Honeymoon I would like to Forget

I don't know how to even describe this honeymoon.  Its supposed to be the best vacation of your life.  Its supposed to be filled with romance and happiness and sex.  Instead its been O2, ERs and medications.  There has been sex don't worry about that.  That could possibly be the culprit of my latest issue.

Sunday night I started getting super short of breath and feverish.  You can see from this picture that my lungs were not happy campers.  We had visited P's family during the day and went to Downtown Disney that night for dinner and to get some souvenirs.  I had a hard time getting up the stairs into Planet Hollywood but I made it.  However, by the time we left I was gasping for air.  This was taken when I stopped to catch my breath.  Not good.  We kept going because I refused to leave without stuff.  Of course, every store we went into I felt like I was somewhere else.  Totally disoriented and couldn't think straight.  We purchased the one thing I was not going home without (something with our names on it and the year to commemorate this happy occasion) then P got the car and picked me up.  By the time we got back to the hotel I was feverish.  Luckily I didn't spike too high and only ran about 100.1.  I was achy too so I did my nebs and went to bed.

Monday I woke up and I felt better.  Sucked on my nebs again and we decided to go to breakfast and Walmart to get a movie.  We figured Tuesday we could go to Hollywood Studios for one more day of Disney fun.  I was really lethargic but my fever was gone.  I had stopped the prednisone on Saturday night so it made sense I was going through some withdrawl.  They didn't taper me down.

I hung on the sofa the rest of the day while P did things around the hotel.  I was worried I hadn't been pooping right so I dumped some Miralax in Gatorade and drank it all night.  My fever started to come back later in the day and I took some Motrin.  It wasn't helping and it eventually spiked at 102.2.  I was a bit nervous so I emailed my doctor.  It was late though so I knew I wouldn't hear back from her yet.  P went and got me some Tylenol and within 20 minutes my fever was down.  However, I started to get this pain in my abdomen.  It felt like gas pains so I popped a few gas-X and went to bed.  By 5am I was awake with horrible pain.  The gas-X wasn't working and my back was hurting now too.  I assumed from laying around all day.  It was like an inner tube around my center.

My fever was gone and I felt totally normal, besides the pain.  The Miralax hadn't worked either so I was starting to worry I might have a blockage.  So we decided to hit the ER again.  Luckily there was no wait at noon on a Tuesday.  I got right in and they gave me some Dilaudid for the pain.  I had a CT scan done again and blood work.  The doctor came pack with a double kidney infection.  Not just one kidney, but BOTH.  The prednisone most likely weakened my immune system and help lead to this.  

So now I am inpatient at Dr P. Phillips Hospital in Orlando getting IV fluids and IV antibiotics.  P is at the hotel and might go to Disney today so we don't waste all the tickets.  

Me?  I just wanna go home.  I am so over all this.  Its been hell.  I can't stop crying now.  I was good until last night.  Then its been waterworks central.  I just wanna go home.  I don't want to be in some foreign hospital with people I don't know while my husband is in our hotel room spending a night alone.  I want to spend our last night of the honeymoon together.  

I want to scream.  At least the view is nice right?  :(

Honeymoon Extension

Looks like we get 3 extra days of our honeymoon!  Thanks to Hurricane Sandy we are "stuck" in Orlando until Thursday night!  We can't complain though.  And this has been one heck of a start to our marriage lol.

On the CF side of things, my lungs are slightly better.  I am not wearing my O2 all the time anymore thankfully.  But my heart rate is still high and my O2 is still lower than normal.  I have been using the O2 at the parks but tomorrow I plan on being "normal".  I get so frustrated with the stares and the looks and the people tripping over it!

I feel OK, but not great.  Once we return home I will make an appointment for my clinic and then port surgery and then my admission.  Get it all done with right!

ER on the Honeymoon!

Apparently I joined the honeymoon ER people.

Since my last round of IVs I have been short of breath and needing 3-4 neb treatments a day.  Usually after IVs I have 2 weeks after where I am worse but then I get better.  Unfortunately I didn't get better.  So the week before the wedding I was praying I would make it through till we got back from the honeymoon and I could call my doctor and see what was up.

