Thursday, December 20, 2012

Transplant and Cysts

This morning I heard from the transplant clinic.  I was not presented last week, but was this morning.  The results are what was expected.  I am too healthy to be listed right now.  Fine by me as I am not even 100% sure I WANT a transplant.  So this means that I go into clinic every 4-6 months to get looked over.  Any issues I encounter, any hospitalizations, any set backs, I need to let them know so they can add it to my file.

Today I also had my GI follow up to the colonoscopy and endoscopic ultrasound back in November.  Mostly good news. :)  OK actually its all relatively good news lol.  The 9 polyps removed from my colon were benign adenomas - cancer polyps IF left untreated for many MANY years.  She said there were 4 on the left side and 5 on the upper right side and that sides don't really matter as far as developing cancer.  But 9 is a lot especially for only being 18 months since my last one.  I was told I NEED to come back every 12 months at the most.  Looks like every Oct/Nov I get to clean my gut out.....yaaaaaay.....

The pancreatic cyst is still concerning to the docs.  I had thought it went from 1.5cm to 2.2 cms, but it was 1.2cms to 2.2 cms.  She said if I was JUST CF I would be told to have it checked every 1-2 years.  But since Lynch Syndrome can also affect the pancreas they are slightly worried it almost doubled in size in less than a year.  So while I am inpatient in Jan they are going to do an MRI with sedation (I can not do them because I have anxiety issues and they NEED one done so they are knocking me out lol) to get a better look at it.  She said they wanted to get a biopsy but its in an awkward spot.  The GI doc who did the tests is one of the best at Dana Farber and she couldn't get it so they need to go with the MRI and possibly surgery for a biopsy.  So after the MRI I am meeting with a pancreatic surgeon to, as she put it, cover my bases like with the transplant evaluation, I don't need it quite yet, but just in case.  Not overly concerning issues, but still issues that need to be followed up on.

There ya have it.  I am cancer safe for now, and hopefully after follow up tests I will remain so....

Monday, December 17, 2012

Another Soul Gone Too Soon

It hurts....

It hurts so fucking much.

Rhi is gone.  She passed away this afternoon.  She never got the transplant she desperately needed and wanted.  She never got to be the lawyer she wanted to be.  

How do you come to terms with the death of a friend or a family member?  And one that has the SAME DISEASE that will kill you someday?  

Its hard enough to watch a friend pass away.  Its hard to see your brother in law take his last breath.  But its even harder to watch when you know they are dying from the same disease that you have.  Its rough to say the least.  

Breathe easy Rhi, and Shawn, and all those that have gone before you.  It doesn't seem real. They all seem like a dream, like a joke.  But they are sadly true.  I hope life is better on the other side and you are tearing shit up with all those friends whom meet you at the gates.

Love you all.....

Saturday, December 15, 2012

Happy...and Sad

So very sad

A good friend of mine.  The one I posted about needing a transplant like yesterday, well she is not well at all.  Her heart is failing along with her lungs and they have told her husband she needs new lungs in the next 12 hours or there is nothing more they can do for her.

We are all hoping and praying for a Christmas miracle to come in the form of some new lungs and maybe even a new heart if they think that will help.

On the happy front, a fellow CF blogger Jess received her new life a few days ago in the form of new lungs! So excited and happy for her!

What does this all mean???


When you die, you don't need them anymore.  Why not be someone's hero and save their life?  Why not donate them to someone who needs a few more years with their loved ones?

PLEASE sign up to be a donor!  Click this link if you are in the US and register.  And tell your family members too.  They are the ones who have to sign the papers when you are gone / almost gone.

Thursday, December 13, 2012

CF Can Kiss My Fucking Ass

Today is the big day.  Today is the day I am officially presented to the transplant team.  But so much shit is going on I totally forgot until I was driving to class tonight.  I should call the coordinator tomorrow and find out if I actually WAS presented.  Then await my appointment in April to see what the outcome was.

On the shit front....

Its been a devastating few days in the CF world.

A friend of mine who was transplanted a little over a year ago is in the ICU on the vent and ECMO trying to fight pneumonia and rejection.

