my afternoon.  Overall, a great appointment!!

Comments

  1. I am always amazed by adults with CF that have high lung function. Awesome!

    ReplyDelete

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…