Tuesday, November 27, 2012


If you are keeping up with my BRAVO mess I have some good news!

I spoke with the transplant coordinator today and they are going to let me skip the test until I am actively listed or until I am transplanted.  And then only if I have some reflux issues.  Which I probably will since I have reflux now without my meds.

But I am so glad to hear that I can be presented now!  December 13th I will have my file presented to the team.  If someone who needs to be listed immediately pops up to be presented and the case load is full, she will bump me to the following week.  I am OK with that since I don't plan on being actively listed just yet.  And as long as I don't have any sudden health scares I should be deemed too healthy.  Again, fine by me.  Better to get in there and get evaluated than to wait till I NEED it.

Very exciting and very scary.  To think that in 3 weeks I will finally get an answer to whether or not I can have a transplant....crazy.

Fingers and toes crossed....for what I am not quite sure yet...

Sunday, November 25, 2012

Not For Children - Hormone Blahs

If you remember, or if you don't, back in August I decided to forgo all synthetic hormones and try the herbal stuff.  I gave myself until Christmas to see if it would work.

Well here it is, 1 month until Christmas and I need to go back on the synthetic crap.  *SIGH*

With the exception of the honeymoon, I have had NO sex drive.  When I say no, I mean NO.  Sexy scenes in a movie don't even get the blood pumping.  It SUCKS.  My poor husband.  We are newlyweds and should be banging like rabbits, but I don't want to.

On top of that I am so miserable.  Maybe its stress, maybe its Shawn passing, maybe its the weather.  But whatever it is, I am a miserable bitch.  P will agree with me.  My patience is thin, my mood is grumpy.  I get short bursts of happy and then its back to miserable.  At least yesterday I decorated for Christmas and stayed fairly happy for most of the day.

I just need to go back to being me.  If it means I put on a few pounds then so be it.  I would rather be pudgy and fucking like a rabbit, than skinny (and really I only lost like 3 pounds) and miserable and no sex.

I can honestly say, and it pains me to say it, but I think I regret the hysterectomy.  Don't get me wrong, no period is WONDERFUL!  I can have sex 365 days a year and not worry about getting my period.  But if I have no sex drive than really who cares?  Its not like they can put it back in so I guess I need to figure out what to do.  I thought about talking to my PCP about it and getting a pill to give me a sex drive.  Then I thought well duh why not take the hormones instead.  Solves more than one issue right.

So there ya have it.  Tonight I will start back on my hormones and I will continue to take the herbal stuff too. Doesn't hurt and I bought a bunch of it!

Thursday, November 22, 2012

Bravo Disappointment

Where to start, where to start?

Shall I start last Wednesday when I got a phone call with a totally different time for my procedures than I had been told?

Shall I start on Friday when I finally talked to someone about the discrepancies in the times and was told a totally different time again?

Shall I start on Sunday when I actually began my prep for Wednesday's procedures?

Shall I start on Monday when I had to field a call that my health history doesn't allow me to do a phone pre-op and needed to come in mid-prep for it now?

Shall I start on Wednesday when those procedures where scheduled to go down?

Let's start on Friday..................

I finally received a phone call back from endoscopy about the discrepancy in the times.  I had been told the week before when everything was switched to Wednesday the 21st that my new time would be 2:15pm.  The phone call I received said 3pm.  When I spoke with the woman in endoscopy she told me 2:30 but I needed to be in at 1:45.  She also told me that I would get a phone call on Monday to do my pre-op screening since they were running slightly behind.  I said no problem.

Sunday I started my prep.  Yes SUNDAY.  4 days before anything was to be shoved in, up, down and around my body.  I have an extremely SLOW digestive system and this is the only way to ensure I am clean enough to get anything done on me.  So Sunday started my chicken broth, lemon water ice and lemon jello diet.  Yummy huh?  I also take 2 ducolax pills to get my system started.

Monday I receive a phone call from the SAME woman I spoke to on Friday.  She tells me that due to my health history I can not have a phone pre-op assessment and I need to come to BWH Tuesday morning at 9:45.  I nicely as I can after not eating anything of substance for 24 hours, that I am in the middle of my prep and that sitting in a hospital waiting room for 2 hours is not an option.  She tells me she will speak with someone and get back to me.  So she calls me a couple hours later and lets me know that they can get me in at 10am on Wednesday before my scheduled procedures and asks why I am prepping already.  Again I nicely as I can explain why.  I have also started my prep and finished 2 64oz bottles of apple juice with a total of 30 Miralax doses in them.  I am in the throws of "cleaning out."  I take 2 more ducolax pills to keep it going over night.

