Arghhhh

I hope everyone had a great Easter weekend! I had a great time with family eating yummy food. So much so that my weight was still up today at my doctor appointment with the CF team at St. Micheals. Yay! I actually believe their scale this time because my scale at home also tells me that I've gained weight.

I've been feeling good health-wise since my last visit so I was confident that my lung function was going to be the same or up. And I was wrong. It was down by 2%. Aaaaarrrrgggghhhhhhhhhh. I really wanted to scream that their machine must be broken but since I did the test three times with the same results so that probably isn't the case. Stupid lung function.

I was super nervous they were going to hospitalize me or start me on a host of crazy antibiotics that would zap all of my energy but thankfully no. The doctor said because my lungs didn't sound worse and that I don't feel sick, it wouldn't make sense to pump me full of more meds. Obviously if I wasn't on the transplant list they would be treating it but they seem to be hoping that I can remain stable-ish until I get a transplant. I go back in a month and hopefully it will have gone up again and I was just having an off day today or something.

I thought this would change my transplant status so I would now be in the 'high priority' grouping as  the nurse practitioner went on and on last week about to the importance of telling them when anything changes. But the doctor today said it wouldn't. They really need to make their information a bit more consistent as now I really have no idea what classifies a person as 'high priority.'


I'm pretty bummed about my lung function dropping but I'm trying to be zen about it and am repeating to myself that it is pretty much out of my control at this point. I will focus on the fact that if I wasn't working hard at physio than it would probably be even worse.

Amy arrived today and I imagine I'll be busy too busy with her to obsess over this latest setback. Or blog. If I don't update as much this week, it's because we are off dining on copious amounts of sushi and apple fritters.