Treading Water; Fighting to Retain Function

Medicaid’s website disaster put many things behind schedule and just as I had feared one of them was my trip to Vanderbilt. Although my current GP did fill out the necessary paperwork this time it was Medicaid that dropped the … Continue reading

Emory Healthcare Denies Kidney Transplant to 2 Year Old Based on Father’s Parole Violation

The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.

Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.

What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family  was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.

Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path.  Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.

One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late

A local news team has covered the story. See this footage below;

At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.

 

Diagnosis is a Winding Road; Finally Getting Somewhere!

Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading

One Year Later Emory’s Poisoned Records Still Block Access To Care

The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological … Continue reading

GA Medical Board Fails To Take Disciplinary Action Against Doctors Involved in Abuse and Corporate Cover-up

It was no big surprise when I received the long, white envelope with the Georgia Composite Medical Board logo on it that the outcome was a bust. Georgia’s track record for disciplining doctors for infractions is especially bad compared to … Continue reading

In The Aftermath of Emory’s Wreakage; Still Sick and Essentially Untreated. What Now?

 

A photo by Matthew Wiebe. unsplash.com/photos/U5rMrSI7Pn4

Despite that my son’s surgery and his doctors’ dedication to providing him the best care giving me some hope that there are doctors out there who are kind, ethical, and want to go the extra mile for you, there was still one pesky problem that wouldn’t resolve itself spontaneously; that of the tainted medical records from Emory.

Although I’d tried to put it out of my mind, the very real danger that the libel contained in these records may continue to do damage to my reputation outside the offending system and thus prevent my receiving care soon enough to prevent dire consequences was and is a very real danger.

As I sat across from Dr. P. the new GP, a woman of East Indian descent (most likely second generation) who was young enough to be my daughter I fought through the horrible flu-like aching in my muscles, weakness, and feverishness to engage her on the topic of my referral to Vanderbilt after having left numerous messages with the office to obtain the current status of the process and to try to find out if, and when she’d fill out the necessary paperwork. I’d recently been advised from one of the receptionists on the phone to obtain 3 release of information forms; one addressed to Emory for her to receive, one for Vanderbilt, and another for something related to Piedmont’s records.

The disjointed and partial communication via several different office staff when I’d called in over the past few weeks was hard to decipher and some was contradictory, merely stating that as far as they understood I didn’t need a referral and that I could refer myself. Now after given my latest instructions for these 3 seperate release forms I wasn’t entirely sure which records they needed released and what the doctor would think, and then do after she read what was inside. I had decided I didn’t want to do anything hasty and wanted to bring a copy of my own and discuss with her what she thought would be relevant and what not necessary before releasing such bombshells into Piedmont’s system, nor to the out of town specialists. While the poisoned pills contained are complete lies and have no basis in truth the infectious and alarming nature of such coded language passed on from doctor to doctor can and does put my future health and even my life at risk each time a new doctor might read such derrogatory comments written under the guise of “medical opinion”.

As I sat in my wheelchair facing this new doctor I wondered why now it was suddenly so imperative to her that she have these records which contained so little of clinical use and yet had so much potential to destroy my future. What was once a mere suggestion was now presented to me as an ultimatum, and I don’t take well to ultimatums. If this was her idea of forming a good solid doctor/patient relationship and inspiring trust she had a very strange way of showing it.

A feeling of extreme aversion came over me and with it an anger at myself for being so weak as to be at all pressured by it. I really wanted to just say “No way! Forget it! You can do the tests that have been done all over again but you’re not using these records!” but then what if this time she really was going to follow through? It was a total crap-shoot as to whether this would get me to where I needed to go or whether this throw of the dice was going to lose me the farm. It was a no-win situation, and in my estimation, a bad risk either way.

rolling-the-dice

Now, even more ill than I was a few weeks ago I weighed my options and neither looked good. None of the other GPs I’d interviewed who seemed at all compatible were anywhere near writing the referral and one had wanted me to find yet another local neurologist and for him/her to be the one, tacking on God-knows-how-much more delay time onto my diagnostic process (and thus to my treatment).

Dr. P. waved the form from side to side in front of her. “You know” she prefaced, preparing for a fight with a rather aggressive offensive maneuver, “I don’t have to fill out this form.” Then testing the water further, “I could have said…Ya know what? No, I’m not filling this out…”

angry-female-doctor

“Oh yeah?” I thought internally? “Well guess what, miss smarty-pants…then what’s my incentive to stay here one moment longer?”, the words flooding my mind so close to the tongue I could taste them. But the lack of any real incentive for me was exactly her game plan and it was more stick than carrot. Behavioral conditioning 101; that may gain compliance from the patient in the short-term but at much greater cost than benefit to the relationship as a whole.  In some respects her approach was Machiavellian, yet Napoleonic in its delivery. “

…but I’m doing it because I care”, she finished. “That should show you something. You need to trust me” she pressed on. Somehow, actually it had just the opposite effect on me. The way I received her statement was more like the feeling one has when a person who has offended you apologizes and then immediately nullifies it with a narcissistic self-justification and the suggestion that it was you who made them do whatever wrong they’d done to you in the first place. At that moment I wasn’t sure which repulsed me more; her backhanded self-proclamation of benevolence, or my withering attempt to stand my ground.

