Wednesday, February 27, 2013

I'm still here...

"This life a gift; a walk; a struggle..."
(Us! We're cute ;)

-nothing too profound-
Hey peoples,
                Yes, I'm still here... Sorry for my absence.  Needed time and space, I guess.  And I've had a shit ton going on lately and been super busy. Ha!  So let me give you a quick update.
                In a nutshell; since my last post I've gone from the CF Hospital in Kansas to the Transplant Hospital in Texas.  The many steps to get me from there to here is a story in itself! :P Anyway, it took a week to complete the evaluation (transplant workup) process.  In entirety I was in the transplant hospital for about two and a half weeks.  It was a very long and exhausting workup:
1)      PFT test
2)      Chest x-rays
3)      Stomach x-ray
4)      Sinus CT scan
5)      Abdomen CT scan
6)      Exercise stress test
7)      Cardiac catherization
8)      Echo cardiogram
9)      Blood gases
10)   Lab work
11)   Colonoscopy
12)   and more...
I also met with many consultants...:
1) Regular and CF pulmonologists
2) Cardiologist
3) Surgeon
4) Gastroenterologist
5) Psychiatrists
6) Social workers
7) Dietitians
8) Dentist
9) Infection disease consultants
10) Ear nose and throat specialists
11) OB-Gyn
I was still taking oral and IV antibiotics for the infection I've had since November.  I was eating as much as I could, still trying to gain weight.  Also, continued to do tube feedings at night to help with receiving more calories.  Then, of course, I always do my regular daily breathing treatments and therapies.
We celebrated Valentine's Day at the hospital:
(my Valentine's present from Joe) 
We celebrated my birthday at the hospital...
(my cupcake from the hospital)
And on my birthday I was officially approved and put on the lung transplant list.  I was # 57 on the main list and #2 on the hospital waiting list.  Then the waiting game began...
On February 22nd all antibiotics were stopped and I was finally released from the hospital.  We arrived at our temporary apartment (home away from home) late that night.  The apartment is amazing... it's a program where  they rent out these apartments for people in similar situations as ours (family in the hospital or waiting for surgeries).  It is fully furnished and very cute!  And we've been here since; simply waiting for "the call" to come.  We spend our days keeping each other company; watching tv, being on the internet, chatting, chilling, putting together a puzzle ;) and just finding things to do here.  We'll definitely be able to actually go out more post transplant rather than keeping busy indoors all the time... but I do love our balcony and that's outdoor ;)  And I love our little dining room...
Anyway, that's my update - in 30 seconds!  I wish I could tell you all the details; the day to day struggle, the funny moments, the ups and downs, the entire journey just getting me to Texas; but there's simply too much to tell.  Basically it was a long few months; it's been a long freaking winter.  We've made it this far... and I know we'll make it the rest of the way too.
I want to take this moment to express that I am a very lucky lady.  I have the best husband in the world... a man who cares; a man who carries me when I can't walk; pushes me to my limits when I want to give up; who talks to me during my anxiety; holds me when I cry; comforts me when everything seems hopeless; and makes me laugh in the face of fear... and goes out to the car in the middle of the freezing night just to get me a cough drop! :D  I am proud to have my Joe as my husband.  I hope I make him as happy as he makes me :) I love you, Joe!!  I really hope we're able to find relief after everything is said and done.  Maybe, you know, smoothe sailing for the rest of our lives ;) We both deserve it... at least that's my opinion. *giggle*

(a greeting card I drew for my hubby)
Glad to be back.
Much love,
           ~Julie Jean
p.s. I know Rafe has been with us in spirit through all of this; helping us stay strong... I miss you. <3