Saturday, December 31, 2011

Ringing in the New Year!

2012 is sure to be filled with a ton of excitement. P and I get married in October, then go on our honeymoon to Hawaii.  My brother turns 30 around Thanksgiving so we are going to celebrate it with my family in PA. I am continuing my Master's classes (thanks to the disability department at school for getting my financial aid sorted out). Many new babies and weddings this year for friends and family.  Plus any exciting things that may happen along the way.  I am looking forward to a new year filled with exciting times and new adventures.

I have set some resolutions for myself for this upcoming year.  With no pressure though. These are things that I need to work on either way so I am adding them to my resolution list.  

1. Use my Wii fit to exercise and get my exercise age down from 44 to something closer to 31. I want to make sure I am not on O2 24/7 when I walk down the aisle to marry the love of my life.
2. Eat healthier foods, and cook more so the whole family eats better.  We all need to eat better and stop with the processed junk foods.
3. Pay more attention to world happenings. I am ignorant to what is going on in the world. The news always depresses me but then I don't know anything of importance.

As I ring in the new year tonight with my soon to be hubby I reflect back on the 2011 year.  So much happened! P proposed to me (by far the most exciting!). I started grad school.  We had our first family vacation together. We got a dog. I started the transplant evaluation process. My family got to visit me and see my new home.  P bought a new car. I got my hysterectomy.  My afghan won 1st prize at the local fair.  And that is all I can remember right now.  There were many little moments through out but these are the most memorable.  Unfortunately not everything was happy. We lost many CF friends.  The greatest lost for me was Bree.  I still miss her terribly and hope she is enjoying her time with those she loved and lost before her.  

I hope everyone has a happy and healthy new year and takes whatever life hands them in stride.  There will be good times and bad times but through it all we will press on.  May you all be safe this evening!!!

Sunday, December 25, 2011

Wednesday, December 21, 2011

Gut Troubles

The past few weeks I have been having some gut issues.  I initially thought it might be Celiac's (runs in the family) but we are trying something else first.  I have been really bloated, worse than normal, and it comes on even if all I have is a small cup of OJ.  Not normal.  I have also been having bathroom issues that I won't go into detail with on this public of a place.

Today at clinic I got an X-ray done of my abdomen and am getting tested for C. Diff.  The X-ray showed no blockages but a definite fullness.  As in stuffed to the gills, need to do something about it fullness.  So tomorrow I get to spend all day trying to empty myself out so that I can enjoy Christmas dinner and not want to explode, literally, after my first bite.  My fingers are crossed I only need the one day since I have a lot of food shopping to do on Friday to prepare for dinner on Christmas day.

Other than that my PFTs were slightly up (40% vs 37% last time) but I requested a round of IVs prior to starting class on the 19th.  I go in for my endoscopic ultrasound on January 12th so we are going to start IVs then as well.  There should be no issues with me being out to start on time.  If I feel a lot better after my mini clean out tomorrow I might see about just making an appointment for that week and seeing if I really need to get IVs.  Who knows, a clean gut might help the lungs out.

That is all my bloggie friends.  Hope you all have a very Merry Christmas and Happy New Year!!!

Monday, December 5, 2011

Crochet Sale for the Holidays

I have a few pieces of inventory I am selling on SALE for the holidays.  If you are interested just post under the picture of the piece.

Crochet Cyster's Crafts

Plus it will help us pay for our wedding!!!

Friday, December 2, 2011

Insert Catchy Title Here

I have been a miserable, hostile bitch the past couple of weeks and had no desire to blog so I apologize.  Besides you probably would have blocked me if you could have seen what was in my head!  We lowered my Wellbutrin dose to 150mgs so I would stop getting nauseous, and it helped, but I got violent. Not physically, but verbally and in my head.  So once I figured out that was the culprit I stopped!  Now waiting to get back to normal.

Wednesday I had a very busy day in Boston.  I started with CF clinic.  My weight is up, my lungs sound fairly clear, but my inflammation is wreaking havoc on me still.  Last appointment I was 50% FEV1 (fluke but still) and this time I was 37%.  Part of that was because I had to avoid any duoneb or symbicort before my PFTs at transplant clinic after CF clinic.  Shhh I did about 3 minutes worth of my duoneb at 7am so I could at least function somewhat.  My guess is I am about 42-43% based on my SOB and overall feeling healthwise.  So we decided to put me on 2 weeks of oral Cipro and I go back the week of Christmas to see if I have improved at all.

After clinic it was off to get a full set of PFTs done and a 6 minute walk test for my transplant evaluation.  PFTs were uneventful, just like usual lol.  The walk test I started off slow so I could maintain my pace the whole time, but I ended up having to slow down about halfway through.  My O2 wasn't too bad at least.  I dipped to 88% at one point, but since it was reading my HR at 71, we weren't sure how correct it was.  So 90% was written as my lowest sat for the walk.  I have no idea how far I walked, as I didn't ask.  One thing I found interesting was my BP before the walk was 99 (top number I don't remember the bottom number) and 129 (again only top) after.  That's quite the jump!

After that I had a 90 minute reprieve to eat lunch and relax till I had to go get my bone density scan done.  Since it has been almost 6 months since my hysterectomy, it was time to get scanned and make sure I haven't started to loose any bone mass.  We shall find out in a couple of weeks!

Other than that, nothing exciting to post about.  Only things I have left to do for my evaluation are my last shot for the Hep B vaccine, dentist appointment and the 24hour PH probe.  That one I am not looking forward to!  Tube down my nose in my stomach for 24 hours....yay......

Tuesday, November 15, 2011


Tis the season I guess!  Every time I turn around on Facebook someone else is announcing their pregnancy.  Don't get me wrong, I am thrilled for my friends and family, but at the same time, I feel that pang of jealousy.

I thought having the hysterectomy would have made my reaction to babies and pregnancies much harder to deal with, but I have noticed no change.  The only real difference is that I no longer think to myself that maybe it wouldn't hurt to have a baby of my own.  Now I know that possibility is gone, so I no longer think it.  But it doesn't make it any harder on me, if that makes sense.

I see these women, some girls I went to school with or worked with or knew through other friends, having babies, posting pictures of their families and the smiling kids, and it makes me hurt.  I knew these women when they were just kids themselves.  It is strange seeing them with families, with adorable babies in their arms, with their proud husbands by their sides.  It makes me want that for me and Peter.

I know I will have a step daughter soon, and I know she calls me mom already, but it is NOT the same.  I don't have the same love for her that a mother has for her baby when she holds them in her arms for the first time.  I don't have that special bond, that connection that makes motherhood so precious.  I don't get to have my son/daughter hold my finger for the first time, or smile at me for the first time, or hear momma for the first time.  I missed out on all of that, and it makes me hurt.  Not sad, hurt.

These feelings don't surface very often, thankfully, and usually don't stay for long......

Monday, November 14, 2011

Paracord Bracelets to Help a Friend

Today I received my paracord bracelet I ordered from a wonderful friend.  She makes and sells this beautiful pieces to help pay for her double lung transplant she had a few years ago. I ordered mine in purple and green to show support for Cystic Fibrosis and Organ Donation.  I can't wait to wear this out in public and have people ask me about them!

Beautiful aren't they????

If you are interested in purchasing on (or more) see her website Here.

Saturday, November 12, 2011

Please Vote for US!

Peter and I have a chance to win $5,000 for our wedding and when you vote you can win a $500 Michael's gift card :)

Please help us make this wedding super special!!!

Tuesday, November 1, 2011

Slight Update - Nothing Exciting

Sorry for the lapse in posting.  I can't say I have been busy, I just haven't been up to blogging.

My PCP and I decided to stop the Wellbutrin, restart the Celexa until my stomach settled then try a lower dose of Wellbutrin.  So tomorrow I will be trying the Wellbutrin again, but keeping on the Celexa for a week to see if that helps.  If neither helps with the nausea then I will have to decide if I want to stay on a reduced dose of Celexa and deal with the side effects, or to try to ween off of them altogether.  The latter of course opens me up to crazy mind games and bad moods again.  However, I am in a much better place than I was 4 years ago when I started on the meds.  So perhaps I will be OK weening away from them.  Only time will tell, as the saying goes.

