Hello all. I survived the first cataract surgery, an experience that is turning out to have quite an interesting outcome that I’ve decided to journal here with you all. It falls so neatly under the topic we often discuss here, about what the health care deliver system has become now, both pro and con, and whether an ordinary consumer can be heard or not.
The good news is that already I can see much better with the right eye, just one day out. It was a very dense cataract, so I have stitches and won’t get full results for a week or so. But already it there is a remarkable difference. The other good news, (in some ways), was that the entire process, from walking in the door of that surgery center till I walked back out was two hours flat. I felt no pain in the eye during surgery, under the conscious sedation type anesthesia.
Yet it was a very difficult experience for me, personally, because I have a fairly serious PTSD type surgical phobia that I cannot control, based on traumatic previous experiences, which is why I put this all off till I was practically blind. And why I did everything in my power to clearly communicate this to the surgeon at my first visit, and to every person I have had to see since, in preparation for this surgery. This doctor convinced me that he not only understood and accepted this as valid, but would see to it I would have all the needed support and medication, to get through this.
Unfortunately, he did not seem to remember me yesterday, which was a long time after that appointment, and by the time he showed up, I was already pretty far gone into a stress reaction and not functioning well at all. PTSD anxiety reactions are horrible: it is an internal kind of hell no one else can see, and most do not believe exist, even when you try to tell them. I assume there were no visible notations on my records about this, because every step of the way in the lead up weeks, I had to explain it all from the start all over again, to whoever was involved, and asking me questions. I kept at it because I wanted to ward off another negative experience.
However the usual response of all of these very busy and efficient people was repetition of info I already had been given a dozen times about how easy this surgery was, how wonderful conscious sedation works, how I won’t feel a thing, and a many other reasons why I shouldn’t feel anxious at all. I did not feel successful in making it clear that this wasn’t the usual kind of pre op nervousness.
Anyone who has ever suffered from any kind of genuine anxiety disorder knows that when all people do is tell you why you shouldn’t feel that way, the inevitable outcome is of course, increased anxiety.
This was my first time through one of the new `surgery centers”. This is not a hospital, but a place set up just to do eye, ear, nose and throat surgeries, this one for a chain of eye clinics affiliated with a large corporation. It was like a lot like walking straight into a very large oscillating fan! The staff, while very pleasant and courteous, were moving at warp speed no matter what they were doing. Within a minute I had signed releases I couldn’t even see that probably insured that no matter what could possibly happen to me in there, I had been warned in advance and knew I was getting into! It would have taken me a considerble while to actually read all those papers, even if I could see.
I was disrobed and laid flat out with a bonnet on my head before I knew what hit me! Nurses were literally flying in and out of my cubical, with four sets of eye drops, IV’s to insert, all very cheerful and efficient, and totally engrossed with their equipment and assigned tasks. They all spoke very nicely to me but no one looked at me or seemed to have time to really hear my concerns; again, whatever I said was again apparently dismissed as normal pre surgical nervousness, as the response was the usual repeating of info and reassurances I’d gotten all along. Right about here was when I had to begin “retreating inward” in order to control the rising panic at not being heard and feeling having events spinning out of my control so rapidly.
They had whisked me away before my kids had arrived, and they did allow a few minutes for them to come in. By now I was stressed enough to begin leaking tears, against my will, and I hated to see them leave. The doctor stepped in for a few seconds and asked me if I had any questions for him, but was too late for me to be able to communicate effectively: (I was too busy working on staying in control of the emotions)
The came the really important person, the anesthesiologist, who I knew was the one with the power to grant me sufficient medication relief, or not, as he so saw fit. Unfortunately, he also spent most of his few minutes with me telling me why I ought not feel anxious.
That’s when I knew I was really on my own from there on. Somehow, with or without the help of extra calming medication that I may or may not get, I would have to find a way to keep from panicking and moving at the wrong time during this surgery.
They finally did give me some pre op medication in the IV that helped a lot, but only for a little while, then we zoomed off to the OR. The conscious sedation worked fine, for while. I did not feel any surgical pain and I really didn’t seem to “care” what was going on. I thought the worst was over.