Another good friend of mine was transplanted just a few days ago, was doing great, sitting up in a chair and hours later re-vented and now on ECMO fighting pneumonia.

And the closest friend was hospitalized a couple weeks ago for a routine exacerbation but steadily declined.  They transferred her to Stanford in CA earlier today to re-activate her on the transplant list.  I just found out a few hours ago she was vented and her husband was told she has 7-10 on the vent to wait for lungs, before they have to de-activate her.  7-10 days.

I am just so done with CF.  I am so over it.  It's too much to handle.  I just can't do it.

So please, no matter what religious denomination you may subscribe to, PLEASE sending healing vibes to all three of these fabulous Cysters.  They all have husbands (one is engaged and planning her wedding) and deserve SO MUCH MORE time.

Wednesday, December 5, 2012

I need to have Patience and Faith...

I have some friends on Facebook that are old coworkers.  These are people I spent 40-50+ hours a week with prior to my health taking a dive and having to quit.  I enjoy reading up on their lives and seeing what they are up to now.

But at the same time I hate seeing how they are progressing in their careers and life and I am sitting here, idle, waiting for my chance to excel again.  And knowing that there is a chance that I may never work or accomplish my dreams ever again.

I miss the working life so much.  Some days I want to delete these people from my friends list so I don't have to see the advancements they are making, or the babies they are having.

But why should I do that?  And its not them, it really is ME.  I need to just get over my life and remember that each person is different and each person lives life differently.  This life is what is destined for me and no matter what, I can not change it.  I can't change the fact that I will NEVER have a baby of my own.  Or that I can't work full time right now because of my health.  I could work, I could spend every free second I have making sure my health stays stable, and I could miss out on my family.  Or I could continue on this path and have patience that one day I WILL go back to work, and that I WILL be amazing, and I WILL do all that I have always wanted to do.

I need to have patience and faith.....

Tuesday, December 4, 2012

Avoided Hospital...For Now

Today was clinic again.  Just to check and see if I responded to the Levofloxicin I was on for 14 days.  And surprise!  I didn't really.  I went from 1.09L to 1.14L.  So yes I did go UP but not much.

Dr D gave me sole say in hospitalizing me now or waiting until after the new year.  I opted for January 2nd.  I missed way too much school with the honeymoon and wedding to miss the last couple classes.  Plus we need to schedule the port placement, and if that can't be done immediately then we are looking at me being on IVs at Christmas and then not being able to go to PA to visit my family after.  So it is much easier to wait a month.  If something were to happen and I needed to go in now, I would call her.  But for now I am IV free for a little less than a month!!

Sunday, December 2, 2012


Oh the Holidays.  A great time of year to spend with family and friends.  I feel so blessed to have such a great family, new and old.

But with the happiness comes the sadness.  And this time I don't mean Shawn.

I mean babies.  Yes AGAIN with the babies.  Holidays mean cards and pictures of moms and dads with their new babies and their old babies.  And while I have two step children now, I don't FEEL like a mom.  I don't have that connection with them that biological moms get.  I want that feeling and I will never get it.  It makes me sad.

So I need to suck it up, enjoy the time with the step kids and stop dwelling on the not's.  My life is great.  My life is full.  My life is alive.

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 I challenge 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!

Wednesday, October 31, 2012

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?  :(

Sunday, October 28, 2012

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!

Tuesday, October 23, 2012

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!!!

Sunday, October 21, 2012


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

Friday, October 12, 2012

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.

Wednesday, October 10, 2012

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!!!

Monday, October 8, 2012

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 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.

Saturday, October 6, 2012

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 ;)

Wednesday, October 3, 2012

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

Friday, September 21, 2012

Insert funny title here

I haven't had a chance to update since I was discharged from the hospital.  It has been one thing after another.  So glad I am busy but I need some rest ha!

I got out on Monday night but didn't get to see the home nurse until Thursday morning.  My kidney's were not processing the Tobra well enough so we had to switch from dosing every 24 hours to every 36 hours.  Seems that has worked.  But because of this, I had to wait to have the nurse come out right before the dose to draw my trough level.  Hence the Thursday morning visit.

