Apparently it’s HPN Awareness Week. HPN stands for Home Parenteral Nutrition. Which is another way of saying IV (intravenous) nutrition at home. Which is what I do and how I get the majority of my nutrients and fluids. Because my stomach and intestines don’t work properly. Because of a number of different reasons all kind of working together.
(I usually refer to it as TPN for Total Parenteral Nutrition, but TPN is often used interchangeably with HPN when the setting of TPN delivery is the patient’s home.)
I don’t really pay attention to all these awareness days and weeks and months anymore. It usually just feels like an echo chamber of the people living with the various conditions they are raising awareness for being the only ones to really pay attention to each other’s posts. And sometimes it’s validating, but a lot of times it just feels like a reminder of how sick I am and how much it sucks to have what I have. But that’s just me.
It happens to be HPN Awareness Week and that happens to tie into what I was coming to write about in the first place. So let’s go with it.
For HPN Awareness Week I’m supposed to talk about what I want others to know about life on HPN. And I’m pretty sure I’m supposed to say positive things.
But the truth is that I have HPN burnout. I didn’t really know that’s what I felt until one of the program nurses put a name to it earlier this year. She asked me if I did all of my TPN stuff myself. I said yes. She asked me if I infused seven nights a week. I said yes. She asked me how long I’d been doing it for. I said coming up on four years. She said wow that must be hard. Then she asked me if I felt burnt out.
I paused for a second, and I started thinking about it.
I thought about how every evening I dreaded getting my TPN set up and running. I thought about how I had reduced the hours of my infusion so I could finish and unhook everything earlier even though that meant I couldn’t stay hydrated the following day. I thought about how the whirring of my pump every night made me miss falling asleep in silence. I thought about how being pumped full of fluids all night long meant I hadn’t slept through the night in almost four years. I thought about how I had to rip at my skin every time I took a shower just to keep my line protected. I thought about all the line care. I thought about all the supplies. I thought about…
Yes, I answered. I felt burnt out.
I feel burnt out.
I feel bad for feeling that way because I know I’m lucky to have access to HPN in the first place. But still, I’m burnt out.
HPN is a huge responsibility.
Oh and something you might not realize is that it also takes up a ton of space! An entire extra fridge. Boxes of fluids in the closet. IV pole. An entire extra (very large) dresser in my room full of medical supplies. Overflow supplies wherever I can find space. And so much garbage. I recycle what I can but the waste from the sterile medical packaging is a little ridiculous. I feel guilty every single time someone shares something about reducing plastic and zero waste living.
But back to the responsibility part. HPN is not something you can half-ass. Ever. Because the consequences of that can be really serious. It’s all routine to me now but it still feels like a burden. And I do it all without any help. So it’s a burden that I carry alone.
Which brings me to what I actually came to write about today.
I had a clinic appointment with the TPN team recently. It was on October 1st, which happened to be four years to the day since I started TPN, which isn’t important except that I liked the coincidence.
One thing we discussed at that appointment was central lines. You can’t infuse TPN into anything but a central line. I’ve had five different lines in my chest and my current one I’ve had for just over two years now. Which is a record for me and I’m super pleased about it.
But. Central lines are not invincible. And when you’re using it 14 to 16 hours a day, every single day, wear and tear happens. I’ve had the same line for two years, sure, but it’s also been repaired four times now. Every repair means a trip downtown to get it fixed. Sometimes through the ER. Always unplanned. It’s great that it’s repairable, and it’s great that the issues I’ve had with it have been repairable, but each repair leaves my line a little bit shorter. The next time my line needs a repair it will end up too short to really be functional, and at that point we’ll need to book a procedure to get a new line placed.
So that’s likely going to be sometime in the next year.
As we discussed this, I was asking about different line options. I was looking for the perfect solution that doesn’t exist. Different lines have their pros and cons, and sometimes people get lucky and they last for a really long time. But also when you’re using it as often as I am, needing a new line every few years isn’t uncommon. And isn’t my fault.
“Okay. But every new line placement creates more scar tissue. And if I’m needing a new line every few years then that’s a lot of scar tissue and then we’re not going to be able to keep placing new lines…”
A moment of hesitation. And then the doctor, nurse and dietitian collectively said, “yeah…”
And then we moved on.
Central access, and potentially running out of it one day, is a big ‘yeah…’ in my life. I’ve got some other big yeah…s, too. Quite a few, actually.
But my entire life does not consist just of these yeah…s. I’m not in denial. I know they’re there. I acknowledge them every once in a while. And I deal with them when necessary. When the yeah… becomes a yeah. Or a yeah! Then I deal with it.
And the rest of the time? Well the rest of the time is about those ellipses. The in-betweens. Most of life happens in the in-betweens. All the good stuff happens in the in-betweens. So I’ve got some big, bad yeah…s. Okay. But I’m here for the in-betweens.
Which brings us back full circle to HPN Awareness Week.
I have HPN burnout, yes. But HPN is the reason I get to experience the in-betweens. Where the good stuff happens. Don’t get me wrong, bad stuff happens in the in-betweens, too. A lot of it, honestly. But the in-betweens are an all or nothing thing. And I want the good stuff. So I’ll take it all. Burnout included.
HPN has given me four whole years of in-betweens. I want four more. And four more after that. And then another four. And then some. Bring on the yeah…s if they give me more in-betweens.
I’m here for the in-betweens.
I’m here because of HPN.
And I’m glad.