Thursday, July 18, 2013

They Say the Numbers Don't Mean Anything

Well Tuesday I was de-accessed at clinic.  So glad.  I was totally over IVs.  Unfortunately instead of my lungs improving with another week they went down.

I was a little annoyed at first though.  When doing them, the RT had the screen faced away from me so I couldn't really see the results.  I usually see them.  No biggie.  She was a new one for me.  So after the first blow she says "oh good you went up from last time."  So I am thinking sweet maybe I hit 40%!!!  Second one she says "even better!"  So I am pumped to get the print out.

I don't know where she was looking.  My guess is FVC/FEV1 instead of FEV1.  That is the only one where I am slightly better than last week.  My FEV1 was 1.03L at best.  Remember last week I was 1.10L.  And before the hospital I was 1.13L (.95L got me admitted).  WTF?  I was not going with another week of IVs though.  I feel fine.  I wouldn't have guessed my numbers were down.

I also lost 3lbs from the week before.  I was shocked.  My home scale stayed the same.  To be honest I am not worried.  I don't eat as much during the summer and with the exercise, I am bound to shed a few pounds.  If I lose too much more than I will start to worry.  And once fall hits again I will pack the pounds on again I am sure.

She also gave me a one week trial of the TOBI Podhaler.  I am supposed to wait 2 weeks then give it a go.  I am nervous though considering the reactions I get from any inhaled antibiotics.  I don't want to be spazzy for a week.  Plus I am back to feeling great at the gym and I don't want to ruin that!  So I don't know if I will try it or not...

I also found out I am culturing Steno Malt again.  Bleh.  So I started a 2 week course of Bactrim last week.  Could be why my numbers are still down, but I was culturing it when I was in patient too.  So it doesn't explain why they went down from last week, only that they are down overall...maybe.

Tuesday, July 9, 2013

Feeling Better...Almost Normal

Well let's see what has been going on the past two weeks?  I was admitted on the 28th, Friday.  Originally I was supposed to go in Thursday, then it was pushed to Monday then it was Friday.  Luckily they did Friday because there was no way I would have been out on time for the 4th festivities had I gone in on Monday, the 1st.  My TOBRA levels were high after just two doses so they stopped it for one day and restarted me at a lower dose and every 36 hours.  I am doing that schedule now at home too.  I am also on Zoysn every 8 hours.  My normal IVs schedule.

I had clinic follow up today.  My numbers are back up to 1.10L, where May and June I was 1.13L and 1.11L respectively.  So I am pretty much back to base line.  We are doing one more week though to see if I can get anymore from these old blowers.

I also got a new toy!!!  The NP gave me a spacer and an Rx for a duoneb inhaler.  So now when I am out and need a treatment I don't have to fret, or breathe like shit.  I can keep it in my purse and use it when I need it in place of a nebulized treatment.  This will be great for amusement parks and the beach!!!

As far as feeling better, I am getting there.  My O2 is almost normal with exercise, but my tolerance is way down since its been almost 8 weeks since I had to slow my pace.  So I need to build that back up some.  I am coughing up a storm, all dry inflammed coughs.  No fun.  I miss my mucusy cough from when I was a kid...

Till next week.....