Tuesday, 31 July 2012

My Wilting Mind

I don't know if I mentioned this before, but I received my call to be listed during national organ and tissue donor awareness week!!!!!

I'm sure most of you signed up to be donors that week, if you hadn't already, right??

So I'm realizing that I'm definitely losing my mind. Here are 3 recent examples:

1. I am sitting in the wheelchair with Griffin on my lap. My head spins around and I blurt out frantically "Where's Griffin?"

2. I talked to Shay today on the computer (she's 8) and I say, "Why aren't you in school?" It's summer.

3. I have consistently thought throughout the day that it's Sunday. Even though Sunday was only 2 days ago.

I've decided that it's official and I will commence the search for my intelligence. If you find it, I will give you 1 tall blonde with hazelnut and 15 red skittles. 

Today I was reminded of how precious life is. We are all lucky to have lived for as long as we have. We all will be extremely lucky to live another day, another week, another month, etc. Life is too short for regret and hate, too short for what if's and I wish I would have's.

Make sure if you haven't told someone you loved them, do it right now...I'll wait.

If you've been too scared to speak up for yourself, do it. Your coolness will go up a level.

And if you've always dreamed of dressing up like a donkey and running up and down the streets - don't wait. Do it today.

I will not lie. The truth is, I'm not scared of the surgery, but what I am scared of is all the scarey stuff that can happen surrounding lung transplants. I am 98.9% positive that everything will be fine, but there are moments when I think of what can go wrong and of some online blogs/journals I've read that didn't end well. 

And then I remember that I'm invincible and nothing can stop me. I'll unleash my crazy mixed martial arts skills (I learned these in a dream once) and "pound and ground" any bacteria/viruses/other complications standing in my way.

I would expect you to do the same. Here is how:

I tried to clean today without wearing oxygen. The tubing can get in the way and wrap itself around absolutely everything in it's path. Good times. However, as soon as I started I realized there was no way I would accomplish anything without it. For some reason cleaning, breathing like Darth Vader and then my head smashing into the floor doesn't sound like a fun Sunday...ahem...Tuesday.

I'm very good at procrastinating, which is great as it allows me to go at a pathetically slow pace and save lung power. For example, as I was cleaning, I was also talking to my fantastical friend Jackie.

Jacks, do you realize we talked for over an hour??!!

I forgot to tell a park story from yesterday! Holy mother. Okay, so we are all standing around (me sitting) talking, when a man walked up to our group and asked for money. This is not abnormal in Toronto, but what happened next was shocking.

The man was smoking. John asked the man to please move away as I was sitting there with oxygen. Smoking guy grunted and turned away to leave. All of a sudden he turns back and flicks the cigarette in my direction.

I caught on fire, exploded and burned to the ground. Then I magically reappeared with brand new lungs.

That, or Hilda stomped the cigarette out.

I'd like to go with the former.



We're going to go back to the theatre as it's $5 Tuesdays! We really know how to live life on the edge.


  1. Love you and your sense of humour Gurlfren!

  2. Thanks for the morning laugh Jess! And, because of your post I told my younger brother I love him ... ahhhh! Now you'll have to excuse me, my donkey costume has arrived ;)

    1. Ooooo, let me know how the donkey roaming went!

  3. You are my hero Jess and dont let this go to your head. You are the strongest person that I know and my best friend. I know that post transplant you will do great. You are like Batman, you will rise again and fly above us all and of course bet us in cards when your back here.LOL Love ya girl.xoxo

    1. I do have huge muscles. Love you tooooo

  4. Hey Beautiful Chick!!!

    Are you calling my name?!?! Are you looking for someone to chat with about being scared?!?! We all are – you wouldn’t be “normal” if you weren’t… Or, at least, we’d be far more abby-normal than we actually are if we weren’t…

    And not knowing what day it is is totally normal too… Every day is the same in your world now. All of your survival routines are the same every day – it’s not like you have a weekend where things suddenly are more relaxed. It sometimes helps when you have a caregiver who goes to work Monday through Friday, but, sans that, you’re screwed. But what does it matter – the people who know you and love you know you’re not an idiot. And the rest don’t matter… (Forgetting Griffin in your lap is a whole other issue – but if you’re like me, insanity doesn’t run in our family, it strolls through taking its time, having a long visit with each one of us...)

