Help Me To Be Heard By Medical Professionals
June 8, 2023 8:15 PM Subscribe
(YANMD) Help me to get medical professionals to listen to me and understand that when I say I have an extreme reaction to General Anesthesia and Propofol I mean it.
I have a history of extreme reactions to general anesthesia and Propofol. I takes far more than normal amounts to put me out and keep me out. I usually have to spend as much 2 hours plus in recovery just coming out of anesthesia.
Today I went for a ultrasound endoscopy/colonoscopy, which in the end turned out to be negative.
I had had 2 previous colonoscopies, one was a twilight with fentanyl years ago, which was easy and had no problems. The second was earlier this year and I had a negative reaction to Propofol and took forever to recover. Today's colonoscopy was a CYA response to a spot outside the bowel wall which looked benign but the first Dr. referred me to a specialist "just to be sure". I didn't want to do that but cancer word was subtly implied but never spoken aloud. In the end, I used delaying tactics but eventually gave in to having the procedure.
At the specialty hospital I talked to the anesthesiologist, the nurse anesthetist, and the endoscopy Doc and literally begged them to give something other that Propofol. I was told that Propofol was really the only appropriate thing for this procedure . Later I heard that Ketamine can be used in similar situations.
I came out of the anesthesia to find that I had aspirated twice on the propofol and they kept giving me more in order to let the Doc finish the procedure. This was a very serious situation which they presented as another day at the office.
I'm home now with a very sore throat, and occasionally coughing up yellow stuff from my lungs. I'm also pissed off and sad that my previous experience and request weren't listened to. I don't ever want to go though this again. What should I do differently to avoid a situation like this in the future?
I have a history of extreme reactions to general anesthesia and Propofol. I takes far more than normal amounts to put me out and keep me out. I usually have to spend as much 2 hours plus in recovery just coming out of anesthesia.
Today I went for a ultrasound endoscopy/colonoscopy, which in the end turned out to be negative.
I had had 2 previous colonoscopies, one was a twilight with fentanyl years ago, which was easy and had no problems. The second was earlier this year and I had a negative reaction to Propofol and took forever to recover. Today's colonoscopy was a CYA response to a spot outside the bowel wall which looked benign but the first Dr. referred me to a specialist "just to be sure". I didn't want to do that but cancer word was subtly implied but never spoken aloud. In the end, I used delaying tactics but eventually gave in to having the procedure.
At the specialty hospital I talked to the anesthesiologist, the nurse anesthetist, and the endoscopy Doc and literally begged them to give something other that Propofol. I was told that Propofol was really the only appropriate thing for this procedure . Later I heard that Ketamine can be used in similar situations.
I came out of the anesthesia to find that I had aspirated twice on the propofol and they kept giving me more in order to let the Doc finish the procedure. This was a very serious situation which they presented as another day at the office.
I'm home now with a very sore throat, and occasionally coughing up yellow stuff from my lungs. I'm also pissed off and sad that my previous experience and request weren't listened to. I don't ever want to go though this again. What should I do differently to avoid a situation like this in the future?
Sensitivity to anesthetics can be a genetic thing; my kids and I have a mutation for this. The last time we had a surgery planned, I told anyone and everyone at the hospital about our sensitivity/mutation, including speaking to the anesthesiologist directly.
It sounds like you did everything right. They still failed. It makes sense that you're angry and disappointed.
For next time, phrases like "This is a known problem, in the past it has affected my breathing and level of sedation during the procedure", and "Can you please write this on my chart, right now?" might be useful.
posted by (F)utility at 10:21 PM on June 8, 2023 [2 favorites]
It sounds like you did everything right. They still failed. It makes sense that you're angry and disappointed.
For next time, phrases like "This is a known problem, in the past it has affected my breathing and level of sedation during the procedure", and "Can you please write this on my chart, right now?" might be useful.
posted by (F)utility at 10:21 PM on June 8, 2023 [2 favorites]
That's lousy, and I'm really sorry.