I spoke with the docs again about the port placement.  They said my next admission we will schedule it for the morning of it so that I can come in that morning, get it placed and get put in a room and start the clean out then.

Other than that I feel OK.  I had to stop volunteering though, and I am bummed about that.  Thursday was my normal day and I didn't think I was going to make it through.  I was dragging next to the ponies and they are slow to begin with!  I told the coordinator that if I feel better in a few months I would love to come back.  Right now with school, the wedding and the assistantship I am pressed for time and those 4 hours were wearing me down more than they should have been.  I am going to miss the ponies and my volunteer buddies :(

This coming Wednesday I have a clinic appointment so we will see just where I am health wise.  I should be back to base by now I would think.  I was going to do 20 days of IVs but I kinda want to be done on Wednesday.  Guess that will all depend on my numbers!

Thursday, September 13, 2012

Admission day 1...or is it now 2?

I was finally let into my room around 10pm last night!  The guy who was in here before me had to wait for his ride.  First he was leaving at 4, then 6 then 8 and finally at 8:45 he was picked up.  It was nice to be able to eat at home and be totally packed but it still sucked.  I had P drop me off at 8pm because he has work today and E was home waiting for Nana to get there.

I spent 2 hours in the waiting area of admitting but they were very accommodating.  More than once I was asked if I was hungry and if I wanted some meal tickets.  I was not so I declined them.  But it was nice not feeling totally forgotten and left in the dark!

When I was finally in and all settled they placed my IV.  It went in well but the nurse commented it was difficult.  Then later on (read 1:30am) they came to draw some labs and that took almost 20 minutes to get all they needed.  The first 2 vials went smooth and after that they dripped in.  My left arm is not what it used to be.

Fast forward to today and my PICC placement.  The Ativan and Benadryl just aren't cutting it anymore.  I am still 100% fully aware.  It took the PICC nurse 3 tries to place it.  She could get it in but it would not thread.  The third time she said "oh finally!"   I commented that I want a port but my doc won't let me and she replied "if I see him in the food store I will run him over with a shopping cart"! HAHA!  She told me I need a port that my veins are too scarred for anymore PICCs.  I agree with her wholeheartedly.  I asked her to write that in my chart so its documented.

A few minutes later the team visited and when they asked about the PICC I recounted what happened and pleaded for a port.  And would you believe it they agree with me!!!  They told me they will take care of Dr. D and her hesitancy to give me.  So looks like after this admission, and the wedding I will be getting my first port.  I am super nervous, but super excited to never have PICCs again.  OK I know I will probably still get PICCs at some point but at least it won't be 3-4 times a year.

Everything is going as normal.  I am getting Zoysn and Tobra again, and right now, as I type, I am getting some Magnesium pumped into me.  Apparently my numbers were slightly lower than they would like.  1.7 is the lowest and I am there, but they would like to see 2.0.  Okie Dokie.

That is about all there is right now.  I am sure my stay will be as uneventful as it usually is lol.

Wednesday, September 5, 2012

WOW Pretty Low Numbers Again!

Its amazing how you can be sick and not even know it!

I had clinic today and we knew going in I would need a clean out.  My numbers were down slightly last clinic and Cipro really didn't do much for me.  I am more SOB and my energy level is low.  I cough all the time, as usual but I mean really cough.  I have an admission scheduled for next Wednesday, the 12th.

Seems I am on a somewhat downward trend.  I get back up but my lows are pretty low!

Today I blew an FEV1 of .93L or 32%.  Last clinic I was 1.10L or 38%.  And the healthy clinic after IVs were stopped I was 1.28L or 44%.  And last time I needed IVs (May) I was at .95L or 33%.  Before that I was 1.08L or 37%.  See where I am going with this?

I go up and then come back down.  I go up and then I come back down.

Oh well....that is the nature of CF correct?

Today though I was completely overwhelmed.  I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow.  I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic.  I felt overwhelmed by the never ending appointments for CF and LS.  Bu constantly having to do this test and that test and go here and go there.  And all so I don't get cancer and I can stay healthy.

Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy.  Or I might only have 2 years.  I dunno.  Maybe once I hit the "dying" phase I will be more sure of things?  Maybe I will be more confused?  I dunno.  All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).

And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him.  I really miss my old clinic. I don't like going to a children's hospital.  I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait).  I don't like the traffic and the parking garage and the parking fee and well you get my point.  It was just one of those days ya know....

Friday, August 31, 2012

FREE Giveaway!

Do you want to win a FREE hat, scarf and mitten set for this upcoming winter?  What about a red / white / blue one to commemorate 9-11?

Well come on over to Facebook and like my page and you will be entered into the drawing on September 12!!!

Crochet Cyster's Crafts

We have 180 likes so far and the goal for this contest is 333 (my lucky number)!!!

Wednesday, August 29, 2012

Hormonal Imbalance

OK I don't really have a hormonal imbalance but I might in a few weeks. I have decided to once again stop my hormone replacement meds.  I just don't want that synthetic crap.  Instead I have purchased some herbal remedies that should help with the few menopausal symptoms I was not fond of (hot flashes, sleeplessness and vaginal dryness / tightness).   On my list of purchased goods was:

Flax-seed: great source of omega-3 fatty acids which is vital for heart health.  They help keep blood pressure and cholesterol down (I think I need to sneak some in the foods I make for P).  They also contain lignans which may help fight colon (yay), breast, and skin cancers and can help with menopausal symptoms.  They can also help clear up acne and help with mood.  So its an all around win for me with this one.

Red clover: contains a large amount of isoflavones which acts like estrogen in mammals curtailing menopausal symptoms.  It can also treat respiratory and skin problems.  Again here, two birds, one stone.

Schizandra berries: a Chinese herb reputed to have health benefits such as improved sexual health, skin beautification, heightened mental activity, respiratory support and improved body functions.   This one is mainly for my sexual health.

My goal is still to lose a few pounds and overall feel healthier.  I am giving the herbs till Christmas to see if they work and if not then I have my meds I can go back on.  But my fingers and toes are crossed that I don't need to!

Friday, August 24, 2012


Today I had an echocardiogram done for transplant evaluation.

First off it was so cool!  I got to watch my heart actually BEATING on the screen!  Took me a few seconds to be sure that was what it really was, but it was in line with the "duh dun...duh dun...duh dun" of my heart beat.  It was so small and I laid there for a while trying to figure out which angle it was. I kept picturing baby ultrasounds and how a baby would lay in the abdomen and how that looks....and well you get the idea.

Secondly I guess it wasn't THAT cool because I started to nod off....and did one of those "jump in your seats when you realize you are falling asleep" moves, only I was laying on my side....with the echo lady rubbing the device over my boob.  Ah well.  She asked if I was falling asleep and laughed.  I felt like an ass but hey they keep it dark in there and looking at my heart can only entertain me for so long ya know.

I was the youngest one in the waiting room by far.  I guess today was the older generation (see how I used that instead of old farts lol) day at the cardiovascular center.

I am feeling thoroughly overwhelmed at this transplant evaluation.  I have hit denial mode and just can't seem to find the energy to move forward with it.  My BRAVO test is scheduled but I need to move it because it falls on a day I will be inpatient, and they won't place it while inpatient (seriously PENN was so much better about this shit than BWH is sheesh).  Clinic sent me a list of everything I have to have done, and when, to keep myself on the list (active or not) when I am actually listed.  Key is getting everything up to date all at once so they can present my case and decide if I am a good candidate for lung transplantation.

But that is where I fall off the wagon.  Getting it all scheduled and completed before something else expires.  It's almost like I am sabotaging this before it even begins.  Kinda like all my old relationships HA!  If you sabotage it before it starts, then there is no disappointment when it doesn't work/happen right?  RIGHT?

I remember when transplant was a word that described sick people needing new organs.  It was a word that I NEVER thought I would ever use on an almost daily basis.  It is a word I NEVER thought I would think about constantly.  And it is a word I NEVER thought would cause me so much anxiety and fear.

