Wednesday 5 November 2014

The neverending doctor appointments at St. Mikes.

This week is a week of doctor appointments. Or rather, two dr appointments. That is enough for me. Yesterday I had my transplant clinic which is the biggest waste of time for everybody. They basically have me tell them everything I've been doing at St. Mikes, ask me how far I can walk before getting short of breath, and send me on my way. It's usually all nurse practitioners so it never takes very long but it's still annoying to have to go just to tell them everything they could read on the computer. It would be different if I didn't have another hospital following me very closely. Now that I'm status 2, I will have those appointments monthly. Urg.

My useful doctor appointment was today. My lung function was down to a Fev1 of .70 , I don't know what percent that would be but my guess is 20% (I think .67 was 19% for me, so around the 19-21% area). It means that the spike was definitly from the medication and that my lungs aren't able to maintain the increase once the medication is gone.

The good thing, if you want to call it that, is that there was a recongized bug on the sputum culture so the doctor was able to prescribe a new oral antibiotic that targets the specific bug. It's one that I grew over two years ago and was hoping had gone forever but it has apparently returned to live another day.

They sent me home on the new oral antibiotic to take along with the one I was discharged home from the hospital on. I tried arguing that the latter one is doing nothing as my lungs decline while I'm on it so I should stop taking it but they kept me on it with arguments like 'research shows it's better to double the antibiotics to prevent superbugs.' Even though at this point, I'm probably one giant superbug seeing as I've overused antibiotics my entire life. Although I suppose it's probably best to avoid trying to create more.

My PICC line is still in, they said next week if I'm not admitted then they might consider pulling it. They were not very hopeful that I'll be off IV meds for very long. It's been flushing well ever since my trip to emerg. Maybe I'm just more forceful now in applying pressure or something because it's been flushing smoothly. It probably also helps that I'm diligent in flushing it every day whereas before I would leave it to every other day. One trip to the emergency department is enough for me, I have learned my lesson.

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