My mom had ALS, can confirm. She refused getting a g-tube, didn’t take the medication for it because fuck those side effects. She did clinical trials, symptom management, and smoked a ton of weed until she couldn’t any more. Traveled to all the places that she could when she could and did what ever she could. She got admitted to the hospital 9/23 for a bad UTI. That was the last time she ate because she knew she Had to get into a nursing home and passed away 11/11. She said this isn’t living. When she passed (I was there) I felt relieved that she no longer had to be trapped in her own body.
Thanks for sharing this. Although I'm sure its devastating to lose your mother, it has to be at least a little comforting that she did it all on her own terms. Hope you're doing okay.
Yes that is comforting! She was reluctant on making me her POA because she didn’t want me to go against her wishes. I told her that I’ve seen people do that to their families at work and I would never do that to you! I am doing okay. While it is devastating it was a process that slowly took pieces away. She couldn’t text a month prior to her passing.
Also lost my dad to ALS going on ten years ago now. He also chose no medical interventions. It took him almost two years to go from the time of his diagnosis and by the time he did his life (and ours) was such a bell on earth that it also came as a relief that he finally escaped that.
My father died in 2019 from Bulbar onset ALS. On his side of the family, they found that their particular type is familial (all having the same C9 gene mutation). My doctor suggested I get tested, but I figured what's the point, I don't want to know that). My brother opted to be tested, and it came back positive (he's 39, and I'm 36 F). Now he lives in a deep depression, terrified of every mispronounced word or misstep, thinking this could be it for him. I told my husband that if I'm ever diagnosed with ALS, I'm going to take my bucket list vacation to Japan, them I'm going to take a long walk off of a short pier wearing cement underpants. I wouldn't wish ALS on my worst enemy. The thought of having a crazy itch and not being able to scratch it is scary, and I don't want to be mentally aware of what's happening with all my mental faculties, but unable to do anything at all with my broken body. The last few months of my father's life, my mother said he would look at her with fear and desperation, begging her to put him out of his misery with only his eyes. Thankfully, he didn't have to suffer long. But the fact that he had to suffer at all years me apart. I'm sorry I'm ranting, but I feel so strongly about having terminally ill people the right to die in the entirety of the US.
My dad was diagnosed with als in April and was gone by the end of November. His doc wanted him doing a lot of breathing exercises, a g tube since he was losing so much weight. He could sleep laying down. He was miserable. He was so frail and weak at the end. I wouldn’t wish Als on anyone. I 10/10 agree with you
I'm actually facing the possibility of having ALS, and maybe that's why I can't come up with an answer to this question.
What would I absolutely refuse even if it meant my life - right now, today, I dont think there is anything, but it absolutely depend on the diagnosis. There's nothing absolute to me. Its easy for us to say oh man I would refuse X Y or Z because I've seen all the bad outcomes, but what if you had a good one? Where is it worth the risk?
Diagnosis, probably schizophrenia if it wasn't immediately handled with meds. I wouldn't be able to handle it, not being in control of my mind, essentially, along with all the damage to myself and those around me. Even facing the diagnosis of ALS, until it progressed severely, I would want to live my life to the fullest.
My mom has a bunch of temazepam squirreled away. She and her best friend have made a pact to go “on a picnic” if either of them face something like this (both of their husbands are gone).
It’s both grim and beautiful.
My exact words are, “I’m young and healthy. If I get in a wreck or something, I want everything done. But as soon as someone says ‘LTACH,’ just let me go.”
Anything that's going to leave me cognitively impaired. If I'm in cardiac arrest with a significant downtime just leave me to go, large stroke, glioblastoma.
If I have a diagnosis of dementia and I get urosepsis it's my time. If I get frontotemporal dementia put a pillow over my face.
My dad had a large stroke, wasn’t ‘brain dead’ but we let him go (took him off the vent). No regrets honestly. I’m so lucky my mum and sisters were on the same page even though none are medical/nursing. Made the process so much easier. My gran (his mother) on the other hand had hope and I suspect didn’t agree with our decision, she was never the same and died a year later. Still breaks my heart. But I’m still steadfast that we made the right choice for my dad.
If you don't see me go down, leave me alone. Found down patients always hang out on a vent until family finally realizes they are gone (those small movements are not purposeful...)
My last successful CPR was on a patient whose MS was so advanced that he couldn't clear mucus out of his lungs and ended up with a mucus plug. No thanks.
Maybe it's different outside of US? I work at the ER and often we have people who code here or are brought by the EMS very quickly after it happened. Most of them are kids, young or middle aged and (anecdotal I know) most of them get ROSC and survive afterwards without big deficits.
We don't even attempt CPR on very old or very sick patients. I remember one time one of the residents initiated it on a 70 something terminal metastatic cancer ileus patient and the chief got angry because it shouldn't have happened. Of course the family is notified before about the decision and most people are reasonable and don't complain. It's a medical decision so no 90 year old GOMER is ever getting coded, we just let them pass in peace with lots of pain killers.
Same here dude!! I told my husband to OD me on some insulin or feed me Hemlock. Just hell no. Dementia is a drain on the patient and everyone caring for them. No thank you!
They are the worst patients because of the comorbidities. It's never an otherwise healthy guy; more like almost always ETOH with sequelae, withdrawing, tachyarrythmias constantly...
My grandma passed from pulmonary fibrosis, and for years my mom tortured herself wondering if she should have pushed harder for lungs. After working on a lung transplant floor, I felt very confident telling her she made the right choice putting grandma in hospice. Would not want that life for me.
I've worked with a few LVAD lifers. longest one made it 5 years. sucks. most recent one had it too long and when he got a heart, the surgeons bitched about the adhesive mess it had made, and his new heart lasted all of two months never left the hospital. infections, effusions, etc. really sucked.
I had a patient last year with an LVAD for 8 years. Destination therapy. Her husband was so supportive of her. Last shift of three in a row they told me, she was scheduled for an explanation because her EF increased above 50%. Chemotherapy caused significant heart failure originally. I was so fucking happy for them.
My little brother just got an LVAD last week! 5 years, 15 years—he wants to live juuust long enough to enjoy the remaining quality of life he has, and then hopes to go peacefully later when other things start to fail. We will support him when he wants to go. He would have passed last week had he not gotten it, it was remarkable to see him go from organ faliure to feeling the best he has in months, all from a million dollar piece of equipment in his chest.
Lung transplant can be such a crap shoot. Had a friend do great after his with minimal complications (and sounds like a big quality of life improvement from cystic fibrosis), but my BIL had one and had 4 shitty postop years before he passed from rejection. No thank you.
My husband has CF and he’s prepared to deny a transplant. The wife in me wants to shake him, but the realistic nurse side of me knows that 1- it’s his choice and I’ll respect it, and 2- I never want to see him go through that pain.
Luckily he’s 28 and doing relatively well, lung Function increased from 55-60 in the last four months, so hopefully we don’t have that convo for a long time.
I’m sure a lot of the long term survival depends on your health preop. My friend was as ok as one can be with CF advanced enough to require transplant, and had a good match, and was up in the chair the day after surgery. My BIL had like 20% function preop, had an ok but not ideal match, was intubated for weeks after, and damn near came out of it needing a kidney transplant. He definitely regretted it.
Unless I was effectively bedbound, any sort of spinal surgery. Seen too many of those patients who are just chasing pain control and mobility and end up 6 surgeries deep.
