Wednesday, November 18, 2015

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!




Wednesday, November 11, 2015

Who Am I?

I'm not sure where this thought came from, but I was drying my hair and started thinking about who I am and thought I should share.  Here is what I came up with:

I'm kind of shy before you get to know me, but when I finally have a comfort level - look out.  I'm not one to speak my mind openly, I keep my opinions to myself.  But then again, if you are one of the handful of people that know me backwards and forwards, you KNOW my opinions too.  I tend to ramble when I talk, especially if I'm excited or nervous.  If you have food in your teeth, I probably won't tell you...I want people to tell me, but not really cause that's kind of embarrassing and awkward.  And yet, after I eat, I usually have someone look and tell me if they see anything.

I've never met a baby that I didn't love (even the ugly ones).  And yes, I do believe there are ugly babies & kids.  I tend to keep that thought to myself, but I'm definitely thinking it.  Kids kind of annoy me.  There are many kids that I adore (especially my nephews and nieces), but stranger's kids...not my thing.

People in general kind of suck.  That's probably why I love my dogs so much.  I don't understand why people lie, steal, use drugs, cheat, kill.  It frustrates me.  However, I generally see the positive in people when I meet them.  I always hope/expect that they are good until proven otherwise.

I judge.  I don't like that about myself, but I do it.  I try to think of something positive to counteract any negative thoughts/opinions.

I'm bitchy.  Usually Will and my mom see that the most - sorry :(   I'm stubborn.  I like things to be done my way.  I don't like when plans change, even if I'm the only one that knows the plan.  I tend to make plans in my head a lot.  I hate when people back out of commitments...it's just shitty.  So, I try very hard not to be that person.  I won't lie, I know I've backed out and trust me, the guilt eats me alive.

I curse...A LOT.  I do know when to watch my language and I do fairly well at it.  I find it funny when Will tells me to watch my language... I'm still holding my ground that I didn't curse as much until him.  I'm very hard to offend.  I can't really think of a time I was offended.  I've had my feelings hurt, but that is different (in my mind).  People are WAY to sensitive about everything these days.  Grow some tough skin and suck it up like the rest of us do.

I love my dogs.  I love all animals.  I'd do anything in my power to keep an animal from harm.  I know people get annoyed with the overly animal loving people like me when there are humans that are suffering from hunger, abuse, etc.  I'm not saying I don't care about that too, because I do.  I just chose to focus my efforts on the animals because they don't have a voice.  I hit a squirrel once and had to pull over because I was crying.  I know, extreme.  I'd do anything to protect my bullies.  Why do you think I always have a gun handy.

I love shooting guns.  I never did until Will and I'm so thankful he taught me how to properly use a weapon so I can defend myself...Lord willing I never have to.  But, I'll be ready.

I'm not a tom boy, but I'm not a girly girl.  I don't hunt, in fact I hate hunting.  I understand the need for it, but I still don't like it.  However, I do like blood and guts, so somewhere I must have some wires crossed.  I'm not one that loves to spend the day shopping for clothes and shoes.  I wish clothes would magically appear in my closet that fit!  I'm not saying that I don't like nice things or don't ever want to go to the mall, I do, just not very often.

My favorite times are when Will and I hop in the truck and just drive around.  I love sitting around the kitchen table or in the living room with family and friends, just talking.  I wish I would have liked that more when I was younger because I probably would have learned a lot.  I love my family.  I love my dear friends.  Words can't express how much they mean to me.

I'm organized, yet disorganized at the same time.  I do not like being late...for anything.  I like to help out.  I think everyone should carry their weight and not let someone do all the work.  I'm emotional, I'm scatter-brained, I'm a procrastinator.  I'm me, and I'm good with that.


CF Appointment 3.14.19

And just like that, another 3 months has passed by.  I headed to my CF appointment on Wednesday, March 13th. I saw lots of my favorite peo...