The best way to be heard by medical professionals is to have had your extreme reactions documented by previous medical professionals. Then when you advocate for yourself, or have someone else advocating for you (which can sometimes improve your outcomes, as unfair as that is), there's a paper trail for "proof."
Have the adverse reaction you're currently experiencing noted in your patient file as soon as possible. If you have access to MyChart in your health system, send a message to your doc detailing what you're experiencing after today's procedure. Next, ring the after-hours triage nurse or doctor on call and let them know, too. (Messages can take up to three business days to be read.) Review the medical notes from your first colonoscopy this year, and have them amended if they're lacking.
Maybe explore the root of these sensitivities (possibly due to quirks in metabolism, allergy, pseudocholinesterase deficiency, red hair genes, and so on) to Propofol and other anesthetics with your GP, to further document your medical needs.
posted by Iris Gambol at 10:26 PM on June 8, 2023 [10 favorites]
The best way to be heard by medical professionals is to have had your extreme reactions documented by previous medical professionals. Then when you advocate for yourself, or have someone else advocating for you (which can sometimes improve your outcomes, as unfair as that is), there's a paper trail for "proof."
Have the adverse reaction you're currently experiencing noted in your patient file as soon as possible. If you have access to MyChart in your health system, send a message to your doc detailing what you're experiencing after today's procedure. Next, ring the after-hours triage nurse or doctor on call and let them know, too. (Messages can take up to three business days to be read.) Review the medical notes from your first colonoscopy this year, and have them amended if they're lacking.
Maybe explore the root of these sensitivities (possibly due to quirks in metabolism, allergy, pseudocholinesterase deficiency, red hair genes, and so on) to Propofol and other anesthetics with your GP, to further document your medical needs.
posted by Iris Gambol at 10:26 PM on June 8, 2023 [10 favorites]
As a side comment in case you have to do another colonoscopy, where I am it's absolutely not done under sedation. On request you can get a little something to lower anxiety/nerves, but other than that I've been wide awake any time I've done it.
posted by Iteki at 10:55 PM on June 8, 2023 [5 favorites]
posted by Iteki at 10:55 PM on June 8, 2023 [5 favorites]
In the hospitals where I work, these are not uncommon discussions. I can imagine they might be strained discussions if they're happening on the day of a procedure but, nevertheless, if I were in a similar situation I would decline the procedure and let billing/scheduling sort it out while we figure out what needs to be done. If put under pressure by staff (and I know that happens), I would steel my spine and say "you wouldn't go through with an amputation just because it was scheduled for today if the patient was teling you you had the wrong leg, would you?" If pressed further, I would Lose My Shit* and tell everyone to fuck off until this problem is heard and resolved.
*This is an unfortunate but very real part of the medical patient toolkit. You don't have to raise your voice to Lose Your Shit, you only have to be insistent and firm. You do not have to back down because the people pressuring you are in scrubs or lab coats. If they're doing something wrong, all their training may be an unfortunate barrier to them admitting it or even considering it. Sometimes you just have to say, thanks but fuck no!
posted by late afternoon dreaming hotel at 2:35 AM on June 9, 2023 [9 favorites]
*This is an unfortunate but very real part of the medical patient toolkit. You don't have to raise your voice to Lose Your Shit, you only have to be insistent and firm. You do not have to back down because the people pressuring you are in scrubs or lab coats. If they're doing something wrong, all their training may be an unfortunate barrier to them admitting it or even considering it. Sometimes you just have to say, thanks but fuck no!
posted by late afternoon dreaming hotel at 2:35 AM on June 9, 2023 [9 favorites]
The thing that you have a problem with is deep sedation. What you describe is not an extreme reaction, and is not a sensitivity. Language that makes it clear that this is going to be annoying for them will usually help. "Anesthetists tell me that it is very hard to reach a plane of sedation with propofol. I end up fighting them the whole time then being too deep. I get so much that I spend a long time in recovery." If you are scheduled close to the end of the day, that "long time in recovery" will trigger them to do something else (because they can't go home until the last patient is ready to discharge). Many stand-alone GI facilities really do not want to do anything other than deep sedation. Although these procedures can usually be done with no to minimal sedation and topical numbing, most Americans have expectations of being deeply sedated and completely unaware. Many GI docs have not trained to do them awake. Patients who are thin or have had multiple abdominal surgeries can have pain during colonoscopy awake. The other end of the spectrum is general anesthesia, usually with a breathing tube. This is more expensive, and you may have to fight your insurer ahead of time. There are risks with GA, but in most patients, they are not realistically higher than an inelegant sedation.
