Compliance

The hair... I suppose it's growing, but it feels and looks just like it did last week. But I saw a friend last weekend, and my hair is almost as long as his. It's pretty short, but still - having longer hair than someone will be a nice milestone!

This week I've been contemplating compliance as I complete my FOURTH week with JP drains hanging off my sides (1-3 weeks is normal), and as I pray for a friend's lung function tests to have better-than-expected results.

In healthcare, we use “compliance” as an assessment word. As in, is our patient compliant with the plan we’ve worked out to make them the healthiest they can be? 

It’s companion word, “non-compliant” feels judgmental, probably because we use it when we decide the patient is not cooperating with their plan. Of course, there is a spectrum from 100% compliant to 0% compliant, and we all fall on it somewhere.

As a patient, I have a different perspective on compliance. For example, I’m a terrible pill-taker. Tell me to do something every day at the same time, and I can guarantee you it’s not going to happen. I’m getting better. With my post-surgical drains still in place, I have to take stinky antibiotics several times a day (they really do smell awful). What a pain! But they’re very important – the last thing I want after all this is to lose my tissue expanders – or worse, my own “tissue” – to an infection! I also have to take an anti-estrogen (anti-breast cancer) pill every day for the next 5-10 YEARS. Uff da. I’ve set a daily alarm on my phone for that one. I’m not taking it at 1pm exactly, but so far I’ve taken it at some point every afternoon.

If you’re healthy, you don’t get a free pass from the compliance wagon. Think exercise, multi-vitamins, healthy eating… everything to maintain your healthy status as long as possible, and be as strong as possible if you do get a big diagnosis.

I’m striving to be on the upper end of the compliance scale. Honestly, what I have to do is pretty minor. It’s certainly given me new insight into people with chronic conditions; who have exercises and medications and therapies to manage every day for the rest of their lives.

I have a young friend who has cystic fibrosis. CF is kind of a lung disease – really, it affects the whole body, but its worst manifestations are in the lungs. It’s a rare genetic defect. Now, we test for it at birth along with a bunch of other metabolic conditions. Before that, it was often identified when moms told doctors their baby tasted salty. Pretty cool, right?

The babies taste salty because CF is an imbalance in the body’s chloride level (remember, salt is sodium chloride). For some reason, the result is thick, sticky mucus, which commonly builds up in the lungs, which makes breathing difficult, and in the GI tract, where it blocks the path from the pancreas to the intestines, preventing digestive enzymes from reaching the intestines and making digestion difficult.

Patients take digestive enzymes every time they eat to compensate for the deficiency from the pancreas, and they have some form of therapy every day to help clear their lungs. Inhaled medications open the airway and loosen mucus, and then a combination of percussion (hitting the chest to loosen and move mucus) and coughing (to get mucus out of the body). In other words, hacking up luggies several times a day (you know what I mean? Spelling credits go to my husband on that one – girls can’t spell luggies, and MS Word doesn’t like it either). For the percussion part, my friend has a cool vibrating vest that she uses for about two hours every day. But luggies… not fun for a teen girl, so the thick, sticky mucus stays inside, and we pray for her lung function to be preserved any way.

So I think about compliance: how important it is, how hard it is, and how patients have to find a balance. Knowing why the routine is important and what happens if you cheat or ignore it is a big, huge part of compliance. So is determination. Some people are good at the regimen of daily must-dos, whether it’s running at 5am, taking pills on time, or choosing dinner at home over McDonald’s, even though it’s easy, fast, cheap, and predictable. Others of us don’t love routine and sometimes want – or need – to take a break from the “musts” and their reminder that we have tests and treatments on record to prove we’re no longer invincible.

And now… it’s 2:30 so I should probably go and take my daily anti-cancer med and those smelly antibiotics. I think I’ll start using my antibiotics as a reminder to pray that my drains can come out SOON.

But first… I “have” to do a few other things upstairs. Like rescue shoes, hats, and soap from my dog - eek!