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