Finally Home

Well we made it home Thursday night into Friday morning.

I am feeling better now than I did when I flew down to Florida so that is an improvement.

Of course on the plane we had a bit of a "mishap".  I was drinking lots of fluids to ensure that my kidney infection would not flare up again, so towards the end of the flight I had to pee really really bad.  I knew I would never make it till we landed and got off the plane.  P got up to use the restroom so when he returned I asked if I could bring the O2 concentrator in the stall.  He said there was enough room, but I decided to just leave it at my seat.  We were in row 2 and the restroom was literally 6 feet away.  I figured "no problem"!!!

HA!

Like I said, I had to pee really really bad.  So I peed for what seemed like 4 hours (more like 1 minute) and started to feel really bad.  I could feel my chest starting to tighten up and my heart starting to race.  Whether it was disorientation from lack of O2 or anxiety I don't know, but I was frantically trying to locate the TP.  I decided against washing my hands and I lumbered out of the restroom and back to my seat.  I threw the O2 on and my oximeter and desperately tried to inhale the luscious oxygen.  My O2 read 78% and my HR was over 170.  I felt like I was going to pass out.  I cranked the O2 up to 3L (I could have gone to 5L but I was a mess and not thinking right) and gasped for air.  I'm not going to lie, I was a bit scared.  It took a few minutes for my O2 to go above 85% and about 20 minutes for my heart rate to go below 120.  I was finally able to recover to pre-bathroom numbers and I settled back in my seat.  But I was shaken.  I felt completely drained and totally helpless.

All I could think about was if I hadn't brought my O2 letter (can't wear it on board if you don't have a letter from your doc) or if I hadn't had the altitude study done.  I could have died on board.  How scary is that?  The whole bathroom episode was probably no more than 3 minutes and I felt like I was going to die.  There is no way I would have survived 3 hours.  Its crazy scary to think that my lungs are that bad that only a small dip in O2 concentration can cause so much havoc.  It really shook my confidence in my health.  Not that it was awesome to begin with, but I had the "wear O2 when you sleep because you hover around 89-90% but don't notice a difference when you don't wear it" attitude keeping me afloat.

Now I have the weight of not vacationing anywhere faraway until after I get some new lungs.  I'm stuck on mainland USA or at least the East coast.  How sad is that?  I know I know, people have it SO MUCH worse, but it still fucking blows.  We were supposed to go to Hawaii for our honeymoon and plans got derailed.  We NEVER would have made it there.  My lungs never would have survived .  That thought depresses the shit out of me.

But I am very thankful that I made it home in one piece and that we were not affected by hurricane Sandy.  My prayers are with those who were devastated by her path.

I have a ton of doctor appointments and procedures coming up over the next few weeks so November will prove to be a very busy blogging month!

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!!!