But then came the terrible stomach cramping I experience whenever given morphine. (I was wearing a wrist band stating I had Morphine allergies. This is not a common side effect, but not an unheard of one either, and the pains are like those of an acute gall bladder attack, no joking matter, let me tell you.) I will need to find out what drug I was given, so I can add it to the list of drugs I just can’t take. This caused overall body tensing which set off back spasms and no longer was I able to “not care what was going on”: I was in such intense pain, and scared to death I’d move and wreck everything.
I knew I could not lay still much longer and said so, quite clearly. Doc said “Don’t move, we’re almost done.” I think he was done too in just a moment or so, but for me, it felt like a solid hour of agony and sheer panic.
But I made it. I didn’t move.
Here’s what I know. It would have taken SO little to have prevented me from having to go through this. All it would have taken was adequate communication from person to person along this very efficient delivery system about a very real potential complicating factor. A simple written order adequately communicated via my record to everyone there that day, including the anesthesiologist, that this patient suffers from PTSD /surgical phobia and will need enhanced pharmaceuticals would have done it. They would have had the info they needed in a form they could recognize as credible.
Instead, it seemed no one knew, no one had time to listen, and even if they had, once I am already in that stressed position, I am at my most vulnerable and am not able to communicate very effectively at all.
So, it’s over. I made it through without stroking out or moving at the wrong time, and the surgery looks to be successful, so why not let it go?
There are a couple of factors that won’t let me. One, I have to go though all of this again for the other eye on November 9. Although the temptation is there to settle for good vision in one eye, so as to avoid this experience again, I will not give into it. I really want both my eyes working. I can’t choose another place: this is the only one that I can afford on my special program.
The other factor is this. Over my long career in this profession as an RN, I have watched health care slowly be transformed from what it was when I was so proud to be part of it, back when it was still the healing arts, when everything was centered around excellent care and comfort of the whole patient first and foremost, to this assembly line form of health care delivery.
I am the first to be grateful for all the advances. I remember taking care of cataract patients when they had to lay in hospital beds for days, with their heads locked in place by sandbags. My negative experience yesterday takes NOTHING away from my gratitude for the progress that has made it possible for a simple surgery like this to restore my sight. It also does NOT decrease, in any way, my sincere appreciation for all the efforts everyone there DID make yesterday, to try to make it easier for me, in spite of their time constraints.
It is not the fault of the front line doctors and nurses that they have so little time to spend with patients anymore to hear and respond to concerns like mine. Just recently my own regular doctor expressed this too, how little time is allowed to them anymore, to actually spend with their patients. And I know personally and painfully, how it feels when ones hearts lies with meeting patients needs, but ones actions are ruled by a clock and performance expectations that seem geared to take you AWAY from them.
So that’s why I know I cannot let this just “go.” I received a call this morning, a routine call, from a nurse at the surgical center, checking on how I am doing. I asked her if she was open to some feedback, and she said yes. I relayed what I have written here to her and it was not easy for her to hear, I know. I give her credit for listening very well, and saying she would relay all of this and that someone would be getting back to me. I made sure she understood I intend this as constructive feedback that it was not in the nature of an angry complaint about their performance, but something I believe that can be used to everyone’s benefit.
I will see the surgeon this afternoon as planned, and will relay all of this to him as well, as objectively as I can, and hope he will be able to hear it as well. I will be asking all of them to work with me so that the next surgery on November 9th can turn out less difficult for me. I will also be prepared with specific ideas and suggestion of how this kind of thing could be easily avoided at no loss of efficiency or any extra cost to the system.
I know that raging against the dehumanization of my chosen profession does not work because I’ve been doing that for far too many years already. It just gets defensive responses and earns me more scars and retribution. Like all, I am dependent on this system, like it or not, and as I age, no doubt I’ll need it even more.
So I hope to be able to marshal together whatever communication skills it will take me to deal with those I have to deal with, in ways that just might make things better for me, not worse, and hopefully in the process, maybe help alter a few attitudes and mindsets a little bit. It’s not going to be easy climbing up over years of resentment, anger and bitterness I feel at all the unnecessary suffering I have watched due the dehumanization and privatization of health care. But hey, it’s a new challenge and I do love a challenge!