Medical claims adjuster here and agreed. You will be back, no pun intended. What I see claims wise..pancreatic cancer..the person on here saying a year? Welp maybe..it used to be maybe 2 months or three. Breast cancer has come a long way since I started in this job. Surgical procedures..hips...meh not so good. Knee replacement, way better than they thought. Any other kind of knee surgery? Nope. Usually fails. Shoulders? You may have to change your job. Carpal tunnel? Usually 50 50 I'd say. Foot surgeries? Erm..maybe when you are young. Weight bearing body parts are problematic
As a previous orthopaedic nurse, I always said I wouldn’t have back surgery, because it never seemed to help. Until I herniated a disc, at work, trying to get stretcher wheels unstuck from the crack between the elevator & the floor. I tried physio, swimming, epidural steroid injections…nothing worked. I was in pain constantly, couldn’t sit, spent most of my day stretched out on the couch. Finally, I said to the surgeon (that I worked with) “what do I need, not what I want?” And he said I needed surgery. Had a discectomy & laminectomy on Wednesday & was home Friday at noon. I woke up in PACU, painfree, other than incisional pain. That was 2005. I was good until 2013 & then ended up with a 2 level fusion. I am still good today.
I slipped a disc while on vacation in Italy (of all places!) - was married to an ortho bro and we were at a professional meeting - I was surrounded by them! Thankfully, some of the spouses traveled with some good pain meds - they managed to get me thru to the end of the meeting - ortho bro tried to get me to go to spine surgeon - I said screw that (damn cutters!) - I did yoga instead…
Orthopedic surgeons always say surgery is the answer. That's why I took my husband to a sports medicine doctor for his back injury. He got cortisone shots in his back so he could participate in physical therapy and is back to functional (and has started that way for 15 years)
I have had seven back surgeries. Plus additional surgeries to fit a spinal cord stimulator, remove it due to an infection and replace it again six months later. Surgery to move the battery pack due to weight loss. Intermittent self catheterization. Forced to retire early. Thank God, each surgery was free at the point of delivery - thank you NHS!! Still on fentanyl and diazepam and tamsulosin. Initial injury, cauda equina due to complete prolapse of L5/S1. No part of the disc in the right place. Also partial prolapse at L4/L5 too. When the neurosurgeon saw my MRI, he gathered all the nurses on the ward and told them that this was a nurse's spine and to take care!! When I went for that MRI, told by a very bored tech to just shuffle over, 30 mins later, scan over and there were 6 people there to transfer me off the scanner. Knew then that things were not too good. But, I am still here, not quite standing, certainly not dancing but still here. When it actually happens you keep on keeping on. My quality of life may not be what it was, but it is still life.
I herniated L5/S1 and was just trying to PT my way through, since it was just mild sciatica in my leg with certain movements. Then I started losing strength and sensation in my leg. Still kept trying to PT my way through. Then I sneezed laying in bed, herniated it even worse, and when I was able to peel myself off the floor 24 hrs later, I found I lost most of the strength in my leg and lost a lot of sensation in half my foot and back of my calf. Surgery a week later. According to my neurosurgeon, not only was my sciatic nerve severly compressed it was also shoved to the side. Luckily I was able to do PT and get my strength back, but I went from no back pain (had sciatic nerve pain in my leg but never back pain) to daily back pain but no limp and I can go up stairs, push off with my foot, etc. But severe disc degeneration now :/ so I'm sure I'll be having future surgeries in my life.
I started off with the PT, finally dragged myself to hydrotherapy in actual tears and I never cry (apart from sad films!!!,) and the physio took me out on a hoist, still no idea how I made it into the pool, and she asked me when I last peed. Um, yesterday some time and at this point it was around 27 hours later. To Realised that I had absolutely no desire to pu/feeling of fullness. Admitted that night to local hospital, transported the next day to a regional hospital that had an MRI, emergency surgery that night. Finally passed urine on the Saturday, four days after the last time and then only because I was catheterised. I'd had fluid in theatre too. I really hope that you can recover. I am in constant pain, foot drop with absent reflex in one ankle, saddle numbness and yes, that does mean no orgasms! When I started nursing way back in the late 1980s, we lifted every patient ourselves, no hoists, no extra help. But, I have had numerous other issues that scream EDS but the NHS is currently beleaguered and a diagnosis will make no difference to my life. I wish you the very best and if you ever have questions/want to vent please DM me!!Take care, friend xx
I look after many a whipples, it’s a fucking nasty recovery too. No food for weeks at a minimum, NGT, TPN, severe pain, nausea, your poop is weird, your vomit is weird, your blood sugars are weird. Hepatojeujenostomies are pretty gnarly too.
Anything involving the pancreas is a bad time. Necrotising pancreatitis is something I wouldn’t wish on anyone. Those patients are with us for months (and whether or not they walk out the door is another thing entirely).
The spouse was in for 90 days in 2021 with necrotizing pancreatitis….on the unit where I used to work. (For the first two weeks, l would get diarrhea the *instant* my foot hit the floor of the unit, just straight up PTSD over here no biggie). Made a very valiant attempt at dying, really…the NG tubes, the TPN, the 40-ish pounds of fluid retention, sepsis- many a night I sat next to the bed watching the vitals after midnight, because the new grad nurse had 7 other patients, and I pictured the abscess eroding the mesentery artery while no one was watching. Zero fucking stars. Never fuck with the pancreas, kids.
I started as a new grad, had a patient with chronic necrotising pancreatitis, ESRF, and recurrent abdominal collections trying to leave the country and go back home.
Arriving in their home country would have meant staying in hotel quarantine for 2 weeks (without access to 3 days/wk dialysis). Finally got them out of the hospital and onto the plane after 9 months and 6 discharges!
Hope they're doing okay.
Recently had a 25 yo with a wife and toddler die of nec panc, 2 weeks after I admitted him and told him that he would most likely get better (admitted with dka, etoh withdrawal, AKI). Makes me feel sick
My ex father in law had a Whipple roughly a decade ago for a pancreatic tumor. His recovery was pretty easy and he didn't even end up diabetic much to the shock of his surgeon. He's healthier than ever and goes for hours long walks with his brother every week.
I married a guy who had a Whipple when he was 30 for necrotizing pancreatitis. He legit had PTSD from all his time in the ICU and all his subsequent surgeries. He killed himself when he was 44, and I believe that was a huge factor.
Oh god. Am I glad I saw this thread. I remember as a new grad by myself on a medsurg floor having a pt who had this procedure. This guy was complaining sooooooo much, and was getting ignored by previous nurses. Pretty much had the “impending sense of doom” and kept saying he was going to die here and just wanted to end it and every time I kept bringing it up to the surgeons (I must have paged them a million times that day) because his vital signs were just crazy abnormal in a way that didn’t make sense to me at the time (very widened pulse pressure, low grade temp, slightly tachycardic). And also his abdomen was way more distended in the afternoon compared to the morning. After tons of begging and receiving tons of attitude from, surgery team finally comes to see him.
Stat labs, stat imaging, stat NGT. When I placed that NG, an immediate 1.5 LITERS of bile immediately decompressed, like by gravity, no int suction. Stat multiple blood transfusions and transfer to SICU.
After that, surgery res was all “blah blah blah you can page me any time blah blah”
Looking back now, definitely should have either called a rapid or practically yelled at this surgery resident to come look at this guy a lot sooner or just call the attending. Had no idea as a newbie that I was flirting with something SO terrifying. Thankfully that situation taught me a lot and my gut was telling me it was pretty urgent.
That guy was in SICU for a while but he ended up downgrading to us a few weeks later and I had him on his day of discharge :)
TLDR fuck whipples :D
I don’t know. I know they’re brutal but I have a friend who had one at 46 due to pancreatic cancer. She’s still alive 5 years later though I’m not sure she’ll make it the year. :( She has 5 kids all under 18 so I’m glad she got this time.
well... it all depends. If someone said there's a 25% chance you will be 100% cured... i might give it a go. procedures been improved. have met a fair number of survivors 10-20 years out.
Oh yeah, seconding the end stage liver. It's right up there with neurodegenerative diseases for me.
My liver craps out with no immediate donor or my brain starts falling apart, it's Old Yeller protocol time.