You are welcome to request deep sedation with ketamine, but you might not like it. It causes dissociative hallucinations in some people. Clinicians might look at you strangely, because there are a small number of people who like that (although there are many more who seek propofol). A combination of ketamine and propofol or midazolam is usually excellent. There are plenty of other options, but propofol and midazolam are the most reliable short acting amnestic / hypnotic agents available.
posted by a robot made out of meat at 6:41 AM on June 9, 2023 [9 favorites]
You are welcome to request deep sedation with ketamine, but you might not like it. It causes dissociative hallucinations in some people. Clinicians might look at you strangely, because there are a small number of people who like that (although there are many more who seek propofol). A combination of ketamine and propofol or midazolam is usually excellent. There are plenty of other options, but propofol and midazolam are the most reliable short acting amnestic / hypnotic agents available.
posted by a robot made out of meat at 6:41 AM on June 9, 2023 [9 favorites]
if I were in a similar situation I would decline the procedure
Just want to emphasize that you can totally do this. I was in the ER with severe anemia, and the doctor told me I'd need a bone marrow biopsy. I said I wouldn't do it without sedation. She said sedation was not possible. I said then I wasn't having one. I was polite but did not back down. She figured out a way to make it possible.
posted by FencingGal at 6:52 AM on June 9, 2023 [8 favorites]
Just want to emphasize that you can totally do this. I was in the ER with severe anemia, and the doctor told me I'd need a bone marrow biopsy. I said I wouldn't do it without sedation. She said sedation was not possible. I said then I wasn't having one. I was polite but did not back down. She figured out a way to make it possible.
posted by FencingGal at 6:52 AM on June 9, 2023 [8 favorites]
You should have medical notes from the anesthesiologist for past procedures. Bring them. This is how I handle it, and have had an easy experience since I started this practice. I don’t try to talk to the docs, I let the documents do the talking.
posted by Bottlecap at 10:05 PM on June 9, 2023 [1 favorite]
posted by Bottlecap at 10:05 PM on June 9, 2023 [1 favorite]
At the specialty hospital I talked to the anesthesiologist, the nurse anesthetist, and the endoscopy Doc and literally begged them to give something other that Propofol. I was told that Propofol was really the only appropriate thing for this procedure . Later I heard that Ketamine can be used in similar situations.
I came out of the anesthesia to find that I had aspirated twice on the propofol and they kept giving me more in order to let the Doc finish the procedure.
So, respectfully, you told the anesthesia provider that you didn't want propofol and they told you there were no other options available, and then you signed a consent to anesthesia (if you didn't sign a consent to anesthesia and you're in the US, then the facility made a major error). It doesn't sound like they didn't listen to you so much as they told you what to expect and you decided to rolle the dice rather than backing out at the last minute after a difficult prep. It's understandable, but it's not quite them not listening.
There are plenty of alternatives to propofol for procedural sedation, but colonoscopies are typically performed in high volume facilities that don't have the resources to tailor their care beyond the norm, particularly when patients consent to usual care. Patients who have a need for different types of anesthesia care for colonoscopy (mostly people with significant comorbidities that increase their risk of complications from anesthesia) are often referred to hospital-based endoscopy where there are more resources and pharmacologic options. This would involve a conversation with your doctor before you are scheduled for your colonoscopy because once you are scheduled at a facility that only has the resources to do standard propofol, that will probably be the only thing they can offer you on the day.
posted by telegraph at 3:05 PM on June 10, 2023 [3 favorites]
I came out of the anesthesia to find that I had aspirated twice on the propofol and they kept giving me more in order to let the Doc finish the procedure.