    The surgery is scary. Any surgery is scary. They’re cutting you. They’re taking out your crappy old lungs – but those crappy old lungs have been keeping you alive for many years. And they’re putting in new lungs that you don’t quite know how to use yet. But use them you will – and they’ll work – and the difference in the O2 and CO2 exchange is freaking amazing.
    There are trained professionals working on you, who have done this hundreds of times – they’ve seen almost everything, and the things they haven’t seen, others have seen, and they have easy access to the experience of virtually everyone. Toronto started this whole thing – you were the first to successfully do lung transplants, and have been on the cutting edge of many developments.

    In our support group early on while I was waiting, I remember telling the group I was afraid of the surgery… Afterwards, several of them came up to me and sat with me – and told me not to worry. Yes, there will be pain – but it will be manageable and survivable. The pain management teams will have you well covered. Yes – things will go wrong – there will be bumps – but you’re closely monitored and many are anticipated… They will, and you will deal with them – and survive them.

    You’ve been reading blogs and whatnot about all the different things that can go wrong, and some do not have good outcomes – it’s good to know the potential bumps, and what to look for – but then you need to file them and not dwell on them. Remember, 85% or more of us survive beyond a year. Freaking 85%. The likelihood that you will be in that group is HUGE!!! Actually, over 85%!!! Them’s not bad odds…

    I would do it all again, Jess. In fact – if they came to me and told me that something is drastically wrong and they needed to do my surgery again tomorrow for me to live beyond next month – I would be in a hospital gown asking for directions to the OR.

    And – I’m being very honest – over the years I’d dealt with a number of collapsed lungs, followed by chest tubes and schlerosing – and I remember some of those experiences to be MUCH more painful than the entire transplant experience. Really.

    (End of part one – character limitations…)(Not mine, blogspots…)

  5. (Beginning of part two – character limitations…)

    And – you are not only invincible with crazy, dream inspired, martial arts skills – you are a CF warrior. Your life has been surrounded by medical situations. You know hospitals, you speak their language. You’ve dealt with medications, routines, silly-$hit-you-know-you-gotta-do – compliance – all of your life. That makes this transplant stuff and all of the stuff that comes afterwards natural to you… Too many patients have not lived this life… They’re, like, “I gotta take how many pills?!?! – HOW often?!?! Oh, I simply cannot do that… Do they have it in a liquid form?” (Seriously…) They feel good – they stop their drugs – they stop monitoring. They die. That’s not your MO.

    Many of us CF patients adapt to this situation pretty well – we’re already accustomed to this life… Imagine being strapped to all this crazy stuff, which you’re already dealing with and have all of your life – but being able to BREATHE, and run and play and live!?!? We do well because we know how to be compliant – we know that things that seem unnecessary really ARE necessary, and we know how to watch and care for ourselves…

    And wear your damn oxygen!!! Right now, living without it doesn’t prove your strength – it’s potentially taxing your heart and your brain. Tuck the vanity away until you never again need oxygen – and wear it often now – especially when you’re doing anything involving movement or excess thought.

    And taking your advice: I’ve never met you, and I don’t really know you, but I love you. We travel the same road… In 12 years, you need to be where I am. And I hope we’re still exchanging messages then… Now I’m going to go dress up like a donkey.

    Love, Steve

  6. Steve, I love hearing from you. You are full of great advice and you are just what I need sometimes. Thank you for everything you said.
    I know how amazing Toronto is and what a leader they are. I feel 100% confident that I'm in the right place.
    I know the compliance thing is bang on. We know a life full of nothing else. It would be too weird to not have a mountain of pills to take every day.
    Please know how grateful I am that you found me, or I found you - I can't remember which. Thanks for paying attention to my life and being so inspirational.

    1. Anytime, Chick... I'm glad we found each other too... And sorry about the length. (OK, not so much sorry... It's what I do... I've already got a reputation among our Organ Procurement Organizations and medical folks that, when they send me a 5-word simple question, they expect 8-10 paragraphs back...) Love, Steve

  7. I can't believe that man flick his cigarette at your direction?? holy smokes! what is wrong with people these days???

    I am a new reader. I like your sense of humour! :D I can totally relate with the need to breathe better. I have a lung disease called pulmonary hypertension!

  8. Honestly, there is a huge problem with the homeless and mental health. It's quite sad really. You feel trapped between being scared and wanting to help them.
    Glad you're reading! How are you feeling?

  9. You're my personal leading man Jess as well as do not allow this particular visit your face. You're the actual most powerful person who I understand as well as my personal closest friend. I understand which publish transplant you'll perform excellent. You're such as Batman, you'll increase once again as well as travel over all of us not to mention wager all of us within credit cards whenever your back again right here. LOL Adore ya woman.

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