Saturday, 25 October 2014

Back at St. Mikes.

I've arrived in the hospital, I didn't have to go through the emergency department or admitting. It was really nice to just go straight to the floor and have them call down for a bracelet and to tell them I'm here. My day nurse was fantastic and I hope I have her again tomorrow and every day. She can never have a day off. The other nurses on this floor have all been very nice but this one was superb. She was prompt, had everything waiting in my room for me, knew all my meds, and was chatty but not in the weird 'let me tell you about my family, work drama, and everyone I've ever met with CF' kind of way. It was a very good way to start the visit.

I'm on one IV antibiotic twice a day which isn't bad. My sputum culture report isn't done yet so once the doctor eventually gets that, the medication will be tweaked accordingly but for now, she is happy with what I'm on. The nurse warned me about it causing serious nausea and for the first few hours I thought I might be okay. Then I went from feeling fine to wanting to curl up and/or vomit in the span of 15 minutes. They're going to give me an intense anti-nausea meds. Bring on the cancer drugs! (It's the anti-nausea that they give chemo patients. For some reason Amy and I refer to it as 'the cancer drug.' It neither cures nor gives me cancer.)

The doctor also told me that I am now officially on the status 2 'high priority' list as of yesterday afternoon. This was news to me as I though I've been on it since my last hospital visit and definitely I told everyone I was. Apparently that was all lies.

The CF doctor said after my clinic visit on Wednesday she emailed the transplant doctors at Toronto General to confirm my status only to be sent a response of "but she doesn't need to be status 2, she is doing so well at physio." The CF doctor thankfully responded with a "that is because is a determined person and not because her lungs are any good. Her lungs didn't respond well with the last round of antibiotics so believe me when I say she is more sick than she looks." They had rounds yesterday and decided to finally bumped me up.

I understand why stuff like this happens. I have too many doctors that it's easy for the less important stuff like status levels to be missed. With 3 different CF doctors at clinic, one of them can send away a email to 'confirm' something but then don't follow up or the message to follow up doesn't get passed to the next CF doctor on call. Also, I only see the transplant doctors every other month compared to my CF doctors which lately I've seen almost every week.

It seems as though the transplant doctors base their decision of 'high priority' more on how you function day-to-day and at physiotherapy over your lung function number. Someone could have a higher lung function than me (and most waiting probably do) but would require a wheelchair or have more physical limitations because it's effecting them different. Especially if that person has had a rapid decline. There is a huge difference between my declining from 70% to 19% over 10 years (I can't actually remember when I was at 70% but it was definitely over 10 years ago ), and someone declining from 90% to under 30% in a year.

The body adjusts remarkably well when change happens slowly. It's not so happy with sudden fluctuation. Much like a frog. So in that sense, it's sensible that they look at how people are physically functioning rather than bumping people up when they hit a pre-determined number. It makes logical sense, it's just frustrating when you're the one person with horrible lungs that can somehow still function relatively well.

The lesson I've learned for anyone reading this who is starting the lung transplant program, if your lungs are not responding to treatment but you aren't status 2, is to not try very hard at physio. Or make an effort but not during the walk tests.  Or pretend to be more physically weak than you are and work out for real at a different gym. Or complain a lot to the physiotherapists. These are actually all horrible lessons. I would really like the transplant doctors to take my CF doctors more seriously.

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