Tuesday is more of the same however, I am drinking magnesium citrate.  I don't feel it is working as well as I would like so when P is on his way home I ask him to get me another bottle of apple juice.  I added another 15 doses of Miralx to that and drank it for the rest of the night.  I take 2 more ducolax to again keep it going over night.

Wednesday morning.  I am nervous I am not as clean as I need to be.  I decide to use an enema for good measure.  Are you keeping track?  That is 45 doses of Miralax, 2 bottles of magnesium citrate, 6 ducolax pills and 1 enema.  Phew!  I was lucky enough to have my SIL drive me to the hospital and wait for me.  She is a doll!  Especially since we had to be there at 10am and my procedure wasn't until 1:45.  We kept each other company and got to chat, just the two of us.

So at 1:30 we get to the endoscopy center and I sign in.  They take me back shortly after and we get started on all pre-op in op that we need to do.  I change and we go over what I am supposed to have done that day.  But wait?  There is no BRAVO on the list!?  I explain that I was scheduled for it on the 28th but was called to move everything to one day (Wednesday) to make it easier on me.  She says OK I will look into this.  So right there I am a bit annoyed that things get screwed up.  I go into the bathroom one last time and when I come out there is this doctor having a hissy fit about something.  I immediately realize its ME and the BRAVO procedure.  I hadn't met the doctor doing my scopes yet, and now I am totally annoyed that she is annoyed.

The nurse comes over and gets me into a bed.  Well, my heart rate decides to sky rocket because I am so frustrated.  Resting its still in the 140s.  No one is too happy about this and all the deep breaths I take is only making it go higher.  They decide they need to do an EKG to make sure there is nothing wrong.  Great.  I try to explain that stress raises my HR and resting I am around 110-115.  EKG is fine, of course.  All I keep thinking is if they cancel this because of my HR I am not going to be happy!  They decide its OK since this is normal for me (they listened yay!).

Finally they wheel me into the room where the procedures will be done.  Everyone is great and the doctor (the one who was having the hissy fit) comes in.  I have calmed down some and she explains to me that there is NO record of my ever having been scheduled for the BRAVO in the system.  She is very nice, I should add.  She says she paged my transplant doctor, Dr G, and she said there is no need for me to have the BRAVO.  Um excuse me?  I explain to Dr L that I NEED this test for my transplant evaluation and that I am supposed to be presented in December and can not be without this test.  She said since there is no record of me being scheduled and my doctor said I don't need it, they can not do it.  Now it is entirely out of endoscopy's hands.  I am LIVID at the transplant center.  I tell Dr L I will be seeing her again soon.  Again, she was VERY nice and there is nothing they can do.  They can't just do a test on me that isn't OK'd by my doctor.

At this point they drug me up and I wake up right before they wheel me out and back into the recovery area.  All went well.  I spoke with Dr L again after and she let me know what they found.  There were 9 small polyps (all 1cm and under) in my colon that they removed.  My ultrasound showed that the cyst on my pancreas grew from 1.5cm to 2.2cm.  They were unable to get a biopsy of it due to the location.  She said they are slightly worried that it grew but that my GI doc will go over all my options in December when I meet with her.  She said they may have to operate to get it off, or biopsy or whatever.  So I have that to look forward to.  But I will get the result of the polyps in my colon when I see her as well.  Other than the growing cyst everything went well.  I was clean enough to see everything so my absurd amount of prep actually worked!

Here is the size of the polyps in my colon, the original size of the pancreatic cyst in January and the size it is now.  And a dime for reference.

So there you have it.  I sent an email to the NP at transplant clinic and I hope to hear back from here on Monday.  I told her I was not happy and they need to work on their communication up there.  Confrontations are not my style but I am sick of this run around shit.  Someone needs to figure things out and I am so furious this got fucked up.  Being presented in December might not be an option now, and I suffered for 5 days without ANY antacids for no reason.  But shit happens and hopefully they fix this.

Happy Thanksgiving everyone!!!

Tuesday, November 20, 2012

Thankful Thanksgiving

Josh over at Welcome to Joshland posted a great post today about being thankful for what you have:

"On Thanksgiving and everyday, I challenge you to do more than just give thanks. To do more than just write it on your Facebook page, on your blog or say it aloud in front of others. I challenge you...like I challenge myself...to wake up and look around the place you call home. To examine the relationships you cherish and the experiences you've had and UNDERSTAND how quickly it could be gone. How quickly YOU or SOMEONE YOU LOVE could be gone from this earth. 

I challenge us all to GET THANKFUL so we can all GIVE THANKS far grander than we ever  have."

I have decided to take Josh up on his challenge.  However, I am doing it on my blog (Sorry Josh!!!).  But I promise to also be thankful in the real world, were it truly counts.

So what AM I thankful for?

