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Are you allowed to have sedation for procedures or do you need gen. anesthesia?
Today I ran into a bit of a problem. I was supposed to get a tube replacement done at my local hospital (probably mistake number 1 since that is not where my care team is). When I arrived at check in for my surgery I was advised that the surgery would be done under sedation. I was upset that the team did not review the fact that I am considered a patient with severe systemic disease and therefore cannot have sedation without being intubated. I require general anesthesia for my procedures and surgeries that require me to be asleep so that I can have assistance with my respiration, otherwise I would have stopped breathing completely.
This is a serious risk and one that should be discussed with my medical team before doing a surgery. They had to cancel the surgery today because they were not equipped with the anesthesia team to properly care for me. Have you ever had this problem? Are you allowed to have sedation for procedures or do you have to be put completely to sleep because of your breathing risk/ other risks with sedation?
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13 Replies
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Well, that’s definitely concerning! I’m so sorry you went through both that scare and disappointment. I’m sure you were hoping to have that over and done with today. Self-advocating is such a huge responsibility. Imagine if you didn’t speak up!
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This is certainly interesting. I don’t believe that I am in that kind of condition yet but I certainly makes me wonder. I did ask how my vasoreactive PH would affect me having surgery and their reply was to just have surgery at that hospital – their anesthesiologists would know how to take care of me. Well, not all my Doctors are on staff at this hospital and I don’t want to be running around finding new Doctors who wouldn’t know me. So…. this certainly could be an issue in the future.
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Omg that’s horrible but an unfortunate fact we all face or die. We have to speak up and not assume anything.????
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Colleen,
It scares me to think that there are medical professionals that actually don’t like when patients speak up and make you feel like you are doing something wrong. That is the worst part of it all is that I was made to feel like I went “against them” for some reason when in fact I was just looking out for my own well being and taking my anesthesia plan and care back to Boston where they are more trained to handle my conditions and medical necessity of anesthesia. -
Ally,
So true ! We need to use our voices or unfortunately it could cost us our life. Luckily I was alert an able to speak up. I pray for the ones that aren’t in a state to do that. -
Rebecca,
I would suggest asking your PH doctor to write up the correct anesthesia plan and protocol or for the team that does the RIGHT thing to write up something to give in case of emergencies or in case you desperately need something done at a hospital that is not where your care team is. If you can make sure that you are at the hospital that will care BEST for you, then do that! -
Brittany, a personal example of what you just said, is a bad experience my son had when he was on continuous IV Flolan. As you might be aware, it must never be stopped or else put a patient at risk of a serious PH crisis. During an emergency once my son had a doctor unfamiliar with him, PH and therefore, Flolan. I was always the one that went to the hospital with my son but of course the one time my husband had to take him, they got the doctor who insisted it would be ok if they took him off his pump for 15 minutes.
My son refused to let the doctor or nurses go near the pump and I was at work on the phone with his PH doctor asking if there was any way he could reach this doctor and explain that he could not be off of the Flolan for 5 minutes, let alone 15, which by the way would have turned out to be over an hour because of issues they were having doing the MRI.
His wonderful PH doctor reached this ER doctor. My husband said he returned to my son’s room, red in the face and said, “Well, I can tell you one thing we won’t be doing…we won’t be turning off your son’s Flolan pump.”
Can you imagine if my son and husband didn’t make the necessary fuss about not turning off the pump?
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Oh No, Brittany! I am so sorry that you went through this. This is a huge error and could easily become even a bigger issue for those who cannot self-advocate. I am so happy that did speak up and you know enough to know that you cannot have anesthesia.
I also cannot have sedation. Once, I had a procedure in my back, an injection and they rolled me back to prep me and said, we will sedate you, I had made a point to have that written all over my chart there since this was a local clinic, not my PH center. Still, no one read it, evidently. I am thankful that I, too could self-advocate and prevent this mistake.
I am sorry that you deal with this Brittany but happy that you will go to Boston to have it placed. Sending love and hugs your way.
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So true, Ally! It certainly can be a life or death situation. Certainly can be scary and frustrating, too say the least.
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I had sedation for the cardiac cath that definitively diagnosed my pah and had a major crisis as a result. Now I know sedation isn’t an option for me but it was a rough way to find out. Still didn’t have a pulmonologist at that point.
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I’m alarmed at all your stories. Living in a rural community in Ore., I feel like I have to educate every doc I deal with. My heart has been dancing lately, pvc’s, avc’s both atrial and ventricular tachycardia, so I’m paranoid about my upcoming right heart cath to check my progression. Our local hospital does rt heart caths, but not for ph and everything I’ve read says you want an experienced team & doc in the lab that are experienced in evaluation ph. I am my own best advocate, but get flack from family members & medical professionals. Too bad, I retired as a nurse and may not be the best patient, but I’m in charge.
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Jo-Ann, this is yet another scary case with could have ended up worse. I hope that now, you do have a PH team. I also would speak to them to be sure this is written all over your chart. Thankfully again, you are able to self-advocate. Keep doing this!
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Hi Denise,
I can u understand your concern about this living in a rural community. I also agree that although the do of can do RHC’s there, going to a hospital to have your RHC. With a PH team is best. I understand that not all can do this, but especially to diagnose and every so often in between, I would suggest this. I would do maybe in between Echoes at the local hospital if that works. Many PHers do this when living in rural areas.I also can understand getting ” flack” from family and medical staff. I think those who give us the ” flack” aren’t getting how detrimental those for us with PH. They often do not even grasp the reality that we are PH in some instances. I, too, worked in nursing so ill continue to self- advocate and speak up anytime have concerns. This is my body and my life.
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