My Double Lung Transplant

Thursday, January 27, 2011

My broken head

For the past 4 days I've been stumbling around like a bee in a bottle, thanks to my broken head. It all started Sunday when the weather changed a drastic 23 degrees in under 24 hours.

Finally today I was fed up and phoned up the docs in a fit of tears and got fitted in for 4pm.

I waited. And waited.

And waited.

I sat amongst the sick, the disgusting, and the grotesque.

I made a point to look as miserable and unapproachable as possible, and it seemed to work since no one made eye contact with me which is just how i like it.

Finally I got in. Where I waited. And waited. And waited.

The doc came in. He was a fill-in doc since my doc is on mat leave.

We went over the meds list, the transplant story, the medical history.

"You scare me," he said.

"Ya," I replied with no feeling. Just fix my broken head.

He listened to my lungs, looked in my nose, mouth, ears. I stood up and did walking tests, and followed his fingers with my eyes.

"Nothing neurologically wrong," he stated.

Ya. My mind replied.

"Well," he said sitting down. "I can't find anything wrong with you. But your medical history concerns me. What do you think it could be?"

"I think it's from the weather change the other day," I said flatly. " I get headaches and sternum pain and now my head is broken. From everything I read on Google, it says barometric pressure change that causes vertigo can last for days"

He said nothing.


"You can always try Gravol."


And the appointment ended.

And my head is still broken.

7 Years

I keep you locked in my head
Until we meet again
I won't forget you my friend...

~ Pink, "Who Knew"

Tuesday, January 25, 2011

Topsy Turvey

The good news is that I no longer feel like a zombie.

The bad news is that for the last 2 days I've been plagued with vertigo, to the point that today I called out of work. I feel all topsy turvey, like when you're tipsy from drinking. I went to shoppers and bumped into a few things, when I stand up i take a few seconds to right myself, and i feel nauseas. I'm eating right now for the first time in 21 hours actually. Right before a dizzy spell I get a hot flash.

It's been fun.

This is the first time I've ever had this happen, and I did some research as to why it's occured. Since yesterday there has been a 23*C change in the weather. It's gone from -25 to -2 in under 24 hours. I always get headaches and sternum pain when the weather changes, so when I was researching 'barometric pressure change symptoms in humans", next to headaches and arthritic pain, vertigo was another one listed. It all made sense.

So that's what I've been up to.

Also, is anyone even reading this blog anymore? No one posts comments...makes me sad :(

Monday, January 17, 2011

Tea = Zombie Fuel

Today Chronic Illness reared its ugly head and said, "Today is MY day, and there's nothing you can do about it. HA HA" and so I awoke feeling like a total zombie, taking an hour and a half to pull myself out of bed and do human things.

It's days like today that i wish I could reach inside myself, pull out my defective ADA gene, and fix it to make myself feel better.

Sure, you can treat it with my injections, and other meds, and lots of tea, and keeping warm, and having lots of soup and other stuff, but it's no match for It itself. Somedays it flares up, and those days, like today, leave me feeling like a zombie who does not wish to be peeled from the couch.

I managed to get myself my tea, which I have now named Zombie Fuel, and go to work, but luckily, frigid temps were on my side and most of the dogs didn't wish to walk today anyways.

I just feel blah...can't be motivated. Everything feels like a mountain of a task. I did manage to order meds, which I've successfully put off for a good week. I'll pick them up tomorrow. I also wish to make Beer Stew for supper, but alas, the ingredients aren't in the house which means I'd have to go to No Frills to get them...which means moving. So.....yeah.

Maybe tomorrow?


Speaking of chronic illness, we had this discussion last night at supper. My sister seems to beleive that since i had my transplant, that I no longer have a chronic illness. Sometimes I think she gets confused and forgets that my former lung condition is completely separate from my underlying primary condition. My underlying primary condition - ADA SCID - is the reason why my lungs got shitty in the first place. ADA SCID is genetic - I was born with it and it's embedded in my genes. Bronchiectasis was a result of SCID, the repeated and prolonged infections, but isn't embedded in my genes. It just coated and killed my lungs, but wasn't in my genes.