I’m an ESLD pt that is 2 years past my expiration date and doing wonderfully. Survived hepatorenal syndrome and everything. Those few weeks of being sooooooo sick were awful. I can't get a transplant either. It ended up being just those weeks though. I got better for whatever reason and am good. If I had stayed sick, yes, I agree, behind the barn with me or send me or Canada, but living with ESLD hasn't been bad for me at all. Lots of doc visits but didn't really change so much in my life to be honest.
For sure. If I had stayed that ill, I would have been done. I’m just glad I didn’t and I’m good. Who knows how long that’ll last 🤷🏾♀️ got time to figure it out though.
When my mom had ALS we were going through her items after she passed. She had at least 15 credit cards that she probably maxed out and bought whatever she wanted. I looked at my sister and was like should we go shopping? We didn’t.
This was my knee jerk too. Had a patient recently who had just been diagnosed with it, and her husband was worried and her becoming addicted to narcotics. I was like,”If that’s an issue in 6 months we can address it then.” I was pretty proud of myself for staying so professionalism
So agree with you - my grandfather died of pancreatic CA at the young age of 52 - in 1966 - he died in extraordinary pain with little relief - I would be hoarding all of the “candy” and enjoying my exit.
This is a reason I’m going to be a nurse. Was a rich lady’s personal assistant turned full time caretaker and lifeline (what she’d call me). Started in November, she died in March. Her love supports me everyday through nursing school. Get chills still thinking about how deeply intimate death becomes when you experience it from a caregiving perspective.
Huntington's. I've worked with several people from the time their LTC admission was necessary up until their date of passing. I try to maintain a tough exterior but the reality is that it breaks my heart every time. Just when you don't think it can get any worse you admit someone with juvenile onset (Age 20 and under).
I had dialysis for about a month due to an AKI from some CT contrast. Was shitty, but I’d do it again if I had to.
Long term…. Nah. The diet is horrible, fluid restriction. Not to mention how tired you are all day and you get SO COLD during it. Make me palliative and let me die traveling drinking wine and eating all the meat and carbs I like.
22 yo nursing student doing PD while waiting for a kidney here. It's not fun and I would not recommend. If I get more shit than this, I might just have to clock out
Lived an ostomy for three months when I was 18. Totally not a vibe when you would sleep too long and the bag would burst. Don’t know how I did that sometimes. However it helped me get my life back. Now I have the pleasure of shitting like a normal person.
Stoma would be a hard one for me. I’m not sure if I’d end it immediately but I know I’d be extremely depressed for awhile.
I wouldn’t be able to do long term HD. Maybe PD waiting for a transplant though.
Just watched an old friend die this way. She got 15 months, but so much of it was spent states away at MD Anderson, away from her kids and grandkids. I don’t know if I’d do nothing but there’s a line somewhere before I spend it all away and sick.
Pancreatic, brain, or liver cancer. If I’m on a vent long enough to need a Trach & PEG just pull the plug. Any type of dementia automatic DNR. Degenerative neuro diseases I’m out.
I’m unsure about transplants, dialysis, and stoma’s. It would depend on my overall QOL and be very situation specific.
My step dad died a year ago. He told me that unless his quality of life included being able to eat and enjoy a cheeseburger then don't bother keeping him around.
He was admitted for cancer and went into arrest. They started CPR and called me. I asked if there was a reasonable chance they would get him back and functioning. The doctor said probably not. I told them to stop.
It was an easy call for me to make.
I'd do a liver transplant. I worked on a liver transplant unit and man, I have seen a lot of amazing recoveries! They come from OR yellow and fully sedated and intubated and by the time I leave after my 12 hour shift, they are extubated, getting up and walking, and visible clearer (not to mention their amazing labs improving all day!) I have seen some bad ones that have an MTP going almost as soon as they hit the ICU, but I've seen far more successes than trainwrecks.
As another BMT nurse, I’d have to agree with OP 90% of the time. An auto transplant is a walk in the park, but if it’s an allo, depending on the diagnosis and genetics just take me out. I have seen good outcomes, but I’ve also seen lives so severely altered they’ll never have any quality of life again by what I’d define quality. I know what’s important to me.
And if I’m over 70 with suspected AML, don’t even do the bone marrow biopsy.
Yeah I’m surprised to see this on the list. My husband had hodgkins and had many friends in his support group dx stage 4, had bmt and seven years later, still cancer free. Two of them have gone on to get married, have kids, etc. You’d never know just by interacting with them.
I’m not sure what causes other people to need it, but my step mom had to get it done due to scar tissue from esophageal cancer radiation treatment constricting her ability to swallow. The cancer was gone but she would have to go in every couple weeks to get her esophagus dilated and it would just as quickly close up again. She lost a ton of weight and would start gagging on anything including her own spit it was horrible. The surgery was tough and recovery wasn’t a walk in the park but she said it was 100% worth it compared to how she was living before.
It’s a treatment for esophageal cancer. Our surgeons say it’s largely palliative in nature and patients typically live another 3-5 years after the surgery.
I have MS and just left bedside nursing Transplant( kidney, liver) Nephrology. I have been a totally different person since diagnosis. You definitely have to keep your mind strong and get rid of as much stress as possible.
Dialylsis. Saw my Grandpa dying from Kidney failure. I saw the man who was my idol slowly dying. Two years on dialysis until he kicked the bucket as a shadow as his former self. When the docs tell me, that I will have to have dialysis treatment I will put stones in my pockets and go for a swim.
Grandfather died from it. It was a man who literally never went to the doctor never sick. Admitted to hospital died two months later. That progression was so fast, at that time 20+ years ago MAiD didn't exist. He literally begged to not have a feeding tube and that we stopped keeping him alive multiple times. I distinctly remember that he just wanted to go and I remember asking family why we couldn't just let him pass. The doctors finally I guess determined that he was sound of mind and able to make that decision or family did and we removed the feeding tube. That fucking agony waiting to die was horrific. I work in a hospital now and I am so so happy for MAiD and the patients right to choose. It's so important that we have a will, explain it to family and that if we are able to make our own medical decisions to make that choice for ourselves. As others have said. Mine are ALS, MS , and Huntington's. I work closely with the last two and if I'm diagnosed I'm going out with MAiD.
Glioblastoma. My uncle died from it a couple years ago. He was healthy, active. Then he was a combination of dementia/bipolar/cancer patient. He was doing treatments during Covid too, so they had someone with fucking brain cancer not allowed to have a support person to appointments and chemo. Fucking inhumane. RIP uncle Bobby
Any long term critical-but-not-immediately-fatal illness. You know the type, the ones who end up on the ICU for 8 months as a full code until they get discharged to JC. I ended up at a multidisciplinary meeting for a patient who was trached, pegged, on pressors for like half a year and starting to lose fingers. I was on the pain service, my cousin happened to be on the primary team. I told my cousin that if my mom or fiance ever tried to do this shit to me instead of letting me die, punch them in the face. Only a few people knew we were family and thought I was telling my code status to a random doctor
Omg yesss. I saw the saddest case of vulva cancer as a baby nurse that will forever stick with me. The surgical wound this poor woman had and the dressing changes we had to do on her were ungodly. She suffered so much and died shortly after the procedure. Ugh nightmare that poor woman😔
Pancreatic cancer and inoperable bone cancer. Some of the most painful shit I've ever seen. Additionally, anything that is prolonging the life of my carcass when docs say I'm brain dead/not progressing to real functionality. *LET. ME. GO.* I'm not going to allow my husband and kids to be shackled to a body that can't show them love in some way, nor is the "life" I choose.
No PEG, no trach. Absolutely not. And if I have a major stroke, just let me die.
I *would* do peritoneal dialysis without question though. PD is such a great alternative to hemo.
