Tobi Podhaler

I started the pod haler on Friday.  So far it hasn't been awful to use.  I only have a 7 day trial so I won't get the full 28 day dosing, but we are doing it to see how my lungs react to it.  I have a horrible reaction to inhaled antibiotics.  Severe bronchi spasms.  Hate them.  So far nothing serious like that but its only been 3 doses.  The first night, Friday night, I had quite a few suffocation dreams and P said I was moaning a lot in my sleep.  So last night I upped my O2 from 1.5L to 2.5L and it seems to have worked.

Saturday morning I also woke up with a sore throat.  But that could be from the inhaled meds.  Or so I thought.  Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm.  Looks like a cold.  Fabulous.

I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me.  Or didn't.  I also have an appointment with a pancreatic surgeon on the 28th.  My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas.  She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst.  So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed.  So why wait?  I need this bad boy removed asap.  That is something I will discuss with the surgeon on the 28th.

So until the 28th my lovely blog readers...

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.

Medications...Today vs 3 Years Ago

First order of business is check out this post by fellow bloggy Cystic Gal.  She talks about our mutual influence in a semi-recent online study of influential CF bloggers :)  Yay to us!

This study, conducted by the makers of TOBI, is pretty nifty.  The data was taken in 2009 when I was still a fairly new blogger.  My stats have changed since then.  And the fact that I now have Twitter too.

But check it out yourself:
2011 CLIO Awards

This award/research thingy got my mind thinking last night.  Coupled with my lack of health insurance (see previous post about that one), I had much to ponder as I tried to fall asleep last night.

What did I ponder about?  Medications.  Or in my case lack of medications.  In reality I don't take that many CF medications.  Most of the daily pills in my sorter are vitamins and supplements.  For example....I take Women's One A Day multi vitamin, Calcium, Vitamin C, Vitamin D, Vitamin E, Motrin, stool softener, and melatonin.  The medications I take are Singulair, Prevacid and Azithromycin in pill form at least.  Once I stopped the anti-depressant and the hormones I have nothing!  There is Creon 24 with meals, DuoNeb 2-3 times a day, Pulmozyme once a day, 3% 1-2 times a day and Symbicort.

Gone are the days where I was taking medication after medication.  No longer do I take oral antibiotics (2-3 at a time) or inhaled antibiotics (off month I added Cipro oral).  My routine seems so slim compared to so many others.  I can do my morning and night treatments in an hour each because I don't have to use all that extra stuff.  Sounds great huh?  But the reasoning sucks.  My lung bugs don't respond to the orals like they used to, and my lungs themselves don't like anything being inhaled into them besides the ones I do already (the exception might be Symbicort.  I have noticed some tightness when I do it vs when I don't).

Its so weird to me, to read about 3 hour treatment schedules for other CFers when I barely do that in a day.  But I have been there. I have done the 2 hour treatment, the 1 hour rushed treatment and the finish in the car treatment.  I feel like the backwards patient.  The one whose regimen gets easier as she gets sicker.

So. Freaking. Weird.

TOBI..day 2

Well guess what?!?!?!?  I SLEPT ALL NIGHT!!  With NO tightness!  The meds finally worked!  OMG I am so flipping excited!  I can finally started combating the damn PA again woot woot!!!  I slept great, coughed up some fun stuff this morning BEFORE treatments and now I sit here doing my morning round and coughing even more fun stuff up.  Boy was I filled with some fun goo, ewww!!!!  :)

New blog colors and some other stuff

I wanted to add my own blog background since I have seen some really fun ones but I have no clue where to add the code.  So I opted to change the colors up.  I think the black might be too much so if it is let me know.  I like how my header pops out though...and it makes it look like the title is cut out and the black background is coming through.  I find that awesome looking.  But you are my readers so let me know how it looks to you all!!!!

On to other news.  I was up half the night suffocating!!  Dam that TOBI!  But by 9 am I was able to fall asleep and sleep well until 11 am.  So I am going to try again tonight and tomorrow night and see how it goes.  If I still wake up all night then I will call my DR on Monday.  I was fine today which is different than most times so I am hoping I just have to deal with the tight-man-sitting-on-my-chest feeling a few nights.  That I can deal with since I coughed up some GOOD stuff this morning :)  And today I am also having some pain which I am attributing to the TOBI.  It feels kinda like glass in my lungs in varied spots.  And it isn't constant and there is no rhyme or reason.  I  have no clue what it is and it is tolerable so no need to call anyone IMO.  

Hmm what else.  Oh I hung out with my mom all day today.  Well I went over around 2.  We just watched some TV then went to dinner at Charlie Brown's.  So yummy!  I had steak and a baked potato and I love salad bars since they can satisfy the CF hunger!!!!  

Tis all for now!  I will update on how I do with TOBI tomorrow!!!!!

EDITED:

Well obviously I figured out how to change the background and I did!!!!  I love the colors woohoo!!!!!!!  Hope you all do too!

TOBI

Tonight I started TOBI again...we shall see if the new meds worked.  

*fingers crossed*

Clinic Appointment

Well today was clinic.  And I am NOT getting locked up!  I was actually a little surprised, though I woke up this morning and felt better than I had in a few days.  I am stable right now.  First numbers are today the ones after are last appointment on November 24^th.  

FEV1 - 1.24L (40%)  1.26L (40%)

FVC - 2.11L (57%)  2.40L (58%)

FEF 25-75% - .55L (15%)  .49L (14%) 

My numbers are down very slightly.  But nothing that is worrisome.  

