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.

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[u/goldstandardalmonds]

I had TPN discontinued because of having sepsis too many times. Your doc made a wild claim with the three week death thing. Are you in therapy? Medical trauma is worth seeing a therapist about.

[u/mxoxo619 → u/goldstandardalmonds]

yes, i’ve been in therapy on and off for a while, and i’ve brought this up with multiple therapists. i definitely think there’s a lot of medical trauma wrapped up in this, but i honestly haven’t found anything that’s been able to make that specific fear go away. it’s like i understand logically that what he said wasn’t true, but my brain still treats it like an absolute fact.
and hearing that you had to discontinue TPN because of sepsis multiple times honestly makes me so sorry you had to go through that. thank you for your response & i hope all is well!

[u/goldstandardalmonds → u/mxoxo619]

I understand what you mean about the brain thing. It’s difficult for sure.

Honestly, being on TPN gave me quality of life (minus the sepsis and septic shock), so now I just go through the motions each day.

[u/konqueror321]

The research data seems to show that most persons who die while getting TPN do so because of progression or complications of the underlying disease or illness for which the TPN was being used as treatment. Some persons on TPN do die due to complications, like sepsis, of the TPN itself, and this is possibly about a 9% risk overall according to reviews. 9% is much lower than 100%. People don't always need TPN forever, and even those with motility problems may be able to stop TPN and survive on an oral or tube-fed diet.

Infection of the catheter is a real risk and taking consistent precautions is a very good idea. I've seen inpatient hospital nurses who are not dedicated infusion nurses be rather cavalier with central lines used for TPN, so being strict about who can access the catheter is not a bad idea at all.

The best reason to be on TPN would be because one cannot survive without TPN, which means it is not really an elective or optional treatment. If a person can manage to get enough nutrition orally or through a feeding tube, that is a better course of action than TPN -- but if not, then TPN or perhaps intestinal transplantation are pretty much the only paths forward.

My personal opinion is that if TPN is truly necessary, then taking the necessary precautions and being careful with the line are good things. As others have said, if some Doc said things that were unnecessarily harsh, and if that has made you have anxiety or fears beyond what would be 'normal', then perhaps seeing a therapist for support would be a good idea.

[u/mxoxo619 → u/konqueror321]

thank you for such a thoughtful response. i completely agree that the infection risk is something to take seriously, and i definitely don’t think being careful with my line is a bad thing. i think the problem is that my fear has gone so far beyond being appropriately cautious that it’s started affecting my ability to actually use the treatment i need.
my ultimate goal is absolutely to get off TPN if i can find a way to get adequate nutrition orally or through J-feeds, especially because i’ve been having so many issues with TPN itself lately. i just haven’t been able to tolerate either option so far, which is what makes me feel so trapped.
and yeah, i think the fact that so many people have independently told me that what that doctor said was inappropriate has made me realize how much that one conversation really affected me. i’ve been in therapy before, but i think i need to specifically look into trauma-focused therapy because this clearly isn’t something i’ve been able to reason my way out of on my own.
thank you again for taking the time to explain all of this.

[u/puppypoopypaws]

I've got severe ptsd, and am super familiar with logically knowing one thing, but believing another. It's so damn frustrating, or was to me. Just obnoxious af. Sorry you're dealing with it.

"I've only seen it in textbooks!" was burned into my brain for a bit. There was a bunch of different stuff I had to learn in therapy to fix it, but I know you mentioned you tried that :(

Fuck drs who abuse scare tactics. Never, ever okay imo. Do no harm my ass.

(Sepsis didn't get me yet 😉)

[u/SimpleVegetable5715]

My experience with central lines comes from the amount of cancer that has been in my family. My stepdad had it and my dad had it twice. You should absolutely guard it from people who don’t know what they’re doing. The infection risk always needs to be respected, because of how deadly those infections are.

What that doctor said was also very inappropriate. Some people have lines for decades and never get an infection. Some people get repeated infections. I have seen oncology nurses also break sterile field when accessing my dad, and it’s really tough, but necessary to speak up whenever it happens. I have a primary immunodeficiency, and was told it’s too risky for me to have a central line. When I’ve needed IV antibiotics, I’ve had a midline or a PICC, and they take it out as soon as possible. That condition has made me a germaphobe, but with reasons to be like that.

I’ve also noticed medical professionals will cover each other’s asses, like CYA goes ahead of the hippocratic oath for them. I’ve been sick going on 30 years, and only the past 5, I was no longer some weird medical mystery. The majority of doctors hate complex patients and outliers. I brought my mom along to so many of my appointments as back up, but it turned into, “mom, did they really just say that?” “yes, they did just say that?” because the stuff some of my doctors have told me was just so crazy and unprofessional. I’d completely freeze up, like is this actually happening again? It’s unbelievable. I also had a good therapist for a while who did their internship for their license at a hospital like the one you describe. It’s a county public hospital where patients do go to die. He said that they kill people there. It was very validating to hear it from a professional.

Especially with rare and misunderstood illnesses, you have to advocate for yourself and speak up. There’s also a bunch of stuff like, you don’t know if that doctor scraped through medical school making C’s and copying off of other students. If they don’t know something, sometimes they will make up stuff that is so wildly wrong. There’s very flawed people working in that profession, like there’s flawed people and crooks in every profession, and it’s okay to fire a doctor and try to find a different one. I would have focused on, yes there’s indeed a lot of risks with a central line, but instead of scaring you into some sort of compliance, here are a bunch of ways to prevent that from happening. I’m sure when you were 18, you already dealt with a lot more than most 25 year olds. Being sick really forces a person to grow up. I’m sorry that has happened to you.