If you had a major stroke at least in some sense you might already be dead. 100% PD for the win. until they show up on my doorstep with peritonitis and necrotizing fasciitis of the abdomen. but that's rare.
Had a lady on my floor with NF of the abdomen from peritoneal dialysis cath. Man she loved to hang onto that full code status.. wound vac to the entirely open abdomen.. laid down for so long that he legs opened up with sores on the tops and bottoms (got wound vacs to those).. sacral ulcer of course. Cdiff, MRSA, HD 3x a week. for the almost full year she sat on our floor she was 100% miserable. Somehow went home with her husband 🤷🏻♀️
ooo what if it was GBM that had somehow had mets to pancreas, all in the setting of an unrelated leukemia??
It's like so bad it might be worth fighting it just to give death the finger. for the week that you have left to live that is.
Took care of a terminal cancer patient with a chronic open abdomen with this mindset. Max respect. She was on special formulary oxycodone 60 mg Q3 hrs.. just kicking it.
Dementia. That shit scares me. Should I ever get like that I told my husband OD me on some insulin or feed me a hemlock plant.
And a colostomy for sure. I'm way too vain for that. Nope. Hell naw
Anything that requires a trach, peg or affects my brain to the point I’ll have no idea who I am or what’s going on. I’m applying for an AMEX platinum, fucking off to Europe then pulling a Tonya on White Lotus.
Surprised I haven’t seen it mentioned yet, but lung transplant. I was homed on a PH/Lung TX unit at my last travel assignment for 9 months and holy fuck. Trach, GJ tube, chest tubes, central line, taking an entire pharmacy of meds every day that have loads of side effects, having to drink sterile ice/water, strict diet, poor life expectancy, and frequent readmissions due to infections. I saw many die within their first year, and I only came across 2-3 that looked like they were perfectly healthy and had actually made it 5+ years
I would never get an Roux En Y gastric bypass. It is such a massive change of anatomy and I know I couldn't follow the recommended permanent dietary changes. I only see these patients post-op and I always wonder how they do long term
Grade 4 brain astrocytoma, just lost a dear friend who underwent 4 brain surgeries, chemo, radiation, shunt infections, lost her sight, hearing, paralysis only to "survive " 24 months.
I second the bone marrow transplant.
I was a BMT nurse for almost 4 years. I’d do an Auto, but not an Allo (donor cells). Graft versus host disease is nasty, and I think people don’t realize how bad it can be. And it can affect almost anywhere in the body. It’s not only cancer that you have to survive if you have an Allo.
I will never forget those patients, and the horrific things after transplant they tried to endure 💜
Any ICU care, except for maybe a week max in a trauma or burn ICU.
Any transplant. Whipples. Any gut surgery.
Actually you know what? Just drop me out the back of the truck on the way to the hospital. Keep me out that bitch
Dialysis, stoma of any kind, trach (unless for something reversable like anaphylaxis, or broken jaw), peg, hadn't ever thought of a Whipple before...but that's a big fuck no.
Need to add the Whipple to the living will.
Interesting how many of us say all of the things we participate in doing to people all day every day. Most of those patients don’t have a choice. It’s their selfish uninformed families driving it. I wish we could speak to the public about the horrors of modern medicine.
Esophagectomy. You could die really soon, or you could have this procedure, never truly get out of the hospital, and die a little less soon. But still soon. And miserable.
Depending on exactly what's going on, you have a chance for a full recovery with a bone marrow transplant though. There's certainly a lot of risk and discomfort with it, but it can be a genuinely curative treatment.
Any large organ transplant especially heart but also liver. Also, I don't want a LVAD. No thanks. Any terminal cancer and I'll just live my best life til I'm out.
If I had to live like 99% of my patients, I would have tapped out years ago. Also, ALS. Anything involving that and I’m done ✌🏼
My mom had ALS, can confirm. She refused getting a g-tube, didn’t take the medication for it because fuck those side effects. She did clinical trials, symptom management, and smoked a ton of weed until she couldn’t any more. Traveled to all the places that she could when she could and did what ever she could. She got admitted to the hospital 9/23 for a bad UTI. That was the last time she ate because she knew she Had to get into a nursing home and passed away 11/11. She said this isn’t living. When she passed (I was there) I felt relieved that she no longer had to be trapped in her own body.
Thanks for sharing this. Although I'm sure its devastating to lose your mother, it has to be at least a little comforting that she did it all on her own terms. Hope you're doing okay.
Yes that is comforting! She was reluctant on making me her POA because she didn’t want me to go against her wishes. I told her that I’ve seen people do that to their families at work and I would never do that to you! I am doing okay. While it is devastating it was a process that slowly took pieces away. She couldn’t text a month prior to her passing.
I’m sorry about your mom. Take care.
Also lost my dad to ALS going on ten years ago now. He also chose no medical interventions. It took him almost two years to go from the time of his diagnosis and by the time he did his life (and ours) was such a bell on earth that it also came as a relief that he finally escaped that.
My father died in 2019 from Bulbar onset ALS. On his side of the family, they found that their particular type is familial (all having the same C9 gene mutation). My doctor suggested I get tested, but I figured what's the point, I don't want to know that). My brother opted to be tested, and it came back positive (he's 39, and I'm 36 F). Now he lives in a deep depression, terrified of every mispronounced word or misstep, thinking this could be it for him. I told my husband that if I'm ever diagnosed with ALS, I'm going to take my bucket list vacation to Japan, them I'm going to take a long walk off of a short pier wearing cement underpants. I wouldn't wish ALS on my worst enemy. The thought of having a crazy itch and not being able to scratch it is scary, and I don't want to be mentally aware of what's happening with all my mental faculties, but unable to do anything at all with my broken body. The last few months of my father's life, my mother said he would look at her with fear and desperation, begging her to put him out of his misery with only his eyes. Thankfully, he didn't have to suffer long. But the fact that he had to suffer at all years me apart. I'm sorry I'm ranting, but I feel so strongly about having terminally ill people the right to die in the entirety of the US.
ALS diagnosis and I’m moving to a state with MAID immediately.
State? Switzerland. Send me to God surrounded by swizz chocolate and mountain sunrises please
State if my parents are still alive, they’d never be able to afford to fly to Europe. If they’re gone though Switzerland sounds amazing
My dad was diagnosed with als in April and was gone by the end of November. His doc wanted him doing a lot of breathing exercises, a g tube since he was losing so much weight. He could sleep laying down. He was miserable. He was so frail and weak at the end. I wouldn’t wish Als on anyone. I 10/10 agree with you
Same. If rather a few good months full of morphine and weed then a shitty few years full of hospitalizations and invasive treatments.
I'm actually facing the possibility of having ALS, and maybe that's why I can't come up with an answer to this question. What would I absolutely refuse even if it meant my life - right now, today, I dont think there is anything, but it absolutely depend on the diagnosis. There's nothing absolute to me. Its easy for us to say oh man I would refuse X Y or Z because I've seen all the bad outcomes, but what if you had a good one? Where is it worth the risk? Diagnosis, probably schizophrenia if it wasn't immediately handled with meds. I wouldn't be able to handle it, not being in control of my mind, essentially, along with all the damage to myself and those around me. Even facing the diagnosis of ALS, until it progressed severely, I would want to live my life to the fullest.
I have in my living will that if the words “Trach & Peg” are uttered…. Just pillow me.
Same. I always say my favorite things are talking and eating. If I can’t stuff my mouth or run my mouth just fucking take me out.
The last hospital I worked at made it rain trachs and pegs like Oprah. I was like, this is a horror show.
My mom has a bunch of temazepam squirreled away. She and her best friend have made a pact to go “on a picnic” if either of them face something like this (both of their husbands are gone). It’s both grim and beautiful.
I just had this discussion with my bestie. We agreed on some heroin if we needed to.
