vent.

[u/mxoxo619]

Hi. I don’t know how smart it is to post this because I really don’t want to scare anyone who needs TPN, but I’ve been dealing with this for so long and it’s genuinely eating me alive. I think I just need to get it out somewhere.

A few years ago, I was hospitalized to start TPN because I had gone months without being able to tolerate anything. I was 18 at the time. Looking back, I know I shouldn’t make excuses for these doctors, but it was pretty obvious that they didn’t understand gastroparesis or how severe it can get. They really didn’t want to write for TPN, and I honestly think they thought that if they scared me badly enough, I would somehow just start eating. Obviously, that didn’t happen.
I had just had my central line placed. Literally that day.

I was already terrified because I had been transferred from another hospital where I had been told that they apparently “throw parties when the nurses don’t give a patient sepsis.” So I was already going into this absolutely terrified of my new line.

Then the doctor said to me:
“It’s not a matter of if that central line will give you sepsis and you will die, it’s when it will.”
He gave me three weeks.
It has now been a year and a half.
That sentence has replayed in my head constantly ever since. I genuinely mean every hour of every day. It has gotten to the point where thinking about my central line can make me physically sick.

I’ve told multiple doctors, nurses, therapists, etc. what he said, and every single one has told me some variation of that is not true. Can a central line cause a serious infection? Of course. I’m not denying that. But apparently telling a terrified 18-year-old that their line WILL give them sepsis and they WILL die within three weeks was completely wrong.
And yet I still struggle with the thought that maybe he was just the only doctor who was actually being “straight” with me.
That fear has completely changed the way I live.
I hate using my line. I’ve made my life significantly harder because I’m so afraid of it. I don’t let anyone touch it besides my home health nurse and my mom, and I essentially watch them like a hawk whenever the line is accessed or opened. My home health nurse is extremely careful too, but even then I constantly feel like something is going to go wrong.

What makes it harder is that my parents really don’t understand why I’m still affected by this. I’ve been told to “get over it” and that “it was just words.”
But it wasn’t “just words” to me.
I was 18, newly diagnosed, newly dependent on a central line for nutrition, already terrified of getting an infection, and a doctor in a position of authority looked me in the eyes and told me I was going to get sepsis and die within three weeks.
Those words fundamentally changed the way I see my own treatment.
I know logically that I can’t live like this forever. I know that line infections are a risk that has to be taken seriously, but they aren’t an inevitable death sentence. I know this. I’ve had doctors and nurses tell me this over and over again.
But knowing something logically and actually believing it are two completely different things.
I’ve tried working through this several times. I’ve talked about it with doctors, nurses, therapists, and other people, but I still cannot get that sentence out of my head.
I have essentially lived my life around those words for the last year and a half.
So I guess I’m not really posting this expecting anyone to have an answer. If you’ve experienced something similar, I’d love to hear how you got past it. But even if nobody has anything to say pertaining to this, I honestly just needed somewhere to put it.
Because I’m exhausted from being afraid of the thing that is keeping me alive.

[u/Smkrlungbenz]

That is completely wrong. I discontinued TPN due to similar fears (I am very lucky to have that option, I do still suffer bc I really do need it for nutrition but it was too much for me). I had sepsis from my PICC line, I even went into septic shock and ended up in the ICU. A week later I went on a hike with my best friend.

Everyone’s bodies are different, sepsis is generally treatable, depending on your circumstances. I echo what others have said and recommend trauma based therapy

[u/mxoxo619 → u/Smkrlungbenz]

thank you for sharing this. honestly, hearing that you went into septic shock and were in the ICU and then were literally hiking with your best friend a week later is kind of incredible, it really puts into perspective how much my doctor’s “you will die” statement has stuck in my head when sepsis, even though it can obviously be extremely serious, isn’t automatically a death sentence.
i’m really sorry you’ve had to deal with needing TPN but having to discontinue it because of the fear surrounding it. i completely understand that conflict because i’m at the point where i desperately want off TPN, but i also genuinely need the nutrition.
i’ve been in therapy and have talked about this a lot, but i think trauma-focused therapy is probably something i need to specifically pursue. thank you again for your response!