I do plan on discussing my main concerns with the doctor next time I am there.  I need them to be aware of my concerns, and see if they are the same as theirs...i.e. cancer.  All this because of the threat of cancer.  All this because I am PETRIFIED to get cancer after transplant.  When I say petrified I mean like the kids in Jurassic Park when they are running for their lives scared.  Yeah intense I know.

Sunday, August 19, 2012

Fevers Still

Just a quick update from me.

My fevers are back again blah. I am so run down.  Sucks.  I even slept a BUNCH this past week.  Holding off for September 6th though so I am all fresh and cleaned out for the wedding (which is 2 months away today!!!).

Hopefully this week I can sleep some more, and get back into exercising and maybe clear out that way.  I don't think it will happen though.  IVs will most definitely be on my radar for the future.

On the bright side I have listed a few items on etsy again.  Check me out!  And if you have any friends having babies anytime soon maybe you could even purchase something homemade for them ;)

Crochet Cyster's Crafts

Tuesday, August 14, 2012


I never realized just how anxious I was until this past weekend.  And I didn't realize just how awesome a job my anti-depressant did to alleviate my anxiety.

Sunday I had a bridal shower to go to for a friend, her fiance works with P.  I was all hyped up to go, got dressed up in a new dress I bought, did my hair, put on some cool earrings and out the door I went.  Then I hit people driving like slow pokes....and it was much harder to find than I had thought from the map....I was now 17 minutes late.  And no idea when she was supposed to get there (though she did know about it, I didn't want to be walking in with her).  So I find the place, drive in the parking lot and see its SUPER small and there is NO ROOM left. And to top it off, the shower is RIGHT there, out in the open with everyone watching me trying to turn around.  And it hits me, I KNOW NO ONE at the shower except the bride.  My heart started racing, my palms were sweating more than usual.  I knew I would have to walk across the field to get to the pavilion, and I knew if I parked right away and walked up, they would know it was me who was turning around (yeah who cares right?  This girl does cause she is a mental case).  I drove around looking for some parking and settled on across the street in the grass with another car.  I sat there for a good 25 minutes before I decided I was too stressed to go and left.  I couldn't face walking across the field with 100 eyes that I did not know staring at me.

I haven't done something like that in over 4 years....before I went on Celexa.

Do I need to go back on it?  Most likely.  But the chances of me going back on it are slim to none.  I don't want to be on the meds anymore.  I hate having to be on the hormone replacement, but I have to if I want to continue to have sex (TMI?  suck it up lol).  I just never realized I was that bad before.

Saturday, August 11, 2012

Blog Header

Soooooooooooooooo, did everyone notice my new blog header picture?


Well check it out!

My good friend Josh over at Joshland made it for me.  Isn't he the bestest?????

Thursday, August 9, 2012

It Breaks My Heart

I have been putting off this post because I just wasn't sure how I wanted to approach it.  I was devastated at the news and it really hasn't sunk in yet.

I don't know if you recall 2 years ago (will be in November), me writing about a friend who passed away from CF leaving behind his wife and their dog.  I think I also posted about her Breast Cancer diagnosis on his birthday, just 6 months after he passed.  Though I checked my posts and I don't see one.  Maybe I didn't post specifically about it.  Either way:  (here is her blog)

On Gess' birthday, about 6 months after he passed away, she got the phone call saying she had stage 2 breast cancer.  She immediately began treatment for it and had her eggs harvested so when she beat cancer she would be able to have babies.  As time went on the cancer grew and spread.  It was later learned that she was stage 4, not stage 2.  It also spread to other organs.  I am not sure exactly where but by the end it was in her lungs.  She did everything she could to beat it.  She tried so hard.  And she never gave up on living.  She traveled to so many places, to visit family, to visit friends.  She made her memories.  She was told she had more time.  Then things went downhill fast.  She was hospitalized for almost a month.  She was going to go home on hospice and live out the remainder of her days at home.  Then things got worse.  They transferred her to a hospice facility to live for a few more weeks....then 24 hours after we learned this....she passed away.

Ugh.  It breaks my heart.  I can't even write this without crying.  She was so young.  He was so young.  Its one of those stories you hear that you want to ask if its a movie.  That nothing like this could really happen in real life because it sucks so freaking much.

