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.

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Unfair Ultimatums; Which Would You Like To Keep? Your Arm or Your Leg?

Treatment or Healing

If a doctor forced you to decide whether to keep your arm or your leg which would you choose? This is a ridiculous scenario, but figuritively speaking, chronically ill patients are expected to do that on a regular basis, sacrificing one thing they need in order to have another they need just as much.

I found this out first-hand when I began receiving services through SOURCE, a Medicaid waiver program that provides personal assistant services to people with disabilities who need help at home. When I first began with them I was told that I had to utilize a primary care doctor off a list they provided but that I could also keep any other doctors I wanted to keep.

The primary care doctor I had chosen when Emory sent me the certified letter kicking me out was somebody affiliated with Piedmont Hospital and although I wasn’t sure whether she was going to be able to help me get the necessary referrals to out of town specialists a staff person from her office called last week to say that she was in fact working on a referral to Vanderbilt and just to give her some time to get it facilitated.

Good idea

She was unable (because Piedmont doesn’t accept direct Medicaid payment) and unwilling (because she didn’t want to be inundated with Medicaid Patient referrals) to sign up to get on the SOURCE list but I had been told by the SOURCE caseworker that I could have one doctor through their list and also keep her if I chose.

Today I went to the appointment with the SOURCE doctor I’d picked out (whom I will call Dr. HA). Dr. HA had wavy brown shoulder-length hair and was a little taller than I was; maybe about 5 ft 4 or 5.5 and of medium build.  

She seemed nice but I could see fairly quickly that there were going to be numerous problems. 

Untrusting Woman

First, she wanted the records from Emory. This was a non-starter right off the bat and it seemed there was no way to make it out of this minefield unscathed. She told me that she had privileges at Emory Midtown (where Dr. H, my Pulmonologist works) as well as at Piedmont, and (strike 2) that “Emory’s good.” Uhhhh…Not so  much, I thought.

I told her I’d been going there for 13 years and that it used to be but this past year something has changed, but she wouldn’t leave it at that. This turned into a game of 20 questions. She wanted to know what the political stuff was and on, and on. I reluctantly told her that there are numerous inaccuracies in my medical record and that two very important consults out of town had been sabotaged at the last minute, so I was not comfortable signing a blanket release for that medical record to any doctor, but that I would give her the objective information from test results, vital signs, etc.

“I won’t judge” she said Dr. HA in her thick Russian accent. “I can just go in and pull it since I am affilliated with them.” She then said she would also like the information on my chronically elevated liver enzymes.

On Disc

“No, the clinical notes are awful. I’d rather you not. I would rather just close the book on it and not re-open any of that. I don’t want this stuff passed on from doctor to doctor.”

“If you don’t want me to look I won’t look” continued Dr. HA.

I’d heard this song and dance before and no longer trusted it. Signing such a release would have given her the legal right to access the electronic record as a whole and it was too big a risk. “I can give you the objective stuff. I have some of it with me and the data on my liver enzymes I can get for you if you need those”, I responded.

This doctor utilizes students from the Carribean and often 3 or 4 heads are better than one, and could ultimately be helpful but these were not residents but medical students so they were not as far along in their training as I’d originally thought. They all looked of West Indian descent with dark straight hair and dark skin.

One woman typed my medical history while another checked my vital signs and… checked my reflexes (ick). This more irritated me than scared me this time. I resisted the urge to throw that hammer across the room, LOL. As usual I had spasticity/hyperreflexia in my legs. She did not check the reflexes in my arms; just strength.

When it came up as to whether I wanted her to be my primary care doctor I explained that yes, for Source, and that Dr. P was already working on referring me to Vanderbilt and that I didn’t want to further delay that. This was a sticking point with her and she also seemed overwhelmed with the referrals I needed. She asked why Emory couldn’t just have me seen in their Movement Disorder clinic at which point I had to further explain that the Chief Medical Officer had kicked me out and then she wanted to know why, yada, yada…and I said that besides, I had never been referred there even before all that happened and that that was a big part of my problem; that the proper referrals to specialty clinics had not been acted upon when they should have been and with all the politicization of my case it would not really be in my best interest to go to their Movement Disorder clinic now even if I had not been barred from going as it is doubtful that I would get a fair and unbiased evaluation.