Last week I had my follow up transplant appointment to discuss all the testing I had done.  I didn't get a chance to meet with the NP since she had an emergency that morning so I am meeting with her this Friday.  But I did get to see nutrition and the social worker.  Everything seems great so far.  My weight is stable and at a good place.  I did mention that the Celexa has played a huge part in my weight stability recently and that I will probably be going off of it.  If this happens I will have to work extremely hard once again to keep my weight up.  If I get below 17.1 BMI then I would be deemed too thin for transplant.  All that I really need to do is get my teeth checked out and start pulmonary rehab.  I think I am going to wait until Christmas break to begin that though.  It is 3 days a week and right now with my grad class I know I won't be able to handle them both.  But if I am already doing the 3 days a week when next semester starts I can work class into it.

That is about it.  Health has been stable, I guess.  Preparing for winter and the cold season.

Wednesday, October 19, 2011

Anti-Depressant Woes

My PCP and I decided to switch up my anti-depressant.  Some of the side effects of Celexa were starting to get annoying.  I was ale to deal with them at the 20mg dose, but when we upped that to 40mg, they become much worse.

So far things seem OK with my mood.  I seem a bit happier.  She did warn me that some people experience manic episodes or anxiety.  So I might be experiencing some mania.  That's OK.

Unfortunately I am also experiencing some of the not so pleasant side effects, such as sleeplessness and nausea.  The nausea is the worst.  I can deal with some restless sleeping, but feeling sick to my stomach for a few hours a day is just blah.  Yesterday was the first day I really noticed it.  Sunday I felt a little nauseous but it passed quickly.  Yesterday however, I ended up laying down to try to get it to pass.  I had gotten up at 6am (woke up and couldn't get back to sleep) so I thought maybe that was the issue.  That didn't work so I had some ritz crackers and plain white rice and I felt much better!  Seemed I needed some food in me.  Today I am trying that again, but with a bagel and butter.  So far its not working.  I might have to whip out the white rice again today.  I also noticed that it seems to come on at the same time.  Yesterday it was around 10am and today it was just a little before that.  I might try taking it in the mornings and seeing if that helps any.

Anyway, that is it for me.  I have a meeting with the transplant team next Wednesday to go over everything so I will make sure to post what happens!

Saturday, October 15, 2011

A Beautiful Fall Day for Pondering

Today I sat out back watching my dog sniffing around and digging in the dirt.  I was on the last step of the deck stairs, comfortably dressed in sweats and socks.  The cool breeze felt wonderful on my face.  I sat there admiring the leaves changing, thinking how pretty they looked against a steel gray sky.  This is the reason I chose October for our wedding.

Then my mind drifted to how I felt physically.  I took a somewhat deep breath (for me anyway) and let it out slowly.  I could fill myself up, apparently halfway, according to the PFT machine.  Inside I could feel the rumble of some mucus.  Totally different than only a few days ago when I was crystal clear of goo.  My exhale had a hint of crackles in it.  I lasted a whole 4 days off of IVs before the mucus came back.  But I don't mind.  You see, I got over a week of clear, unobstructed airway inhaling.  I didn't hear crackles, I didn't feel crackles, and my doctor said I sounded amazing.  That was the best part.  I sounded amazing!  Me, going through a transplant evaluation sounding amazing!  50% of my airways were working.  How awesome is that, and considering I don't think I have ever been above 80% it is REALLY amazing.

However, this 50% and the 50% I was at 3 years ago feel entirely different.  How so I bet you are wondering? Well its not just a number.  Yes, the number itself is important for many reasons, but it really doesn't paint a great picture of how you feel.  The only thing that is similar is my coughing.  This type of cough I have had forever.  Sometimes it is mucus filled and other times it is entirely inflammation.  But either way the cough is there.  The differences are a much longer list....

Energy level - now I NEED 10 hours of sleep to function and not be miserable.  Then I was sleeping 5 maybe 6 hours a night and functioning like a champ.

Lung pain - it was almost non-existent 3 years ago.  Today I am always in some sort of lung pain.  It varies from just barely there to OMG where is the Motrin.

Mucus - I used to rarely cough stuff up.  It was there sometimes but it was very difficult to get it up.  Now (notwithstanding this resent clean-out) I can cough up goo almost daily.  Before green scared me.  Now it is a color I am used to seeing.

Exercise - though I couldn't run a mile, I could dance all night long, with a few breaks for coughing fits and some rest.  Now even the thought of dancing all night makes me want to sleep for a week!  Also the need for O2 with exercise is new from this last 50%.  Yes I did monitor my O2 and though I don't dip far I still go into the upper 80s, sometimes lower (like class on Tuesday when I walked in my O2 was 84% lol).

Travel - Loved it and it didn't bother me at all.  I could travel all the time and I didn't need to rest up like I do now.  It takes me a few days to recover from traveling now.  Whether its plane, train or car I am exhausted after visiting family and friends.  Mainly because of lack of sleep which is in point number 1.

So you see, I might be at 50% lung function right now, but I feel more like my baseline of 40%.  I guess on October 26th we will see what I am at by then, as that is my follow up transplant appointment.

Tuesday, October 11, 2011

Ever Wonder When Up Might Turn Down?

The past few days have been a whirlwind of ups.

Saturday we went to the venue and put the deposit down and officially picked our wedding date.  It felt great to be able to make such a huge decision!  Sunday we went to the Topsfield fair and I saw my afghan on display with a beautiful blue ribbon hanging from it. I won first prize in my crochet division.  I was stoked!  It totally made my day.  Monday was my 31st birthday (yay for another year!), and my soon to be sister in law, niece and step daughter went wedding dress and bridesmaid dress shopping with me.  We had a blast!  I think I even found THE dress!  We had margaritas afterwards to celebrate and they were delicious!  That night I got an email from my college saying I had been officially accepted into the graduate program.  I was floored and totally NOT expecting that!  I was told I would need to take some classes and get more academic referrals in order to be accepted.  So to receive that email totally took my breath away!

Then today the shocker!  Yes there IS more....I hit 1.47L, or 50% with my FEV1.  SAY WHAT?!?!?!  Yeah that number is higher than I have had in like 3 whole years.  Amazing for me!  I feel fabulous and look great.  Now I just have to hold on to that wonder number until I walk down the aisle.

Being the realist / pessimist that I am it makes me wonder when the downhill will start.  It has to start at some time right?  I can't go up and up and up can I?

Don't worry I am not sulking and waiting around for it to happen.  I am thrilled with what HAS happened since it seems to me its been a while when so much has gone my way.  I plan on finding a way to embrace my new found healthy numbers and live more.

I am very very pleased with this all!!!

Monday, October 10, 2011

I am OFFICIALLY a Graduate Student!

Congratulations!  You have been admitted to the School of Graduate Studies at Salem State University.  Your acceptance is a tribute to your credentials and potential for success, and we hope you join our dynamic learning community.

Its OFFICIAL!  How awesome is it to receive that on your 31st birthday :)  fabulous present indeed! :)

Friday, October 7, 2011

Wedding Date Picked

We picked the time, place and date!  October 19th, 2012 at a great hotel right by us.  It is going to be awesome! Tomorrow we go to put the deposit down and I have already signed the contract.  I was giddy with excitement last night when we made the choice.

Now on to the details.  My favorite part.  And to celebrate my 31st birthday on Monday I am going dress shopping!!!!!  Yay!

Wednesday, October 5, 2011

A Friend Needs Help with a Vest

I may have blogged about this before I don't remember.  A friend of my friend's has bronchiectasis and has a vest she has been using almost 3 years.  This entire time she has been fighting with them to cover it.  They refuse.  Her doctor and social worker have sent letters to the insurance company explaining she needs it in order to breath.  Their response: she has a husband who can do chest PT on her and therefore doesn't need the vest.  As everyone knows, the vest allows us to have independence.  We don't rely on someone else to do our chest PT.  Insurance doesn't understand that.