Intellectually I knew that while not required by law, this was no extravegant favor she was extending outside her job description, but instead what any good GP should do for a patient (if it matters to her to deliver good care to her patients). Referrals and the paperwork that come with them are part and parcel of the routine work of a primary care physician being that they are charged with coordinating care across the various specialties that their patients need linkage to. However, her sense of her own power in this particular instance seemed to embolden her and at the same time shake my own self-confidence. I was back in that floundering zone again, the same one I’d been in the first time I’d met with Dr. V., and on that awful day in December when I was reduced to pleading for help at Emory’s ER, overcome by the uneasy feeling that I wasn’t “in Kansas anymore” but instead in an unfamiliar and quite scary place the parameters, and unwritten rules of which were near impossible to read nor comprehend. This is a place I don’t like, a brain-bending cause and effect that seems to make me lose all sense of time and space and send me down some weird rabbit hole. I grappled to regain my proprioception and perspective, losing my train of thought in my fluster to communicate.

your-word-is-your-bond

handshake

Had it been true compromise I could have lived with that but it wasn’t that at all. Had it come from a place of partnership, strength and dignity then it would had been compromise in the true sense, but this…this was not free choice but something else entirely. I felt disgusting and at the same time manipulated. As bad as it was that signing a release of the Emory records could ultimately mean curtains for me if it closed doors crucial to my survival, even worse than that was how it made me feel about myself. I knew it was far from an even trade but this inner caving and shutting down process just seemed automatic, almost robotic.

this-is-not-about-me

I know what Bernie Sanders would have done. He would have stood firm on his position no matter his opposition. Suddenly I felt like a complete wuss and then hated myself for it just as quickly. What does one do in such a tough position? I really don’t know. Maybe there’s no easy answer. It was another one of those “Which do you want to keep? Your arm or your leg?” dilemmas, or rather “your life? or your reputation?” Without your life you cannot have a reputation, but without a reputation life isn’t worth living. Furthermore it could end up worse than a trade-off. I might lose both in the end. It seemed I knew what I really wanted to do but felt unable to do it, and no amount of logically thinking it through would help.

I’m trying to put a period at the end of these awful, incorrect, unethical, and libelous medical records but now I’m expected to drag them along from doctor to doctor. How could that possibly help anything?

A photo by Tom Butler. unsplash.com/photos/YOQDokJipFg

I leaned forward in my chair, put my head in my hands and let out a pained grimace and groan, made one more attempt to make clear to her that such action might really cook my goose in the hands of the wrong doctor(s), and then the rest of my resolve deflated like a spent balloon. She claimed that her license was on the line if she were to for instance include Dr. Vs last doctors’ notes, and not her first (probably more hyperbole than truth), stating that if she included any of Dr. Vs neurological record she had to include it all. I found her reasoning very strange and illogical. No doctor I’ve ever met thought like that, not even Dr. H. at his worst. It more closely resembled Dr. Bs new locked down approach than any of the other doctors, but I’m not sure even he would have included material in a referral or entered it into Emory’s record if he thought in his heart of hearts that it might do more harm than good.

Therein lies the crux of the matter; to do no harm. The hippocratic oath was relevent when it was written and still is today. Although its wording has changed over the years the spirit of the message is very clear and unmistakable. 

A doctor must not do anything he or she understands will hurt their patient. PERIOD!

Like I’d told Dr. Ps nurse, releasing libelous material written by those who are essentially your enemies is tantamount to volunteering a past supervisor as a reference at a job interview who has nothing good to say about you. “Would you do that?” I’d asked her, to which she had to in all honesty say “no”.  

“Well, there you go!” I replied. “It’s the same principle!” The nurse looked back at me wide-eyed and dumbfounded knowing I had a very good point.

“Don’t you realize that every time I have to show these records to a new doctor I’m re-traumatized? Do you realize the gravity of the risk involved, and how upsetting that is? This is not an irrational fear, but very real” I told Dr. P.

“Yes, I know” the doctor responded, “There is the doctor/patient relationship but it comes down to choosing between what’s best for you and what’s best for me and I can’t do something that could place my license in jeapardy”she said. Although I’m sure her assertion that her license was at stake was a gross exaggeration, therein lay the ugly truth with all lame excuses stripped away; defensive medicine!