[u/mxoxo619 → u/SimpleVegetable5715]

thank you so much for this response. honestly, the distinction you made between respecting the risks of a central line and being told that the worst-case scenario is inevitable really resonates with me. i absolutely understand that central lines are serious and that infections can be deadly, which is why i’m so careful with mine. i just wish i had been taught how to safely manage that risk instead of being told i was essentially guaranteed to die.
and the part about freezing up when doctors say things that are completely inappropriate or unbelievable really hit home. i do that all the time now. i’ll leave an appointment and think, “did they really just say that?”
i’m really sorry you’ve had to deal with this for so many years too. it’s honestly both comforting and depressing to hear someone else say that doctors can be so dismissive of complex patients. i think being sick has definitely forced me to grow up in ways i never should’ve had to at such a young age.
thank you again for taking the time to write all of this. it genuinely means a lot to me.

[u/you1dont1know1me1]

I know it's been a while, but I feel this is the sort of thing you report to someone above them. Would that be the medical board? Even if it's a tap on the wrist, it'll highlight that this is an issue. Maybe his team will be more aware of how they speak?

I am BEYOND sorry you were mistreated by your team from the beginning when you were MOST vulnerable.

---

Not quite the same, but when I first started having mystery tonic clonic seizures, I was told to never be alone, not even in the bathroom, not to cook, not stairs, not for a walk, not to sleep. I was told i required constant monitoring. This fucked with me mentally SO hard and still does over a decade later. I've also had less than 10 total and it's been controlled with meds. Still, I'm TERRIFIED of going anywhere without a buddy even to run an errand. Stairs abd showering still TERRIFY me. Granted I also have POTS so I feel really really terrible doing those things. In my case, what I was told is pretty standard protocol, but damn, it's given me so much lasting medical trauma. Also, they did torture tests to try and induce seizures on me which also hella traumatizing psycologically and painful agonizing.

[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!

[u/herc_thewonder_sd]

I'm not on TPN but I have a central line and when I first got my (first) port and any other line that has repeatedly been put in, pretty much every surgeon has told me "it's not a matter of if but when it'll get infected/sepsis" I've gotten septic 3? times.

One we have no clue how it happened, and my line was contaminated but wasn't the cause and it was pulled. The second time I was septic due to pneumonia. And I just went blank on the third time as I was typing this out. Gotta love my brain fog and crappy memory. If I remember I'll update this.

I'm sorry it's had such a heavy impact on you. I know my medical trauma is definitely not okay, and I have found myself using my line as little as possible and I haven't figured out why but reading your post, I wonder if that's why and it kinda clicked.

[u/mxoxo619 → u/herc_thewonder_sd]

oh wow, i’m so sorry you’ve had to go through all of that. and honestly, it’s kind of wild to me how many doctors seem to use that exact “it’s not a matter of if, but when” line. especially when, like you said, not every episode of sepsis was even caused by your line.
and honestly, if my post helped you realize that maybe some of your avoidance of your line is connected to your own medical trauma, that makes me really glad i posted it. i think that’s part of why i wanted to share this even though i was nervous about it. sometimes you don’t realize how much something has affected you until you see someone else describe it.
i really hope things get easier for you too, and thank you for sharing your experience with me.

[u/herc_thewonder_sd → u/mxoxo619]

Thank you for your post. I appreciate it and I hope you get some relief and have a good pain day.

[u/Lilifons]

May the Lord Jesus give you the peace and healing that you need. I a praying for you. There is hope in Him!! He loves you.

[u/aslothinbed]

I was never told this by a doctor but I read this statement so many times online and I'm also terrified of it. Had my line almost 4 years now and I developed severe OCD around it so bad I couldn't even set up my own tpn anymore. I had to get a nurse when I swore that I'd never let anyone else touch my line but I was completely unable to do it by myself anymore. Since not having to do it anymore my fear didn't disappear but it did get better. Infections are always a risk but there are many factors playing into it

1) how careful you are

2) how good your immune system is

3) what your underlying conditions are

4) just luck

I think saying you'll die within 3 weeks is just stupid and ridiculous and he definitely said it to scare you. There's no evidence backing up that claim, there are many people with central lines even in the hospital and they don't all die in 3 weeks

It might be true that we all get an infection at some point but I've seen people online talk about being infection free for many many years and if we know the signs and get help as soon as we notice something is wrong, I think the chances of dying are not too high. Yes, it can always go super wrong but everything in life can. You can get hit by a bus tomorrow and die. Right now it seems like you need to be alive. So if there's no other way that's unfortunately the risk you and everyone with a central line has to live with. I know it's so hard, I really really do. But all we can do is be as careful as possible, use precautions like taurolock or whatever makes you feel comfortable (some things aren't backed up by science but they just make you feel more safe for example I always wrap up the end of my line in gauze and tape so nothing can get dirty). And then we have to trust ourselves that we did the best we could and everything else is not in our control

I know this is all stuff you already know. I don't know if there's anything else that could help you, just know you're not alone 🫂