Just last month, I formally retired my license to practice nursing. Maybe now I am ready approach this from another direction, using my own current experiences as my small megaphone and do so from a calmer, hopefully more balance perspective.
There is no reason there cannot be cost effective health care that is ALSO humane.
It takes no more that a second to make genuine, meaningful eye contact or a comforting touch. It takes very little time, only willingness to really listen well with an honest intent to understand.
It would have actually have taken people around me yesterday much LESS time and energy to simply hear and accept my fears as valid, than they all spent trying to tell me why I shouldn’t have them at all !
Because if I had felt really heard, believed, and understood yesterday, I wouldn’t have had to go through any of the hard stuff I did. And they would still have been “on schedule.”
ONward. Stay tuned for the next installment. Hopefully it will be positive news.
PS: My big bag of Boo Hugs and good wishes that I took along really helped. Thanks again.
Not for me, but for all the doctors, nurses, aids and health care workers there are out there right now doing their level best to still treat people first, and profits second. They need all the kudos they can get and then some.
Scribe, I’m of two minds about your writing here:
First, I am glad you made it through the surgery! And I’m thankful that it went well and is already giving you some benefit, particularly given your difficulties.
The other issue, of course, is your very detailed ordeal. Many of us would consider any kind of eye surgery bad, (though this is a kind that is increasingly seen as safe, I know). It is very helpful to people who haven’t thought about it, to get all that detail about how each piece of an experience turns out to be more frightening, and less likely to insure that things go well for you both psychologically and physically. People who “said through” medical procedures have no idea – and medical assembly-line services clearly don’t have a clue, either.
All that detail is very valuable, and quite sobering: If you, a nurse, can’t get good treatment, who would, in a similar situation?
One thing I hope you will do, is send what you’ve written to your doctor. Hearing feedback is one thing, but seeing it in print is more permanent, less able to be ignored, I think.
Maybe we need to work to develop something like a doula system that some women have accompanying them through prenatal care and childbirth.
What I am realizing is this: many people now delivering health care grew up in the current business based,super efficient,impersonal system. They may have never experienced a truly patient centered model, like many of us remember so well. This would explain, in part, the often befuddled and defensive reaction I get when I refuse to accept what to me, is unaccceptable treatment. After all, if the system itself defines good care only as a sucessful surgery or a cure delivered as fast as “cost effecively” as possible, then in thier eyes, they really have done their job well. Also, if goood care is defined that narrowly, I actually did actually receive good care: My cataract IS gone and I AM already seeing better and it all got done in two hours.
And yes, definitely, when facing any stressful medical situation we each must find a “doula” or knowagable friend or suppport person to be with us, espceially when feeling stressed or vulnerable and needing to engage the system. When ill or scared we are the least able to speak well for ourselves or to ask needed questions,and remember what we were told. It is also not wise to trust that anything you communicate to any one provider WILL be communicated effectively to any others involved.
As for being a nurse, it has allowed me to be a better self advocate and advocate for others, but it has never brought me any kind of especially good care. In fact, it’s the opposite: I am seen as a threat to be watched out for, and am pre-judged by many according to the typical sterotype that nurses make the worst possible patients. Well,now, with silence, swift compliance considered the behavior or a “good patient”, this has become really true!
I just had my first day followup appoint this afternoon, and did relay all the above to my surgeon along with positive comments about my progress already. (It was only possible for me to do this because today I am upright,fully dressed, had a friend present, and am not on my way to surgery!) It was not an easy session. I had to work pretty hard to get a response that indicated any willingness to help keep this from reoccuring next time. He finally did agree to flag my chart about the anxiety issue, but declined to become involed in trying to determine which med I was given that caused the adverse reaction, saying that meds needed to be discussed with the anesthesiologist I’d see just before the next surgery. I said this was not an acceptable solution, as I am in no condition at that time to discuss this effectively in the few seconds I get to see him just prior to being rolled away and did not feel heard at all last time. He did agree then to speak with the next one in advance. He may, and he may forget by then. I know enough not to count on it.
