Skip to main content

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 :)

Comments

  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!

    ReplyDelete
    Replies
    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!!

      Delete
  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.

    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…