I’m hydrating this new year thanks to an external catheter system
Let me explain something called “pee math.”
I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before takeoff without it making you need to go to the bathroom in the air. Pee math gets exponentially more difficult the longer you’re on board. How do you go 10, 11, 12 hours without going to the bathroom?
I haven’t been on an airplane since I was single-digit years old, but I’m intimately familiar with this kind of mental arithmetic. It was, for the longest time, the bane of my existence. So many of my health problems could be solved — or at least helped — by hydrating.
Fatigued? Drink more water!
Skin problems? Water.
Persistent sinusitis? You guessed it.
But drinking more water just wasn’t something I could feasibly do. Going to the bathroom is easily a 30-minute ordeal. I don’t have that kind of free time, especially when I’m scuttling between medical appointments like a bug with its head chopped off. If I drank as much water as I was supposed to, I’d lose probably a fourth of my day to toileting.
Love at first use
I tried all sorts of hacks, including incontinence products and electrolytes, that only made things worse. Then I went to Alabama to buy an RV and ended up in the hospital with metabolic acidosis, when acid builds up in the body. While there, I was introduced to something called the PureWick.
Gone were the days of invasive catheter insertions that left me traumatized. The PureWick draws urine away from the body through the use of an external catheter. It’s similar to a G-tube in that, once you have the device in place, all you have to do is connect it to the accompanying machine. I could pee in bed without worrying about wetting the sheets — or myself.
The PureWick didn’t just dazzle me. It dazzled my parents, too, who watched the nurses insert the catheter with all the interest of someone with a life-changing purchase on the horizon. For all we knew, the PureWick was only available in hospital settings, but I was insistent: We had to try.
My new favorite gadget
My mom ordered the system when we got back home to Minnesota. There was a bit of a learning curve involved, but we were hooked by month two. I could hydrate as much as I wanted overnight. It didn’t solve the ultimate problem of pee math — calculating how long I could hold my bladder when out and about — but it was something, and I was ecstatic.
Then I was beset by genius.
The catheter wasn’t comfortable, but it wasn’t uncomfortable, either. What was stopping me from using the PureWick during the day? I’m in my studio most days anyway, tapping away on an onscreen keyboard; there was no reason I couldn’t connect the catheter while sitting upright in my chair.
My parents were convinced the catheter would irritate me, but I wanted to try it. Right around this time, PureWick unveiled its new “flex” catheter, designed to stay in place no matter the position. The flex catheter was slightly more expensive than the original, but we ordered a box just in case.
Suddenly, I could hydrate as much as I wanted. All I had to do was disconnect the catheter when leaving the house. (The PureWick can last up to eight hours on battery power, so we have plans to tuck the machine in a carry-on bag when traveling. I won’t have to worry about dehydration at this year’s SMA conference, or ever again, really.) And the best part? No pee math required.
There are, of course, some drawbacks. The catheter itself is finicky and needs to be placed just right. The flex catheter makes positioning easier, but it’s not as simple as, say, a G-tube.
Then there’s the issue of finances. The system is expensive, and for some godforsaken reason, the company doesn’t take insurance. Because the PureWick is billed as incontinence supplies, it’s unlikely that Medicare or Medicaid will cover the cost. The ease of mind is worth it, in my opinion, but it’s definitely something to consider when researching the system.
When I started this column in 2017, I knew there were some topics I wouldn’t touch with a 10-foot pole. Toileting was one of them. I debated even writing this piece. But the PureWick has made such a difference in my life that I felt it was worth the embarrassment of typing the words “pee math.”
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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