My Double Lung Transplant

Saturday, July 26, 2008

Transplant is....

..a lot like a storm warning: it's either imminent or occuring. Which is why i get pissed off when ppl hear i'm waiting for a transplant, and they ask me time and time again if i know when it will be, if i've heard word of when it will be, or if i have any general inclination as to when the deed will get done. Well i don't; i have no notions, no nothing, so shut the fuck up. I don't get too agitated when random people ask, or ppl who have just found out that i need one ask. It's the people who know me well enough - know the details - who ask....it gives me the impression that they think the knowlege of transplant is like some magical little box. I dunno. Oh well.

The last 2 days i've felt iffy. Emotionally like a bush woman, impatient and not wanting to be bothered by anyone or anything. I dunno...I just want things to progress but i have no control over that as i've said. Oh well. Today i felt terrible, and it was Jess's bridal shower and i helped with it, and it was great but holy crap am i tired and exhausted. My back ached something awful all day, my chest was heavy with crap and i couldn't breathe worth crap. I was so full of stuff that when i was driving home i coughed, and phelgm just came out all over me. I had to be careful all day b/c if i bent over too much the urge to cough would consume me, and phlegm would just pour out of me. No lie. I was so fed up by coughing and spatting little phlegmlettes over myself that by the time i got home, i sat in my car in the driveway and swore that i was fed up with this fucking humiliating disease.

Now that i'm back to taking the bus to TO my embarassment regarding public use of o2 has crawled back into my system. I don't bring my cart but rather stow my tank in a backpack. On Weds on my way to the bus stop, my backpack was knocked over in the car and the tank began to scream. Anyone who uses liquid O2 knows that if it tips it screams and then it smokes. Well...as i waited for the bus outside, I stood beside 2 people my age, and i saw them casting funny looks at my bag as it rested on the sidewalk. Sure enough, it began to smoke from it's little tumble from it's car seat, and i'm sure the people were wondering what in fuck's name i had in my bag. So i decided just not to look at them.

My dad and mum don't understand what i'm so embarassed about. After all, it's a 'medical' reason for why i need oxygen, and it's nothing that i can help, and i told them that they seem to forget that i'm 22 and not 80 and therefore wearing and needing oxygen at this stage in life isn't a fashion statement i want to be quick to make. I'd honestly rather suffer and pass out from o2 deprevation than be seen by some random person puffing on tank. Honest to God. I am a horrible person.

Whatever.

Either way, i'm a little better now. I almost had a melt down as all of my medical issues came to the surface of my brain lastnight and i realized all that is 'wrong' with me; all that sets me aside and brands me as a 'freak'. I don't usually entertain this mentality, trust me, but when u sit down and actually think about all that's 'wrong' with you healthwise, it's daunting and frightening and damn-well angering. Makes me wonder if i committed murder in my last life or something. Something terrible must have been done in order to have this feat bestowed on me, b/c god knows it wasn't on my list- of -things -to -have- in -my -next- life, Please and Thank-You. I'm pretty sure when i reached the check-out that i was given the wrong charge. Or maybe i picked up the wrong reciept?

Either way, it's not something i'd wish on anyone...regardless of how much i hated them.

And either way, this isn't anything i try to spend too much time thinking about. I better stow it away in the secret box that lays within my brain and lock it up.

Anywho, tonight was fine. I lazed around like a cow and read. I just cuddled with the Heidi Speidi b/c she was annoying me. I think it worked. The cuddling stops when she starts to drool, and she gets so happy that she looks like an aged Gremlin.

And that's all for now.

5 comments:

drained in sj said...

I never read your profile until today. I started reading one CF blog and it led to another and another.. and eventually lead to your blog.

I am glad you have a place to vent and express yourself. I hope it helps.

They even say blogging keeps you healthier.

I can't begin to imagine the frustration that you deal with each day.

Did you notice how many times I wrote 'I'?

Feels narcissistic. :)

I hope tomorrow is a better day for you.

-Lou

Alice said...

Hey! Wish I was on-line last night when you were so we could bitch and moan together!! Not that I've acyually got reason to, I was just home-sick. Feeling a bit less so today. Hope you're feeling better too!!!

Dragonfly said...

*Hugs*

BreathinSteven said...

Hey Beautiful Chick...

I like your first thought -- your description about the storm warning -- I never thought about it that way, but you're right on target...

And try to forgive people because they tend to understand little about this whole process... I'll be honest, I really didn't before I was listed either -- I try to spread a little more awareness these days especially for people like you... Uninvolved people really don't get it... They imagine that kidneys or livers or hearts or lungs are available when you need them. But, it does hurt when you think someone knows you well enough that they should understand the process...

I don't know what to tell you about the O2... You're parents don't, and may never understand... I probably could have used oxygen for 3-4 years before I started... I even remember in the hospital when the med students, interns and docs would come in and lecture me why I should be wearing my canula -- it got to the point where I would put it in when I knew they were coming, and pull it off when they left... It probably is a vanity thing -- and it does attract attention, and not usually the attention one would want... Often enough the attention is pity, or sometimes worse -- a kind of revulsion or fear... But that type of attention comes from little people... Regardless -- being on the receiving end ain't the most wonderful feeling in the world...

But those little people take nothing from who you are, Bree... You're beautiful inside and outside with or without a canula and backpack or cart... Your parents will never get it because they love you and they know that it's necessary -- but that doesn't help the way you feel...

Me and Alice and Dragonfly and Drained -- we all care about you and probably even understand some of the crap you're dealing with day in and day out...

I hope you're feeling better after getting wiped out at the bridal shower -- parties were fun, but they used to wipe me out for 3-4-5 days afterwards too... You'll catch up... I hope your time comes soon so you don't have to mentally think "shut the fuck up" to those people who don't get it...

Love,

Steve

p.s. hey, thanks for putting a link to my blog on your "transplant sites" listing -- that means a lot to me, Bree...

drained in sj said...

I don't know how 'mixing blogs works' but wow Steve, great story. Lately, when I am out running, or walking, or bike riding, or just talking and my asthma hurts, I think of you guys. While it doesn't make my chest hurt any less, it does keep things in perspective.

I still remember hearing about CF for the first time when I was a child. My music teacher, and later a friend of the family, had a son with it. I was too young to really understand it. To me it was a disease that would suffocate you. I remember hearing how she would have to perform chest percussions on her son. Later in life, when I was learning chest percussion in the Air Force, I still thought about the way she described treating her son.

Although I am an accountant, I was an Air Force Medic, and more recently a volunteer emergency medical technician(ride on an ambulance). I go to school at night in preparation for Physician Assistant school. (A job title only found in the USA I think.) I look forward to spending more of my time helping others feel better.

So anyway, this post is me writing, instead of worrying about Bree, who has not posted in days after feeling lousy.
:)
Lou