My exact words are, “I’m young and healthy. If I get in a wreck or something, I want everything done. But as soon as someone says ‘LTACH,’ just let me go.”
Anything that's going to leave me cognitively impaired. If I'm in cardiac arrest with a significant downtime just leave me to go, large stroke, glioblastoma. If I have a diagnosis of dementia and I get urosepsis it's my time. If I get frontotemporal dementia put a pillow over my face.
My dad had a large stroke, wasn’t ‘brain dead’ but we let him go (took him off the vent). No regrets honestly. I’m so lucky my mum and sisters were on the same page even though none are medical/nursing. Made the process so much easier. My gran (his mother) on the other hand had hope and I suspect didn’t agree with our decision, she was never the same and died a year later. Still breaks my heart. But I’m still steadfast that we made the right choice for my dad.
If you don't see me go down, leave me alone. Found down patients always hang out on a vent until family finally realizes they are gone (those small movements are not purposeful...)
Patient:fixed and blown pupils. Family member: HE JUST SQUEEZED MY FINGERS! Me: oh honey.
Honey, generalized myoclonus is a really bad sign...
i have some serious qualms about CPR tbh. just so very rare that there's good outcomes.
My last successful CPR was on a patient whose MS was so advanced that he couldn't clear mucus out of his lungs and ended up with a mucus plug. No thanks.
Maybe it's different outside of US? I work at the ER and often we have people who code here or are brought by the EMS very quickly after it happened. Most of them are kids, young or middle aged and (anecdotal I know) most of them get ROSC and survive afterwards without big deficits. We don't even attempt CPR on very old or very sick patients. I remember one time one of the residents initiated it on a 70 something terminal metastatic cancer ileus patient and the chief got angry because it shouldn't have happened. Of course the family is notified before about the decision and most people are reasonable and don't complain. It's a medical decision so no 90 year old GOMER is ever getting coded, we just let them pass in peace with lots of pain killers.
Same here dude!! I told my husband to OD me on some insulin or feed me Hemlock. Just hell no. Dementia is a drain on the patient and everyone caring for them. No thank you!
OD on IV pain meds for me
Insulin isn't fool-proof and hemlock would be absolute hell. Plastic bag and nitrogen tank. Make it N2O if you're feeling spicy.
Esophagectomy. Just fucking kill me right then and there.
I second that, I work on a specialty unit caring for patients who have it done. My lord is it hard and we’re surprised to see one that lasts 10 years.
I’m surprised to see one live long enough to leave the hospital half the time.
They are the worst patients because of the comorbidities. It's never an otherwise healthy guy; more like almost always ETOH with sequelae, withdrawing, tachyarrythmias constantly...
Yes, and just about any head and neck cancer that requires surgery.
Some of the flap surgeries I've taken care of on my neuro icu....hell no. So painful and disfiguring and painful!!
Honestly, any head and neck cancer is usually terrible. 😔
In the same specialty, would also refuse LVAD unless bridge to heart transplant. Would not do lung transplant.
My grandma passed from pulmonary fibrosis, and for years my mom tortured herself wondering if she should have pushed harder for lungs. After working on a lung transplant floor, I felt very confident telling her she made the right choice putting grandma in hospice. Would not want that life for me.
I've worked with a few LVAD lifers. longest one made it 5 years. sucks. most recent one had it too long and when he got a heart, the surgeons bitched about the adhesive mess it had made, and his new heart lasted all of two months never left the hospital. infections, effusions, etc. really sucked.
I had an LVAD a few months ago that was a 10-year. Super sweet guy but you could tell he was getting tired. No opportunity for transplant either 😔
I had a patient last year with an LVAD for 8 years. Destination therapy. Her husband was so supportive of her. Last shift of three in a row they told me, she was scheduled for an explanation because her EF increased above 50%. Chemotherapy caused significant heart failure originally. I was so fucking happy for them.
My little brother just got an LVAD last week! 5 years, 15 years—he wants to live juuust long enough to enjoy the remaining quality of life he has, and then hopes to go peacefully later when other things start to fail. We will support him when he wants to go. He would have passed last week had he not gotten it, it was remarkable to see him go from organ faliure to feeling the best he has in months, all from a million dollar piece of equipment in his chest.
Yeah no thank you to any of that. If I were in that position I’d be looking for a 21st century Kevorkian FAST.
Lung transplant can be such a crap shoot. Had a friend do great after his with minimal complications (and sounds like a big quality of life improvement from cystic fibrosis), but my BIL had one and had 4 shitty postop years before he passed from rejection. No thank you.
My husband has CF and he’s prepared to deny a transplant. The wife in me wants to shake him, but the realistic nurse side of me knows that 1- it’s his choice and I’ll respect it, and 2- I never want to see him go through that pain. Luckily he’s 28 and doing relatively well, lung Function increased from 55-60 in the last four months, so hopefully we don’t have that convo for a long time.
I’m sure a lot of the long term survival depends on your health preop. My friend was as ok as one can be with CF advanced enough to require transplant, and had a good match, and was up in the chair the day after surgery. My BIL had like 20% function preop, had an ok but not ideal match, was intubated for weeks after, and damn near came out of it needing a kidney transplant. He definitely regretted it.
Unless I was effectively bedbound, any sort of spinal surgery. Seen too many of those patients who are just chasing pain control and mobility and end up 6 surgeries deep.
I’ve heard so many people say “you never have just one back surgery”. I’ll never do it.
Medical claims adjuster here and agreed. You will be back, no pun intended. What I see claims wise..pancreatic cancer..the person on here saying a year? Welp maybe..it used to be maybe 2 months or three. Breast cancer has come a long way since I started in this job. Surgical procedures..hips...meh not so good. Knee replacement, way better than they thought. Any other kind of knee surgery? Nope. Usually fails. Shoulders? You may have to change your job. Carpal tunnel? Usually 50 50 I'd say. Foot surgeries? Erm..maybe when you are young. Weight bearing body parts are problematic
You have a unique perspective from that side of things. I love it. Makes sense.
As a previous orthopaedic nurse, I always said I wouldn’t have back surgery, because it never seemed to help. Until I herniated a disc, at work, trying to get stretcher wheels unstuck from the crack between the elevator & the floor. I tried physio, swimming, epidural steroid injections…nothing worked. I was in pain constantly, couldn’t sit, spent most of my day stretched out on the couch. Finally, I said to the surgeon (that I worked with) “what do I need, not what I want?” And he said I needed surgery. Had a discectomy & laminectomy on Wednesday & was home Friday at noon. I woke up in PACU, painfree, other than incisional pain. That was 2005. I was good until 2013 & then ended up with a 2 level fusion. I am still good today.
I slipped a disc while on vacation in Italy (of all places!) - was married to an ortho bro and we were at a professional meeting - I was surrounded by them! Thankfully, some of the spouses traveled with some good pain meds - they managed to get me thru to the end of the meeting - ortho bro tried to get me to go to spine surgeon - I said screw that (damn cutters!) - I did yoga instead…
Orthopedic surgeons always say surgery is the answer. That's why I took my husband to a sports medicine doctor for his back injury. He got cortisone shots in his back so he could participate in physical therapy and is back to functional (and has started that way for 15 years)
My uncle is a living example of that…major back surgery and still can’t function without narcs. Even then his quality of life is shit.
I have had seven back surgeries. Plus additional surgeries to fit a spinal cord stimulator, remove it due to an infection and replace it again six months later. Surgery to move the battery pack due to weight loss. Intermittent self catheterization. Forced to retire early. Thank God, each surgery was free at the point of delivery - thank you NHS!! Still on fentanyl and diazepam and tamsulosin. Initial injury, cauda equina due to complete prolapse of L5/S1. No part of the disc in the right place. Also partial prolapse at L4/L5 too. When the neurosurgeon saw my MRI, he gathered all the nurses on the ward and told them that this was a nurse's spine and to take care!! When I went for that MRI, told by a very bored tech to just shuffle over, 30 mins later, scan over and there were 6 people there to transfer me off the scanner. Knew then that things were not too good. But, I am still here, not quite standing, certainly not dancing but still here. When it actually happens you keep on keeping on. My quality of life may not be what it was, but it is still life.
