broken record

I started working on a new winter collection of Hattitude jewellery www.GotHattitude.com. It was a bit hard initially, putting the pliers and wires up real close to my face ( I could not see well after transplant) and then of course the shaky hands (which were real bad due to the meds after transplant), it proved for a challenging work day on jewellery. The last month though I got a new prescription, and the shakes have calmed down, so I've been able to work better. The condo was good for working and catching the light in my photo shoot....although I wish it had of been a bit more sunny, but that's November for ya.

My tac level was through the roof the other day...so they've lowered my dose, and my white blood cell count was down to 2.8...at 2 they start to panic, I guess it's pretty much like I'm walking around totally defenseless against colds/flu/viruses etc. So they backed off on another pill, hoping to bring my WB cells up a bit...but not to much, since the whole point is to not have an immune system so that I do not reject these lungs.

I don't want to sound like a broken record, but it's sometimes hard for even me to remember, because I get feeling so well, and think everything is dandy, and start doing things I probably should not be doing...but please if you have any symptoms of a cold, or were just in close contact with someone who was sick, please don't come near me...I'm totally defenseless now and it realllyyyyyy would suck to get sick and wind up in the hospital on IV's or something...so I appreciate it soo very very much, just if you are sick stay away from me for a bit. Thanks! My new lungs say thanks too!

Natalia's one year

Today is Natalia's one year anniversary. This time last year at the eleventh hour, Natalia (www.natanadmarty.blogspot.com) got her lungs. She has helped me so much through my transplant and I appreciate it! She's calmed my worries and was one of the people who made me feel normal.

She could not have said it more beautifully, "A year ago today I received the greatest gift, from a special lady that I never knew. Today I have the beauty of easy breathing, the gift of time, and the possibility of the future." Well said friend. Go Go Natalia and ALL the other wonderful amazing warriors out there. Thank you to all of our donors for allowing us to live.

could you un zip me please?

Today I feel as if the surgeons sewed me up to tight.
The incision is aching to be zipped open and the tightness released.

Monday we asked the team about traveling to Barbados, my home away from home... found out....this will be the first FULL winter in Canada...shudder. They do not advise me traveling before a year. So next July, my trip to Ireland will be my first with these new guys.

A whole winter in Canada...I can't even skip outta town to Florida they said...we shall see how this girl fares.
I guess I'd better start looking for the perfect Snowman hat.....I'll be building a lot of snowmen....maybe even a snowfamily? Is there snow in the city? or just slush? a slushman? doesn't have the same ring to it. At least so far this winter has been nice! Not too chilllyyy.

Toronto living?

What to do...move back home in January or continue living in the city? That is the question.

I'm almost 23 years old. Most of all my friends are now living in the city. I'm single. I hate driving. I love concerts and live music. I want to use these lungs, and walk and explore and do things. The city gives me this opportunity...but maybe the city sucks in the winter? Is it too cold to go out? Do I want to be back home to the country, surrounded by the snow, that I used to once dread?
I am actually looking forward to stomping through the deep snow this year, wearing all the heavy gear, and not getting out of breath. I can't wait to build a snow fort, roll my own snow balls and have a snow ball fight without getting winded.

Today I was able to do a low, low squat and used just my fingertips on my one hand to get up from the ground. Thighs are greatly improved. I'm up to lifting 9 lbs weights ( after transplant I was only doing 2lb) I'm thinking about taking up yoga soon. I think things are healing nicely and I miss being able to touch my toes. Things are stiff after transplant. Someone in the treadmill room told me if you lay in bed each day after surgery you lose 3% of your muscle mass. If I laid in bed for 30+ days, that's 90% of my muscle mass...no wonder I was such a mess after transplant.

Today I cleaned the condo. I did the dishes, swept the floor, cleaned the washroom, put away months of clothing, stripped the bed, did the laundry...then I sat down and realized I did all of that without getting out of breath. There used to be a time when putting a load of laundry into the machine would leave me gasping for air. Now...nothing.

On Tuesday I went back to CF clinic for a check up, and I blew my highest lung function to date on a hospital machine. 2.03 liters. 58%. These babies love me. I am lucky lucky lucky. Thank you.

donor letter

Today I sat down...turned on some Bon Iver, Sigur Ros and other musical tunes of similar genre and I wrote. I wrote to my donor family. I wrote about love, laughter, and life. About what my life was like before transplant, what I my life has been like after transplant, and how my donor saved me. I wrote about how thankful I am that they honoured their loved ones wishes and donated their organs. I wrote and I wrote and I wrote. I hate that they are grieving.
It is just the first draft of the letter...but I have been thinking about writing my letter for a long time, so it was nice to finally put some thoughts to paper.

fog of unhappiness

ugh today is a slump day...I feel in this cloud of sadness...I feel bogged down. Maybe it's because I went to visit someone who just got transplanted in step down unit today...walking through those doors...bad memories. Bad bad memories. I don't ever want to imagine being back there. That time in my life was the worst....so scary, so awful, so so so so so hard....hell and back again.

Gotta shake this feeling. Surround myself in happy thoughts.
#1 happy thought of today....I am seeing an old friend from University on Saturday! wrap myself in THAT feeling of goodness to get out of this funk!

note to self

If you've just had a double lung transplant...where a new organ from a generous person just saved your life....DO NOT I repeat DO NOT watch repo men. A movie all about taking back people's organ's when they cannot make the payments....repossess your home...why not your new organs too...shudder....better not have nightmares tonight.

cinderella

Cinderelly, Cinderelly
Night and day it's Cinderelly
Make the fire, fix the breakfast
Wash the dishes, do the mopping

I was Cinderella this year for Halloween. My FAVORITE time of year. My good friend was Jasmine, the other Disney princess. We did have a Belle, Disney princess but my other friend got sick, and thus could not make it out to Halloween this year. So just the two Disney princesses made an appearance.
I'm not sure why Halloween is my favourite time of year. Perhaps it's because you get to dress up as a princess, a fairy, and all things magical. How I wish this world was filled with magic. (sometimes I think it is...I mean new lungs, your old ones gone? that seems pretty magical to me?)
This Halloween when I spilt my cranberry juice on the floor...I took no greater pleasure in bending down and wiping up my mess with some paper towels....WITHOUT getting out of breath.