Yeah…

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.

Anyway.

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.

Waking up

So I haven’t really been around for the last year. On this blog, I mean. But also kind of in the rest of my life? I guess I just haven’t really felt like myself? I couldn’t make heads or tails of anything going on so how was I even going to write about it?

I think maybe I’ll stop ending every thought as a question now?

Okay. So I haven’t really been around for the last year. Because it’s been a mess of a year. The last twelve months have been challenging, to say the least. Life has thrown a lot of punches my way, and after a few punches I just didn’t have it in me to stand my ground anymore and so I let myself get beat up. I’ve been a bruised version of myself. Defeated, I guess.

Medically speaking, it started with a doctor poorly interpreting some test results and completely misleading me, and then it kind of spiraled from there. I was hot potatoed around between doctors, some of who didn’t exactly have great bedside manners, and so even though it wasn’t my idea or decision to be referred to them, I ended up feeling a lot of guilt about wasting their time and resources. Also I didn’t really have a diagnosis anymore. And when no one really knows what’s wrong with you or how to help you, not only do your hopes get crushed each time, but you start to doubt yourself and your experiences. You wonder if maybe everything is your fault. Maybe you’re the one to blame. I did finally end up in the office of the right doctor, except neither of us were our best selves that day and so it was honestly a bit of a traumatic appointment. And while she did have ideas about treatment, miscommunications led to major delays so nothing actually came from that appointment for another seven or eight months.

Medically, it’s been a mess. And that’s not even the half of it.

It’s also been a tough year for me in my personal life. Nothing big or dramatic. Mostly just the normal angst that comes from watching everyone around you moving on with their lives while you’re still sick. Still stuck. And there have just been a lot of big changes for a lot of people close to me, and those changes have left holes in my life. It’s the natural order of things, and I don’t want it any other way for them, it’s just really hard being the one left behind.

Oh. And then. In the middle of all of that other medical mess I ended up essentially on bed rest for about four months due to some pretty life interrupting pain. After a number of tests and invasive procedures I actually ended up in the hospital for about a week. We weren’t able to totally resolve things, but we were able to finally start that majorly delayed treatment. Except then that was its own disaster because of some intense side effects that could have been prevented had there not been more miscommunications and a long weekend.

Just another big mess. Another round of punches thrown my way. Another set of bruises. Another serving of defeat.

But then. Finally. Various new medications and treatments we’ve been trying have started doing what they are supposed to do and I’m starting to feel like myself again. My sick self, but still. Ever so slowly, I’m starting to get my life back. My sick life, but my life nonetheless.

It has been like waking up.

Waking up from a horrible nightmare. A horrible nightmare that I thought I was going to have to become resigned to indefinitely. One of those nightmares where you know you’re dreaming and you’re struggling to wake yourself up but your eyes just won’t open.

It has been like waking up from one of those nightmares.

Waking up is not as simple and straightforward as it sounds, however. Being awake is its own struggle. Because some days, even though I’ve woken up from the nightmare, I’m still living in a bad dream. A lot of days, actually. Some days are even a terrible dream.

But other days it’s a boring dream, and I mean that in a good way. And then some days it’s even a good dream. Or some parts of some days, anyway. And those days, those parts of days, are like a breath of the freshest of fresh air.

Those days are also the trippiest because as soon as I feel not terrible for even part of a day my head does this thing where it jumps ahead about one thousand steps and starts making big plans. For example, I start thinking about how I should probably be looking for a job. When the reality of severe illness inevitably catches up with me one hour…two hour…six hours later, it’s a mix of “wow I’m so silly what was I thinking” and “this isn’t fair.”

This “jumping ahead one thousand steps as soon as I feel okay for even just part of a day” thing is not new. It’s something that I’ve done every once in a while as long as I’ve been sick. It just happens to be happening a lot more often right now because after waking up from that drawn out nightmare my brain and I are kind of fumbling around trying to find our footing in New Normal.

The thing is, though, as disappointing as it is when I come back down to reality from that “wow I feel okay at this exact moment so I think I’m just all better now and let’s start making big plans” place, it’s been so long since I even went to that unrealistic place that just going there feels like a win.

And so I laugh at myself. Because what was I thinking? And I furrow my brow. Because it’s not fair. And I smile, because oh well. And then I continue finding my footing in New Normal because I’m going to stand my ground when the next punch comes along.

So that’s where I’ve been for the last year. The last messy year.

And here’s where I am now. Awake.