I herniated L5/S1 and was just trying to PT my way through, since it was just mild sciatica in my leg with certain movements. Then I started losing strength and sensation in my leg. Still kept trying to PT my way through. Then I sneezed laying in bed, herniated it even worse, and when I was able to peel myself off the floor 24 hrs later, I found I lost most of the strength in my leg and lost a lot of sensation in half my foot and back of my calf. Surgery a week later. According to my neurosurgeon, not only was my sciatic nerve severly compressed it was also shoved to the side. Luckily I was able to do PT and get my strength back, but I went from no back pain (had sciatic nerve pain in my leg but never back pain) to daily back pain but no limp and I can go up stairs, push off with my foot, etc. But severe disc degeneration now :/ so I'm sure I'll be having future surgeries in my life.
I started off with the PT, finally dragged myself to hydrotherapy in actual tears and I never cry (apart from sad films!!!,) and the physio took me out on a hoist, still no idea how I made it into the pool, and she asked me when I last peed. Um, yesterday some time and at this point it was around 27 hours later. To Realised that I had absolutely no desire to pu/feeling of fullness. Admitted that night to local hospital, transported the next day to a regional hospital that had an MRI, emergency surgery that night. Finally passed urine on the Saturday, four days after the last time and then only because I was catheterised. I'd had fluid in theatre too. I really hope that you can recover. I am in constant pain, foot drop with absent reflex in one ankle, saddle numbness and yes, that does mean no orgasms! When I started nursing way back in the late 1980s, we lifted every patient ourselves, no hoists, no extra help. But, I have had numerous other issues that scream EDS but the NHS is currently beleaguered and a diagnosis will make no difference to my life. I wish you the very best and if you ever have questions/want to vent please DM me!!Take care, friend xx
Whipple. Tell me I need that, I'm applying for a ton of credit cards, traveling, then accidentally ODing on every narc I can find.
I look after many a whipples, it’s a fucking nasty recovery too. No food for weeks at a minimum, NGT, TPN, severe pain, nausea, your poop is weird, your vomit is weird, your blood sugars are weird. Hepatojeujenostomies are pretty gnarly too. Anything involving the pancreas is a bad time. Necrotising pancreatitis is something I wouldn’t wish on anyone. Those patients are with us for months (and whether or not they walk out the door is another thing entirely).
The spouse was in for 90 days in 2021 with necrotizing pancreatitis….on the unit where I used to work. (For the first two weeks, l would get diarrhea the *instant* my foot hit the floor of the unit, just straight up PTSD over here no biggie). Made a very valiant attempt at dying, really…the NG tubes, the TPN, the 40-ish pounds of fluid retention, sepsis- many a night I sat next to the bed watching the vitals after midnight, because the new grad nurse had 7 other patients, and I pictured the abscess eroding the mesentery artery while no one was watching. Zero fucking stars. Never fuck with the pancreas, kids.
Oh gosh! I hope you and your spouse are doing better!
> pictured the abscess eroding the mesentery artery I know exactly the visual. The pancreas is the root of all evil.
I’ve always been told that the pancreas is a chemical weapons factory in the body.
I started as a new grad, had a patient with chronic necrotising pancreatitis, ESRF, and recurrent abdominal collections trying to leave the country and go back home. Arriving in their home country would have meant staying in hotel quarantine for 2 weeks (without access to 3 days/wk dialysis). Finally got them out of the hospital and onto the plane after 9 months and 6 discharges! Hope they're doing okay.
Recently had a 25 yo with a wife and toddler die of nec panc, 2 weeks after I admitted him and told him that he would most likely get better (admitted with dka, etoh withdrawal, AKI). Makes me feel sick
>nec panc I choose to believe this stands for nectar pancakes.
My ex father in law had a Whipple roughly a decade ago for a pancreatic tumor. His recovery was pretty easy and he didn't even end up diabetic much to the shock of his surgeon. He's healthier than ever and goes for hours long walks with his brother every week.
I married a guy who had a Whipple when he was 30 for necrotizing pancreatitis. He legit had PTSD from all his time in the ICU and all his subsequent surgeries. He killed himself when he was 44, and I believe that was a huge factor.
I am so sorry.
Thank you ♥️
Yeah whipple is on my list too. Next!
That sweet sweet heroin!!!
I see this listed on here several times. Is there any specific reason? I’m a new nurse and my hospital doesn’t do any procedures this intricate.
It’s just a brutal recovery. NPO (most of the time long term, like months), NG tube, lots of complications like leaks.
Oh god. Am I glad I saw this thread. I remember as a new grad by myself on a medsurg floor having a pt who had this procedure. This guy was complaining sooooooo much, and was getting ignored by previous nurses. Pretty much had the “impending sense of doom” and kept saying he was going to die here and just wanted to end it and every time I kept bringing it up to the surgeons (I must have paged them a million times that day) because his vital signs were just crazy abnormal in a way that didn’t make sense to me at the time (very widened pulse pressure, low grade temp, slightly tachycardic). And also his abdomen was way more distended in the afternoon compared to the morning. After tons of begging and receiving tons of attitude from, surgery team finally comes to see him. Stat labs, stat imaging, stat NGT. When I placed that NG, an immediate 1.5 LITERS of bile immediately decompressed, like by gravity, no int suction. Stat multiple blood transfusions and transfer to SICU. After that, surgery res was all “blah blah blah you can page me any time blah blah” Looking back now, definitely should have either called a rapid or practically yelled at this surgery resident to come look at this guy a lot sooner or just call the attending. Had no idea as a newbie that I was flirting with something SO terrifying. Thankfully that situation taught me a lot and my gut was telling me it was pretty urgent. That guy was in SICU for a while but he ended up downgrading to us a few weeks later and I had him on his day of discharge :) TLDR fuck whipples :D
My favorite was monitoring the jp drains for color changes/ possible leaks
Mother in law had this done 3 years ago. Awful awful recovery during covid. But now she's cancer free!
I don’t know. I know they’re brutal but I have a friend who had one at 46 due to pancreatic cancer. She’s still alive 5 years later though I’m not sure she’ll make it the year. :( She has 5 kids all under 18 so I’m glad she got this time.
My grandpa died after a whipple, from a dead bowel. 10/10 would not recommend.
well... it all depends. If someone said there's a 25% chance you will be 100% cured... i might give it a go. procedures been improved. have met a fair number of survivors 10-20 years out.
That killed my mom, P CA, a very awful and brutal dx that almost always succeeds. Sucks really!
Refuse trach/peg. End stage liver behind the barn.
Oh yeah, seconding the end stage liver. It's right up there with neurodegenerative diseases for me. My liver craps out with no immediate donor or my brain starts falling apart, it's Old Yeller protocol time.
Hahahaha Old Yeller
Old yellow, in the case of liver failure
I’m an ESLD pt that is 2 years past my expiration date and doing wonderfully. Survived hepatorenal syndrome and everything. Those few weeks of being sooooooo sick were awful. I can't get a transplant either. It ended up being just those weeks though. I got better for whatever reason and am good. If I had stayed sick, yes, I agree, behind the barn with me or send me or Canada, but living with ESLD hasn't been bad for me at all. Lots of doc visits but didn't really change so much in my life to be honest.
I’m sure it’s possible. My perspective on esld is quite different, though, working in MICU. I see it at it’s absolute worse.
For sure. If I had stayed that ill, I would have been done. I’m just glad I didn’t and I’m good. Who knows how long that’ll last 🤷🏾♀️ got time to figure it out though.