If any of you know of foundations or organizations that can grant her money I would love to hear about them.  Or if anyone has a vest they are no longer using and want to get rid of I am sure she would be willing to pay for the shipping.  Please send me a face book message if you have any information that can help.

Thanks in advance!

Thursday, September 29, 2011

Such is the Life of a Shitty Lung Patient

There are days when I wonder why I am sitting in a hospital room getting tests done for a double lung transplant evaluation because I feel great.  I feel like I could walk to China and back.  Then there are moments when I go to the bathroom, walk out, start coughing and need 15 minutes of lying on my bed to calm down some, that make me realize why I am here.  Its those moments, which are closer together now, that have put me in this spot.  I may feel wonderful at 10am but at 5pm, after 3 treatments, I might want to rip these airbags out myself.  Such is the life of a shitty lung patient...

Wednesday, September 28, 2011

New Video

Just a video with me chatting on what has been happening in here.  Enjoy!

Monday, September 26, 2011

You Know you Need a Transplant when...

The x-ray tech says "wow you are sick aren't you?"

Then he proceeds to show you your scans and explain things.  I was thrilled!  I haven't seen my lungs in years!  Holy whiteness!  A bunch of spiderwebs all over and a big pocket of air in my tummy.  He said I probably need a good burp (or a fart ha!).  He was also very excited that I am here for the evaluation work up.  He told me best of luck and he hopes I get many years out of this (you and me both!!!).

I had my right heart catherization this morning.  I was expecting to be sedated at least slightly, but I got nothing. Only some meds to calm my lungs down so I didn't cough.  In all honesty the procedure is not that bad, in hindsight of course.  They numb your neck, drape it and put your legs up.  You feel pressure, much like a picc insertion and I could hear the threading of the monitor.  As soon as they stuck me to start, the water works started.  I felt no pain but emotionally I must have been holding it in.  Its the first time I have really cried since being told about the evaluation.  I remember them calling out numbers and then I would have to breathe in, exhale and pause.  So I can see why you can't be sedated at all, now.  If they had told me that from the get go I would not have been so "ahhh" about it all.

That is the only test I had done today (besides chest x-ray and sinus ct scan), but tomorrow I will get everything else out of the way.  I have started my IV meds already and hopefully will be home by Friday so I can get back to my fiance!

Friday, September 16, 2011

Fabulous Article About 3 Amazing Cysters

The Fight of Their Lives

Check out that wonderful article.  Its about 3 amazing Cysters and their lives with CF.

When you are done with that, check out Piper's Blog!  She is featured in the article.

Thursday, September 15, 2011

Doubling up my Transplant Stay

Wednesday I had my follow up clinic appointment to see how the Levaquin worked on me.  I went in all excited because I felt great!  My SOB was down slightly, I knew I had gained a pound or two, I had a bit more energy.  So I was expecting to see 40% at least!  Imagine my surprise when my first blow was 34%, 1.01L!!!  I was floored!  My second attempt was 33% .98L.  I was able to get 1.05L 36% on my 3rd try so I was just below where I was the visit before.

We decided to couple my transplant evaluation on the 26th-27th with the beginning of a clean out.  So I will stay a few extra days to start the IVs then come home on them.  I was already going to miss my 3rd grad class so I am not too put out by this.  And when I show up with IVs in my arm, she won't be able to get mad ;)

So that is about it here.  Nothing to really report.  I do plan on doing a video from the hospital about the transplant tests and the stay so stay tuned in 2 weeks for some new YouTube postings.

Sunday, September 11, 2011

10 Years but Never Forgotten

For a few weeks now I have been wanting to write a post about today.  It was such a defining moment in our lives.  One that will forever live on in our hearts and minds.  One that we will tell our children and grandchildren about.  One when they say "do you remember where you were when the twin towers were hit?"

The answer I can give is:

At work.  I was 20 years old and had just graduated from college that June.  I was still working at my mail processing job while I waited for something in my field to come along.  It was Tuesday which tended to be a slow mail day.  I was sitting at the machine with my partner when one of the women came in and said one of the towers had been hit by a plane.  My first thought was "wow what a bad pilot!".  Then came the words I will never forget "the second tower was just hit".  Then I knew it was NOT a bad pilot.  Something was happening, something very bad.

We all stopped working and turned the radio on to listen.  I don't remember much of the radio announcements or anything like that.  I do remember one of the women running home to grab a TV so we could watch it.  This was before smart phones and instant news feeds (BTW saying that makes me feel old).  When she returned we sat back and watched.  We watched as the feeds came in about the pentagon and flight 93 in PA.

Through all this I thought to myself that my brother needed to leave the country.  He needed to sneak away to Canada to avoid being drafted because I knew that we would not just let this happen.  I knew there would be a war.  I am thankful there was no draft.  I am thankful my brother stayed.  Not that I wouldn't have supported him but as any sister would be, I was afraid he would die serving his country.  Though a great honor, its still a loss.

Soon after we were dismissed and sent home.  The rest of the day I sat on my sofa watching the news reports come in.  As the towers began to fall I was in shock.  You could see the people running away.  See the dust and debris flowing like a tsunami on the war path.  You could hear the screaming, the chaos, the terror in the voices of those reporting.  NYC looked like a dust pile on the screen.

The images from that day are seared in my head.  I can close my eyes now and see the metal standing up in the rubble.  I can see the firemen walking on the debris.  I can see President Bush standing there with his hard hat on giving a speech.

Afterwards, I decided to make a scrapbook with all the stuff I could get from papers.  I even wrote a few pages out about what happened.  Below is one part that to this day still tears me up:

"I will now go on to a much sadder note.  Yes there is one.  Think of all the children that were orphaned or lost a parent in a matter of one hour.  I personally did not know anyone there but C knows a boy who might never see his father again.  She told me how at school a boy was called to the principal's office from her class right after the second tower was hit.  The boy was a trouble maker so the other kids teased him as he left.  When he got to the office he was handed the phone.  His father was on the other end.  He had called to tell his little boy that he loved him and he didn't know what was happening.  The boy returned to class to get his things and was greeted by the kids asking him what kind of trouble he had gotten into.  The boy responded by saying his father was dying in the World Trade Center and he didn't know if he would see him again."

Here we are 10 years later, still fighting the war; Bin Laden is dead; Saddam is dead.  Life has moved on, but the memories of that day will NEVER BE FORGOTTEN.

Monday, September 5, 2011

Happy and Exciting News!

P and I are ENGAGED :)

He asked me Sunday night in bed. It was very sweet and very romantic. And I am the happiest girl in the world! I don't want to give details because they are special and intimate, but just know that I can't stop smiling.

Here is a picture of the ring! Now its time to plan a WEDDING!!!!!!!!! <3

Saturday, September 3, 2011

Are You Being Listed?

Hello readers! I need your help.

A friend of mine is about to be listed for her double lung transplant. She really wants to talk to some other people who are currently being listed, but not just evaluated. Her and I chat but I am still far away from the actual listing point.

If you are at this point and might want a new friend, send me a message via Facebook please. She and I will be grateful! <3

Sunday, August 28, 2011

My Daddy

My friend Josh over in Joshland wrote a very touching story about his father.  It made me think of my daddy and some great memories I have of him.  One in particular that stays with me and makes me smile is this one:

When I was in 7th grade my mom and her boyfriend at the time got job offers in Atlanta GA, which they decided to take.  It was a new experience and we were going to pack up and move down south.

At this point in my life my parents had been divorced a good 10 years or so.  Every other weekend my brother and I would go up to my dad's to visit.  He would pick us up on Friday night and drop us off Sunday afternoons/evenings.  I was a very shy child and since I didn't really grow up with my dad, I was nervous around him.  I remember getting flowers on Friday nights from him, trying to bribe me so I wouldn't cry.  There was a guy (he is still there too) that sold flowers out of a bucket right next to the train station.  We would stop and he would get them for me.  I think I loved my dad, but I wasn't really sure about him.  I was 3 when my parents split up so I don't have any memories of him living with us.  Given this history, what happened when we decided to move 800 miles south was shocking.