As you can see from the title I didn't make it through.  What pushed me over the edge was the plane ride.  I wore my O2 the whole time.  However, as we were boarding the plane I was super tight and checked my sats and I was at 84% with a HR of 157!  We boarded close to first so I sat down cranked on the O2 to 2L and sat back to relax.  Once I was more stable and had normal numbers I turned it down to the 1L I was told to wear.  About halfway through the plane ride I had to up it to 1.5L.  I was checking every so often to make sure I was OK so when I saw I was hanging around 88-89% I knew I needed to up it.  When we landed I took the O2 off and we deplaned.  Walking off the plane set me back so far.  I barely made it off when we had to stop.  I checked my O2 again and it was 85% with my HR at 163!  I needed O2!  So I hooked up, we hung out at the terminal for a few minutes then off we went, me wearing O2 amid stares etc.  Not a fun way to start the honeymoon.

Once we got to the hotel, we unpacked and settled in.  I could feel a fever starting and I was at 100.1.  So I took some Motrin and hoped it would go away.  It did, but it took a while.  I emailed my doctor during this time to see if she could get rx me some prednisone.  But she wanted me to go to the ER to make sure I didn't have a pneumothorax or pulmonary embolism.  So Monday we did our running around and headed to the ER around 3pm.  I caused quite the stir!  My O2 was obviously low - only 89% though - but enough for them to be surprised.  I explained what was going on and they got me in as soon as they could - 3 hours waiting.  Can't complain really.

They finally take me back and hook me up to heart monitors and blood pressure cuffs and O2 monitors.  My blood pressure was through the roof!  136/85 which is super high for me.  I usually run 105/65!  RT comes in and gives me a neb treatment (finally it had been like 8 hours!), the doctor came in to talk to me and I gave him my CF docs info.  So he got in touch with her and they came up with a game plan to treat me.  X ray came in and I got a CT scan with contrast.  My O2 was good until the CT scan.  Resting I was at 99% since I was sucking down the nebs with O2.  But once they did the CT scan, my numbers plummeted.  I think the dye irritated my lungs.  My blood pressure finally started to come down too, to 118/73 last time they checked.

this was right after they brought me back from CT scan.  I had no O2 and hadn't moved in like 5 minutes.  So basically resting.  That's not normal for me.  And you can see the resp rate at 30.

Nurse came in and hooked me up to 2L of O2 and this was 15 minutes later.  Still not great but better.  And the RR came down to 17.  By the time I left I was at 94% thankfully.  Hr hasn't gone down much yet either. 

I wish I had gotten my PFTs done!  I am curious what they were. I feel like I do when I take inhaled antibiotics and I know they knock me into the low 20s.  And that was when my FEV1 was up in the high 40s so who knows what it would be being in the high 30s, low 40s to begin with!

I was given a bag of IV Cipro, an rx for 500mgs twice a day, and 20mgs prednisone twice a day.  We picked them up today since we didn't get out until after 10pm and all pharmacies (hospital and CVS) were closed already.  I was told to rest and take the meds.  They knew it was my honeymoon so they said relax as much as I can.  They suggested a wheelchair for Disney and we agree!

Today....well today I am feeling better.  The tightness isn't as bad and my O2 is slightly better.  I am hanging around 91% but my HR is still high.  I have had one prednisone dose so far so hopefully by tomorrow they will kick in.  We didn't do Disney today but plan on it tomorrow.  We just relaxed by the pool 

So that has been the start of our honeymoon!  We think all the bad stuff has happened so the rest will be fabulous!!!

MARRIED!!!

It's official!  I am married to the best man in the world <3

Breathe Easy Shawn

Tonight we lost a great man.  Perhaps even a best man.  Yes a best man.  Our best man to be exact.  P's best friend.  The one he grew up with and got in trouble with.  He is no longer fighting and struggling and suffering.  But Gosh dammit I want him back!  Just a little longer.  Its so not fucking fair.

Please send love and prayers to my sister in law and niece as they start on this journey of learning to live without their husband and dad....and for P as he learns to live without his best friend.

Today is my Birthday!

Wow 32 years old!

Sometimes I still feel like a kid, or a teenager.  I wonder if that is true for most people.  I know P says it all the time and S and T do too.  But I wonder if those big corporate bigwigs or the surgeons in the hospital still feel like kids?  Do they look around and think "OMG I am an adult wtf?"

I can't complain about my age though right?  I mean, I am 32 and still kicking with my original lungs!  Thank you CFF for that one.

Happy birthday to me and happy wedding day in just 9 days!!!

I can't Get Out of My Own Way

In 11 days I am supposed to marry my best friend.  But I feel like I can't get out of my own way.  I am a fucking mess.  My mind is everywhere but where it should be.  I want to be at the hospital to be there for my friend, but I can't because I have so much shit to do....