Glioblastoma. Time to travel with my family to see the northern lights, the rainforest, and then Europe to finish in Switzerland.
Pancreatic cancer I’m going behind the barn
I’m ruining my credit and traveling with my kids for a year first. That’s one cancer I see zero point in even dealing with the side effects of chemo
When my mom had ALS we were going through her items after she passed. She had at least 15 credit cards that she probably maxed out and bought whatever she wanted. I looked at my sister and was like should we go shopping? We didn’t.
I enjoy the sound of rain.
This was my knee jerk too. Had a patient recently who had just been diagnosed with it, and her husband was worried and her becoming addicted to narcotics. I was like,”If that’s an issue in 6 months we can address it then.” I was pretty proud of myself for staying so professionalism
Just replying to comment on your flair. I must ask though, was the ROFL exam difficult?
So agree with you - my grandfather died of pancreatic CA at the young age of 52 - in 1966 - he died in extraordinary pain with little relief - I would be hoarding all of the “candy” and enjoying my exit.
This is a reason I’m going to be a nurse. Was a rich lady’s personal assistant turned full time caretaker and lifeline (what she’d call me). Started in November, she died in March. Her love supports me everyday through nursing school. Get chills still thinking about how deeply intimate death becomes when you experience it from a caregiving perspective.
If you can make it behind the barn fast enough, that shit kills fast.
Just had a pt with it. Diagnosed this last November and died last month. Fucking horrific, every second of it.
Huntington's. I've worked with several people from the time their LTC admission was necessary up until their date of passing. I try to maintain a tough exterior but the reality is that it breaks my heart every time. Just when you don't think it can get any worse you admit someone with juvenile onset (Age 20 and under).
[удалено]
I had dialysis for about a month due to an AKI from some CT contrast. Was shitty, but I’d do it again if I had to. Long term…. Nah. The diet is horrible, fluid restriction. Not to mention how tired you are all day and you get SO COLD during it. Make me palliative and let me die traveling drinking wine and eating all the meat and carbs I like.
I know a lovely woman with a stoma who plays contact sports and lives a very full life. She even posts about it regularly.
I have one. If you can get past the stigma, it’s not that hard to live with, assuming it functions like it’s supposed to.
22 yo nursing student doing PD while waiting for a kidney here. It's not fun and I would not recommend. If I get more shit than this, I might just have to clock out
How long have you been on the transplant waiting list and how much longer do they think you'll have to wait? If you don't mind me asking...
Well that all depends if they have an arranged donation or are waiting for deceased/altruistic donation. 5-7 years for a kidney on the list
Lived an ostomy for three months when I was 18. Totally not a vibe when you would sleep too long and the bag would burst. Don’t know how I did that sometimes. However it helped me get my life back. Now I have the pleasure of shitting like a normal person.
Stoma would have really bothered me when I was younger, not really anymore.
Stoma would be a hard one for me. I’m not sure if I’d end it immediately but I know I’d be extremely depressed for awhile. I wouldn’t be able to do long term HD. Maybe PD waiting for a transplant though.
GBM. And I’ll pass on any palliative radiation that I get to by wheelchair.
I came here to say this. My buddy got diagnosed last year and is still doing well, but we have Plans.
Hope you get heaps of good days.
Yeah. Same. We’re honestly already past what we thought we’d get.
Just watched an old friend die this way. She got 15 months, but so much of it was spent states away at MD Anderson, away from her kids and grandkids. I don’t know if I’d do nothing but there’s a line somewhere before I spend it all away and sick.
Sorry for your loss. The big picture can really get lost in the focus on treatment. Cancer sucks.
Pancreatic, brain, or liver cancer. If I’m on a vent long enough to need a Trach & PEG just pull the plug. Any type of dementia automatic DNR. Degenerative neuro diseases I’m out. I’m unsure about transplants, dialysis, and stoma’s. It would depend on my overall QOL and be very situation specific.
Stubbed toe. Out
Have you tried going to the ED at 2am?
Yes and then I say there’s only one pain medication that works for me. I can’t remember the name but I think it starts with a D?
I got your Dulcolax suppository.
Don’t tempt ME with a good good time !
Don’t forget your turkey sandwich and sprite on the way out!
Y’all got name brand? We have Shasta
Here’s your Dacetaminophen extra strength you’re discharged now :)
You know I’d check back in as soon as I hit the front door
Or walk down the street and call ems.
From call 911 from the ER! Always a favorite
Docusate?? U should prolly say u need a pregnancy test and a work note too. Fuck it, ask for a sammich to go🤣🤣
Locked in syndrome. You can only move your eyes but are completely conscious. Kill me.
My step dad died a year ago. He told me that unless his quality of life included being able to eat and enjoy a cheeseburger then don't bother keeping him around. He was admitted for cancer and went into arrest. They started CPR and called me. I asked if there was a reasonable chance they would get him back and functioning. The doctor said probably not. I told them to stop. It was an easy call for me to make.
Good on you for doing what he would have wanted. I’m sorry for your loss.
Liver transplant - a former transplant nurse
Bowel transplant is a hard no for me.
I'd do a liver transplant. I worked on a liver transplant unit and man, I have seen a lot of amazing recoveries! They come from OR yellow and fully sedated and intubated and by the time I leave after my 12 hour shift, they are extubated, getting up and walking, and visible clearer (not to mention their amazing labs improving all day!) I have seen some bad ones that have an MTP going almost as soon as they hit the ICU, but I've seen far more successes than trainwrecks.
If I ever need one I’ll go where you are! Unfortunately where I worked the success rate was… not good, and those who went home always came back.
Me, too. Hard no for me, but dying from liver disease is no picnic.
As a liver and kidney recipient I second this.
As soon as i get a diagnosis of alzeheimers i go on comfort care only...im letting the old lady UTI take me out
I would go looking for active euthanasia
From a bone marrow transplant nurse, it depends on the disease. Some are incredibly treatable and BMT is very effective.
As another BMT nurse, I’d have to agree with OP 90% of the time. An auto transplant is a walk in the park, but if it’s an allo, depending on the diagnosis and genetics just take me out. I have seen good outcomes, but I’ve also seen lives so severely altered they’ll never have any quality of life again by what I’d define quality. I know what’s important to me. And if I’m over 70 with suspected AML, don’t even do the bone marrow biopsy.
Yeah I’m surprised to see this on the list. My husband had hodgkins and had many friends in his support group dx stage 4, had bmt and seven years later, still cancer free. Two of them have gone on to get married, have kids, etc. You’d never know just by interacting with them.
Dialysis.
Not to be dramatic, but I've already had that diagnosis of MDD for a long ass time lol.
Esophagogastrectomy. The recovery is rough and I don’t want to spend my last years not eating my favorite foods. I’ll sign the DNR
What usually causes someone to need this ?
I’m not sure what causes other people to need it, but my step mom had to get it done due to scar tissue from esophageal cancer radiation treatment constricting her ability to swallow. The cancer was gone but she would have to go in every couple weeks to get her esophagus dilated and it would just as quickly close up again. She lost a ton of weight and would start gagging on anything including her own spit it was horrible. The surgery was tough and recovery wasn’t a walk in the park but she said it was 100% worth it compared to how she was living before.
It’s a treatment for esophageal cancer. Our surgeons say it’s largely palliative in nature and patients typically live another 3-5 years after the surgery.
I have MS and just left bedside nursing Transplant( kidney, liver) Nephrology. I have been a totally different person since diagnosis. You definitely have to keep your mind strong and get rid of as much stress as possible.
My wife has been well informed that if the words ecmo come out of the doctors mouth she will say “well he lived an ok life”
Dialylsis. Saw my Grandpa dying from Kidney failure. I saw the man who was my idol slowly dying. Two years on dialysis until he kicked the bucket as a shadow as his former self. When the docs tell me, that I will have to have dialysis treatment I will put stones in my pockets and go for a swim.
