July 27

It's been just over three months since I've been listed-- that's the first trimester of listing, gone. Now the real fun begins, right? This is the part where I get (acceptably) fat and walk around with an energized glow about me, excited by the thought of my new arrival. Scratch that, this is the part where fantasy wilts under the shadow of real life. That 'glow' is really a sunburn from your Cipro induced photo-sensitivity, that fat behaviour is getting you nowhere because you can never replace the calories you're burning, and that new arrival is already causing you stress and sleepless nights because you don't know when it's coming or if you'll even know what to do with it when it does. Things like this make me write run-on sentences without a thread of guilt.

Where do I begin? After my last post, I went on a course of ciprofloxin for a month (just an oral antibiotic, no big guns) and it seemed to do the trick. My constant chest pain dissipated after 3 long weeks (talk about clingy) and I felt back to 'baseline' after a month--just in time to soak up the sun in Parry Sound where I visited my sister and her boyfriend.

During my Cipro days, we also packed up and moved downtown to a condo on Bay and College. Why? Well for one, my parents are sampling condo living for a year (to see if they can stand it or not) and secondly, to make my hospital-filled life a slice more manageable. Of course, during this hectic time, I also got a peculiar call from my transplant coordinator telling me that I need to see a haematologist because my antibody levels came back quite high. I of course have no idea what this means, assume it's bad news, google and WebMD the crap out of the term and determine I'll probably die a horrible antibody-attacked death. Naturally, I follow this revelation with a cup of tea, and an episode of the Bachelorette to numb any traumatic google-inspired thoughts.

The haematologist appointment that follows is decidedly less dramatic, though the location was terribly misleading. I arrived at Princess Margarete hospital and promptly proceeded to get lost for 30 minutes, then finally found myself in a dialysis lab, which can only be described as cold and sad. I sat in the waiting area, with a hospital bracelet on (again, misleading), threatening to throw up my thought bubbles at any minute. For the record, they mostly consisted of: "WHAT THE F*CK?" "I BETTER NOT BE GETTING DIALYSIS TODAY!" "THIS PLACE IS DEPRESSING" "IS THIS WHAT I HAVE TO LOOK FORWARD TO AFTER TRANSPLANT" "WHY ARE THE TVS NOT ON IN HERE?" and the more obvious... "I'M GOING TO HURL ALL OVER THIS FLOOR, CHAIR AND PAMPHLET". Needless to say, the build up was far more fascinating than the peak of the plot. The doctor arrived then sat me in a dialysis chair and I instantly switched into my 'crack jokes to defend yourself' position. Then the doctor wheeled over with his clipboard and asked me a bunch of boring questions, which apparently pertain to high PRA (antibody) levels and we found out that I fit none of the 'typical' categories: I've never been pregnant, I've never had a blood transfusion, and no I have not had a transplant yet (but thanks for rubbing it in). Actually, sorry I did have a category, it's called the "we don't really know why" category-- AKA misfits. Story of my life. 

Then, when it became clear I wasn't going to be stabbed and drained anytime soon, I listened to his explanation about my 'situation'. My PRA level is 70, which means that out of every 100 possible donors, I would reject 70 of them. In the past, they would have to wait for the 'perfect' match for me, or (more likely) not transplant me at all. Essentially, my higher antibody levels mean that I'm at higher risk for insta-rejection, meaning the second they transplanted a lung into me with antibodies that counteracted mine, my body would start killing it. SO to avoid shrinking my donor pool and avoid such deathly events, they have a new procedure which they will use on me (IF they don't find the perfect match). The procedure has apparently been done for years (but only on 60 people?), but I'll admit it creeped me out at first... I will have to be placed on heart-lung bypass during the surgery so they can start 'cleaning' the antibodies out of my blood right away. I will then get dialysis treatments for about a week after surgery, only the purpose of the dialysis is to clean out my antibodies in what's called a plasma exchange. This is taken from donor blood (which is why I nag my family to donate blood). So that's that, I'll be a cyborg for a few hours, and hooked up to a few more lines than the average, but it's better than the dying on the operating table option that I had originally envisioned. 

As for my current health, my lungs have been awesome since stopping the Cipro a few weeks ago--even in this heat. Which makes me YET AGAIN, flip flop about my decision to be on the transplant list. Even at 27% I'm proud and feeling grand--I'm just a deluded person, who will never know true sanity, what can I say? All I know is that this waiting game does not get easier, it gets harder and increasingly boring. And now I'm onto sleepless stress-filled nights, dreading the call of the pager (aren't you supposed to be happy when it goes off? Or is that also part of the fantasy?) and hoping I don't work myself into a stress-induced cardiac arrest before the new lungs come.

Here's hoping.
Cheers!