I am a Faux Karen. All too often I contend with being considered “entitled, demanding, and prone to escalating minor disputes”.
I am discovering that it is very challenging to enjoy “the time I have left” when confronted with less than helpful “care” in a health care setting, when the possible outcome is my own death, or permanent brain damage.
Since dealing with the cataract prescription fiasco, being prescribed a drug containing a preservative that is predicted to kill me, I have gone into an induced state of denial. As I have been waiting for the situation to play out, waiting for more information, waiting for all the parties to have all the files. I have not allowed myself to think about this very dangerous situation I find myself in.
Yesterday I received a call from the surgeon’s office, to set up the date for the second cataract surgery. The call came from the person who co-ordinates the surgeries.
That is the person that I was previously told would call me with the name of the pill that would be given at the time of surgery. That call never came. There was no record of the former request, in fact this person told me yesterday that they didn’t know anything about a pill used at the time of surgery.
They also told me yesterday that they have no record of the information forwarded to them by the Patient Experience Specialist at the hospital where the surgery will be performed. Was it sent? Did they receive it? Did they trash it when it arrived? Does the person who called me not have access to all of the files?
To say the surgeon’s office structure is not equipped for my particular special needs is an understatement… despite the signs in the office saying “we take allergies seriously”. Seriously!
I explained that I am very frightened, that I want to research the drugs used before the surgery so that I could be relaxed for the surgery. The co-coordinator said they would talk to the surgeon today about my request to know what the pill was, and the manufacturer as different manufacturers use different preservatives. I asked her to call me back to let me know how it went, what the surgeon advised. Honestly, the way this is going, I do not expect to receive a call, I don’t expect that there will ever be any acknowledgement that I made the request for the information.
The co-coordinator informed me that my first eye surgery will be done by the surgeon, but that surgeon will not perform the surgery on the second eye because they will be away on maternity leave. The replacement surgeon has good reviews on their skills, mixed on bedside manner. I don’t care about the bedside manner, as long as they competently do what they need to do keep me alive, and do a good job on my eyes.
All surgery is a bit of a horror show for me, due to the issues of anaphylaxis, allergic to preservatives, which are non-medicinal ingredients in many drugs used to treat patients. On at least three occasions I’ve avoided death only because I’ve been conscious and very very assertive as I was about to be injected with a lethal dose of some drug or other with a dangerous preservative. And once I was injected with such a drug and waited on the dentist’s chair to die… which I obviously did not do. That was quite an experience, for everyone in the room. It was most intense for me though, the person who dies is always the one with the worst outcome in these kinds of situations.
Although I held hopes, the dentist felt it might not indicate that the allergy was gone, it just might not have been the normal amount of preservative in the shot. We were all quite relieved when I didn’t die. I was sent home with a preservative free syringe of epinephrine, just in case. Thankfully I didn’t need it.
Human error is very common in my experiences with the medical world. I have been successful in spotting it and dodging it for over 42 years, my luck could run out anytime.
I wear a medic alert bracelet, and not once has a medical person, nurse or doctor, looked at it. If I am not conscious to advocate for myself I pray they will have a look!
I can tell you that the majority of people who make the human errors do not respond in a positive manner when it is pointed out to them. I don’t have a choice, I must point it out to them.
I have plenty of drama in my life just trying to live out my God given life span.
I have done, and am doing, everything I can to try to ensure my safety.
Yesterday, and today, I have not managed to get back into the induced state of denial.
I still have weeks until the surgery, they may be my last. I am aiming at induced denial so that I will enjoy them as much as is possible.
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Quote
“It’s a dangerous business going out your front door.”
The Fellowship of the Ring
J. R. R. Tolkien
1892 – 1973
Hang in, sister. You’ve got a few more triumphs in you. Love, SP
Love you SP, always a bright light in my life!
Yep, sticky note on the forehead. And write on pieces of paper tape “X ALLERGY -ANAPHYLACTIC SHOCK” and put them around your arms just above the elbow and around each wrist–or anywhere else they’re likely to stick a needle in you.
For pills, I figure you have to be conscious to take them and can make the appropriate noises.
I don’t know how the Canadian system works. Here, if I were dealing with something like your allergy, I’d insist on a consult with the hospital/surgical center pharmacist beforehand to further document your allergy and your request for review of all medications and anesthetics.
If money weren’t tight, I’d encourage you to consult an attorney in advance, just so you could also get put in your record “XXX XXX is my attorney and will promptly pursue all remedies at law available if I am incorrectly given any drug containing X as a preservative.”
Hey, I can go over the top with the best of them. 😉
Great ideas Wendy!
For one surgery I wrote my allergy in permanent marker on my arm, just above the hand where the IV feed would go, took photos, and also verbally told anyone near me about the allergy. I told the anaesthetist when they wheeled me in, they said he knew all about it. Just as I was losing consciousness I heard them ask the doctor if he knew what the preservative was. I was surprised to awaken from that one! That surgery was decades ago.
The sticky is a great idea!
The cataract surgeon definitely mentioned a pill before surgery, but I cannot get any information about that pill. I think I will be able to go forward without the pill, I plan on refusing it without a manufacturer’s sheet that includes non-medicinal ingredients. If I can be given an anaesthetic I won’t need the pill. I am not nervous about the surgical procedure, just the medications.
The hospital will manage the injected anaesthetic, so they are the ones I have to deal with for that. I’ve contacted them, in writing, and have had positive interactions with the Patient Experience Specialist. The hospital does not yet have my file, so we are waiting for that process to be completed. The Chief of Anesthesiology has provided some information via the Specialist, and I will have a more detailed discussion with the pre-op team at the hospital before the surgery. The management at the hospital has acknowledged the information I sent and flagged my chart, which I think is a great start.
