Thursday, May 17, 2012

Perpetually Exhausted

That is me.  Perpetually exhausted.  This Zosyn is kicking my ass!  But it is also working its magic on me!

My lung function has gone up 12%!!!!  I was 32% 3 weeks ago and now I am 44%!  WOHOO!

Overview of then and now:

FEV1 .95L 32% --------------------1.28L 44%
FEF 25-75 .38L 11% ---------------.61L 18%
FVC 1.76L 52% --------------------2.19L 65%

some good jumps there!  So only one more week of IVs and I can be done. Thank goodness.

Saturday, May 12, 2012

Home Again

I got home around 8:30 last night.  The hospital stay was pretty uneventful.

I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm.  Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit.  I was honestly expecting way more than what it was with the pull out.  I never had them do it before.  She basically did a dressing change and just pulled it out some.  How ironic that THAT is my biggest fear with dressing changes.  Them pulling it out haha!  At least I know I won't die or have a heart attack from it now.  The thing I don't like is now it sits out really far from the insertion site.  That makes me nervous with cleaning it and all.  I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.

Health wise I feel the same.  My cough is less but as far as the lungs go....still hurt....still SOB....still tight.  IVs don't combat that though.  Last night I had a coughing fit and I turned the same color as my bright red tank top.  P said "hmmm you sound great babe, sure you were in the hospital?"  Pretty much sums it up.  It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks.  Also, they have me on a different IV this time.  Usually I am on Tobra and Ceftaz.  This time it is Tobra and Zoysn.  I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!

Also while I was in I had an overnight O2 study done.  Wait what?  Didn't I just have one like 2 weeks ago?  Yes that is right. I DID have one done.  But guess who has NO record whatsoever of having it done?  Apria.  Yeah bastards.  Not too big of a deal getting it redone but still.  How can you have NO RECORD of it AT ALL?  Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night.  Its a smaller concentrator than I had last time and now I have funky green tubing!  No tripping over it in the middle of the night now!  I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again.  Running, jogging, and inclines make my O2 plummet.

Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back.  The lower back, right around where the back indents just slightly about the butt, it hurts.  And I mean HURTS.  I didn't even have this much pain with my hysterectomy!  I could hardly move Thursday and Friday.  Tylenol does diddly for me.  I took 4 Motrin when I got home last night and I felt much better.  But I woke up around 7am (to do my IV) and again could barely move.  So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own.  And hopefully that is soon!

That is my update for now.  I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all.  AND I am done school for the semester!  Classes start again the 21st, but I have 2 weeks of blissfully nothing to do!  YAY!

Tuesday, May 8, 2012

Self Perception

Don't worry this isn't another weight related post.  This one is all about the inside.

With Kalydeco's wonderful results and the start of phase 3 for Vertex 809 (combo med for those with DF508)  with amazing results in phase 2, its a possibility that we could stop CF progression where it is right now in some patients and perhaps even reverse some of the damage.  This is a huge step in the right direction to make CF much more manageable.

But it brings into ones mind some thoughts that wouldn't be there otherwise.  For me these thoughts always played a part deep down in my thinking.  I have often wondered what a "cure" would mean to me.  Disclaimer Kalydeco is NOT a cure.  It restores function to a non working protein in the cell.  CF is still CF, this med just helps the underlying cause and helps to fix it.

I hover around 40-43% FEV1 when I am healthy.  My shortness of breath is daily.  My ability to function normally has decreased drastically over the past 4 years.  Yet this new med could help me gain some of that all back.  I could potentially go back to work before receiving a double lung transplant.  I could stay off that list for many many more years.

However, there is also the negative side to this thinking that we must dive into.  What if I don't last long enough for 809 to be approved and started?  I am not content where I am right now, feeling like my life is on hold until I get a transplant, whether that is 1 year or 10 years from now.  I feel like I have stopped everything and I am not truly living.  I struggle with wanting to take my meds and doing everything by the book because if I don't I would get sicker faster and then transplant could come sooner and I could start my life over.  But we all know that transplant is not a guarantee.  I might not survive the surgery.  Or I might not make it home after waking up and trying to learn to live with new lungs.

But having my original lungs offers more of a guarantee to life than transplant does.  What I need to do is change my perception so that I can become more comfortable with my life as it is now.

I need to look at what I AM doing and focus on the positives there.  I need to step back and realize that I AM living my life right now, in preparation for when I can breathe again and do everything I have always wanted to do again.

I am a stay at home wife/mother who goes to graduate school and takes care of her health on a daily basis.  I am doing what I need to do now so that in 5 years I can do what I want to do then.  My life is not on hold yet.  My life is progressing different than anticipated but it is still progressing.  And I need to focus on THAT and not the what ifs.

