Roller Coaster....of Numbers

Another fun filled clinic appointment done and over with.

As per my usual course after stopping IVs I am down 6% with my FEV1.  I was 1.28L or 44% on May 23rd and I am 1.10L or 38% today.  Normal stuff and I don't sound or feel bad.  Maybe some more mucus, maybe some more SOBness, but nothing to ring any alarm bells.  I am going to start a 2 week course of Cipro tomorrow and see if I feel any better.  Either way, I will be scheduling an admission for the beginning of September so I will be all hunky dory for our wedding and honeymoon!

The next 2 weeks will be key however, as next week I am in PA with E for 8 whole days!  That is the longest time P and I have been away from each other since we started dating!  And the week after that I have an institute for school which is M-F 8:30am to 4:30pm.  Rough stuff with little time to sleep.  But then I get a full week after that with no kids so I can sleep all that time if I so desire.

Here is a picture of my numbers over the last year and a half:

You can plainly see the ones when I am on IVs and when I need IVs.  Up, down, up, down.  It is a roller coaster of numbers, which is highly ironic considering I HATE roller coasters!

I told her about my Spinning class and my need for O2.  She recommended it most definitely if I continue.  If I decide to modify and not push myself so hard then I don't need to wear it.  But if I want to get the most of it then I should push myself right?

So a relatively decent appointment.  I go back the Wednesday after Labor Day and we see if the Cipro helped any and also schedule that IV clean out.

A Fun Filled Weekend!

We had a great fun filled weekend.  On Saturday we did family day at Canobie Lake Park.  Its a small amusement park with water rides, regular rides and all the bad food you can eat.  We made sure to get in right when it opened so that some of the rides would have shorter lines.  Worked well.  I personally do not do rides and only went on a few (log flume, sky ride, antique cars).  Nothing of any speed or "thrill".  Fine by me I am not a rides person.

P, E, L and A went on just about everything that they could.  P is a nut and just loves rides!

This is the view from the top of the log flume before we dropped down.  Yes I screamed like a baby!

This is the view looking down from the sky ride.  I admit I was nervous on this too!

This is Un-tamed.  P, E, L and A went on this and I think they all had a blast!  L screamed  bloody murder and P looked like he was having the time of his life!

Today we went and finally picked up my new bike.  P and I got new ones last weekend but we had Toys R Us put mine together (P's was the floor model).  Honestly I would never let them do it again.  But hey, 18 speeds we never would have figured it out.  So instead we are going to have people who know what they are doing look them over and fix things.

After we got the bike, P, E and I went for a bike ride.  It was great!  I forgot how much work it is to pedal on a real bike not a stationary one in the gym.  Unfortunately I will need to wear my O2 for this as well.  After going up a rather small hill I felt my heart racing and like it was going to jump out of my throat.  Checked and it was 178!  O2 was 92% though so go me ha!  178 is way too high and I don't need to go into cardiac arrest on a bike ride.

It was a great exercise filled weekend and I am looking forward to a somewhat relaxing week with small fun things planned to do with E.

O2 needs with Exercise Class

Today the class was much easier and I was able to stand for 90% of the standing parts.  It felt great!

Downfall?

O2 was consistently between 86-89% :(

I need O2 during class.

I don't want to wear it in public at the gym yet.  I am not emotionally prepared for that....

UGH

And I need it during my home workout for the jumping jacks and buttkicks.

That I can handle, its at home.

***SIGH***

"I Get By with a Little Help From my Friends"

The Beatles were right on the money with those lyrics if I do say so myself!

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Sometimes we just need someone else to help us know that its OK to wonder....

Thank you for your beautifully written (as always) post Piper!

I hope that though I struggle right now with the choice of yes or no, that when I am facing the barrel of the death gun I will be able to make a choice.  And I know that choice will be the right one no matter which it may be.

6 Minute Walk Test Results

Today I had another 6MWT done.  I usually don't have them print up a sheet for me but decided to this time. I am glad I did as I never realized how much stuff was on there!

I walked 342m or 1122 feet in 6 minutes.  I am at 49% of other people my age (694m or 2277 feet).

My starting respiratory rate was 16 and my ending was 22.

My starting heart rate was 93 and ending was 132.

My starting blood pressure was 94/65 and ending was 115/71.

My starting O2 was 94% and lowest I went was 89%.

So all in all not a bad turn out for my 42% lung function.

Transplantation...Is it for me?

Lately I feel like I am hitting the old denial bottle quite hard.  Just thinking about transplant and all the tests I have to get done.  They sent me a list with every test I need done and when it is due to be repeated.  Its daunting.  Especially since I feel healthy and like I might not need to be transplanted for quite a few years.  

