Keeping on keeping on

Well, things haven’t exactly been going well around here. But then, I didn’t expect things to go well. At least I’m not disappointed.

After 3 weeks in the hospital, I’ve made no improvement. My lungs are still horribly congested, I’ve needed more supplemental oxygen (currently up to 5 liters at rest), my heart rate is sky high, and my endurance is terrible. Honestly, I feel like I may have even gotten slightly worse. If I did a pulmonary function test now, I have a sneaking suspicion that my numbers might actually be lower. Sigh.

My pseudomonas infection is being extremely stubborn and resisting all the antibiotics. The only ones left are ones that have risky side effects, such as hearing loss or kidney damage, or experimental treatments. I’ve already been on one antibiotic called Amikacin, which is related to Tobramycin and can cause hearing loss. Unlike Tobramycin, however, thus far Amikacin has not made my tinnitus worse, so we stuck with it – until this week, when a test showed that my hearing has deteriorated since the last time I was tested a year ago. Since the IV Amikacin wasn’t having a huge impact anyway, we switched to nebulized Amikacin to preserve my hearing. Most of my hearing is still at the low/borderline end of normal, but apparently I do really poorly with high frequencies. Whatever, who needs high frequencies? I’m not a dog!

I’m also on IV Colistin, which can cause kidney damage. We’re monitoring things very closely, and so far so good. Unfortunately, it doesn’t seem to be doing much in terms of actually making me feel any better. They’re now in the process of getting access to an experimental antibiotic which I may or may not be resistant to. We already determined that I’m resistant to the other experimental antibiotics – which actually impressed me, my super pseudomonas is resistant to drugs that AREN’T EVEN OUT YET – but for some reason this last one won’t let you test for resistance until you get approval to take it. So we’re going to start the drug and THEN test it, which seems a little backwards, but whatever. I’ve definitely seen weirder and more backwards things in the medical field.

They’re also getting things set up for me to start treatment for the NTM (non-tuberculosis mycobacterium). They don’t really think that’s the cause of my problems, but we’ve treated everything else so that’s the only thing left. Fortunately, they seem to have decided that nebulized Amikacin is adequate and I will not have to use IV Amikacin or Tobramycin. They’re still working on getting access to one of the other antibiotics I’ll need, but hopefully that should be settled this week.

On Monday I finished the last of my pre-transplant testing. Some of the tests are to determine how sick and in need of a transplant you are, but most of them are to make sure you’re healthy and strong enough to actually survive a transplant. Thus far I seem to have passed without a problem, so we’re all expecting the transplant committee to approve me when they present my case again on Thursday. It’s also likely that I’ll be listed immediately since I haven’t shown any improvement thus far.

I’ve been spending a lot of time time sleeping lately. Aside from normal hospital exhaustion, I also have pneumonia exhaustion, and just breathing takes a lot out of me these days. I’m also hacking up alarming quantities of mucus, which is very draining. I’ve spent a fair amount of time being extremely cranky, as Katherine and my mom can attest to. It’s hard to maintain a positive outlook when you feel so awful so much of the time. My nurses have definitely noticed that I’m not my usual chipper self, and that my health has deteriorated pretty dramatically just in the last few months. But they also say that I have a good attitude for going into transplant, and they’re hopeful that I’ll do great and feel so much better afterwards.

We’re hoping that I MIGHT be able to go home next week – not because I’ve recovered, but because there won’t be anything else they can do for me here. Once they get me set up with the last antibiotics to treat the pseudomonas and the mycobacterium, there isn’t really anything they can do here that I can’t do at home. It’s definitely better for me to be at home if possible, where I’ll be away from all the hospital germs, moving around more, and eating what I want when I want it. Activity and nutrition are VERY important pre-transplant, as the stronger you are going in, the more likely you are to recover well. I’m not thrilled that I came in with pneumonia and will likely be leaving with pneumonia, but if pneumonia is gonna be my way of life these days, I’d much rather have pneumonia at home!