My consolation is that she is finally back in her soul mate's arms.  She was absolutely devastated when he passed away.  She never had time to mourn properly.  She never had time to learn to live without him.  She had to struggle with cancer without the one and only love of her life.

It breaks my heart.

She is also living on.  Her corneas were donated to someone....which, ironically, is also what was transplanted from Gess.  Maybe the two people will meet and fall in love.....

I am glad she is pain free and in Gess' arms.  But it is so unfair she had to go that way.  Why did the universe have to send her cancer to put her back in Gess' arms?  Why couldn't she be struck by lightning or something that was quick and fairly painless?  She struggled and she suffered and she did so for no good reason.  She is still gone.  Gone forever.


Monday, August 6, 2012

Curve Balls

Sometimes life throws us on a course that we aren't expecting but that we need.

For 2 weeks I was up early to take E to camp (read 7am) and then off to the gym to exercise.  No time to nap though as she needed to be picked up at 12:30.  I did have a couple of days where I did get a break but they were towards the beginning which really does nothing for me.

Last week E and I were in PA visiting my family.  Again I was not getting much sleep with 3 kids who are early risers.  I napped one day out of the 8 there.  Plus we were in the sun most of the day or I was out partying it up (bridal shower and bachelorette party - pictures will be posted at some point).  So I am totally and completely worn out.

Then there is today, followed by the rest of the week.  Up at 6:30 to be in class by 8:30.  Today we were in the classroom for 8 hours.  The next 3 days we will be walking around archives in Boston and Salem.  O.M.G.  The walking is going to kill me.  I digress though.  By 2pm I was shivering and feeling completely achy.  I could tell I had a fever.  When I got home I took my temp....It is running between 99.3 and 100.1.  Nothing horrible but ugh!!!  One day.  I lasted one day before I got "sick".  I say "sick" because I know it is lack of sleep.

Besides completely running myself ragged the past 3 weeks I finally got my O2 study results back.  Drum-roll please.....I need O2 with sleep, even when "healthy".  And of course I haven't been wearing it so I keep forgetting to put it on when I go to bed.  Tonight I won't.  Tonight I plan on going to bed, oh, well, in about an hour and sleeping all night, with my O2.

What does this all mean?  Well it means it is a good thing I did not interview and get a new job.  I lasted 3 weeks on less sleep than usual.  3 weeks before I began running fevers.  3 weeks before I know I am too exhausted to do anything.

Thank you lungs for being shitty and making a wonderful few weeks so awful.

Wednesday, July 25, 2012

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.

Sunday, July 22, 2012

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.

Friday, July 20, 2012

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!


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....


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

That I can handle, its at home.


Wednesday, July 18, 2012

"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!


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.

Tuesday, July 17, 2012

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.

Monday, July 16, 2012

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.....

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!

Sunday, July 15, 2012

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.


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*


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

Friday, July 13, 2012

Spinning Class

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!

Friday, June 29, 2012

Transplant Clinic

Well I FINALLY had my transplant clinic appointment that I had to cancel back in February do to insurance issues.  Looks like everything is stable, but they want to present my case before August 1st to the team.  So that means I need to get a few tests done prior to that:

24 hour pH probe - test the stomach for acid re-flux
ABG - arterial blood gas - test the gasses in the blood
6 minute walk test - see how far I can walk

I also have to get another MRI of my pancreas done, but that can wait till August.  I also need another echo-cardiogram and regular blood work done in August.

We scheduled everything today before I left so I won't forget.  Hopefully they won't have any issues listing me and I can be put on the in-active list until I need to be actively listed.

It was all very surreal again today.  Talking about lung transplants and tests and my case being presented to the doctors.  I don't feel like I need a transplant right now so it seems so odd to be having this all done.  Its good though, I know that and I would rather have this worked up and only need to get some tests re-done (like CT, ABG, PFTs, 6MWT and blood work) every 6 - 12 months.  But to be talking about ripping my chest open to take out these wretched airbags and replacing them with ones that might actually work....well....its weird.


Wednesday, June 20, 2012

Everything Happens for a Reason?


