Skip to main content

CF Appointment & Genetic Testing

I had my quarterly CF appointment on Friday and it went great.  Although, it took forever! Thankfully, I went by myself or Will would have been going nuts in the little room.  My PFTs went up (from a 101%) to a 103% - woohoo!!  Very excited - I think its a combo of the Cayston and my exercising!  I even lost 7 pounds since March, which makes me even happier!!  Have no fear, my BMI is still where it needs to be - just had to shed that winter coat I put on.

Everything else checked out fine and I go back in September to be tortured - PFTs, Chest X-ray, bone density & annual blood work.  SO NOT looking forward to that.  I might as well plan on being gone all day.  Now, I just have to find someone to trick into going with me.  I get bored by myself in the hospital waiting rooms all day so its much better with someone there (although I can't imagine they enjoy it).

You may recall I mentioned the thought of having Will tested for the CF gene.  We started this process in April by having his blood drawn, then it was sent off to Emory in Atlanta.  We skipped the pairing procedure and went straight into sequencing which detects about 99% of mutations.  We heard back from the geneticist on Tuesday and Will is NOT a carrier!!  There is another option to do further testing - deletion/duplication testing, which I don't believe we are going to move ahead with as there is less than a 1% chance that they would find a mutation.

We are not planning anything right now!! Its just nice to know and have that as an option should we wish to have kids in the future - or if there is an accident :) HEHE

Will and I were in Vegas Sunday through yesterday celebrating my birthday!! My internal clock is still messed up from the time change, so I'm moving rather slow today.  I'll be sure to post some pics and tell about our trip soon!  IT WAS GREAT!! Much needed and helped get my mind off of losing Sophie, although we came home to an empty house which was rather depressing...

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…

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…