My next step is to put all of this in writing with a copy to both the Doctor and the Surgery Center,with a list of what I know I need in order to get through the next one. This will include having a family member remain with me during the preparation period, which is when I see the doctor and anesthesiologist just before surgery. I will also make sure to tell them how pleased I am with the good outcome and the efficient competent care that led to it.
I find myself a little apprehensive now. I am “causing trouble”, and I hope I am not jeapordizing my chances of having that second surgery. I will see him again in a week for stitch removal.
Hi Patches! :o)
So glad that you’re experiencing good results with your sight. It must be wonderful to see clearly again! And I give you a lot of credit for finally managing your fear of surgery enough to go and get it done.
Pssst…I don’t know if I’ve ever told you this but you’re one of my personal heros :o) And it’s because of that that I want you to give me the address of the doctor and the anesthesiologist ;O) They have some splainin to do!
Seriously though. My Dad had similar fears about surgery and needeed a sedative before hand just to relax enough. I took him for shoulder surgery once and it was all he talked about on the way. Fortunately he didn’t have to suffer through what you’ve had to this time. I find it extremely irresponsible of your doctor to have not made a note of your concerns. It’s no small thing. Your emotional and pcycological well being and ease play directly into your physical ability to undergo stress and heal. I don’t care what kind of assembly line they’re dealing with. To me it’s kind of heartless. But that seems to be the problem with so much of our modern and increasingly sterile world.
One thing I do know though. If I were that doctor I doubt I’d want to tangle with you again! :o)
I agree with SS. It was irresponsible for the dr. to not put in your file a higher than average level of anxiety.
I’m so glad you conquered your fears and got through the surgery.
I got as far as the anethesiologist myself today before he decided that I was too sick to continue with the operation. So, my knee surgery was cancelled. Grrr. I also went to a large outpatient clinic. It was an interesting experience. You are sort of whisked from room to room and forced to sign lengthy contracts that essentially sell your soul to them. As soon as I became ill on Thurs., I called my dr. and let him know. I told the surgery center later that day as well. I told everyone once I arrived at the center too. But, it all came down to the anethesiologist and he didn’t feel comfortable about it. So, the whole operation was cancelled and all I can think about is how much that is going to cost me and the trouble I caused I every one.
I’m so glad that your sight is improving. Maybe you could insist on having a friend/family member come in with you to speak to the anesthesiologist next time.
Thanks for the update and the diary. It is showing me how important it is to speak up and be clear about what I need and want.
Sorry you are ill and had your surgery cancelled. It honestly ought not cost you anything, and I hope it doesn’t. Also, I am sure they are plenty busy enough to not be left with nothing to do!
And yes, I will indeed insist on having a family member present in the prep area next time, when I see the doc and the anesthesiologist.
<<I find it extremely irresponsible of your doctor to have not made a note of your concerns.<<
Well as I saw again today, clearly this is not part of the normal procedure. . He did not agree to "flag my chart" about the anxiety issue until he was directly asked to do so by my friend. This is, in my experience, not an uncommon thing to run into with specialists, whose interest (and sense of responsibility, all to often) seems to begin and end with the edges of whatever particular organ or body system they specialized in.
Family practice docs still look at the whole person, and many internists I know do too, as well as nurse practioners, but if they find anything potentially serious, guess what? They send you off to a specialist who knows more than they do, but is only interested in your affection portion. The age of specialization has done wonders to advance medicine, but at a very considerable cost in loss of coordinated "whole person" care. And at the very bottom of most specialists priority list is any emotional/psychological concerns or conditions a patient may have.
Thank all the gods for skilled surgeons and diagnosticians, for all they do so well, but it’s best not to expect them to have much interest in you except for the piece of you they are interested in. 🙂
I do so miss the days of coordinated care and having the chance to build a tusting relationship with ones primary care professionals.
You know, I actually did think of you that day, and Manny and some of my other bros here, and got through some tough moments by imagining having you all thundering into that place in a posse!! Made myself grin.
< hugs > I am glad to hear that you are well.
Thanks Boran. I am collecting up hugs for the next round…and your is in the bag!