I want to give the hospital a chance to handle this well, so far they are great, but we are not through the process yet. I behooves me not to let down my guard.
I’ve thought about a lawyer, however this comes up so often that it would bankrupt me to use legal assistance every time I face this challenge with my allergy. I am documenting everything, taking photographs, etc. I tend not to be litigious, although if pushed I have gone there, represented myself, and winning, every time. So far I have not been pushed that far in regards to my anaphylaxis, close, but not quite.
My anaphylaxis is so rare that I doubt the cataract surgeon will ever bump into a case like mine again in their career. But if they do I think they will be sensitized, and approach it more effectively than they have in my case.
Sometimes it sucks to be unusual…. but sometimes it does not!
I talked to DH. He said he was not given a pill before cataract surgery. He said they don’t want anything in your stomach. They did put something in his IV to relax him and they give you a local anesthetic to numb the eye.
If this is true, there’s no point in talking to the surgeon, Maggie. As I said before, you need to talk to the anethetist/anesthesiologist.
DH hopes this will help your anxiety: Fortunately, you will be in a hospital, not a dentist’s chair. Hospitals are equipped for these kinds of allergic reactions.
Sending hugs.
Indeed the surgeon, Dr. XXX, also told me I needed to contact the hospital about medications. They have definitely passed responsibility to the hospital.
However, there is still some concern as the Chief of Anesthesiology at the hospital has stated in writing that “local anesthetic used would be up to Dr. XXX”.
Dr. XXX is not providing any information on what will be used, pill or local injection, no response to my requests.
Since Dr. XXX has already prescribed harmful medication with my anaphylaxis fully disclosed, in detail, to them, I have my concerns about how this is going to play out in real life. The brief response when I asked about an ingredient list during our appointment was “there are no preservatives in the pill”, end of story, that is all they felt I needed to know. Since Dr. XXX did not catch the allergen in the prescription, and actually stated my allergen was not in the prescription, I don’t trust that they will catch it in a pill or in a local injection.
I am concerned they will try to blow me off, provide me with nothing more than a “don’t worry about this because I say so” at the time of the surgery.
I find myself in a “monkey in the middle” game, where everyone seems to be more interested in covering their behinds than providing safe care.
I think different hospitals must have differing arrangements with the local surgeons.
This is DH’s comment. Your doctor says talk to the hospital. They are right, so far as it goes. The anesthesiologist is employed by the hospital and is the one who will be handling the drugs you are given.
Now from me. Maggie, I implore you. For your own safety, talk to the hospital and insist on speaking to the anesthesiologist. You have valid reason – as you know – to insist on this. Before the surgery, the anesthesiologist always comes to you and introduces themselves. Since they take their job seriously enough to introduce themselves, I would hope they would be willing to speak to you.
If it were me, I would talk to the anesthesiologist face-to-face. It’s easy to discount a faceless person on a telephone. Not as easy to discount a warm body telling you about their anaphylaxis.
Teri (and DH) thanks for the feedback, very much appreciated!
So far the hospital has been responsive to my queries. They won’t have my file for weeks yet, so I am waiting to further discuss things when they have all the information. I hope they will walk me through the entire procedure, who does what, and provide me with information on what is contained in the “standard anesthesia kits” the surgeon will use.
The Chief of Anesthesiology stated “the local anesthetic used would be up to Dr. XXX” so I am not convinced an anesthesist will be involved, but will have to find out.
So far the hospital has been interactive, and have responded to all of my questions as far as they can without my file from the surgeon. But I have only interacted with the Patient Experience Specialist directly. Communication with the surgeon, Dr. XXX, so far has been extremely disappointing.
If I have an opportunity to meet face to face with the person who will administer medication for the surgery, I will definitely take advantage of it.
I did a google search and apparently since (supposedly) only “eye-numbing drops” are used for the surgery the province does not require an anesthesiologist, per se. They may have, though, an anesthetist nurse or an assistant. Sadly, the answer also said, or no one at all.
When DH had his surgery, they actually injected a local into his eye, rather than using drops.
I hope you can get the answers and the support that you need.
The whole mess is sad Teri, and so unnecessary.
The whole experience has been off somehow. The appointment with the actual surgeon, I was advised, in a written sheet of instructions, to bring along another person to be present, as there was a lot of information to cover. Attila came in with me. The surgeon asked me why he was there, seemed to be offended that he was there. That is how we began.
So far things are not going well, but I hope for an upturn, while remaining very vigilante.
A constant danger you live with, Maggie, exacerbated at times like this. I’m sorry. I also will remember your vigilance and energy in dealing with it. You set a good example.
Thanks Kate, for your good wishes. I think the word exacerbated very apt! I admit that if there were a path of avoidance I would certainly take it, lol.
My biggest challenge is staying calm and logical as the natural human response of “fight or flight” is triggered by human errors. And subsequently triggered by what I experience as indifference from people I have no choice in needing to trust.
Yes, calm and logic are necessary when talking to the anesthesiologist. And bring any proof you can of your allergy.
Teri, as far as I know there is no “proof” to be had. I have had this allergy, diagnosed by an allergist, since the early 80s, no proof was offered. This has been confirmed by a second allergist decades later. I wear the medic alert bracelet, which no one looks at.
Interestingly, I purchased my medical records from the walk in clinic, for the years we did not have primary health care. The record clearly states my anaphylaxis for the first few years, then it mysteriously is deleted from the file, no longer exists. Maybe it is too hard to spell anaphylaxis, or the chemical names of my allergens.
I have NO trust in the medical machine, and that is totally justified, as it has failed me continuously for decades. I want to dot my i’s and cross my t’s every time I interact with the machine.
I feel very lucky to have our current GP, they don’t know everything, and they know they don’t know everything, and they are keen to know more! Always a pleasure to deal with an open mind.