The test today, which I couldn't do, just really got me thinking.  If I can't handle that, will I be able to handle a cracked open chest and new lungs?

I just look at everything that needs to be done, all the recoup time, all the tests, medications, appointments and I wonder "is it REALLY worth it?"  What if I end up with shitty lungs again?  What if I reject fast?  What if I die in surgery?  What if...what if...what if?

The choice is mine right?  I know I have a family now, but I can say no right?

Maybe I need to step up my health game.  Maybe I need to kick it into high gear and work on staying healthy so I don't NEED a double lung transplant.  

Life was a lot easier when I was against getting a transplant.  Then again, I could actually breathe back then....

Panicking Amy

Well I didn't get the 24 hour pH probe done.  I freaked out.  I started crying as soon as I walked into the room and could not stop.  He sprayed the numbing stuff into my mouth and nose and I about lost it completely.  I couldn't go through with it.  I was a mess.  There was no way anything was being shoved in my nose.  And they can't give you anything to calm you unless it is pre-ordered by your doctor.

I had to have 2 tests done (that part was a surprise).  One was a quick 10 minute test much like the Barium Swallow test.  However, the tube is GINORMOUS!  It was the size of a dam worm!  OK maybe not quite that large but pretty dam close.  Its safe to say it was larger than the NG tube I tried to have placed.  I don't care if it was only going in for 10 minutes.  I knew for sure I would freak out.

The probe was a MUCH smaller copper colored tube attached to a device that would have been strapped to my waist.  I probably could have handled that being placed, but I was not sure how I would be once the numbing wore off and I was too afraid I would have a panic attack and rip it out.

I say this because I have a panic attack if I put a dress on and it gets stuck.  Seriously.  Panic attacks from a dress.  Why would I even consider this test?

Luckily there is another test that can be done in its place called the BRAVO test.  This one you are knocked out for the placement and you don't have to go back to have anything removed.  Its a small device glued to your stomach/esophagus that transmits information back.  Ummm HELLO, why was I not informed about this before?!?!  Friends had mentioned the test on facebook after I had this probe booked.  So I was aware I could have it done, if this didn't work out. I don't know why they don't give you that option.  Its ridiculous.  Instead let's have people be uncomfortable for at least 24 hours and even more so since you can not take ANY heartburn medications 5 days prior.

A wasted trip down to BWH, but oh well.  Now to go call the transplant team and schedule that BRAVO.....

UPDATE:
I called my transplant team and they don't like doing the BRAVO test.  So they are going to discuss it and decide.  I am NOT doing the probe so they either have me do this or I go somewhere else that doesn't require it.  And quite frankly, I know of a couple of patients who were transplanted here and didn't have it done because they were too sick to wait.  So ha!

Before Picture

2 posts in one day WOW!

I wanted to post my start picture for my 30 day-must-tone-by-the-wedding Jillian Michaels' Shred.

My gut will diminish.

Tomorrow I get SERIOUS about this.

Funky

I have been in a funk all weekend and I am not quite sure why.  I have some inkling why but its not something I can publicly discuss on here.  Let's just say some people need to start thinking about others before making decisions.  P and I are FINE, it is NOT him.

I also think I can't get out of my funk because tomorrow at noon I go to the endoscopy center to have the 24 hour pH probe inserted *queue horror movie music*

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I am not looking forward to this at all.  And I mean AT ALL.  I have had some bad dreams about it already. *sigh*  Hopefully it will be over fast and I can come home and relax when it is removed....on Tuesday.

The next two weeks are going to be SUPER busy for me.  This week I have 2 doctor appointments, finishing up and sending out the wedding invitations and menu tasting on Thursday.  Next week I have a CF clinic appointment on Wednesday, P's daughter has a psych appointment on Tuesday, we meet with the Pastor on Monday and that Saturday P's daughter and I leave for PA for a week.  And to top it off these next 2 weeks are computer camp for her so she is only out of the house from 8:30-12:30 instead of 9-4.  That really puts a damper on my alone time and I can only imagine how my mood will be after 2 weeks of that and a week in PA with her.  I have no patience and need ME time in order to deal with things.  At least I can admit my downfall right? :P

Spinning Class

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Ahhh, the fabled spinning class.  Today my neighbor and I decided to attempt this allusive beast.  And we did it.

60 minutes, 1L of water, and a drenched body later we emerged from the spinning cave.  Sore muscles, aching ass and a feeling of accomplishment!

It was rough work.  Not gonna lie.  You pedal hard, you stand up, you do one leg, then the next.  You WORK.  But it was great!  I wasn't able to stand up the whole time when others did, nor could I pedal like the rest, but I did it.  I worked my ass off.  And we are planning on going every Friday that we are able to.  I am kind of excited.  Its a great work out and I am looking forward to getting in better shape!