A photo by Jeff Sheldon. unsplash.com/photos/o6Y9E-DdG6w

Realistically I knew that at least here in the state of Georgia nobody and I mean nobody is out to take doctors’ medical licenses (even in those instances in which they really should be revoked) so I know that state regulators are too busy to care about what parts of a patients’ medical record doctors are pulling to send to specialists and whether or not a doctor charts a patients’ symptoms. I wasn’t suggesting she break any laws but if in fact there is any truth at all to what she’s saying regarding this prohibition it is probably such small stuff that nobody would bat an eyelash, much less raise a major issue over it.

“My role is to look through and determine what’s relevant and what isn’t, and your role is to tell me your symptoms” said Dr. P. This, just after she’d told me that she thought it would be illegal for her to chart my symptoms since she could not verify them with hard proof, so then wouldn’t it be a waste of time for me to tell her symptoms if they hold no value in the chart? I went on to say that in many respects Dysautonomia is a clinical diagnosis anyhow, “and besides”, I replied, “how do you really prove near syncope and many of the other symptoms?” (short of completely passing out cold in her office at the appropriate appointment time). It was another impossible expectation, a bar that could never be met in the real world.

The look on her face told me that I was making valid points she could not dispute.

“It can take 8 years for a patient to obtain an official Dysautonomia diagnosis, precisely because these kinds of constraints make it next to impossible to diagnose anyone and everything’s so strict nobody wants to be the one to call it, and here in Georgia they don’t have the facilities for the few specialized tests that do exist, so what are you going to do? They could do a tilt table test but that won’t do much good unless it’s classic POTS (which I don’t think mine is). All you can do really is go on what the patient tells you.”

Dr. P. nodded in agreement. “I know.”

“I’m just so exhausted, I’ve been suffering alone with this already for at least 7 months, and then to add insult to injury it’s embarrassing to feel as though I owe each new doctor an explanation because of those people who took it upon themselves to sabotage my chart!”

“You don’t owe me an explanation. I believe you” she slipped in almost as an aside in the midst of our fast-moving conversation, her intonation lacking quite enough passion to be fully credible. I think I would have breathed a sigh of relief had I been convinced she meant it, but her painstaking caution throughout the office visit, and hesitancy to fill out the form until now was what gave me pause. The ER doctor in December told me that too, and then I found out she was only telling me those things to get some sort of compliance out of me; sort of a version of “You can catch more flies with honey than with vinegar”.

last-time-i-trusted-you

I kept looking for signs of the real reassurance I needed from Dr. P. yet it seemed that just when the conversation veered toward a meeting of the minds it whipped away like a boomerang and I was once again grappling to obtain some semblance of unity that conveyed that we were truly in this together in amongst all this chaos on top of my muscles aching unbearably, the severe fatigue, the weakness, the low-grade temp doing a slow and steady burn that was documented that day by the nurse, the histamine reaction that was assaulting my sinuses, its accompanying systemic inflamatory response, and the awareness all the while that I was being expected to throw myself onto a live grenade; to essentially kill myself in order to save myself. Odd dichotomy there!

justice-meme

She was pushing the trust thing pretty hard, approaching it more like a command than an invitation and it was precisely that method which made trust not possible. I told her that I couldn’t just snap my fingers and suddenly trust her, especially when she is insisting I do something I feel strongly is detrimental to me and could seal my fate and that after what has happened to me it will be a long time before I can trust any doctor. Trust cannot be a command nor an obligation I owe her as payment for something she does on my behalf in the course of performing her job. I’m a long way from convinced that she truly hears me and respects what I need, and pulling rank on me is not the way to get me to trust her. She has to earn my trust. “It’s a process” she said of the road from here to Vanderbilt. “You just need to have patience.”

“For how long?” I thought. It’s late and I’m not getting any  better overall. Yes my symptoms wax and wan and different systems of the body switch on and off like a flickering lightbulb and alternate, but the truth is that my baseline is worse, and this “process” cannot be open-ended if I’m to have a good or even fair prognosis. I know that and I’m sure any medical professional worth their salt understands the concept of early detection and treatment and its impact on outcome.

can-i-trust-you

When I see things working out in my testing and treatment, that she’s truly behind me 100%,  and when I feel that our words are not merely whizzing past one another’s ears then and only then will I trust her or any other doctor, for that matter. The office visit ended like it did the previous time with my telling her what I needed to be reassured, and her telling me in one form or another she couldn’t give me that, and then her saying “I feel like we’re going round and round.” Well yes, it would feel that way because for the most part I think our priorities and beliefs about our roles are very fundamentally different. The distinction between where she sits and where I sit is that she can walk away from what’s happening in my body…I can’t. I’m the one with the most to lose if things aren’t handled correctly from here on out. I’ve got it all on the line. She doesn’t.