I remember it clearly.  My dad dropped us off that Sunday night.  I think it was to be the last weekend we spent with him until Christmas (when we came up and spent a week with him in Vermont).  I remember the house, the green sofa next to the front door and sitting on the arm of it while we said good-bye.  Then out of nowhere I started bawling my eyes out and telling him I didn't want to leave him.  Much like in the movie the Patriot when Mel Gibson's little girl finally talks to him and starts sobbing for him to stay.  That scene always makes me think of that melt down I had with my daddy.  I can remember hugging him tight and crying.  I was 12 and finally realized how much I did love my daddy.  And since that point he has been my daddy through and through.  I love him to pieces and can't imagine life without him.

We may not talk all the time, but I know he is there.  I know if I needed anything he would be here.

Saturday, August 20, 2011

Something Taboo - Death

I wanted to write about something that most people seem to hate to talk about - Death. So many people are afraid to die, and based on their religious or spiritual beliefs, there are many reasons for this. So based on my beliefs I want to talk about it.

I must first warn against any religious conversations starting. Remember this is MY opinion and my beliefs. So please keep that in mind when reading through this blog post. And also, I am not anywhere near death it is just something I have been thinking about lately.

I am not scared at all to die. Rather, I am scared for those left behind.

When I pass away all my dreams, goals and desires will end. I will have no regrets as I won't know anything after the time my body takes its last breath. However, those left behind will feel the sorrow, the pain, the shattered hopes. They will know I didn't do what I wanted or that I never got to see things I wanted to. They will live with the regrets, if they do, not me.

My niece and nephew will remember me and the times we shared together, but will it be enough? Will they regret that I didn't live closer and spent more time with them? Will they be mad I passed away.

I like to think each and everyone of us goes to Heaven and can look down on those we left behind, but I don't think it is an actuality. I know that sounds crazy. Believing they are watching over relieves some of the pain. Believing I will see my grandparents, Maggie and friends after I pass is something that makes me smile. But I don't think that happens. If it did, then wouldn't I have regrets? Wouldn't I be sad watching over my niece and nephew, not being a part of their lives anymore? So while I like to think it does happen, I also don't want to think it does. Because then, my regrets can continue, my sadness over not being with my family long enough will be stronger, and I may continue that depression from earth into heaven.

So instead I think that when we die, we die. Maybe our souls float away and go somewhere that the rest of the souls are. But maybe we don't have any idea what or who we were. Maybe we are just a bunch of old souls hanging around, waiting to be placed in a new body. I have no idea. And now my post has gone totally off track lol.

So to end this little off course ramble...To me death is an end a total end for the deceased, while the survivors must carry on, remembering the good and bad of the deceased. Death is "easy" for the one who passes.....

Wednesday, August 10, 2011

Clinic Appointment

As I thought my FEV1 dropped some. Not as bad as I had been expecting, but then again it was only 3 hours post treatment and 10am. My weight is down 5 pounds, which was to be expected from the hysterectomy. My FEV1 is around 36% which is down from 43% last time. Certainly not the lowest I have been, but down from baseline.

The course is to do 2 weeks of oral Levaquin and see how I feel after that. My next appointment is on September 9th, but she said if I get back from my vacations and nothing has changed, I don't feel any better, then to call Tuesday after Labor Day and they will set me up in a room to start IVs. So I am hoping I get some relief from the orals so I can make sure I am able to get to my first grad school class on September 13th! And then to my overnight evaluation on September 26th (I was able to schedule it for 2 weeks later since it would have interfered with my first class).

Here are 2 pictures from today's appointment:

The first picture shows my numbers for the past year. You can see how much I fluctuate. The second picture shows my fluctuations on a graph, which really shows how I am.

Saturday, August 6, 2011

Some relief please!

This Wednesday is my clinic appointment and I am looking forward to it like no other.  I think I am due for some IV antibiotics.  Going into my surgery I was healthy and I am glad I was where I was.  But coming out on this side, I just can't recover those days where I couldn't cough much and it pooled in my lungs.  I am curious to see just what my FEV1 has dipped to.

The shortness of breath is bad.  The need for at least 3 treatments a day is strong.  And my energy is non-existent.  This past Friday I had my 3rd dance lesson and I coughed the whole time.  I actually had to explain to my instructor I have a lung disease and that I am not contagious, nor about to keel over (we hope lol).  About 30 minutes into the 45 minute session I was done, but I forced myself to complete it and then passed out on P around 7pm for a quick power nap.  Literally I was laying on his arm lol.

Today we went car shopping and it completely drained me.  And we only visited 2 lots!  Happy to say the second lot we purchased a vehicle (Mazda CX-7).  So we had to hang around to do all the paperwork.  I was just so tired I could have curled up on a bench and slept for hours.

I will be sure to post an update on Wednesday after my appointment!

Wednesday, August 3, 2011

My First Transplant Appointment

Today was surreal, but not really an emotional day for me.

When we first walked into the clinic and I saw the “Lung Transplant” sign on the wall I got that burning sensation in my eyes that I might cry. But I blinked them back and proceeded to check in. Because I had quite the entourage with me, P and I stayed in the lung transplant waiting room (I was masked up) while my family stayed in the adjoining one.

Right around noon I was told I was going to need to leave the clinic because there was an emergency appointment coming in and we were infectious to each other. She took my number down and we all went to lunch in the café. We were able to return to the clinic around 1pm and were lead into the viewing room to watch a 30 minute video on lung transplants at B&W. It was very informative for my family, and somewhat for me. A lot of the stuff they talk about I am blessed to know already from my extensive online support community. When the video was over we all headed into the waiting room, together since we were the only ones in there at that point. I got a nice surprise then!

A woman who had been in there earlier, also wearing a mask, came over and said I looked familiar. Turns out she reads this blog! So hellooooooooooo!!!!! ***waves energetically*** It was really nice to meet one of my readers that I am not familiar with. It made me feel really great that people out there do read my stuff.

The rest of the appointment was just a physical exam followed by a question session. We went over my history and the Lynch Syndrome issue. I have been cleared for a transplant, as far as they are willing to do it. Apparently I have been the talk of the conference room for a few weeks trying to decide if I was too high a risk to be a recipient! This could be a fun yet scary experience, being the first here to have a double lung transplant while also dealing with a high risk probability for cancer. After chatting we decided to proceed with the evaluation process. On September 12th I will be admitted for my overnight stay and get a majority of the testing done. Some of the follow up tests like dental exams will obviously need to be done outside of the hospital. Luckily I don’t need pap smears or pregnancy tests though.

It was nice to get in and get things rolling. They are aware that I don’t feel I am in need of being listed as of right now but that I do want to start the ball so that if I get sick fast I am not struggling. They agree completely with my choice too.

Since I have officially started the transplant evaluation process, be sure to look for more updates and YouTube videos.

Thursday, July 28, 2011

Blogger Challenge!!

A great bloggy friend posted a challenge for us fighting chronic illnesses. So here is my challenge response:

I think that our generation - the 20+ year olds - with CF have it much different than the "newbies" being born today. Our parents weren't aware of as much, there wasn't as much known, the medications were different, the treatments were different, things were just plain different. However, we are still here, living, getting older, having babies and transplants. So somewhere along the lines our care transitioned over to the "new" care, but did it happen in time?

When I was younger I was beat on by my mom. I know I was supposed to do Albuterol with .09% saline as my nebulized treatment. I ran around like any normal kid did, only I coughed and hacked the whole time. And I ate like a pig. But my lung function was never high. Looking over my chart I have never been above 80% and really I don't even know if I made it that high. As far back as I can remember, being in the upper 50s was my thing. Maybe I would have been higher if I had been more compliant as a teen. But as my friend mentioned in her post, when you don't notice a difference its hard to continue on.

My medications didn't make me feel better. If anything they made me feel worse. I got shaky and coughed - which at the time I despised! I wanted that "normal" teenage life. I got better as I got older, especially after my first hospitalization at age 18. But I didn't truly become compliant until my mid-twenties. Then I discovered how hard life was without my medications. Compliance wasn't so much about helping my lungs live longer, it became helping me to breathe and live my life.

