4th Quarter Appointment

Greetings!  I'm happy to report that I had a CF appointment on Friday and all went well.  I'm actually down a pound and 1/2 which is exciting for me...the working out is making a difference - yay!  Have no fear, I still have plenty of meat on my bones ;)  My doctor had no concerns about the slight decrease in weight.  On a side note, I like the scale at my house better...its always 3-4 pounds lighter then the hospitals.

I had PFTs done...here are my results:

FVC - 97% (previous 101%)
FEV1 - 85% (previous 85%)
FEF25-75% - 62% (previous 47%)

So - pretty good!  My smaller airways (FEF25-75%) seem to have made some improvement.  Could be because I'm currently on Cayston.  On Friday I was Week 3, Day 3 of the 4 week cycle.

We talked about my last sputum culture which turned up some confusing results.  So, they want to redo the AFB Culture as there wasn't enough "stuff" to test from last go round.  Hopefully, all is OK with that.  So, I got to spit in a cup and have my throat gagged to be sure they had enough "stuff" to test.  I hate getting gagged...I used to cry when I was little and they did this.  I was a big girl, no tears...but my eyes did water...doesn't everyone's when they stick a big q-tip down your throat?!?!

We also chatted about my Bone Density results...I've decreased 3% since last go round :(  This is kind of odd since I take 1000 mg of calcium each day (with Vitamin D).  My vitamin levels tested fine, so we aren't sure what my deal is.  My doc is going to chat with a bone endocrinologist about possibly putting me on Boniva or one of those other Osteoporosis medicines.  So that's another possible pill to add to my day.  There could be worse things, that's for sure!

And, we talked about me starting Hypertonic Saline.  A fellow CF blogger (Hi, John!!) has mentioned it in his blog several times and loves the stuff.  So, I mentioned it to Dr. Forseen and my respiratory therapist (Dabney) and we are going to do my trial test for it at my next visit.  Dabney mentioned a possible faster method and is going to do some research for me so I can get with insurance and see what they will/won't cover.  I'll keep you posted on what becomes of it.

I guess thats all for now.  I'm just awaiting the return of my hubby.  He had a guy weekend away, so me and the pups are ready for him to be home this afternoon :)


  1. Hey Cyseter!!! I'm so glad you talked to your CF team about introducing HTS in your airway clearance. As you know I love it and I know there are people out there who hate it. (FYI, I do HTS while I do my VEST) My suggestion for you is to start small. So scale it back you do not have to take the full dose of HTS as it is very powerful especially for the first couple doses. I tried a minute then added another minute and I am now doing the entire neb. As far as delivering the HTS faster I am not sure about this. The med itself is very strong. If it was me I would just take with a regular PARI neb with your neb machine. Thats how I use it. I do not use the E FLOW machine for HTS.

    I can guarantee you will be coughing up mucus in no time when you start using HTS. I hope you will never have to gag again when providing the lovely sputum test.

    Keep me posted on this friend!!! I am so glad you asked about HTS :)

    Take Care!

    1. Hey John! Thanks for the added info/suggestions :) I will definitely keep you posted as we test this out in the next couple months!!

  2. Like you, I am also taking calcium and vitamin d3 supplements each day. Plus, I also take immune support. Then I partner it with the right food and exercise. This is what makes me healthy and strong day after day.


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