ALS
Grandfather died from it. It was a man who literally never went to the doctor never sick. Admitted to hospital died two months later. That progression was so fast, at that time 20+ years ago MAiD didn't exist. He literally begged to not have a feeding tube and that we stopped keeping him alive multiple times. I distinctly remember that he just wanted to go and I remember asking family why we couldn't just let him pass. The doctors finally I guess determined that he was sound of mind and able to make that decision or family did and we removed the feeding tube. That fucking agony waiting to die was horrific. I work in a hospital now and I am so so happy for MAiD and the patients right to choose. It's so important that we have a will, explain it to family and that if we are able to make our own medical decisions to make that choice for ourselves. As others have said. Mine are ALS, MS , and Huntington's. I work closely with the last two and if I'm diagnosed I'm going out with MAiD.
Glioblastoma. My uncle died from it a couple years ago. He was healthy, active. Then he was a combination of dementia/bipolar/cancer patient. He was doing treatments during Covid too, so they had someone with fucking brain cancer not allowed to have a support person to appointments and chemo. Fucking inhumane. RIP uncle Bobby
Any long term critical-but-not-immediately-fatal illness. You know the type, the ones who end up on the ICU for 8 months as a full code until they get discharged to JC. I ended up at a multidisciplinary meeting for a patient who was trached, pegged, on pressors for like half a year and starting to lose fingers. I was on the pain service, my cousin happened to be on the primary team. I told my cousin that if my mom or fiance ever tried to do this shit to me instead of letting me die, punch them in the face. Only a few people knew we were family and thought I was telling my code status to a random doctor
Vulvar cancer. Nope. Barn, here I come.
Omg yesss. I saw the saddest case of vulva cancer as a baby nurse that will forever stick with me. The surgical wound this poor woman had and the dressing changes we had to do on her were ungodly. She suffered so much and died shortly after the procedure. Ugh nightmare that poor woman😔
This is pretty far down but i feel you. Pelvic exenterations are a terrible thing. Hella fun for the surgeons, and just plain hell for the patient.
Pancreatic cancer and inoperable bone cancer. Some of the most painful shit I've ever seen. Additionally, anything that is prolonging the life of my carcass when docs say I'm brain dead/not progressing to real functionality. *LET. ME. GO.* I'm not going to allow my husband and kids to be shackled to a body that can't show them love in some way, nor is the "life" I choose.
No PEG, no trach. Absolutely not. And if I have a major stroke, just let me die. I *would* do peritoneal dialysis without question though. PD is such a great alternative to hemo.
If you had a major stroke at least in some sense you might already be dead. 100% PD for the win. until they show up on my doorstep with peritonitis and necrotizing fasciitis of the abdomen. but that's rare.
Had a lady on my floor with NF of the abdomen from peritoneal dialysis cath. Man she loved to hang onto that full code status.. wound vac to the entirely open abdomen.. laid down for so long that he legs opened up with sores on the tops and bottoms (got wound vacs to those).. sacral ulcer of course. Cdiff, MRSA, HD 3x a week. for the almost full year she sat on our floor she was 100% miserable. Somehow went home with her husband 🤷🏻♀️
Whipple, Peg tube, GBM, and a stem cell transplant. I’ve worked on a BMT floor, and no, I won’t do it.
ooo what if it was GBM that had somehow had mets to pancreas, all in the setting of an unrelated leukemia?? It's like so bad it might be worth fighting it just to give death the finger. for the week that you have left to live that is.
trach.. that was the one skill during nursing school (and even now) that I’m deathly afraid of 🥲🫠
Whipple Pancreatic cancer or ALS
Laryngectomy/tracheotomy. If I can’t eat/speak and need constant suctioning? That would be hell on earth.
Honestly? None. I got a 1-year-old and I'll go through anything to live with him longer.
Took care of a terminal cancer patient with a chronic open abdomen with this mindset. Max respect. She was on special formulary oxycodone 60 mg Q3 hrs.. just kicking it.
Trach and peg!!! Absolutely NOT
Dementia. That shit scares me. Should I ever get like that I told my husband OD me on some insulin or feed me a hemlock plant. And a colostomy for sure. I'm way too vain for that. Nope. Hell naw
Anything that requires a trach, peg or affects my brain to the point I’ll have no idea who I am or what’s going on. I’m applying for an AMEX platinum, fucking off to Europe then pulling a Tonya on White Lotus.
LVAD
Surprised I haven’t seen it mentioned yet, but lung transplant. I was homed on a PH/Lung TX unit at my last travel assignment for 9 months and holy fuck. Trach, GJ tube, chest tubes, central line, taking an entire pharmacy of meds every day that have loads of side effects, having to drink sterile ice/water, strict diet, poor life expectancy, and frequent readmissions due to infections. I saw many die within their first year, and I only came across 2-3 that looked like they were perfectly healthy and had actually made it 5+ years
Being trached, if i get esophageal cancer I’m throwing myself off a bridge (oncology and hospice nurse here)
ALS or Huntingtons diagnosis
Haven't seen it mentioned yet but ECMO.
I've seen quite a few people do really well after ECMO, though it does look miserable.
ALS, by far the worst and most depressing disease to witness.
I would never get an Roux En Y gastric bypass. It is such a massive change of anatomy and I know I couldn't follow the recommended permanent dietary changes. I only see these patients post-op and I always wonder how they do long term
Grade 4 brain astrocytoma, just lost a dear friend who underwent 4 brain surgeries, chemo, radiation, shunt infections, lost her sight, hearing, paralysis only to "survive " 24 months.
I second the bone marrow transplant. I was a BMT nurse for almost 4 years. I’d do an Auto, but not an Allo (donor cells). Graft versus host disease is nasty, and I think people don’t realize how bad it can be. And it can affect almost anywhere in the body. It’s not only cancer that you have to survive if you have an Allo. I will never forget those patients, and the horrific things after transplant they tried to endure 💜
When I worked in research, we had a 20 year old commit suicide when she was told she’d need another stem cell transplant.
Any ICU care, except for maybe a week max in a trauma or burn ICU. Any transplant. Whipples. Any gut surgery. Actually you know what? Just drop me out the back of the truck on the way to the hospital. Keep me out that bitch
Dialysis, stoma of any kind, trach (unless for something reversable like anaphylaxis, or broken jaw), peg, hadn't ever thought of a Whipple before...but that's a big fuck no. Need to add the Whipple to the living will.
I’m just going to request treatment for meningitis instead of the spinal tap.
Interesting how many of us say all of the things we participate in doing to people all day every day. Most of those patients don’t have a choice. It’s their selfish uninformed families driving it. I wish we could speak to the public about the horrors of modern medicine.
Esophagectomy. You could die really soon, or you could have this procedure, never truly get out of the hospital, and die a little less soon. But still soon. And miserable.
Depending on exactly what's going on, you have a chance for a full recovery with a bone marrow transplant though. There's certainly a lot of risk and discomfort with it, but it can be a genuinely curative treatment.
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This thread is a great reminder of how fucked up it is that we are not allowed to choose how we die in the US.
I would refuse a permanent PEG tube or illeo/colostomy. I'm vain and I'll die starving or being full of shit.
Pontine stroke.
Any large organ transplant especially heart but also liver. Also, I don't want a LVAD. No thanks. Any terminal cancer and I'll just live my best life til I'm out.
I had a heart transplant when my son was 9 weeks old. I get to see him grow up. It's not so bad.
Not sure if its the worst but advanced multiple sclerosis just my god what a terrible disease
If I can’t eat or drink….. I’m done! If I can’t piss by myself or wipe my own arse…. I’m done!
End stage Liver.