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.
4 thoughts on “Yeah…”
Catherine; at this time it is good for us to hear about the negatives. I never doubted that they were there, but when you focus on the good times it helps us all remember to do the same. I have plenty of health issues and will probably end up having open heart surgery in the next year, but I cannot complain when I think of what you (and others like you) must go through every day and you still manage to send out such positive messages. I am glad that you have the energy and inclination to keep sending us your thoughts and I pray that you can continue to do that for years to come. I also hope and pray that your situation improves over time to make your life easier.
Barry – I’m so sorry to hear about your health struggles. I am going to say to you what I say all the time: it doesn’t matter what anyone else is going through, what you’re going through is still real and big and valid. You are absolutely allowed to complain. I would 110% be complaining if I was facing possible open heart surgery. That’s a big thing! I wish you all the very best with that, and I sure hope you complain about it haha
I’m glad you’re here too! I’m also glad you could highlight the hard realities of day-in, day-out, management of chronic illness and medical treatments. Because that’s the way it is. So tell it how it is. How else will people understand?
It concerns me that you are the only one in your life who knows how to manage your HPN. Most parents (another 24/7 responsibility) get a break with a baby sitter from time to time. I am wishing that you could have someone who could give you some respite- even if you still need to have your fluids every day, would it ease the burden a little if you had someone who could come along and take care of the physical handling of it all from time to time; even if it were once a week; e.g., to come along and fetch the fluid bags, set them up, unwrap the IV lines etc. help to set you up and then tidy up all the packaging and rubbish afterwards, check/order supplies etc. and leaving you to “not have to think about it” just for that session, would that be a useful thing?
There’s a lot of chatter around the place about preventative health, particularly taking care of oneself to prevent mental health problems. Why can’t the TPN people have a system where they can offer some home respite service to stave off the TPN Burnout a bit longer? Just a thought – I can’t help it – always trying to problem solve. Please excuse me if all you need was my reading eyes and listening ears.
On a more positive note, I am so pleased that you have had a relatively good run with your current line and my wish for you is that you get more than 4 lots of 4 years and during that time, they discover something new and you find that elusive miracle.
Many hugs and sending love your way because it’s a tough life and your fortitude is second to none.
“Even nerves of steel are subject to metal fatigue.”
Hi Jodie – I appreciate your care and concern. It’s always easier to problem solve in theory than in practice, isn’t it? For now, I’ve been taking one night off every few weeks and that does help 🙂