I sometimes wonder if I had taken all my medications the way I was supposed to from diagnosis on, would I be facing a transplant evaluation? Or would I still be working full time and pushing myself just as hard? I will never know, but I do know I don't regret one thing I did, or did not do. I lived those years of my life as I wanted. I complied with myself. If that sends the doctors to say no you can't be transplanted then I will deal with that. But I doubt it would. I am compliant now. I do my nebs, I take my pills, I do my vest and I exercise when I have the energy. I cough up the goo when I need to. I go on IVs when I need them. I listen and I am proactive. I have changed. People can change.

Diseases are very unpredictable. They can change at the drop of a hat. They make their own rules and they don't listen when they are screamed it. If someone does what they are supposed to do 24/7 they are still going to face the "true" disease. Maybe it will be pushed back a few years or maybe it won't. But no one knows that at the start. No one knows what their life is going to be - terminal illness or not. Should you be compliant? YES. But you need to figure out what compliance means to YOU. Do you allow yourself to miss a treatment here and there because of life? That's fine. Do you skip treatments daily and probably only do a few during the week? That's not fine - that's not compliance. Compliance is doing the best you can.

Now I pass the challenge torch on to my bloggy friends. Here are the "rules":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Thursday, July 21, 2011

My Pathology Report

I am so glad I am not a doctor because the language used is mind boggling!

My incisions are healing up nicely. They don't look bad and they are so tiny you will barely be able to see them when I am all healed!

There were only 4 issues found out of the 6 organs removed. Really not too bad and 2 were nothing to be concerned about.

On my cervix was some metaplasia which I have had before. It can lead to dysplasia which are pre-cancerous changes. I have gone through all those procedures when I was found to have dysplasia about 5-6 years ago. Again nothing to worry about, but I am thankful my cervix is gone.

On my right Fallopian tube they found a few peritubal adhesions. Basically little polyps on the outside of the tubes. They were found to be benign thankfully. Reading up on those adhesions I found they can lead to infertility so I wonder if I would have been able to have babies without CF and LS forcing me to make the decision to remove the baby making parts.

On my right ovary again they found cysts, which have not gone away from my ultrasound in December. That's 7 months of hiding out and again I am thankful it was removed. The cysts were benign as well.

Then on to the uterus where it showed I had endometriosis. Apparently it has never given me issues.

Seems that taking out my baby making parts was a good idea. Who knows if any of these polyps would have turned cancerous...or if given what was found, if I ever would have gotten pregnant...

My second video on YouTube all about Lynch Syndrome and my choice to have this done:

I spoke with a friend of mine tonight who is a nurse and she went over the report with me thoroughly. The doc just pointed out the issues they found. Turns out those lower back cramps I had with every cycle, was the endometriosis! I had adhesions on the back of my uterus that were pulled during my cycle and caused the cramping. She asked if I had lower back pain and showed me where and it was like I was pointing to my own back! So I did have issues but never thought much of them. She also said that I was raked with scar tissue on my insides. Basically it seems like my organs where all over the place and stuck with scar tissue, like a huge cobweb! And that one ovary was connected to my bowel. I'm kind of intrigued and would have loved to see what I looked like. Gross and disgusting yes, but pretty nifty too!!!

Wednesday, July 20, 2011

I Get So Emotional Baby....

What do you get when you take a woman's reproductive organs out?

A crying, antsy, moody, unstable Amy.

I think I have my period....I mean I think my body thinks I have my period. Stupid shit has made me cry all day today. I have been moody and craving the things that I normally crave around my time of the month....and I can't stop crying.

Tomorrow is my first follow up appointment and you know I will be blogging about it. Hopefully we can chat about some hormone therapy to wean me down to menopause.

Till then I must avoid baby pictures, animal pictures, and anything that is remotely happy (like a friend blogging about dancing at her cousin's wedding - yes you know who you are; or another friend blogging about meeting said other friend - again yeah you know who).

Tuesday, July 19, 2011

My First Video Blog!

Here is my very first video. I apologize for saying "um" so many times. Drives me crazy when I do it so hopefully next time I get better. I have uploaded it to YouTube as well.


Monday, July 18, 2011


My new YouTube Channel

I haven't uploaded any videos yet but I plan on doing a few over the next few months. I want to get ideas of what to talk about. So I am opening up the "blog lines" to my readers to ask what YOU want to see me talking about.

It can be anything from a Q&A session about CF, to how to start a crochet scarf. You let me know and I will post my first video sometime next week!

Thursday, July 14, 2011


Not gonna lie...recovering has been a bit rough. Easy compared to some I am sure, but considering this is my first real surgery, its taken its toll on me.

Pain has not been a big issue around the surgical site. Pain in my right shoulder has been abysmal! Sunday I woke up thinking I slept on my arm funny then was reminded that shoulder pain is to be expected from being pumped full of CO2 for surgery. By Sunday night I was in tears and Peter had to run to the store to get me a heating pad. It was horrific! I was taking pain meds solely for the purpose of helping my shoulder. Monday I called the doctor and asked if there was anything I could do and they told me time. The CO2 has to be reabsorbed back into your body, through muscle mass (of which I am lacking). So they said it could take a few days. Well here it is 5 days later and though I can move my arm, it is not without help from the left arm. From the elbow up my arm is practically dead. I can move with some pain but only if I push it around with the other arm. Otherwise is just sits there. Almost like it lost the connection, very strange.

Now that a week has passed and I have gotten my uvula to shrink (well I didn't but mother nature decided to give me a break) I am able to cough without fear of throwing up. Only now I cough incessantly! Quite annoying I tell you. I will pop up from full sleep to a major coughing fit that lasts for 15 minutes or more. These fits are happening at least 6-7 times a day. They never result in anything coming up (mucus or food lol) but leave me totally winded and exhausted. And the coughing is killing my arm as well. I am a mess! On top of that for the first time in my life I CAN NOT sleep in my regular sleeping position. Usually I have 2 pillows and it elevates me enough. Now I have a big pillow from the sofa propping me up so I am elevated from the lower back up. Its comfortable for a bit, like a recliner, but after 8 days I just want to sleep on my side again!

Other than those issues I seem to be healing well. I am exhausted, and frustrated that I can't do much thanks to my arm. Though even with the arm working, there really isn't much I can do. Laundry is too much stretching, food shopping is heavy, I can't drive yet because of still being on pain pills, cooking is fine but I need to be creative with what we have because I can't get to the store. Luckily we are going shopping this weekend and I can stock up for the next couple of weeks.

I see the surgeon the end of next week and she will let me know if they found anything funky in my discarded organs. I wonder when the reality of what I did will sink in? It hasn't hit me that I TRULY CAN NEVER have babies of my own, EVER. Even after I was asked how far along I was (yes someone thought I was pregnant thanks to a slight bloat and asked me how far along I was in my pregnancy), it didn't really phase me much. Maybe in a few months, once my body realizes it can't produce children anymore...

