My Double Lung Transplant

Thursday, July 22, 2010

Nobody Knows

...if I go for my IV tomorrow or not.

You'd think i'd be able to remember if i get it every 4 or 5 weeks, but truth be told, I don't really know. And apparently, neither do they. The last time I went was June 25th, and the nurse said, "we'll schedule you for July 25th then..." - making it one month.

But July 25th falls on a I'm wondering if she meant tomorrow, July 23rd, or the week of July 25th, which would mean i go in on the 30th. So i rang the hosp up, and after explaining my confusion, I only succeeded in confusing them. So they have to call up my medical records and look to see if i'm every 4 or 5 weeks, because no one wrote my appointment down. Good thing i called. I'm not angry over this at all - i think it's funny.

Usually, the week I need to go for my IV i feel shitty: unmotivated, can't be peeled from the couch, just generally like I have no energy. But this week I'm not too bad to be honest, but again, it can vary month to month. So we shall see.

Yesterday was exciting. It saw me galavanting over to TO for my bi-annual appointment at Sick Kids. It was scheduled for 11am and i was in an out before 12 lunch! A miracle i say! AND! NO BLOOD WAS TAKEN! WEEEEEEEEEEEEE!

But it doesn't end there. Oh no. In my homesickness for TGH i wondered across the street and into the hosp, where i had the fortune of seeing so many friends! First, before my appt at Sick Kids (the bus got in at 9:45), I went to the physio room where I saw Cynthia (she got her tx in June and waited exactly 3 years to the day). She looks FABULOUS and i couldn't've been more happy to see her. Then i ran into Vivian and his wife (yes, his - Viv is male), and he looks great. He asked me if i'd come back after my appt to join them and a few others for lunch, and I said i'd try my best to make it.

Luckily i did! I ate lunch with Sandi (who's still waiting), Amy and Kendal, Vivian and his wife, and Sharon. It was so lovely to see them all since it's been months since i have! Lunch was at 12 and I stayed until 3:30 just chatting and hanging out and catching up. I truely love my transplant friends more than i think i can verbally express it. If i have one shred of advice for anyone waiting transplant, it's this: make friends with your fellow tx'ers, because they are relationships and friendships that you will have for life, and no one will understand you better than them. Gather them around you and hold them tight and value them as if you value your own family, because unfortunately, you don't know how much time you have with them. You may have years, decades, centuries...or you may only have days and months....But regardless, make the effort to make friends with your fellow tx'er because they get it.

I spent most of my time chatting with Amy, who just had her second tx in January. She's had consistent issues post, and i think it was good for her to see me because she was able to get a lot off her chest. She didn't know i was coming and practically cried when she saw me. She has 2 tickets to see Legally Blonde: The Musical but no one to go with (she doesn't want to make her husband see it), so i said I would go and her face lit up when i told her i'd go with her. So that will be within the next few weeks.

We shared with eachother our transplant hallucinations (she thought her husband joined a rockband and left her), and in the secrecy of the hospital bathroom, we lifted our shirts and showed eachother our transplant scars. It seems silly maybe to some, but it's a moment and memory i will cherish forever, because to me it signifies an established bond of trust and friendship that we have together. It doesn't matter that our scars are identical and that we don't really need to show eachother, but in doing so, it loudly says 'i'm here, i understand, because i've been there too'.

I'm so glad I went to Toronto and didn't just go to Sick Kids and go home. I'm glad i abandoned all sense of time and bus schedules and just let myself be at one with the hosp and my friends and just enjoy the day.

And along those lines, I got my schedule for my 1 year assessment in the mail the other day. These next few weeks will be busy busy, because i also have other annual appointments, and follow ups for the pneumoia (which is pretty much gone, yay!). These next 4 weeks i literally have appts every other day, which is ok. It's normal for me. I should be paid to be a professional appointment-goer i think.

And in the midst of all this, I got a volunteer position with the Ontario Geneaological Society! I am a Family History Indexer, and i read people's family histories and record first and last names in Excel for a name index thing, and email the spread sheet back to the OGS. It's slightly more complicated than that, but that's the gist of it.

AND! I am volunteering for again next Weds, so that should be good!

So yes, lots to do, lots to see, lots to learn. I am excited to finally be doing something.

I think i have written enough for this entry!

1 comment:

Anonymous said...

No one knows the weight of anothers burden. ..................................................