Kalydeco could allow me to finish my degree and get a job before I get transplanted.  Or it might do nothing and I will still need the transplant.  But I have to continue on as if I am going to live forever and one day live and breathe with shiny new healthy lungs.

Sunday, May 6, 2012


Having CF makes making friends a bit more difficult.  I can't do the "normal" thing, make a friend and have it turn into something good.  I have to be careful because not all people want to deal with someone who has a life threatening illness.  And its difficult to start a friendship when you are not always able to be around.  I can't just drop everything and go out on a Saturday afternoon.  If I feel shitty I can't go.  If I haven't had a treatment in a while I have to make sure I do one before going.  Then there is the explaining why you can't do things, or why the friendship has to have limits.  Its just so frustrating.

I need friends up in MA, but its hard to make them.  I have never made friends easily to begin with and now I feel like its next to impossible to make them.

Saturday, May 5, 2012

Another Horse Post

How many times have I written about horses and getting back into riding?  Too many to count right?  Well sorry but here is another post.

I can't tell you how much I MISS riding horses.  Doing volunteer work has really been great because I get to groom the ponies once a week and I feel like I am getting used to being around the animals again.  But it still kills me when I see friends post show pictures.  I miss it.  I miss it so much it hurts.

When I was down in PA over this past weekend, I was able to get my riding stuff from the attic in my brother's house.  I put my helmet on and tried my chaps on again (though they were not even CLOSE to closing sheesh!). Its all I have left, along with the saddle in my basement, of my prior life as an equestrian.

I want to be back on the horse, feeling the movements under my legs, having complete control and feeling free. I can't wait till I am done with this whole being sick shit.  It sucks.  I want my life back.  I want to be around horses all the time and I want to RIDE.

Friday, May 4, 2012

Hospital Shopping

I haven't been out shopping for new things for hospital stays in a long time.  So after I dropped my step daughter off at the train station I drove myself to Target.

I needed some new tank tops and some under garments.  Luckily all were on sale. I also hit up the clearance rack and got a couple of cute, non hospital shirts.  I don't know about you all but I hate wearing small under wear when locked up.  I feel like I get so many more wedgies lol.  So I got myself some new boy shorts and a comfy bandeau bra that I can sleep in.  Right now I have been wearing a bandeau bathing suit top as my bra daily.  Sad I know....but straps on the bras and the under wire just constrict me too much.

And the other must get necessity was head bands.  I usually pull my hair back but it gets greasy fast and looks gross.  So I got a couple of head bands to hide the grease on the days I can't/don't want to shower.

Now just have to make it through the weekend and its off to club med for 5 or so days!!!

Thursday, May 3, 2012


Why is it that we look upon ourselves so much harsher than the rest of the world?  Why can't we be happy with the way in which we look?  Why must I stress myself out that I look gross when in reality I don't?

I have never dealt with these feelings before and I don't like them.  I feel fat one minute and then fine with the why I look the next.  I eat something now, that my old CF body would have thrived on, and feel disgusting afterwards.  Yet when I try to eat only healthy good for you foods my body craves the fat causing foods and it drives me crazy.  I can't win.

I could win.

I could tell my brain to STFU and be thankful I am alive and have a good BMI.  But we all know that won't happen.

Tuesday, May 1, 2012

Clinic Results

Clinic was pretty much what I was expecting.

I went from 1.08L to .95L (37%-32%).  So it is definitely an admission for me.  Luckily we are waiting till Monday so I can be home this weekend in case P gets a call.  But if my O2 sats dip low or I feel worse I need to just go right to the ER and be admitted that way.  I don't foresee any issues though.

I am actually worse now than I was back in January of 2011 right after the Colistin incident.  And those numbers were before my Albuterol treatments!  And the first one I did I stopped within a few seconds because it triggered a coughing spell.  Never had that happen before.  My airways are definitely not happy campers right now!

My weight is still high for me but it is still in range of where I have been before (56.7kg or 124.7lbs).  So I am not worried a whole bunch about that anymore.

I do need to call and reschedule my transplant clinic appointment.  I have been putting it off but I need to get back on track with that.  And also getting all the info sent to Lahey Clinic again so I can restart the pulmonary rehab program.  I am really hoping that because I am working out 4 days a week on my own they will let the rehab slide....but I doubt it.

My O2 study results had not been sent to her yet as of today either.  So I am hoping by Monday they will be in.  I kinda sorta do want my O2 back, but at the same time, its been cheaper not running that thing every night!