Tonight in class I found out that I was awarded a research fellowship!  It is with my current professor for the fall and spring terms of this upcoming school year.  I can't tell you how absolutely STOKED I am about this! My professor told me about it in class tonight.  I have not gotten any official correspondence yet, but the names are sent to the professor for approval so he showed me the email and it is ME!  If I had decided to apply for that job AND gotten it then I would be screwed.  So everything works out in the end.

Here is the description:

Graduate Research Assistantships are designed to link a graduate student with a faculty member on a meaningful research project.  During the assistantship period, the graduate research assistant will work directly with a faculty member on a project, which may lead to a presentation at a conference, a joint publication, or other significant professional activity.  The assistantships are awarded to students who are fully admitted into a master’s degree program.  They are intended to encourage and assist superior students in pursuing their course of graduate study; to provide students with professional development opportunities, and to provide support for faculty research, scholarship, and creative activities.  The assistantships are competitive and are based on the requirements listed below.  The assistantship includes 10 hours of work per week at $12 an hour in the fall and spring semesters when classes are in session.  Assistants receive full tuition remission for fall and spring semesters when classes are in session, except for consortia, directed studies and theses courses.  The student is responsible for all associated course fees.

Sunday, June 17, 2012

Decision Made

Well as much as I was thinking that Wayne Gretsky was correct when he said "you miss 100% of the shots you never take", I had to accept the realization that I just should not apply for the job.

Believe me, I would love to.  But the truth is, I am not the type of person to just work somewhere for 3 months and then quit.  Even if I hate it I will stay much longer than needed.  If I were to get sick again and need to stop in 3 or even 6 months I would feel obligated to work twice as long and end up much sicker than I am now.

So for me, the choice to bypass this opportunity is the right one.  I can finish school without any worries.  I can concentrate on my health.  And in 18 months if they are still hiring or hiring again I can apply and see how it goes.  Even if I don't have my transplant by then.  But at least I can give it my all at that point and not have to juggle school, full time work and a family.

Its a tough choice but it had to be made.  I remember how long I struggled on deciding to stop working 30 months ago.  I struggled for over a year with the choice before finally agreeing that it was worth my while to do it.  I don't think I have that kind of leeway anymore with my health.

Oh goes on eh?

Thursday, June 14, 2012

Big Decision to Make

Today I decided to check out the design job scene online.  And I found a job I think I would love.  And they are hiring.  And I could finish my NCIDQ paperwork and actually get licensed!  (now to actually FIND the paperwork I started when I still lived in PA)

But what should I do? 

You all have seen me complain and whine about how much I miss working on here numerous times.  I would LOVE to go back to work!  I know I couldn't do it for years but maybe 12-24 months?  Just enough to get some money saved up to keep us from drowning when I get transplanted.  

I spoke with a friend who went from SSDI to working while on Medicare and I wouldn't lose my Medicare, just my SSDI which I could obviously live without if I was working again.  And I would be able to get back on it fairly easy since I wouldn't be taking more than 36 months off from payments.

But what do I do about life?  And school?  And volunteering?  And Major (our dog)?  And my health?

I remember that when I worked I had no life.  I couldn't see friends on weekends because I was so tired from working all week.  But I don't have many friends up here anyway and we stay home a lot on the weekends as it is. 

School I could put on hold if I wanted to.  Or just take one class at a time. I think I could handle it.  I have 6 years to complete the masters program and I know I won't be working for 5 years so I could complete it after stopping work again.  Am I OK with that?  I think so.

Volunteering would obviously have to come to an end.  I could deal with that.  I could always start up again when I stopped working again.

Major we could put in doggy day camp.  It wouldn't be too bad and he loves it there anyway.

Health....hmmmmm....that is a tough one.  I would still need to get IVs every few months just like now, but it would be more difficult to do when I am working 40+ hours a week.  I was getting sick all the time when I worked and was down to 4 days a week.  I doubt a new company is going to hire me for only 4 days a week.  Even if I did put the full 40 hours in.  

There is just so much to think about.  Should I send in my resume and just see if I even get a call back?  But if I do get a phone call, do I tell them I am unsure of what I want to do?  So so so so so much to think about!