Get it?

So I got a transplant and bronchiectasis (and asthma) fucked off, but the ADA SCID is still there. I used to get IVs for it, but have switched to daily injections. Any condition that needs to be treated long-term is considered chronic. This condition will never go away. If it goes untreated, it is lethal.

Ironically enough, after telling my sister what constituted a chronic illness, the discussion of gene therapy and a cure was discussed. My dad and sister are all pro 'cure' and gene therapy, even though at Sick Kids they told me that I am too old for gene therapy. Which is fine. The injections work great and 95% of the time I feel amazing, it's just the odd day where it decides to flare up and there's not a lot I can do about it but ride it out.

Would I want to be cured if I was able to be? Honestly? No. I've lived with this for 25 years. It's all I know - the ups, the downs, the stagnant-ness of it. I don't know what I would do if one day it were gone. It keeps me humble. I feel amazing 95% of the time, it's just the odd day (like once a month) where it flares up and I feel like a zombie. And I need extra zombie fuel.

That doesn't mean that I don't want a cure or beleive in gene therapy. I absolutely do. But i'm too old for it and the way i get treated is totally fine :) I think if you spoke to a lot of ppl living with chronic illness they would agree. They would feel like how they are getting by is just fine. Chronic illness is a total learning experience, and like i stated before, it keeps you humble.

So I just ride it out, take it easy, and consume more Zombie Fuel.

Monday, January 10, 2011

"DON'T stick things in your ear"

....said my audiologist to me as he took the ear-looky thing out of my ear hole.

"That's a lot of blood. You should have gone to your family doctor instead of me"

Internally I smiled, knowing full-well that calling my fam doc would've meant a wait, or a referral to the ER, which would entail a 6+ hour wait that I was in no mood to endure.

"I could've," i said, "but you were the first person to come to mind. It's not that my ear was spurting blood profusely everywhere or anything".

"True," he agreed. He stuck a q-tip coated in vaseline in my ear a few times and swabbed away the massive pool of blood.

"Look," he said, showing me the end of a seriously drenched q-tip. "A small clot. It's started to stop." He looked happy. He stuck the ear-looky thing back in my ear. "Aaaaaaand there it is: you punctured a blood vessel."

He looked down at me as I sat in the chair trying not to laugh.


Ok I take the message to heart. It all started a few days ago after I showered, where I was sure I got water in my ear. It's nothing too annoying but if I force my teeth shut there is a 'thunk'ing sound in my head. I told him this but he saw nothing with the magic ear-looky thing. My dad thinks it's probably a snot build up. Today I was stretching when I felt the thing budge. Wicked, finally! I thought happily, as I dug through my purse in search for my thing of Q-tips. Finding them, I whipped one out and put it in my ear, swabbing.

I removed the q-tip and there was blood. I stuck the other end in. Blood. Waited a bit, got a new q-tip, same thing. So i called the only person I could think of and zoomed right over. By that point it literally was bleeding profusely - dripping out my ear and down my neck kind've profuse. But being a hero, my audiologist staunched it and I came home with a lesson I will never forget.

Did you know that the humans first instinct when they see a hole is to stick something in it?

Now you do.

Sunday, January 9, 2011

Good for the Soul

Early morning drives are good for the soul.

I had to go out to Rockwood this morning for 7:30am to see the Babies - two french bulldogs who are almost a year old (but i refuse to beleive they are Big Boys now because I love them so much). I've been taking care of them almost daily, twice a day, since Sept. When my time was up I wasn't quite ready to head home, and still had Timmies left, so I decided to go for a drive. I went out to Eramosa, then Erin, Ospringe, all the side country 'towns' that I know so well from having my nana and papa have a farm out in Erin whilst growing up.