A photo by Milada Vigerova. unsplash.com/photos/kT0tsYZ2YE0

Maybe this is the closest I can get right now to a match from those local doctors available to choose from after my extensive search of the metro-Atlanta area, but I really question whether this is going to work out in the long-term. I hope I won’t come to regret doing what she asked before I left the office that day. I’m still not really OK with it.

trust

I’m now in the process of filling out my section of the Vanderbilt form and in addition will fax her my BP stats from my November 2015 Piedmont hospitalization. Only time will tell what happens next.

A photo by Benjamin Combs. unsplash.com/photos/5L4XAgMSno0

Then the question still remains as to whether the whole thing actually gets submitted once I fax it back to her office and whether I’ll be accepted, and that’s still just the beginning towards coming home with a firm diagnosis.

Update on Seizure Surgery; Does He Or Doesn’t He?

Quinn and Carmella face to face

Tuesday was a nail-biter with lots of buzz about collecting data and analyzing it with a fine-toothed comb. 5 or 6 Doctors and technicians filed into Quinn’s hospital room. Since the day before the mood was  guarded, as the big concern was that during brain mapping that they’d find the area with the D-Net too close to the speech center of the brain and if that turned out to be the case it would be deemed too risky to attempt with the possibility that they could accidentally wipe out his ability to speak (and/or possibly to comprehend others’ speech).

Doctors in rounds

Some were already scaling back their hopes, including his step-grandmother who has been a little leery about the whole idea of his going under the knife (well, laser, actually) from the beginning although she managed to keep that thinly veiled from Quinn, just dropping subtle and some not-so-subtle hints that she thought he should accept something less than a full cure. Just the day before some of the doctors began talking about other options and I could tell that it was swaying my son’s confidence. They discussed a neural pacemaker (which as it turned out would require alot of maintenence including uploading data regularly), and a few other possibilities which would involve some further monitoring to get an even more precise idea of all the tumor’s parameters.

The one big unanswered question was how deep the lesion goes, and there were not sufficient electrodes implanted to check it from all angles, but that would not be possible to arranage during this hospitalization and it could take several months to a year before they could even get to the point that they could determine the exact dimensions and how the brain-matter in the very close vicinity functions.

Epilepsy electrical activity

My son has been losing further brain function the longer his seizures are left to their own devices, and it’s no longer just a matter of inconvenience to him such as in his being unsafe to drive, but in recent years he has actually suffered increasing problems in certain cognitive areas. He just doesn’t think as well nor is he as equipped to care for himself as the average guy his same age, and often seems a little lost when trying to describe something to another person, and it can sometimes blunt his emotional reaction as well.

I knew that at this stage that medications aren’t stopping the damage to his brain nor are they adequately reducing the number of seizures enough so that the damage would not progress, so this has to work in order for him to have a chance out there in everyday life. The atmosphere yesterday morning before the mapping was thick with tension and uncertainty and though nobody came right out and said it, it was more what they didn’t say that made me uneasy. He’d already discussed other options with his doctors previously and none really gave much hope of adequate seizure control, so he came in here hoping for the new technique which would have the best success rate and the most permanent and safe results. Despite the deflated mood that was developing amongst the others I remained resolute that where there’s a will there’s a way.

Inspired Woman

As soon as he’d told me this new technique was available I felt that he could benefit from this and that the right doctor could make it a big success and I have never waivered from that philosophy. Dr. G. (according to Quinn’s general Neurologist) is one of the top Neurosurgeons in the world, and the minute I met him I felt confident he could do the job and do it right.

Doctor who looks like Dr. Gross

Success in treatment is a winning combination of factors on the doctor’s part; the skill, the will, and the ability to think creatively, and I knew that this guy had it. Sometimes you can just tell. Then the other half is the body’s ability to surprise us all. I encouraged Quinn not to give up hope yet. There was still the brain mapping. Nobody but his own brain at this point knew the outcome that was about to reveal itself.

Around 1:57 PM Tuesday several doctors and EEG Techs entered his room and introduced themselves.

Happy Doctors

They seemed a bit more upbeat than the group who had been in the previous day, and one of them (whom I am pretty sure was an Aspie and had a movement disorder) seemed to know what I was dealing with as his mother more than the rest.

The team began the mapping, testing one electrode at a time with a process involving delivery anywhere from 1-8 millihertz of electricity to a specific area of the brain. If he were to be deemed a candidate for the surgery there would be no or little interference with his speech as he was directed to identify objects  and famous people and to read short sentences. If on the otherhand they discovered that stimulation of certain areas caused speech or comprehension to cease entirely then that would be of concern, indicating that these vital areas would be considered too close to the tumor which needed to be removed for surgery to be safely performed.

All waited with baited breath as the young blonde woman with her hair in a poneytail and what appeared to be about 1 Ct. diamond earrings (or CZs; I’m not sure) had her finger on the red button attached to a black box which delivereed pulsed electricity to a designated electrode. It made a ticking noise when pressed and Quinn was asked to repeat the sequence of instructions over and over as each electrode was tested.

