Skip to main content

CF Appointment

Finally something CF related ;)

I had my 4th quarter appointment on November 3rd.  I was scheduled to have my annual blood work done that day.  With an afternoon appointment, I held off on the glucose test...I didn't want to fast all day - this girl has got to eat!  But, I'll get it done in the next couple weeks.  I know its fine, so no real rush on my end.

I was happy, I was in and out pretty quick.  Here's the outline of my visit:

- Had 8 vials of blood drawn - yuck!  Thanks heavens I did eat or they would have had a passed out patient.
- Checked in at clinic and got to my exam room
- PFTs were done
- Respiratory Therapist came in to discuss PFTs
- Coughed up a nice specimen for them to test
- Social Worker popped in to say hello - fortunately I didn't have any needs with her
- Doctor came in - talked, did exam, etc.
- Out of there!

So, how were my PFTs?  Better - yay!! I finished Cayston on the 31st of October, so I definitely think that helped boost them.  Although, I did have a little tickle in my throat and coughed a bit.

                            11/3/15        8/4/15        12/10/14
FVC                       98%             94%             97%
FEV1                     89%             83%             85%
FEV25-75%          68%             57%             52%

I shared about my voice issue I've been having since the last appointment.  One day I'm hoarse, then the next I'm fine and then it starts all over again.  Fortunately, I was a bit hoarse that day and they could tell!  I hate going to the doctor when the thing that is wrong with you isn't wrong that day.  She looked in my throat and nose and didn't see anything other than my throat being just slightly red.  Lungs sounded clear too!  So, it's a mystery as to why my voice keeps going in and out...its still happening too :/

We thought maybe the HTS had been irritating it, but I had missed it a few days prior to my appointment (we were in WV working on the cabin and I didn't squeeze it in...but I did get some exercise!), so that didn't make much sense.  And all the other times I had been on it continuously.

I digressed - sorry.

Anyway, I left happy with my PFTs and planned to take Claritin to see if that helps as I have been going back and forth to WV a lot which exposes me to a lot of temperature changes and different allergens.

BUT....I was contacted by clinic on Friday the 13th!!  Coincidence?  My sputum cultured a not so lovely new bacteria,  Stenotrophomonas Maltophilia.  WTF is that?!?!  So, of course I googled and it doesn't sound fantastic.  Apparently this bug can be hard to treat.  I already have pseudomonas aeruginosa living in my lungs, and now another one...oy vey!

So, what are we doing about it?  How do I get this crap out of my lungs?  I was given a prescription for Bactrim to take 3 times a day for 14 days.  So, praying this does the trick!

I won't lie, I felt a bit defeated hearing the news of the new bacteria.  All I could think about was, is this the bug that will knock me down for good?

No!  This stupid bug won't win!  I'm gonna do everything I can to kill it off!  I'm just curious about where they heck it came from?!  I just don't know!




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…

CFF Blog Post

I was honored when the CF Foundation approached me to write a blog about our decision to not have children.  As a reader, you know how much we love our dogs and feel fully blessed by having them.  So, why not share it with the whole CF community?!!

Check out the blog post here.


I was shocked to see how many responses appeared on the FB.  We had likes, loves, wows and sad faces...thankfully not mad faces.

I enjoyed reading the comments...of course most everyone was very supportive and shared their decisions on having or not having kids.  But in typical social media fashion, people take things to the extreme or can't keep rude thoughts to themselves.  So, I wanted to take a minute to give some feedback.


1) I'm 99% sure we would have came to this decision even if I didn't have CF.  Every couple makes a decision whether or not to expand their family.

2) We aren't irresponsible in our delay of having Will tested for the genes...its called birth control people.  And EVERYONE…