The sun was blazing away in it's usual wintery way. Clad in my blue heart flannel jammie bottoms and brown U of G sweater, I drove down the backroads towards the Farm. It still looks the same, all 181 years of it (that's 1830 people!) I was sad that I couldn't see the tell-tale red humungus barn door that dominates the back of the barn (thanks to the sun), but what can you do? I was happy to see that the new people who live there (nana and papa had to sell it in 2000 because it was just too much for them to take care of) were utilizing it well. At the side of the house where the red deck used to live, now houses a pen for horses. I'm glad the people are using the farm for its intended purpose instead of buying the land and eventually selling it to be used for future subdivisions. To take away memories of 4-wheeling, snowmobiling in -30*C weather, falling through the ice in my snowpants and having them heat above the iron woodstove, ect, would break my heart.

It was nice to drive out there and think, and plan, and get things together that i need to focus on in my head. I came home and emailed my boss about next weekend. I actually have it off (so far) and asked if it could stay this way (last minute dogs ALWAYS pop up and I don't know when the last time I had a full weekend off was). Then I emailed Evlyn about our trip, and emailed my friend (who's also my travel agent) about getting things together and tying loose ends. It felt good.

Now it's the shit I don't want to do: like get doctors notes, sort out meds, airport stuff, blah blah. I'm sure it's not honestly all that bad, and that the thought is actually a lot worse than doing it, but ugh. Then I still have to register for the transplant games....

It'll happen. No fuss. Still plenty of time...

I can't beleive it! I need 2 more paycheques (if that even!) and my trip will be paid for! AHH! This is happening people! Saving up for the games won't be that hard either, but I still have to register with the Canadian Transplant Association.

So yeah, the random drive was good for me. I like to go on them and appreciate the scenery and what not, and revel in the fact that I finally have a future.

Hope you're all well!

Saturday, January 1, 2011

New Years Newness

The Finnesaur
Yours truely and Krystal
"White Chicks and Gang Signs" - a tribute to our university years..

My Scary Spice impression

You never know how hard it is to blow a horn until you're too inebriated to get sound out

So that basically sums up my new years! Of course, it consisted of many other aspects, such as makeup, dancing, warm weather, and vomitting, all in one night. Krystal came to my resuce by pushing stupid drunk bitches out of the way, and baracading herself in the toilet stall with me as I suffered the wratch of cranberry vodka, mango and vodka, hypnotiq, and too many feta and spinach samosas.
I realized last night, as I ran up the wooden steps to feed and pee Blue (the Australian sheppard I am caring for at the moment), that this is my first time EVER being all dressed up, and going to the bar, AND BEING ABLE TO BREATHE. I almost started crying. Krystal and I walked downtown from her place and I wasn't out of breath, nor was I out of breath as we took the stairs, and flew all around the place, and raced back home. I never thought of it. I wasn't coughing, or dying from the humidity (yea it was humid and about 10*C). I was out there and I was having fun. And it was a blast :)
My 2nd letter arrived on Dec 24th. I learned that my donor and I are very much the same person: we have a passion for adventure, for wandering aimlessly and walking for hours, nature, being on the go, cooking and baking.
But there is one thing that stood out in the letter and blew my mind.
His university major/degree.
It's the same as mine: Anthropology.
Who else has a degree in Anthro? Not many people. The world works in mysterious ways. Maybe this was meant to be...
So 2011 is here! This year I will:
- get my degree in Anthro!
- go to Europe
- compete in the Tx Games in Sweden
- Meet Evlyn AND Alice
- My sis will get married
- Jenna will get married
- Katey is going to Ireland
- Krystal is going to Japan
- grow up and move on
It's crazy eh? 3 years ago I had just been assessed for my transplant. 3 years ago I was waiting by the phone, hoping to hear that I had been accepted to be listed....3 years.
3 years of craziness.
I'm glad it's over and that I'm on the other side. And i hope and pray that my friends who are waiting don't wait long.