And holy shit I gained 3 pounds!!!  I now weigh 121!!!!!!!!  I  have never been so heavy in my entire life!  The dietician said my ideal weight is 125-126.  I said phooey I am staying here!  

I talked to him about the TOBI and my tightness and he put me on Singulair and Symbicort.  He said to stop the Serevent and just do Symbicort.  My airways are inflames and reactive so hopefully this will help it so I can tolerate TOBI and keep kicking the PA’s ass.  I am also to do Albuterol before I do TOBI (as normal) then do the Symbicort then put Albuterol in my TOBI and see if that helps also.  If it doesn’t help I am to call him and he said we will figure something else out to combat it.  Fingers crossed it does though!!! 

Let’s see what else?  Hmm.  Oh I asked about the blood in my stools and he said it sounds like hemorrhoids (ahhhhh!!!!!!).  But that is normal given all the coughing that we do.  So that is nothing to worry about.  He said or it could be something like the enzymes not dissolving completely where they should and when they get to my colon/intestines they are breaking down the tissue there.  They don’t have any clue it is body tissue and not food so it just does its job.  So that is a possibility too.  

BUT the fun part of the appointment was…he is trying to get in contact with the colon guy at HUP.  Apparently they are doing some sort of research on families with genetic colon cancer.  When I told him about my family’s history all he could say was “wow”.  I guess we had never told him the extent of the genetic link.  He was floored that it is basically in my genes to get it.  He could not get a hold of the DR while I was there so he is going to call me back at some point and let me know what the DR says.  So now I am going to call my Grandmom and see who had it and all the fun lineage stuff. 

That was it.  OH yeah I had my dermatology appointment this morning too.  She prescribed me a medicated face wash and cream to use.  So I have to go back in 8 weeks to see if it helped at all.  I am hoping it does.  Not that my acne is all that bad but it is leaving purples spots all over my face and I look polka-dotted!!!!  

Below is a picture of Philly from my view stuck in traffic at 30^th and Market street.  Fun times!!!  And also a couple from Sunday when Rocky, Maggie and I were all cuddling in my bed reading.  So cute!!!!  And little Owen from Sunday too.  He is adorable!!!!!!  I have a video of him crawling and if I can figure out how to upload it I will!

Repeat of Friday...WTF?

Yep just as the title says, today was a repeat of friday.  I did my TOBI this morning and lo and behold I sat on the floor at the twins birthday party because it was the most comfortable for me and I was able to stretch my body out a bit to let more air in.  

Fuck it I am DONE with TOBI!  Let my lungs turn to total shit I don't care.  It can't be any worse than it feels now.  Ok I lie I am sure it can feel worse but God almighty at least I won't be doing it to myself.  

I will call my clinic tomorrow and tell them I am done with it and we need to find a better way to combat PA.  I can't deal with it anymore.

<3

TOBI, TOBI, TOBI...ew!!

Today I started TOBI again.  So this blog will be me bitching about it endlessly.  

I usually start it at night so that I don’t sleep the first night at all.  It has been working for me for the past year.  Well last night I didn’t have any dry neb cups so I didn’t start it.  So I did it this morning.  BIG mistake!!!!  I have been horrible all freaking day.  So bad I almost went home to sit on my bed hooked up to my O2.  But I survived the day.  Not with out some serious pain though!  Ok yeah I know it pales in comparison to some people but hey it fucking hurts like hell for me!  

Right now it STILL feels like there is a 400lb man sitting on my chest and my back is arched trying to hold him up.  All your muscles in your back, shoulders and arms hurt like hell from trying your damdest to breathe normally.  My head is throbbing from coughing, but not hard since if I do it feels like my back is breaking and my lungs are going to pop right out.  Though I don’t think I would mind that haha!  I have my O2 on now but it doesn’t help the pain.  It only helps keep my HR low.  Tylenol, Motrin, Excedrin…none of them help with the pain.  Its an internal ache, a pain that does not go away with meds, only time.  How I long for my time to be here so I can rest peacefully.  

I will skip my treatment tonight and tomorrow.  Then when I start again on Sunday I SHOULD be back to normal or at least be able to function on a semi-normal basis.  

I also made the mistake of going to lunch with some friends from work.  It was the most torture I have thrown upon myself in a while.  I couldn’t even talk the entire time.  Luckily my cube-mate knew my issue and didn’t say anything.  So she kept the other friend occupied haha.  I tried to eat my sandwich when we got back but I couldn’t.  I did eventually eat it but it took a while.  At one point I put mu pulse-ox on my finger and should my mate and it was reading 89 and 130-something.  She was like holy shit!  So she put it on her finger and it read 98 and 74 haha!  She got to see first hand just what sucks about CF.  Ok well not all of it but a portion! 

So I decided that I would document what my numbers were when I left my desk and when I got to my jeep.  Below you will see what happened.  Yes the 89% was when I started and the 86% was when I took the next picture.  It did hit 85% but it went back up before I could get the picture to take.  And people ask why I can’t just deal with it when it helps me battle infections?  Fuck that!!!!  I think it has lost its efficacy on me anyway. 

Needless to say I highly doubt I will be hitting the gym tomorrow morning.  Most likely I will be sleeping until I have to get out of bed at 2 to get ready for my Christmas party for work

Ok I am done bitching.  I had much more planned out earlier today when I was driving home from work but dummy me didn’t sit down and blog right away.  I did a treatment and ate. Phooey!!!  <3