Doctors using digital tablet in meeting

Communication between the members of the team consisted of a number of fingers held up and and coordinates denoting particular electrodes and voltage. At first my son felt nothing or mild to moderate euphoria, but as time went on and they tested other parts of the brain he became violently nauseated and threw up several times. That was enough to send doctors and techs scattering, but after a few minutes he collected himself and resumed the procedure. It is quite possible that they hit something that tripped off his Autonomic Nervous System. It was nothing dangerous at that low a voltage, but it was scary nonetheless seeing him react so suddenly. The Vancomycin they’ve been giving him to prevent infection makes him nauseated as it is on and off, but there was no doubt that one of the stimulations triggered it this time…and very strongly!

A few other areas that were tested made him light-headed. The team paused in order to let his brain settle down and resumed where they left off.

Dizziness

As the mapping continued I could sense the exitement in the room growing and the clouds of doubt lifting.

Looking Up After Fainting

One tall young man with dark wavy hair who was watchig the brainwaves on the monitor burst out at one point and exclaimed “This is incredible!” There was alot of nodding and thumbs up all around and I was pretty sure that meant it was a go! The team could barely conceal their excitement. Things were proceeding much better than predicted.

Group thumbs up

Next they tested an area that ventured into the visual area (I believe the visual cortex?) He noticed just a small area of vision that was fuzzy like an old fashioned TV going on the fritz, but it was a very small area restricted to the top of his visual field.

At the end one of the main doctors in charge of the mapping, a neatly choiffed and quick-whitted guy with GQ good looks asking him the questions explained to us that Quinn did very well and that it was encouraging that they ran into no problems with the area involved in speech or comprehension.

GQ Type Doctor

There were only one or two instances in which he had to search for a word, but other than that he zipped through it without hesitation. Thankfully the surgery was still on the table!

After this team left, the main Neurosurgeon Dr. G. came in wearing street clothes and in a very down-to-earth and personable way sat in a chair beside Quinn’s bed and began duscussing with us that he though Quinn would be right for the surgery. I could tell he wanted to make a way for this to happen and with the new data from the mapping his confidence had returned.

He recommended ablation with higher electrical current (possibly in addition to laser, but would think over the logistics that night when he got home). It was clear that the wheels were turning again and faith was renewed. Dr. G. was a man inspired to change lives for the better.

surgeon

His fondness of Quinn was evident and it renewed my own faith that there are still some doctors out there who really do care and won’t leave you holding the bag when challenges present themselves, doctors who want treatment for the patient as much as the patient does. This is how all doctors should be and the right reason to work in the field of medicine. Quinn and I looked at each other and there really was no question that he should go for it.

Tonight (Wednesday, August 31st) at about 6: 10 PM when I had to leave because my transportation had been prearranged he waited in the que in pre-op for about 2 hours and then went into surgery around 8:00 PM after. I hated not being able to be there both before and after and had hoped to get a live report from the doctor when the surgery was completed. His step-Grandmother was able to go over there after I left, but Quinn and I have a special bond, even greater than many parents and children because he was sick as a baby and I saw him through several surgeries on similar tissue in his trachea.

For that first year he needed lots of special care and we were pretty much attached at the hip. He went everywhere with me and I rarely hired a babysitter because I didn’t feel comfortable leaving him with anyone else even for short periods of time.

mother holding baby's hand

I have always known when something’s happened to him such as an injury or accident or when he’s had a particularly bad seizure day intuitively even when he’s been geographically miles away.

Luckily it didn’t take long tonight to be picked up and the handicap transport vehicle got me home pretty quickly. I prepared some crispy hashbrowns and ate those with ketchup and while they were frying the phone rang. It was Quinn’s step Grandmother to say he’d just gone into surgery. She was waiting in the same waitingroom we’d waited in the first day when he’d had the electrodes implanted.

Apparently they are going to put him in another room when he’s out of surgery, so she had to take all his belongings out of there and keep them with her until they know where they’re going to put him.

He may get to go home tomorrow but I can’t imagine he would feel up to it that soon even though this surgery is less invasive than the open craniotomy style that they used to do most often. Judging by how much pain he’s had I really think that a discharge the day after would be overly optimistic.

Road

It will be exciting to see the outcome; whether the surgery stops his seizures entirely. I know he really wants to be able to drive again without risking an accident. He’s had several in the past that completely totalled his cars and since then has been greatly limited in his ability to go where he needs to go, as the bus system in Athens is not great and most buses run no more than once an hour. His girlfriend’s car was having numerous problems and then hit a deer and was completely destroyed. She has not obtained another one since.

