Sunday, 26 July 2015

8 month post-transplant!

It's my 8 months post-transplant today! Yay for making it this far!

Last week, I got my marching orders (aka appointment times) for Toronto for my 9 month assessment a month from now. All the tests are the same as my 6 month check-up: walk test, blood work, pfts, bronch (boo!), clinic, x-ray, and ct-scan. It's all over two days but I think I'll book our flights for a few days longer on the end just on the off chance that it takes another day. When I was waiting for my 6-min walk test last time, a man fainted while waiting for his clinic appointment after having a bronch and I have fears that will be me.

I also got a call on Thursday from the respiratory clinic in Halifax last week and while I still don't have a follow up appointment with them (the doctors are on vacation), the clinic nurse who organizes everything called to inquire about if anyone from Toronto had been in touch about blood work. They had not so she frantically called them and left many angry messages. One of my routine blood work levels were higher than the last time but after several calls, it turns out they just want to monitor things and will treat if continues to rise.

However, the angry messages were more because my blood thinner levels are still high and Halifax had contacted Toronto to pass on the responsibility while Toronto didn't seem to be doing that. So for the past month, while my levels have been high, no one has told me what medication changes to make so I've just been carrying on. I feel as though I could probably make adjustments myself but I'm not positive I should be the one making that decision.

It's frustrating as when the levels are high, I'm super paranoid about cutting myself in any way. Thankfully, I did hear from the anti-coagulation nurse in Toronto on Friday saying she will keep following me and to have things tested on Monday (which was already planned) but no word about what to do in the interim to lower my levels.

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