If You Want Something Done Right Do It Yourself! If Only I Could! A Cautionary Tale of Medical Incompetence

G’day this is Mia, This is An update on this matter- As of a letter recieved from the Beth Israel hospital 2 weeks ago rather than deal with their ineptness I have been banned from all beth israel properties.

This is Ella (Mia’s better half)
As regular readers of this blog know and really anyone who is married to or with a disabled person for any length of time, as a way of alleviating some of Mia’s stress, I handle the logistics around things like making doctor’s appointments, follow up care, medical tests, medication prescriptions, insurance issues etc. We have always looked at it as a divide and concur sort of thing and well, as a daughter of immigrant parents I have made my way through these types of scenarios since the age of 12 and I’m good at it. Efficient, professional, resourceful and direct. In other words, I’m good at getting shit done.
I also know Mia. I know what her issues are, what scenarios are deal breakers and how best to insure that difficult, often virtually intolerable situations are made manageable. So when Mia’s Orthopedic Surgeon directed her to have an Arthogram MRI first we made it very clear that Mia has clinically diagnosed claustrophobia that has in the past made MRI’s not an option. Once Mia even caused over 100K in damage to a machine when she physically pulled herself out. We made this really clear to the doc and he seemed to get it. He said he didn’t tend to do these under anesthetic but if we knew of a place where it could be done that way then I was welcome to arrange it. Given that I had arranged a fully knocked out MRI just two years earlier I didn’t expect it to be a challenge.
Aside from the challenge of getting the referral written properly, then getting a copy of it from the doc, then getting the insurance company (Aetna) to acknowledge receipt and have them process it (just this process took countless calls to all parties involved at least 4 times each and a week of time). Once we finally had the approval I set out to find a facility to get it done. I called Beth Israel Hospital because we have dealt with them a lot and I knew that their facility was accessible and covered by the insurance. I spoke to Harold who was the manager of the radiology department. Told him everything that needed to be done sent him over the referral and he called back with an appointment time, location and confirmation that all of the criteria would be 100% met.
Fast-forward to the week of the procedure, when I called to just confirm everything. I was met with a receptionist who said they didn’t have Mia on the roster at all. Knowing better than to continue to push the receptionist, I called Harold who proceeded to tell me that he hadn’t finalized anything because Mia didn’t have her pre-procedure paperwork filled out. I informed him that of course she didn’t because no one asked me for anything. He faxes it over and I’m faced with very clear caps text saying that this pre authorization needed to be filled out by Mia’s PCP a full week prior to the procedure. I called Harold back and asked how he figured it would be possible to get back this paperwork to him a week before the procedure when we didn’t have a week from that very day. Somehow this quandary didn’t perplex him. After explaining why this would be challenging, he conceded to allowing us to bring it in 2 days prior to the MRI. Ok… another hoop to jump through, but hey I’m used to it.
Next, I called Mia’s PCP (primary care physician) and drop off the paperwork to her. I call Harold the next day to say that I would have the pre-procedure paperwork back to him the following day. Just before hanging up he say “oh you should know we called Ms. Vayners ortho.” Hmmm…. I asked why and he proceeded to tell me that their doctor didn’t think the Arthogram was necessary. My reply was honest, “that isn’t his decision to make,” I said and “I would appreciate it if you would call me before calling the doctor if you have any questions.” I ultimately learned that their doctor at Beth Israel didn’t feel the Arthogram was necessary because he didn’t think it would deliver the results the Ortho needed. Once I explained to his satisfaction that it was indeed needed, it was settled, the date was confirmed and I hung up the phone. I thought it was finally settled. I had jumped through enough hoops.
Until, Harold called back the next day saying that their doctor had reconsidered and that it would not be possible to administer the anesthetic and the contrast injection within the right times in order for the procedure to be done. I questioned him up hill and down dale as they say, and was faced with the need to now explain to Mia, whose birthday it was on this day, that everything we organized had fallen apart and that there was no way to have her completely out for the MRI.
This completely and utterly made her birthday an emotional mess. After much conversation and consideration and no less than 20 calls to everyone from the hospital to the ortho to the insurance company back and forth, it was decided that Mia would be prescribed heavy duty medication that she would take prior to the MRI so that she was virtually asleep while everything was happening. Ok…. Done. It was arranged.