Service between Athens and Atlanta is not accessible by public transportation so when nobody can give him a ride he has had to take a commercial bus which operates regionally (sort of like Greyhound) which is more expensive than public transportation would be had it been connected.

Last year he wasn’t able to get here around the holidays or at any other time. The only exception was when he had the external seizure monitoring earlier that year and I came out to see him for that during the few days he was in the hospital.

surgery

I hope this surgery opens up many doors for him and that he will be able to drive again. It is likely to be at least 6 months before we know for sure if it’s done the trick, but there is a very good chance he may be seizure-free, and if it doesn’t rectify all of it then he has the option to come back and have it refined. I know that if he had not had this surgery chances are that he would continue to decline cognitively which would add to the limitations he already has. It came through just in time. He called me around 1:30 AM once the surgery was finished and except for some soreness in the areas where the electrodes were he’s feeling pretty good. So far it looks as though no collateral damage resulted. Time will tell whether all the seizures are gone forever. Thanks to all the dedicated men and women who made this a reality!

This is for you, Quinn, here’s to a bright future. I just know great times are ahead. 🙂 I’m proud of you for hanging in there even during the times you were in pain, persisting despite the nausea, in spite of the fear of the unknown to see this through.

 

Seizure Surgery Can Give Patients Their Life Back

Epilepsy

I haven’t spoken much on this blog about my son and his situation (for obvious reasons) but I think now is as good a time as any to share the miracle that he may very soon be receiving due to advances in neurosurgical technique. This is a teachable moment that I  believe will help those who do not understand to develop a more empathetic perspective and give hope to those, who like Quinn live with seizures that impact and impair their functioning every day of their lives.

First, I want to say that the individuals involved work for Emory, but they are their own entity in and of themselves as medical professionals, and without individuals who are willing to work on behalf of the patient no corporation can survive in the long-term.

The ultimate success of a procedure, any procedure, compliments of medical science in large part depends on the dedication and skill of those on the front lines who are carrying out the technique. This is why I always make the distinction between doctors at Emory and the corporation; Emory because there is a difference.

Clinic Buildings

What makes up a good department is good people and the doctors working within the seizure clinic and seizure inpatient unit have been very good. So far I have found them and Radiology to be the best departments I have encountered as of yet. Today it has been 6 days since doctors implanted about 10 depth electrodes in my son’s brain and he is without a boubt feeling the effects of having a bunch of holes drilled in his skull and foreign objects jabbed into his gey matter, sleeping as much as he can to cope with the headache this causes, and not feeling much like eating due to the pain, but the doctors say that so far it is looking like he is a good candidate for the surgery which could return him to total ability again.

Now 32 and first diagnosed at arounf 14 years of age he has lived with a constant cloud above his head, waiting for the other shoe to drop; never knowing when the next seizure might come and throw off whatever he’s doing. For those who don’t know Quinn; he is probably the most generous and loving person you are ever going to meet. He has an innocence and purity about him that is often long crushed in others by the time they reach adulthood. He would give you the shirt off his back if you needed it and there have been times when he took personal risk to take odd jobs he really wasn’t safe to do so that he could support he and his girlfriend when she was out of work.

When he graduated from high school he tried a number of work settings and often got very good reports from his supervisors, especially those jobs involving customer service and sales. He was often viewed as one of the top sales people they had, but when his seizures eventually reared their ugly heads those same employers lost respect for him and either implied he was faking or they treated him as though he shouldn’t need accommodations for them and ultimately fired him.

There was the time he had a Grand Mal in a factory setting and sprayed adhesive from the automated hose he was using all over the floor, the time he stopped speaking when a lade behind the fish counter at a local grocery store was asking him a question and he could do nothing but stare back at her as she screamed and berated him for his inability to respond. Once he came out of it and regained his speech function he tried to explain it to his boss, who eyed him skeptically and told his that nevertheless this was unacceptable, leaving him a catch-22.

There have been many employers and many scenarios, somethimes he’d have to take the whole day off after waking with an especially brutal Grand Mal or a serious of Complex Partials because of residual disorientation. Unfortunately most employers don’t really get it that this is a valuable employee so one should nurture and accommodate because when he’s on he’s fantastic as an employee, a model one in fact! After many such experiences he finally had to face the fact that this wasn’t working and he had to apply for Social Security Disability.

Quinn-the day after Christmas 2008

Quinn knew that it would require that he re-enter the workforce on a higher level than the entry level he’d been used to working before he could be assured of the respect he deserved in the workplace, so after some brainstorming he decided to enter the Associates Degree Program in Computer Technology at Athens Tech. There were transportation hurdles to overcome because in Athens, GA. where he lives the public bus system is not great and he often had to walk long distances to get to and from schook in-between, but he made it and earned his Associates Degree! Now his dream is to go further and get at least his Bachelors at Southern Polytechnic (which is known for its quality in education in the computer sciences).