Saturday, July 9, 2011

101 Things to do in 1001 Days

These are the ones I have not yet completed:

1. Pay off credit card debt

2. See a show on Broadway

7. Take a cooking class

8. Start riding horses again

10. Have the short story published

14. Take my jeep “muddin”

15. Take a Caribbean vacation

17. Get a professional massage

19. Have dinner with my dad and step mom once a month or every 6 weeks

23. Do volunteer work

26. Make homemade Christmas presents one year for everyone

27. Paint a picture

28. Do saline rinses religiously

30. Go to the movies once a month

32. Spend a night under the stars

36. Win a Halloween costume contest

37. Make candles from scratch

38. Buy a mountain bike and actually USE it

40. Go on a super romantic dinner

41. Display my Lenox crystal animals in something other than a moving box

42. Visit all 50 states (37/50)

43. Spend a day at the spa and not worry about price!

44. Go tubing down the Delaware

47. Make chicken noodle soup from scratch

49. Take an Italian class

50. Take a writing class

51. Visit Williamsburg VA and Gettysburg PA

54. Wish on a shooting star

59. Pick my own strawberries

60. Visit Times Square for Christmas

61. Go to Vegas

65. Eat more organic foods

67. Take NCIDQ exam...and pass!

70. Make a will

71. Do a scavenger hunt

72. Throw a surprise party for a family member or friend

73. Spend an entire weekend in bed/on the sofa (not sick)

75. Go ice skating

76. Go roller skating

77. Play volleyball

79. Spend more time with friends’ kiddies

80. Go to First Friday in Philly

81. Take a flying lesson

83. Finish Christmas shopping before December 1st

88. Buy more organic products

89. Throw a Halloween party

91. Get teeth whitened

94. Have a yard sale

95. Work on self esteem

96. Watch entire Disney animated movies collection

97. Curse less

98. Plant a tree

101. Celebrate completing 101 things in 1001 days!


#3. Make friends with people I wouldn’t normally be friends with. Sounds kind of mean but I am very picky about my friends. I changed that. With facebook it is much easier to be friends with people. I am not quite the social butterfly I was 10 years ago so having the computer makes it easier for me.

#4. Create a scrapbook. I made two this past year. One for a friend who lost her husband and another for my dad for a Christmas present.

#5. Print out all my pictures I have on my computer (that are worthy of printing). Done! 834 pictures later I got them all delivered.

#6 – Get computer working again so it reads CDs. This one was pretty easy. I only needed a new cd drive which I installed myself. Thanks to Kevin, I didn’t have to call anyone to get it set up for me and try to figure this all out.

#9 – Write a short story. I had begun writing a story when I was in school and I took a few extra days to finish it and make some changes. It is not entirely done and not ready to be sent to anyone yet, but it is done, it just needs tweaking.

#11 – Finish at least one book a month (33/33). I have read way more than this. I adore reading.

#12 – Take another history class. Finished my World History class with an A and starting Grad school in September hopefully!

#13 – Get a sleep study done for O2. Had the sleep study done, but "failed" it since I had just finished IVs. So we did it again while inpatient and I passed LOL.

#16 – Do the tourist thing in Philly. A friend of mine and I went to see the Liberty Bell and the Constitution when we were in Philly for the Princess Diana exhibit. It was great to FINALLY see the bell!

#18 – See my nephew more often. Though I don’t live nearby anymore, I make a point to spend as much time as I can with my nephew and now niece as I can when I am down visiting the family.

#20 – Donate all my old books to the library. This one was a help to me too! When I was packing to move I just put the books I didn’t want into a different box. Julie, my old roommate took them to the library by her work. She had some old books she wanted to take too.

#21 – Get all my pants hemmed. I am short, this is a known fact. And short people have a hard time buying pants that fit. Even with my 3 inch heels I was still walking on my pant legs. I finally gave in and dropped them off at the cleaners. A week and $80 later I now have pants for work that actually fit me!!!

#22 – Get a CF tattoo

#24 – Get rid of old junk. Did a whole lot of this when I moved and again when I have been up here. I enjoying throwing away old crap and decreasing the clutter.

#25 – Start exercising more. I may not be a runner now but I have at least started some exercising and I am working on getting into a better routine.

#29 – Delete old files off my computer. This one only got done because I was without the internet for 3 weeks!! I deleted all my old files and programs that I never use. I have a lot more space now!!

#31 – Smile at a stranger at least once a day. I try to do this when I go out. I don’t go out every day so obviously I can’t do this daily, but it is very rare that I go out and don’t smile at someone.

#33 – Go camping. We are going in August so I do miss the cut off but we are going so I am counting it.

#34 – Learn to knit/crochet. I can crochet like a fool! The knitting I need to learn at some point and I will. Right now I really enjoy the crocheting and I have so many projects that I am doing so it is hard to start a whole new way to do things.

#35 – Go to Disney World. Well I kind of cheated on this one haha! I wrote it in knowing I was going to go. Shhhh don’t tell!!

#39 – Back up all my blogs. Did it! Took a while to get them all copied but it is done! And now I write my blog in the file and then copy it to my BlogSpot. See worked well!!!

#45 – Learn to drive a wave runner. Peter and I rented a jet ski while on vacation and he let me drive for a bit! It was so much fun and by the end I finally figured out how to turn without slowing down so much lol.

#46 – Get a colonoscopy. I have had 2 now so I think I make it. Luckily I have had them done considering I have had polyps removed both times.

#48 – Make an edible beef stew. I nailed this one!

#52 – Learn to cook things other than chicken and rice. Peter will say I have got this down pat.

#53 – Start going back to church. We go on holidays, does that count?

#55 – Stay off of lung transplant list (active list). So far so good.

#56 – Celebrate 30th birthday with HUGE party

#57 – Send Holiday cards to family and friends. I do this every year now and I love it!

#58 – Update address book. All done!

#62 – Start doing Pilates/Yoga again. Tried Yoga and do not like it. Did Pilates a few times and it just doesn’t work for me. I get nauseous with all the bending and stretching. Not exactly productive exercise.

#63 – Date more and not be so darn picky about dates. Ironically a year after I wrote this I found my match. I dated a few times prior but I was never really one to date a bunch.

#64 – Keep a private, paper journal. I have one. I might not use it all that often but I do have it. I tend to use my blog for most of my thoughts, unless they are super emotional then I use my paper journal.

#66 – Visit grandparents’ graves. I have. Now it’s a bit hard since I am 300 miles away. But I have done it since I wrote this list.

#68 – Become a member of ASID

#69 – Save money. I got me a savings account with some dough in it.

#74 – Recruit more people to be organ donors. 2 people that I know of have changed their minds and signed up to be donors. It’s a start!

#78 – Stop working so much. Pretty sure going on SSDI counts for this one.

#84 – Go on a picnic. After the parade on the 4th we went to the park and had a BBQ with friends while we waited for the fireworks. It may not be a picnic basket and checkered blanket but it’s a picnic!

#85 – Learn to ballroom dance.

#86 – Bake homemade banana bread. The bread didn’t turn out too great but it was still good. Very heavy. I must find a lighter recipe….if one exists.

#87 – Recycle more. I even have Peter and his daughter recycling now. Go Me!

#82 – Actually go Christmas shopping on Black Friday. Yes I braved the stores and went shopping on Friday. I was going to go at 5am, but I was still too tired. Now I am glad I didn’t since I heard of a few deaths caused by trampling!!! OMG WTF?!?! I almost had #83 (finish shopping before December 1st) but I have a few more people to get and I know that won’t happen tomorrow. Next Year!!!! That was 2009 and I braved the stores AGAIN in 2010 while on IVs! That’s bravery lol.

#90 – Start birth control. Had a hysterectomy on July 6th so I am pretty sure that counts.

#92 – Meet more online friends in person. I may just have more online friends here in Boston than I do “RL” friends! We meet up quite often for doc appointments at the Brig.

#93 – Be more feminine (i.e. more necklaces and earrings) for work. Well while I was working I was able to dress all snazzy, now that I don’t work I just lounge in sweats a lot. But I do dress up when we go out on the town!

#99 – Do a random act of kindness. I can’t think of any off the top of my head, but its been 2.5 years and if I didn’t do this then my sorry ass is headed to hell in a hand basket!

#100 – Meet the man of my dreams. You all know I mastered this one ;)

Thursday, July 7, 2011

Made it!

Surgery is over! I have 3 tiny holes in my abdomen and a bunch of needle marks in my arms lol. All went well though. I am learning to cough without feeling like I am going to open things up. I tried holding a pillow there and it hurt more than helped. Right now I am coughing up dark greenish/grey cement. But that will slowly go away as I clear it all out. Its hard to cough up stuff without gagging since my uvula is swollen and when I cough stuff up it gets stuck on it (OMFG EWWWW). I had the nurses give me 1000 cc's of saline over night because of how thick the mucus was. It is slightly thinner now and again will diminish as I drink more and get more up. Overall I don't hurt that much. The bloated belly from the gas hurts more in my opinion, and the incision areas itch like crazy. It feels like I have a horrible case of PMS cramps.