Fast forward to today. We got to the office, having taken the medication as directed so that it was well and truly working by the time the procedure was to be underway. We were greeted by a receptionist/tech who first couldn’t find Mia in her system at all, then couldn’t find the referral, then once finding the referral realized that the appointment was scheduled simultaneously in two places (the hospital and the outpatient facility we were told to go to). A half hour of calls to her family chatting about her dinner that night while also directing us to go back to the front desk and do more paperwork. The disdain in her voice delivered the message that was; we were unduly interrupting her phone call with her family. Next Wendy, the Tech Manager greets us. She apologizes for everything and swears the rest of the experience would run smoothly.
Hoping that was true she shows Mia to a wheelchair accessible bathroom that wasn’t and ultimately into the waiting area where there was a buzz of activity. We were led into a room which we were soon told the Arthogram would be done. Now, originally we were simply told the Arthogram was the process of injecting the contrast into Mia’s system prior to the MRI itself, but instead we learned it was a procedure all on its own that entailed a claustrophobic person, once again to lay on a table confined. By this point, after half a dozen conversations about how this was all going to work and how badly this whole experience had already been, the doctor, nurse and tech came in and after yet more conversation and attempts at placating, Mia got on the table, the injection was done and the procedure completed.
By now, Mia had taken the SOMA (medication that was meant to knock her out) had been in her body an hour and half and nothing. During the Arthogram, Mia was talking to the doc who basically said that the reason for not going the anesthetic route was not out of any medical need as I was originally explain but some illogical logistical mess because it would simply be easier on them if she were awake. Basically they put it in too hard basket. Clearly no one neither understood nor cared about the needs of a claustrophobic patient. Mia was tired, stressed and rightfully angry but committed to getting this done.
We were promised that she would be next for the MRI and that once made our way to the room they would ready. Ten minutes later and no…Still waiting. Mia notices the sign saying that no wheelchairs were allowed in the MRI Room. Apparently Mia’s chair was not “MRI compatible” and although Wendy was not able to explain what that meant she was sure that they would have a MRI compatible chair for Mia to transfer to. Fine… A half hour later, Mia now 2 hours after having taken the meds is no closer to being in any way “out,” and after all the waiting and added aggravation of having to face one screw up after the other, at this point, was understandably not in a great state.
Finally it is decided that although no one could tell us how wide the machine was or whether Mia would even fit after all, they would wheel the table out, Mia would get on and the wheelchair would be a non-issue. We asked where the MRI compatible wheelchairs were that their boss had assured us would be ready for our use. The look on the techs face was as though we were speaking Martian. Half amused he asked “what chairs.” It turns out that their own manager had so little knowledge of her own department that she was inventing issues and equipment that didn’t exist.
Honestly folks, at this point the likelihood of getting this done was less and less hopeful. Sitting in a tiny room waiting now 40 minutes for the MRI room that was meant to be ready for us immediately, to now be ready, a new tech came in and said that Mia’s shoulders would indeed be touching the sides the machine and she would be in there for no less than 30 minutes AND she would need to be strapped down around the shoulders.
Low and behold, Mia is on the table, a clown car of people standing around not moving, not doing anything, waiting on instructions apparently… I tell them to get going and get the show on the road. Mia is fed into the MRI machine and her shoulders were indeed wedged at both ends and her face is mere inches from the top of the machine. Let’s just say, it was time to get out …. It was just hideous and awful and scary and pointless.
As a partner of a disabled person, a lot of you will understand, the last thing you want to do is put your loved one through unnecessary medical hell but you do it knowing or expecting that it is for a greater good, future care and well being. You dot your I’s and cross your t’s and make damn well sure that at minimum you have made it as easy as it could possibly be and that is what I did for 6 weeks leading up to today’s bullshit.
Today there was no greater good. Today there was nothing achieved but a huge amount of stress, anger and wasted time and a panic attack. Now we get to start over on Monday … hopefully this time the doctors and facility will be crystal clear that when you say someone is claustrophobic, clinically so, that you don’t bullshit them, give them some candy masked in RX and tell them they will be fine.

Author: disabledaccessdenied

I am a disabled woman who through no fault of my own has wheels under my ass. I rely on the decency and common sense of local, state and federal goverments, as well as the retail community to abide by the disabled access laws and provide adequate ramps, disabled toilets, and not use them as store rooms or broom closets. This blog exists to find the offenders and out them, inform them, and report them if necessary and shame them into doing the right thing when all else fails.

1 thought on “If You Want Something Done Right Do It Yourself! If Only I Could! A Cautionary Tale of Medical Incompetence”

  1. Oh Ella… How traumatic for Mia and for you. I also suffer from claustrophobia and, although not clinically diagnosed I have just a minute hint of how Mia would have felt and that would be enough to make me lose it. I hope all goes well on Monday for you both.

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