  • Modern medicine.  Without such things as colonoscopies (ahem beware this weekend, an update on said testing, getting done tomorrow, will be posted), VEST airway clearance devices, or Albuterol, I may not be here today.  Everyday when I strap that Vest on and suck down those aerosols I am thankful that I get one more day to live.  I get one more day to see my family and watch my kiddies (both step and niece/nephews) grow up.  And I get to know that all the tests I need to be sure I am healthy and will continue to live, are available to me.
  • Shawn.  Yes I am thankful for Shawn.  I may have only known him for just under 4 years, but my life was forever changed.  Not just because he introduced me to Peter (though that is a HUGE part), but because he showed me how to LIVE with CF.  I am thankful I got to know him, and be a part of his life and his family's life.  And I am thankful that I can continue to be a part of his family's life through my husband.
  • My family.  It goes without saying that I wouldn't be here today without them, but I am going to say it anyway.  My family has been a huge support for me, for everything that I have done.  Whether it was going to college, 5 times, moving across the country, for a week, or marrying the man of my dreams, they were there, by my side.  
  • My husband.  I couldn't have picked a better life partner than P.  He is just amazing.  He doesn't get turned off by CF, or want to run away.  He was there through that hell of a honeymoon, by my side making sure I was OK.  He supports me in everything, be it school, CF, or just life in general.  I know he has my back and it is a wonderful feeling.  I am thankful that he allows me to go to school, to finish my degree while I wait to go back to work.  That he doesn't make me feel like a "burden" on him and that he loves me, no matter what.
  • My health.  Say what?  Even at 38% I am thankful for my health?  Dam right I am!  The other day when I was driving home from school (I had to go during the day for something) and I saw an old man at a stop light, standing there with his walker, waiting for the light to change.  As I drove past him I thought "I should turn around and help him across the street."  I didn't though, and yes I wish I had the courage to stop and do it.  But if I HAD the courage I would have been ABLE to help him across that street.  And for that I am thankful. (anyone else watch Tosh.O and totally read that last line in his voice?)
I could continue on with what I am thankful for, but there isn't enough ADD medicine to hold everyone's attention out there.  So I will leave you with those five.  And they are in no particular order either.  Just the way they came to me.  

So I continue Josh's challenge to be thankful and truly understand what being thankful means.  And for you to do the same thing.  Cherish those memories and those "bad" holidays spent with your family.  Because one day they will only be memories and those you never want to forget.

Happy Thanksgiving my friends!!!

Wednesday, November 14, 2012

Post Honeymoon Checkup

Today I had clinic to check up on my lungs after our little episodes in Florida.  Not as bad as I had assumed they would be.

I blew 1.09L, 38%, down a bit from 1.21L 6 weeks ago but still better than I had assumed they would be.  I am still wicked SOB with exertion and the more time after a treatment, the tighter I get.  Of course, this PFT was done 2.5 hours after my morning treatment so it really isn't a true indication of how I am.  But it is for the mornings!  We avoided the hospital until at least December 4th.  I am going to do Levaquin for 14 days and hope that it helps some.  I already had an appointment set up for December 4th so we are keeping that.  If I am worse, or even the same, we will discuss hospitalization and port surgery.

We went over all the issues I had in Florida.  She is not convinced that it was a true kidney infection.  Based on where my pain was, and the fact that ALL my labs, except my white blood count, came back normal, she isn't quite sure how it was my kidneys.  She thinks it was pancreatitis.  Given that I don't drink on a regular basis and that alcohol can cause pancreatitis to flare up, its a dam good possibility.  Either way I feel much better and she has all my information from the two ER visits.

After my clinic I was supposed to have a full PFT set done for my transplant evaluation, but apparently the lab flooded and we had to reschedule for next week.  This meant I had 1.5 hours to wait around for my ENT appointment.  That was the fastest appointment EVER!  He shoved the thing up my nose for 30 seconds, declared me inflamed but clear and sent me on my way.  Works for me!!!

Now next week shall be an interesting thing.  The 21st I was supposed to have my endoscopic ultrasound and the 28th I was supposed to have my BRAVO placement and colonoscopy/upper endoscopy done.  Luckily they called me last week to change some things around.  Instead of putting me under two weeks in a row they are going to do EVERYTHING on the 21st.  Phew that is going to be a looooong procedure!  I hope they give me plenty of meds to keep me under!  Unfortunately I have to start prepping on Sunday night for Wednesday's procedures.  That's OK.  We have two bathrooms in the house LOL!!!

Once those procedures are done next week I will be officially presented at transplant clinic and they will discuss my case and decide where I need to be.  Most likely they will deem me too healthy for the time being and I am perfectly content with that.

Enjoy your Thanksgiving everyone!!!

Saturday, November 3, 2012

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"!!!


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!