Tuesday, 22 July 2014

St. Mikes appointment

I had a doctor appointment today and while it wasn't all gold stars and high fives, it could have been worse.

My lung function awesomeness of 28% from 2 months ago has not maintained and has returned to my apparent baseline of 24 or 26% (in my disappointment, I didn't remember what the doctor said but it was either 24 or 26%). St. Mikes CF team seems to be more focused on the actual FEV1 number rather than the percentage so if you prefer that, I've dropped from an output in the first second from .9something liters to .8something liters which is still higher than pre-magical-puffer of .77 liters.

The drop wasn't enough for the doctor to want to do anything about it as I'm feeling fine energy-wise and my cough is about baseline (although it's so hard to tell). While it is disappointing, I'm not shocked by the news. I felt my 28% was too good to be true or to be maintained more than a month. While a part of me is hoping that my results were lower today because I was more tired or something, my realistic part thinks it's probably just my lungs getting off the initial steroid high and becoming more accustomed to the medication. It won't be long before I start asking for the better steroids.

In other news, I've lost a few pounds which I don't feel is a huge deal seeing as overall I've gained about 10lb since being here but dietitians always seems to panic whenever there is any decline. I promised to eat more chips and less veggies, even though it's super hard with all the fresh fruit now in season. I just want to eat bowls of fresh strawberries and raspberries. Probably why I lost the pounds in the first place. More whipped cream for me!

I asked about the results from my echo to see if I really do have a heart murmur but of course they had no idea and couldn't get ahold of anyone from the Toronto General to find out. The doctor reassured me that someone would be looking over the results but seeing as how every appointment the doctor reads my chart and looks up the tests for the first time while sitting in front of me, I have my doubts. Apparently someone will call if there was a problem or more likely, I'll find out during my next transplant clinic.

My last exciting piece of news (the excitement bar is set pretty low for dr apts) is that I met my new transplant coordinator. The old one who I saw on listing day to sign papers, handed me a binder, and have never seen again, turns out she has retired and I now have a new person to never see. Although maybe since this person is new and young, she'll be more excited about her job and check in once in awhile.

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