So, respectfully, you told the anesthesia provider that you didn't want propofol and they told you there were no other options available, and then you signed a consent to anesthesia (if you didn't sign a consent to anesthesia and you're in the US, then the facility made a major error). It doesn't sound like they didn't listen to you so much as they told you what to expect and you decided to rolle the dice rather than backing out at the last minute after a difficult prep. It's understandable, but it's not quite them not listening.
There are plenty of alternatives to propofol for procedural sedation, but colonoscopies are typically performed in high volume facilities that don't have the resources to tailor their care beyond the norm, particularly when patients consent to usual care. Patients who have a need for different types of anesthesia care for colonoscopy (mostly people with significant comorbidities that increase their risk of complications from anesthesia) are often referred to hospital-based endoscopy where there are more resources and pharmacologic options. This would involve a conversation with your doctor before you are scheduled for your colonoscopy because once you are scheduled at a facility that only has the resources to do standard propofol, that will probably be the only thing they can offer you on the day.
posted by telegraph at 3:05 PM on June 10, 2023 [3 favorites]
Response by poster: It's a week+ later and I am still feeling the effects of this botched procedure, I am finally over the direct effects of the anesthesia but have lost my voice. My PCP told me to "gut it out" until my voice came back. I'm not sure it's going to come back but have been unable to get a referral to an ENT or have anyone look my throat. I'm feeling abandoned by the medical system. It also turns out that the endoscopy was never completed because of my aspiration.
The anesthesia took place in a major teaching hospital/medical center with infinite anesthesia resources. My previous difficulties with anesthesia took place in this facility and I asked the Docs to check my records but they didn't. tl/dr There were other options available for my anesthesia but the Docs chose not to use them out of expediency.
posted by Xurando at 3:15 PM on June 16, 2023 [1 favorite]
The anesthesia took place in a major teaching hospital/medical center with infinite anesthesia resources. My previous difficulties with anesthesia took place in this facility and I asked the Docs to check my records but they didn't. tl/dr There were other options available for my anesthesia but the Docs chose not to use them out of expediency.
posted by Xurando at 3:15 PM on June 16, 2023 [1 favorite]
Best answer: You tried to talk with them about your previous reactions, to no avail; you aspirated twice and were given additional propofol to continue the procedure... and you've since learned the endoscopy portion wasn't EVEN completed at this teaching-not-learning hospital?!? That's outrageous, Xurando!
Post-endoscopy hoarseness can linger for 2-3 weeks. Monitor it, and track any new or escalating concerns -- particularly any signs of pneumonia or other respiratory infections.
Whether you're in a known risk group or not, you're having a lousy time of it with medical care and you were professionally advised to "gut it out" (wth). In your weariness, you might be inclined to put off another medical evaluation; please don't do that.
Don't hesitate to go to the emergency room if necessary.
Take good care, and do get copies of all your medical records as soon as possible; in collecting these links, I'd started to wonder if your issue is negative general anesthesia/propofol reaction alone, or if being administered a post-procedure anesthesia "reversal" drug like naloxone plays a role.
posted by Iris Gambol at 6:59 PM on June 16, 2023
Post-endoscopy hoarseness can linger for 2-3 weeks. Monitor it, and track any new or escalating concerns -- particularly any signs of pneumonia or other respiratory infections.
Whether you're in a known risk group or not, you're having a lousy time of it with medical care and you were professionally advised to "gut it out" (wth). In your weariness, you might be inclined to put off another medical evaluation; please don't do that.
Don't hesitate to go to the emergency room if necessary.
Take good care, and do get copies of all your medical records as soon as possible; in collecting these links, I'd started to wonder if your issue is negative general anesthesia/propofol reaction alone, or if being administered a post-procedure anesthesia "reversal" drug like naloxone plays a role.
posted by Iris Gambol at 6:59 PM on June 16, 2023
This thread is closed to new comments.
When you signed the paperwork consenting to the procedure did they list the medications they were going to use?
I think telling them that you're allergic to propofol might be an indirect way of stopping it in the future, at least.
posted by sibboleth at 8:36 PM on June 8, 2023 [3 favorites]