My biggest obstacle is passing gas. I have a few times but I have to keep on it. Things are all moved around and out of sorts in that area so its all a re-learning game to me.

I have to monitor my oxygen and temperature and call if anything gets too low or too high.

That's about it! I am on pain meds and they make me sleepy so I am trying to only take them at night and stick with the 600mgs of Motrin when I am awake. Though I am sleeping a bunch especially after walking a bit.

I shall check back in a few days and let you all know how I am feeling!

Tuesday, July 5, 2011

Surgery Time!

My surgery is scheduled tomorrow for 9:30am. I will update my blog when I get back home :)

I admit I am nervous and scared. This will be the first time I am vented and under general anesthesia. It is also the first time I will need pain medication. Again I am nervous about that too.

Prayers and good vibes would be appreciated tomorrow!!! Thanks :)

Sunday, July 3, 2011

A Week in Wildwood NJ

My family and I (P and E included) had an absolutely amazing time down the shore in Wildwood. They have a huge boardwalk with 3 piers full of rides and games, a ginormous beach with a rubber walkway halfway down to the ocean so you can walk better, and we were 2 houses down from the boardwalk so getting there and to the beach was a breeze! The best part was spending 5 days with my niece and nephew. When I went to bed they were there and when I woke up they were there. I couldn't have asked for anything better.

We spent Monday at the beach. E, J and my mom had gotten new boogie boards that morning so they all brought them down. P and I decided to take a swim (ok he convinced me as I haven't been in the ocean in years past my lower calves). HOLY SMOKES! The ocean can wear you out faster than anything else! I made it out a little ways and had to go back in I was exhausted. We were out to our lower bellies (on me) before I got tired from jumping the waves. So I went back and laid down to read for like an hour. After that we did it again. We got much farther out and rode some waves. Then P had to lug me back in as I was totally done. Even kicking wasn't going to happen. My mom and aunt said when I walked out of the ocean I looked like I was going to drop dead. There was no color in my face at all and I was staggering. Scary to think what the waves can do to someone at this stage of CF. After that I again laid down and read some more till we all went back to the house.

Monday night was our big trip to the boardwalk. Everyone was riding rides and playing games. I stayed down with my niece when everyone would go on the roller coasters. J and E did a bunch of the kiddie rides when E wasn't on the adult roller coasters! My mom's boyfriend went to find a bar as he isn't a huge rides fan, and then a bit later P decided to catch up with him for a drink then meet us back on the pier. Well we eventually left and my mom called her BF to tell to him to tell P to meet us on the 2nd pier. P wasn't with him. So I went back to the pier to look for him. I must have missed him on the tram car (they have a tram that goes up and down the mile long boardwalk and P said he had hopped on so I must have missed him walking past it) because he was no where to be found. I headed back to the 2nd pier and as I did so I saw an ambulance and fire truck with their lights on. It made my head think and I started to get all teary eyed. By the time I found the rest of them I was full on crying and couldn't stop. I did this for the next hour. I was having fun and taking pictures but I couldn't stop crying. Eventually we went back to the house and P was there. Oh also he and I had left our phones at the house so we couldn't call each other). I was so worried I lost him lol. At least I know just how much I love him and got a glimpse of what would happen if I ever really lost him.

The rest of the week was great too. Wednesday P and I went para sailing and jet skiing!!! We were 375 feet above the water! I held on for dear life! I get motion sick and we were the last couple to go up so by the time we did, I was green and ready to hurl all over the place. Luckily I was able to keep it down but for the rest of the day I was a bit nauseous.

After that we met up with my sister in law and the kids at the water park. It was my first time at one and we had a blast! I actually climbed the steps up to slide down! 94 steps holy moley! I did it 5 times over 3 hours lol. There are different levels so I would stop at each one and take a few breathers for a minute or two. And I walked very slow up the steps, letting people pass me. The lines were super tiny so I wasn't worried about that part. Though a long line might have been better on the lungs!

We definitely had a great time and I am so glad we got to go. I am looking forward to our family camping adventure the end of August.

Thursday, June 23, 2011

20cm is HUGE!

When you hear centimeters you don't think of something being large. At least I don't. So when I heard that the polyp removed from my colon was 20cm I just said oh ok. She said it was big but I never thought it was THAT big!

20cm = 7.87inches!!!!!!!

Yeah something THAT large was sitting in my colon! Luckily it was benign.....

Wednesday, June 22, 2011

2 doc appointments rolled into 1 post

Clinic went really well for me! I lost a few points on the FEV1 scale but that is to be expected. Nothing significant though. I was 1.28L last visit and 1.22L this visit. Perfectly OK. Which means I am signed off and ready for surgery on the 6th! Pre-op is tomorrow morning where they are just doing some blood work. Then we leave for vacation on Sunday, get home Thursday night, Celebrate the 4th of July that weekend then Tuesday is prep and Wednesday I say bye bye to my lady parts.

She talked to one of the transplant doctors for me to find out about the Lynch Syndrome and being transplanted. They told her that it won't automatically disqualify me from being listed as long as I am diligent about screenings, which of course I have been. I have enough on my plate without developing cancer. I was glad she asked that since it was one of my questions for them on August 3rd. I will still be asking them questions about it but at least now I know going into it they aren't going to tell me to go home.

Last week I had an ultrasound done on my thyroid to check the nodules that were found on the CT scan. There is one on the left side of my thyroid which is super small and of no significance so that one they left alone. However, the one on the right side was larger than they like (anything above 1.5cm they biopsy and mine was 1.9cm) so they did a biopsy. Very strange procedure. First they numb the spot with lido-cane so you can't feel the needles being plunged into your throat. Then they take 3 samples with needles. Doesn't hurt at all but it feels so weird having someone deliberately pushing on your throat. Afterwards you have a small pinprick on your neck which I dubbed my one toothed vampire bite.

I knew something wasn't right with the nodules when the tech came back in to re-measure the nodule after showing the results to the radiologist (which is normal to do). Then my new thyroid doctor came in to explain everything to me. She also showed me the lump. It feels like a raisin in my throat haha! You can only feel it when I am swallowing thankfully. She said 90% of these come back as nothing and they just monitor the nodule to make sure it doesn't grow. But if it does come back cancer it is very easy to cure. No chemo, no radiation, just remove the thyroid and you are good to go. I am supposed to hear the results today so fingers crossed it is just a weird growth like all the rest of my body likes to do. I swear I am a growing field for nodules and polyps!

I also added 2 more doctor appointments to my already swamped summer. I need another CT scan done in August and I have my next clinic appointment on August 10th, the week after the transplant clinic. She was very excited about my stability this past month and said she feels, as do I, that I will be good through the summer. We both knocked on wood! One of my main focuses for the next month is to make sure to stick with my airway clearance and moving around. Especially post surgery. Coughing is going to be painful for a bit afterwards, but I can't let my lungs fill up with goo. If I start to feel crappy before my appointment I am to call right away. She trusts the doctor doing my hysterectomy though, since she did another of her patients last year. So that made me feel better as well. I was already trusting of her since she had mentioned the previous CF hysterectomy to me on my initial appointment, so I am glad it turned out to be my CF doctor's patient.

All in all I am stable and looking forward to a VERY busy summer with doctor appointments and vacations!

EDIT: Biopsy results are in and they were normal! I am not a cancer mine ;)

Thursday, June 16, 2011

In need of a Kidney Transplant - For a Friend

A friend in the CF world needs a new Kidney. At first they thought her sister was a perfect match but turns out she might not be able to help after all. They are in the NYC area. If you would be at all interested in donating please contact me via facebook and I will pass your message on to her.

Read more about the process here.

I hope each of you considers what an amazing gift life is! Think about it please.

Monday, June 13, 2011

A New Puppy

We have been talking about getting a puppy for a long time. Now it looks like it will be this summer for sure. I am really excited to have a puppy to play with and force me to get out and walk.


