I ended up bailing on the fundraiser Saturday night as I was still feeling terrible. Amy and I had made a joint speech and Mom read my part. I hear it went very well and they raised a lot of money. Thank you to everyone who showed up and supported CF research.
After resting all weekend, I still feel about the same. My hemoglobin is stably low which is frustrating as it's low enough to make me feel terrible but not low enough to trigger needing a transfusion.
However, because my fev1 declined a bit over the past week, the Toronto and Halifax teams are now investigating. I started the antibiotic for my CMV infection last week and I haven't felt any side effects so far from the medication. Although I already feel pretty horrible so I'm not sure I would notice another change. I had my regular bloodwork on Monday before heading off to Halifax for my bone density scan. The scan had nothing to do with how I'm currently feeling, it was a regularly scheduled event that I'll now have done yearly as the steriods I'm on are bad for the bones.
Yesterday, I got many phone calls from the Halifax and Toronto teams about what they're going to do as follow up. The Toronto team has some idea that I can just 'pop in' to a Halifax clinic and be seen that moment. The Halifax team said "we don't need to see you in order to send you for tests." It's frustrating trying to deal with two different teams that have different ideas of what I need to be doing this second.
When the Toronto Dr called me last night at 730pm, he asked me what the plan was from the Halifax team to which I responded that "I have no idea!" He rambled off a list of things that he wanted me to do (including just showing up at the Halifax clinic to be seen today) and then briefly commented that they may want to bring me to Toronto for the investigation.
Today, my Toronto coordinator called mentioning all the tests they want to run (CT scan, broncoscopy, colonoscopy, etc...) and also mentioned 'bringing me up to Toronto early.' The Halifax team is trying to figure out what they want and how they can fit me in for all the tests I'm suppose to have done.
So basically, I have no idea what is happening right now. I was sent for
an x-ray yesterday and for some iron blood testing today. That's about it. I hauled myself to yoga last night and really struggled through it.
Anything remotely cardio based makes me feel like I'm going to faint. I keep trying to push through my low hemoglobin and am finding out that it's pretty much impossible. Stupid blood cells.