Quinn Hugging Carmella

For most of his adult life he has been hindered from living a fully functioning life and was told his condition (referred to as a D-Net; a benign brain tumor made up of excess neural tissue) was inoperable.

He began to believe he’d have to just live with it but then back in June we got word from his doctor (Dr. E.) that there was a new laser surgery technique available that had a higher success rate and lower risk than the traditional re-section surgery which has been Gold standard in the past. Since then he has undergone all sorts of testing (imaging and monitoring) and had his case presented before a committee to determine whether or not he would qualify.

Clinic Building

Until recently Emory referred most patients considering seizure surgery to Augusta. For many years it was the foremost seizure surgery and monitoring center in the state.  I know in recent years they’ve suffered budget cuts, so that could account for why there have been more neurosurgeons coming here to practice.

young-doctor-stumped

Now with depth electrodes in place (a surgery that in and of itseld took about 5 hours) his next step is for them to test the functioning of various brain areas (called Brain Mapping). This involves hooking him up to a machine to see the resulting brain waves as he carries out certain functions (for instance they may ask him to prounce or spell a word, having him calculate simple math, etc, and see what his brain does in response. As we speak we are waiting for the doctor involved in doing this process to arrive and the nurse told me that he may come in either today or tomorrow depending on his schedule. They moved Quinn to a special room yesterday in preparation with certain hook-ups for the added machinery this requires. Now we are just waiting for some word on the doctor’s arrival.

Quinn with head bandaged after depth electrode placement

My assistant and I arrived around 11:00 AM and there was a CNA with the hospital present from earlier this morning. Usually they leave once myself or another relative is in the room as we will be here for awhile. Quinn was in pain and not feeling much like talking but she was going on about some toddlers who were on the news the night before who had climbed the fence and “escaped”. I’m sure although it was somewhat interesting my son wished she would be quiet, as I know how it is when your head is really killing you. Sound can be bothersome, especially after an assault on the brain such as surgery. Yesterday the light coming through the window was hurting his eyes and his head and so I had a tech put a blanket over the blinds and that has helped alot.

I had my “ancient Chinese secret” from a guardian angel in this morning’s coffee and I am grateful for that over the past few weeks given that my condition is still not being treated and this is the only way I have been able to get through the long hours at the hospital with my son. I noticed more stamina and longer stretches between my pain since yesterday. I need to be sure and order more as soon as I can afford it.

Once my son’s brain mapping is complete and they know exactly the parameteers of his seizures and where vital brain functions are located structurally (what areas to avoid) they will have all the data they need to be sure it goes safely!

There’s just one more step after this is complete and that is for the whole group of doctors to agree on his getting the laser surgery. I know Dr. E (his General Neurologist) and Dr. G. (his main Neurosurgeon) are solidly behind his getting it, but apparently they all have to be on board with it. (I’m not even sure how many are involved total, but there are probably 5 or more).

They’ve all agreed so far that as far as getting the required number of seizures on tape he has met that criteria. Now comes the home stretch. If he can get through these last few preliminaries he will be on his way to the possibility of a total cure! This happens in only a small sub-set of patients and the best candidates are those whose seizures are only coming from one spot (such is in his case the tumor).

This is the best case scenario because it is very likely to get rid of all the seizures because they know which piece of tissue to remove and thus eliminate the problem. In Quinn’s case the doctors believe that his Grand Mals are a result of the Complex Partial Seizures, which is another encouraging thing because curing one will cure both types in one! Here he is with head bandaged like turbin. Beneath that is a mass of wires which thread into bolts in his head, concentrated on the left side of his head where the lesion is located.

Quinn with head bandaged after depth electrode placement- image 2

Apparently the D-Net is pretty much the same thing as a hemangioma like Quinn had in his trachea as a baby, and I have on my spine (according to my spinal scan results). This excess tissue with excess vasculature can be genetic and usually is, despite Dr. H’s poo-pooing of the impact genetics might play in some of these medical conditions. It’s close to 2:30 PM and still no word about when the mapping will be taking place. We could hear something on the spur of the moment. Fingers crossed that this next part goes smoothly and that he can move on to have the surgery on Wednesday or Thursday.

A Heavy Truth; Don’t Want To Be Here

Hope

Where do I go from here? I honestly don’t know. Over the past few weeks there has been an inner struggle between gravity and momentum, and unfortunately gravity seems to be winning the fight. Hope seems to be fading as one barrier after another delays any forward movement and despite my best efforts I am losing more of my abilities. I decided I would attempt some new jewelry techniques that I thought would be easier for my fine motor functions, but now it seems as if something is going on cognitively as well as I am failing to understand how to translate what I see someone else doing on video into doing it myself, but after about 5 hours I found myself unable to even complete the first row of kumihimo beaded stitches. Sweating profusely from the energy used just to begin this task had me overheating like an old car in the dead of summer. Everything  I attempt to do just seems inordinately hard and I feel as though I have to do these things but can’t no matter how much I have to. That is a terrible double-bind to be in and a scary place to find onesself and for the most part people don’t understand. I’m abundantly aware that sufficient supports aren’t in place and I’m floundering to stay afloat but sinking nonetheless.