I feel sick every day. I’m in constant pain. Nothing about any of this is easy or straightforward.

But.

I’m awake!

 

Thank you, nurses (Nurses Week)

You stopped me in the hospital hallway to see how I was doing. I didn’t remember you from a sedated procedure several days earlier, but I know that procedure couldn’t have happened without you. You were glad to see me up and walking and you wished me well in just the most genuine way. And even though I didn’t remember you then, I still remember you now. Thank you, Carmen.

You were my nurse in post-op. You kept showing up at my side reminding me to breathe. You were soothing and reassuring through severe pain, and you didn’t let them move me until I said I was okay to be moved. Thank you, Mary.

You were my nurse when I returned to the floor after surgery. You were very pregnant, as in when I was re-admitted two weeks later you were home with your new baby. You must have been exhausted, but you stayed past your shift to help me anyway. Thank you, Nicole.

You placed both my PICC lines. If you were at all frustrated when placement took longer than expected, you didn’t show it. Later, you were already out of scrubs and you should have been on your way home when you showed up to adjust my line so that the heart palpitations would stop. Thank you, Marie.

You knew that 23-year-old me was out of place in a ward mostly full of older adults with dementia, and you did your best to make me feel less alone. You were pregnant and I made a hat for your baby-to-be, and then a year and a half later, when I wasn’t even your patient, you made the time to talk with me and show me pictures of your baby boy. Thank you, Nicole.

You saved me from the hallway. You saw what no one else saw, that even though I was young and mobile, I was actually really sick. And later, after I spent days trying to get someone to solve a problem with my line, you took care of the problem within an hour of being on shift. I still think you have magic powers. Thank you, Rose.

You exuded competence and skill and I remember being shocked to learn you were less than a year out of nursing school. It was clear that you were deeply invested in your patients. You were on shift over Thanksgiving weekend and you gave me reason to be thankful. Thank you, Mallory.

You always spent extra time chatting with me. You told me stories that made me laugh, even on otherwise bad days. You most made me feel like just a person, not a patient trapped in the hospital. Thank you, Kristine.

You were quiet but so kind. Your presence always instantly put me at ease. After a stressful situation in the middle of the night with another patient in the room, you knew that I was shaken up and you put your own stress aside to talk me through it. Thank you, Cristina.

You were there for my first tunneled line placement. I wasn’t given sedation and I had no idea what to expect, but you asked me if I was okay every few minutes. And every time you saw my eyes scrunch up in pain you gently held my hand. I never got your name, but thank you all the same.

You were with me for 12 pretty scary hours of my life. I was alone in the ER and sicker than I realized, but you watched me like a hawk. You acted quickly when needed, yet were calm and cool the entire time. You were always one step ahead and I knew without a doubt that I was safe on your watch. Thank you, Ashley.

You did my TPN training. You taught me everything I needed to know to manage my own care and you were the reason I was able to go home. You were encouraging and accommodating and you will always have a special spot in my heart. I hope you’re enjoying retirement. Thank you, Sheila.

You’re my TPN nurse now. You care about fitting my medical routines into my life, rather than revolving my life around my medical routines. You’re the first health care professional who I feel truly understands and validates the challenges of life on TPN. Thank you, Jennifer.

You’re still a student. You’re smart and caring and sincere. You’ve spent hours listening to me talk about my experiences and you don’t even get course credit for it. You’re in this for the right reasons and your future patients are lucky. Thank you, Angela.

I’ve spent months of my life watching nurses at work. I’ve watched you take abuse from patients who don’t acknowledge your skills and training. I’ve watched you care for people who are careless towards you. I’ve watched you watch patients ignore everything you’ve said and then quietly deal with the fallout. I’ve watched you comfort people as you tell them that their loved one has died. I’ve watched you care for patients in ways that go beyond your job description. I’ve watched you struggle due to staffing shortages and budget cuts. I’ve watched you do all of this, while also juggling a seemingly impossible number of other responsibilities, with patience and grace. And dedication. And all too often without recognition.

I could have mentioned many more of you by name, but there are also a lot of you whose names I can’t remember. Just as all of the medical stuff has blurred together over the years, so too have your names and faces. Honestly, though, just the fact that you are able to do everything you do without me remembering you for the wrong reason is a feat of heroism. And name or no name, I know that you were there, and I know that you gave of yourself to help me and others like me during our most vulnerable moments, and that’s amazing.

And I am grateful.

Thank you, nurses.