The doctors gave me an ultimatum. I could either stay in hospital for another week or go home on home IV’s.
I think you can figure out which option was most attractive.
I’ve been working very hard at resting, sleeping, eating and drinking. No joke, it actually is hard work. We’ve all had things in our lives that we have to do, and because we have to do them, they are hard work. Having to eat lots of food, for example, makes it hard work. Even when the food is bacon, cronuts, cheese and chocolate. Yep, even then. My efforts are also hampered because my appetite has decreased and I can’t eat quite as much in one go as I used to. Right now, eating is a massive chore.
After my bowel threw a tantrum I dropped down to my lowest weight in seventeen years. If you look at me you won’t see a skeleton and recoil in horror. I’m skinny…. but I don’t look ridiculously skinny. I simply don’t have a buffer of stored calories to tide me through another temper tantrum from any disgruntled organs. I need an extra five or so kilos of weight before the dietician will take the “MALNOURISHED” sticker off my chart. I am trying to embrace multiple between-meal snacks and am well on my way to a Sustagen addiction.
Meanwhile, Dave is also skinny, not drinking enough, and prone to bouts of trying to do too much. I spend much of my day pestering him.
“Oooh, look! It’s time for a snack!”
“Here’s yet another glass of water. Bottoms up!”
“Stop right where you are. Don’t take the rubbish out. I’ll do it.”
He may not thank me, but his kidneys will.
I just attended clinic for a review. “What the heck” my doctor said, “let’s run a few more tests!” I’ll be going back for another review in three weeks when hopefully everything single thing about my health will be firmly back at the awesome end of the spectrum. During the extended discussion with my doctor I accidentally learned that I have a “mostly absent pancreas”. Apparently this is pretty normal for people with CF who are pancreatic insufficient. I was under the impression that my pancreas was merely useless, which is annoying enough, but it turns out it’s almost absent. It’s not every day I find out I’m essentially missing a major organ, so today will certainly be noted as a surreal experience.
Dave and his presumably-mostly-absent pancreas will be meeting with his doctor next Wednesday to come up with a plan to get him healthy. At the moment they have concocted what I like to call the “No Plan” plan. That is, he will stop IV’s, resume his normal life and… we’ll see what happens.
We have received sensational care from our medical team. They have seen one or both of us every day for about three weeks straight. They have truly gone above and beyond. We are super thankful for everything they have done for us and everything they will do for us for as long as we both continue to live. We are so very lucky to have access to a centre of excellence in CF care.
Honestly? May 2015 has been a shocker. We are about to enter a new month and I sincerely hope it brings us both better health!