I still don’t have any word of the referral to Vanderbilt, and obtaining the right specialists to put all the pieces together and help come up with a viable treatment plan seems to be a million miles away. I guess if you have some unusual condition(s) you really need to have lots of money because getting to the bottom of it requires travel and seeing the small handfull of doctors who really care if you get or feel any better (and often those don’t accept insurance). But then again, it seems they couldn’t care that much if they don’t accept insurance. Medicine has become more about business than helping others and that’s probably the crux of the problem and why the long lines of patients waiting for something to turn around in a positive direction leaving trails of broken dreams dashed upon the rocks.

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The sheer logistics alone are prohibitive of getting the care I need for my various medical conditions and on top of that why would these new doctors care if I get anywhere in my treatment or not? They don’t know me nor do they have any attachment to me, nor I to them. The whole process is awkward and disjointed and it’s frankly not working.

Doctor giving bad news

I’m up against Mount Everest here and it just seems insurmountable for one woman alone to tackle. I’m seriously running out of steam and I ask how in the hell is any of this in my best interest? I’m no longer at Emory and have been hoping against hope that “when one door closes another door opens” but I just don’t see it happening. As time goes on I just feel I don’t want to be here. It’s not that I want to kill myself, but more a matter of feeling as though I’m ready to go now, that my time here is over, that my body no longer is of any benefit to myself or to others and I’m not happy on this earth any longer.

As much as I wanted to write something inspiring I can’t seem to think of anything and besides it wouldn’t be the truth at this point. It’s become increasingly hard to keep bloggong so in order not to stop I’m just going ahead and writing what comes out without censoring it.

Right now it would be entirely OK with me if I didn’t wake up tomorrow. Tomorrow, and tomorrow, and tomorrow….That’s the whole problem when you really think about it. It begins to seem as though tomorrow never comes.

Four Leaf Clover

Tomorrow my son goes in to have a procedure to have internal electrodes implanted in his brain to obtain more precise monitoring in preparation for surgery. Although this is encouraging, I had hoped that by the time he was at this stage that I’d have seen a number of specialists and been well on my way with my treatment so I could be more help to him. That was the plan. Now I’ll be lucky if I can manage to stay with him a few hours, as my health just isn’t allowing me to be up for long periods.

I woke early this morning with hot and cold spells. I’m trying a new cannabis oil product and at first the dose may have been too much because it was having anesthesia-like side effects although it did cut out the hot and cold spells. I had to reduce it by about half and though I no longer have the anesthesia-like symptoms the hot and cold spells have come back.

I Just Want It To End jpg

It’s not until October that I see the Endocrinologist and maybe she will find out something useful, but the hair-loss is beginning to really get to me. I’ve lost about 60% of my hair volume now. This morning I awoke with an ache in my gut (after waking up about 5 times with sweating and cold spells). This is becoming too much. The daily grind of it is just becoming more than I can tolerate.

Safety for People with Autism and Other Hidden Disabilities

Red Medical Cross Picture with White Medical Symbols Inside It

Attribution given;  <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>

I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.  

Meltdown

I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.

In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.

Closeup of a business man with his hands behind his back and fin

Closeup of a business man with his hands behind his back and fingers crossed. Torso and hands only, man is unrecognizable.

It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.

Burning Up

In another dream  I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.

House at Edge of Cliff

Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.

In addition to the element of danger in these dreams there is alot of uncertainty.

Out-On-A-Limb-450x322

All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,

Glowing brain

and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.

This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.

Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.

Safety First Life Preserver

1) Wear a medical alert bracelet;

Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.

If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .

2) Carry a medical alert card at all times;

You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.

3) Carry an official diagnosis document at all times;

this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.

Taking notes

Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.

4) Bring a buddy with you to the hospital;

In the ER

If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.

Emotional Support

It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.

This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.

On Cellphone

If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.

Making Plans

One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).

Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.

If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.

Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.

Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.

In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.

How You Can Help Now;

You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.

capitol-diagram

Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.

 

Sylvia Burwell 1250x650

 HHS HeadQuarters                                                                        

US Dept. of Health & Human Services                                

Attn: Secretary Sylvia Burwell                                                  

200 Independence Ave., S.W.                                

Washington, D.C 20201

Phone (Toll Free); 1 (877) 696-6775

Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).

Safe place .svg

Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even  more so because this population is at a greater disadvantage than most other minority groups)

And now for a good protest song;

This Land Is Our Land