I have 2 graduate classes I am taking, my graduate assistanship which requires 10 hours a week of research, and planning for the wedding.

I didn't fall asleep until a little after 3am this morning and then at 3:30 my dog woke me up to go outside.  Then it was almost 4 when I went back to sleep.  P's alarm went off at 6:10 and I sort of woke up....enough to remind him that E doesn't have school today before he went to wake her up (she has an alarm clock but he checks every morning to make sure she is awake).  Then I fell back asleep till he left a little after 7.  Woke up again at 8 and then at 9 when my alarm went off.  I feel like I could sleep all day but my mind won't shut off.

Last night while trying to fall asleep I decided to head over to my friend's blog.  I re-read every single post she had on there.  I don't know if she has a back up copy but I plan on saving them all....I don't want them to be lost if she decides to delete her account one day....it walks you through her life with her hubby who has CF.  The one that I am desperately praying for.  The one that has me in such a mess I can't even think straight....or stop crying.  He's not dead yet...he could pull through.  This last crap shoot could work and he could pull out if this and he could get better and we could all breathe a sigh of relief.

But what happens when he does pull through this?  What's next?  There is still an infection in the lungs that has caused all this in the first place.  Then there is the underlying issue....the cancer.  What about that?  He can't get chemo, and hasn't for almost 2 months, because it is killing his lungs.  Those bright shiny pink lungs that have sustained him for almost 4 years.

God this is just so fucking awful.

IS there more they can do?

When things aren't going well health wise we have a tendency to blame the doctors.  "They could do more."  "How do they not know how to treat this?"  "Why aren't they making things better?"

But in reality, unless you are at a totally incompetent hospital, chances are they ARE doing everything they can.  They really DON'T know how to treat this.  And they CAN'T make things better.

All they can do is try their damnedest to make things turn around but its not their call that is the final one.  Ultimately it is up to the body they are trying to heal.  And maybe, if you believe, up to God.

I ask you all to continue your prayers for my friend.  Things are worse, much worse and we are hoping he can fight this infection and continue on his road to recovery.  But if not, if he finds himself at peace then I pray that he is in no more pain and that we can find peace in that.

My New Vest!!!

I got my new vest yesterday, and the jacket today!

When I opened the package I thought for sure the adult Medium was going to SWIM on me!  But I reminded myself that I was measured for it.  And what do you know, when I put it on it fit great (blown up of course).

I got the purple one to spice things up lol!!!

noooooow toooo maaake suuuuure IIIIII uuuuuse iiiiiit daaaaiiiillllyy ;)

Doubled up the Postings

Well since I didn't update after lasts clinic I will double up this time.

Last week I was up to 1.26L 43% FEV1 which was way up from before the hospital at .93L 32%!  But we kept the PICC in another week just to see if I could get up a little higher.

This week I hit 1.21L and 41% so down slightly instead of up.  However, I did an albuterol treatment right before I left the house last time so I was only about 90 minutes post treatment whereas this time I was over 2.5 hours post.  Yes that time difference will cause that much of a drop in my lung function.  That's OK though, they still pulled the PICC!

After PFTs I was informed I was getting an altitude test done!  Say whaaaaaaaaaat?  They can now test you to see if you require O2 during a plane flight!  How cool!

We started out in my exam room, then were kicked out to another consult room.  But then we realized there was no O2 hook up so it was off to the PFT lab room!  Once in there we were informed the IT guy needed to do work on the computer.  Was I OK with him being there?  YES!  Let's just do this 20 minute test and get it over with please lol!

here is the big boy that supplies you with 15% O2!  Room air is 20-21% O2.

all masked up!

Within 2 minutes of being hooked up I dropped down to 88% and he stopped the test.  We put the O2 on me at 1L and tried again.  I got as low at 91% but that was OK.  He tried dropping me to .5L just to see and I almost immediately went to 89%.  So I got a letter to wear 2L of O2 during the flight to Orlando for our HONEYMOON!   16 daaaaays baby!!!

And please don't forget:
I am not at liberty to post publicly who I need love and prayers for, but he needs them folks.  Lots and lots of them.  They are for a very close friend of mine who is fighting for his life right now.  And when I say fighting, I mean it.  <3 <3 <3

Asking for some Love and Prayers

I am not at liberty to post publicly who I need love and prayers for, but he needs them folks.  Lots and lots of them.  They are for a very close friend of mine who is fighting for his life right now.  And when I say fighting, I mean it.  <3 <3 <3