I am scared to love another puppy and go through what I went through with Maggie. Maybe I am overly emotional about it but I still well up with tears just thinking about her. She was my whole life. I feel like I lost a part of me when I had to put her down. And now I am opening myself up to pain like that again.

I know it will not be the same. She (P wants a female) will be the family dog and not just my sole companion. But I will be with her the most. I am home all day. I will be the one walking her, picking up her pooh, and taking her for her shots etc.

I am excited for the chance to love a pet again like her, but I am scared shitless. That was the WORST pain I have ever felt and I have lost friends, grandparents and a step mom.

I will be sure to post pictures when we do adopt her. I have my eye on a cutie as we speak...

Thursday, June 9, 2011

No one puts Baby in the corner!

Today I had my first ballroom dancing lesson. Can I just say I wish I had started years ago! It was a lot of fun. My biggest obstacle is not my lungs, but my control freak issues. I have to get used to a man leading me around the dance floor. We all know I am super independent so this will be the hardest part for me to master. But once I just relaxed, concentrated on the steps and the music I did really well. It helped my instructor was really good too.

I signed up for 5 more lessons which I can space out. That is nice since I have surgery July 6th and a bunch of vacations. I will get one more lesson in before we leave for vacation, and also before the deadline for the 101 things to do in 1001 days. Then the last 4 lessons I can space out at my convenience.

Lung wise I did better than I had expected. I didn't cough much, just a few "fake" coughs to get rid of the feeling. Once I was done and outside I let the hurricane of coughing start. It was a very good workout and I can tell my hips, lower back and arms will be hurting tomorrow!

One of my favorite movies is Dirty Dancing and I felt like Baby when she was learning to dance for the hotel performance. Even as I sit here and practice holding my arms correctly; shoulders down, head up, elbows up, arms stiff; I feel like her. And remember, NO ONE PUTS BABY IN THE CORNER!

Monday, June 6, 2011

Lack of O2 Makes Ya Think!

Today I exercised more than I have in a while. Real exercise, not the cleaning, laundry and food shopping that I tell myself is real (well the docs say it isn't but they should have 40% lung function then tell me that). Today I walked around the lake in my town. NOT the whole lake because that is like 2 miles or something like that, but about 1/4 of a mile I would say. Not too bad. I tried it at a brisk pace too. 5 songs on my iPod later and I was back at my car...huffing and puffing and hurting. My head was throbbing!!! On a good note I was able to cough up quite a lot of goo! Bree would have been proud.

The reason for the headache? 86% O2 stats the whole walk. I didn't use my O2 and I really should have. But I have yet to use it in real public yet. I've used it on the train when T and I were traveling to PA, so I could sleep. But nothing else. Now it seems I really MUST take it with me. But can I whine and say I don't wannaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!! Looks like a trip to REI or someplace like it is in order so I can get me a back pack to hold my portable concentrator. I don't think pulling the wheelie cart would work well and it's just too heavy to have on one shoulder for half an hour of exercise. I have Phillips EverGo if any of you have any ideas you want to share with me on back pack ideas!

So why did this all make me think you ask? Well as we all know it is very important to do your best thinking with less O2 in your blood than normal. Makes everything seems so much better right? Sensing the sarcasm yet? Well if not then look closer :)

After catching my breath and getting my O2 back to normal I sat in my Jeep. I sat there contemplating my upcoming transplant appointment. I found myself both excited and sad. Excited because I will be able to breathe for once, and sad because I need to get new lungs in order to breathe better. It truly is a bittersweet surgery.

Again you may be shaking your head and repeating that my FEV1 is decent. Most people I know waiting for lungs or doing the evaluation would kill for 40%. Me I don't feel like 40%. Most days I feel much lower. Inflammation and tightness are my issues, along with no inhaled or oral antibiotics to keep things at bay. Add into it my desatting with exertion and its a little clearer why I am going. 3 months ago when she first brought it up I thought for sure that I would not have to start the evaluation process yet. Now I wonder if it might be a good idea to do soon. Not so much because I NEED the lungs like yesterday, but because I can tell I will be a fast slider. Though I have been consistent and fairly slow since high school, the deterioration over the past 2-3 years has been much greater than the whole of the prior 10 years. I'm running out of coal for the fires...

My body is just tired.

Wednesday, June 1, 2011

Cystic Dreams Fund

Cystic Dreams

Everyone should check out this awesome site!

From one of the CDF supporters:

Many of you already know about the Cystic Dreams Fund, created in memory of Paul Mooney (aka "Q" or "Quoof" on here.) Because of this fund, part of Paul's legacy will be to financially help adults with CF. Eventually (soon, hopefully!) we be giving out grants to help adults with CF with their numerous expenses.

Those of us involved with the fund want adults with CF everywhere to know about this opportunity. So if you aren't already a fan, please visit our Facebook page and become one. My soap-making partner and I are giving 20% of our profits to the CDF this month. As part of our final push to gain more facebook fans and exposure for the CDF, we are having a raffle for a bar of soap. If you go to the CDF facebook page, become a fan, and then refer a friend or two, you are eligible to win. (Be sure to click "like" on the thread about this.)

Thank you for your support and for helping to spread the word to cystics in need!

Sunday, May 29, 2011

Saying Goodbye... (edited)

Saturday was Bree's Celebration of life.  And a celebration it was.  There were so many people there!  Such a testament to what an amazing person she was.

I met her sister first.  I told her who I was and that I was there to show the family our support from all of the online friends Bree made, and who couldn't be there themselves.  She asked me where I was from to which I obviously replied Boston, MA. She got this look of pure wonder on her face and started crying.  She gave me a huge hug and told me should was so thankful I came this far for them.  That of course made me sob lol.  I met her parents next.  They are so awesome!  I see where Bree got her personality from.  I stayed for a bit to watch the slide show and to just look around at the people.  I flew 401 miles and drove 104 miles to be there, I was going to make my time worth it and not stay only 15 minutes.

I got a few extra memorial cards to send to some people who wanted to be there but couldn't.

After I left I decided to take a trip to Chapters.  Bree's favorite place.  It was kind of surreal walking around the store that she has frequented so often.  I bought two books while there.  I know she would appreciate them both.

I drove around a bit and was able to see the University of Guelph.  Its a beautiful city!  I took a few pictures to document what I saw and so those that wished they could be there can look at these and maybe feel like they were.

That night and again Sunday when I was going home, I felt depressed.  Just down and blue.  When I returned to my hotel room after the adventure around town, I had an overwhelming desire to go home.  I was dreadfully homesick - something that very rarely happens, and only has when I have been in the hospital.  And the suckiest part was I could not use my phone because it was on roaming.  I connected to WiFi though so I at least could talk to P that way.  Luckily when I woke up I felt better for a bit.

I still can't believe she is gone.  It still doesn't seem real to me.  I miss her so much.  I know it time the pain will dull, but that does little to console now.  I just want to talk to her one more time.  To see her post a sarcastic witty status update.  To make a goofy comment on one of my pictures.

I'll see her again some day.  This I know is true.

Almost there!

The Funeral Home

Her favorite store

My two books I bought at Chapters

city limits

yes I pulled over to take these two!

Tim Horton's - her tea haven

A few weeks ago, before I knew what critical condition Bree was in, I had the weirdest dream.  At this point it is foggy in my memory but I remember having to cross this ridiculously looooong bridge into Canada and at one point we were basically hoping from "cloud to cloud" to get across.  We got on a boat that floated (much like in Mario Bros lol) and that took us the rest of the way.  It took a few years to cross to Canada, and since I had done this on accident I had to wait till there was another ship returning to the states.

Saturday as I was crossing the bridge into Canada, I had the strangest deja vu.  My dream immediately came to my mind and I knew I was supposed to be there.  Of course it didn't take me years to cross the bridge, but in a way it did.  I became friends with Bree 4 years ago.  And it took me till she passed to make the journey to see her.  There was no "her" in the physical sense (they are doing an autopsy to see just what happened to her) but she was all around us that day.  In the laughter, the tears, the tea, her recipes that the family cooked for everyone, the music and the pictures.  She was there.  And I am so thankful that I was there too.