Doctor in the office

I went on to explain that I have rescheduled the one at UF Movement Disorder Clinic for January but that I need a doctor to sign off on the necessary forms for my oxygen concentrator to be carried on the plane and the one for the non-profit to cover my travel expenses.

“Really you need to have a neurologist to do all those things” said Dr. HA. “I feel it would be better for me to have back-up in case there ever was a neurological problem I don’t know how to handle.”

“I had two; one in Sleep Medicine who treated my Myoclonus and one in General Neurology” (giving her their names), “but Administration came in and forbid them to keep seeing me. I trusted them because they were going to support me through this process, but I had a really bad experience with a male neurologist and after that I don’t know if I can go to another one here in Atlanta. I looked and there was nobody of the ones available that I was that impressed with, besides, that male neurologist in the Emergency room was out-and-out abusive. I just really am hesitant after that.”

“Did you report it?” she asked?

“Yes.”

Well I know one at Piedmont who’s good…Dr. _____” (I will call this one Dr. HAA to avoid a mix-up as there are lots of these doctors who’s names start with H), I’d heard of him and can’t remember what his reviews said, but still…he’s a male neurologist. The thought of going through this embarrassing explanation as to what happened at Emory with yet one more Atlanta doctor, much less a male neurologist, was more than I could stand.

The primary care doctor, Dr. HA had me describe my Myoclonus, then looked up something on her phone. “Tramadol could lower your seizure threshold”, she said glancing over at me.

“I know, but the neurologists I was seeing didn’t think my Myoclonus was seizure-related, they thought it was due to the underlying disease-process, so I don’t think that is an issue. Besides, I’d already tested going off it for a few weeks and it made no difference in my Myoclonus at all. It’s much better on the 1000 Mgs of Keppra than it used to be before I was on it. I used to be up all night with it until 7 AM.”

Time

The two students stared ahead making slightly uncomfortable faces at her apparent lack of clinical knowledge regarding the several different etiologies of Myoclonus. I noted it as well.

“Dr. P is in the process of setting up the referral to Vanderbilt. I’ve waited 7 months for treatment already and I really don’t want to delay it any longer. The neurologist may or may not even do that.”

“Let me speak with your caseworker” replied Dr. HA. “I don’t know why she told you to keep both of us. That doesn’t sound quite right for me to be for Source and she wouldn’t sign up but she will get paid to see you too when I went through the paperwork to get on their list.”

I handed her the caseworker’s business card and she dialed the number. “Ms. N? This is Dr. HA”, she introduced herself. “Yes, I’m here with Ms. Carlington in the office. She has told me that she was told she could see a doctor through SOURCE and also this one that she’s already established with who is not with SOURCE. I don’t think that’s right that she sees her and also me. Why did you tell her that? I don’t really appreciate it.”

Both me and the two female students in the room looked at one another awkwardly.

Rolling the dice

She put the caseworker on speaker. “I just figured she could do everything dealing with the neurological referrals” said the caseworker, “since she was already working on the referral. We really just need a doctor on record and since she was unable to get on the list I told the client to just pick one on the list for our purposes in addition.” And then speaking to me “Ms. Carlington, I guess you’ll just have to take this one on faith so that you don’t lose the home help. I don’t know what else to tell you if she won’t do it along with Dr. P.”

My heart sank “I’m beginning to think this is becoming more trouble than it’s worth. She wants me to see a new neurologist for the referral rather than her to do it if I switch to her. I don’t know any neurologist I trust and who knows if the new one would even give the referral. This could go on forever and I might never get to Vanderbilt at this rate.”I told her I just didn’t know what to do at this point, as I have had to change way too many doctors in a short period of time.

Dr. HA thanked her for speaking with her. I started to ask the caseworker if she’d be in the office when I got home so I could call her later, but she’d already gotten off the phone.

Dr. HA wrote me a refill of my Tradadol (but just 1 month’s worth) and told me that she’d give me a month to decide what I wanted to do, that she wouldn’t bother making copies of my records I’d brought with me until she knew I was coming back, then I followed her and the students back out into the hallway.

I need the referral to Vanderbilt but I also need the personal assistant. It’s not an either or situation. I need both equally. This is a real double-bind, but it seems if I get rid of Dr. P she won’t be too thrilled after she’s gone to the trouble of working on the referral to Vanderbilt, and she’s a sure thing and will save me time if she does it. 

Dismembered Body

This newer primary care doctor is a question mark at best, and whether a new neurologist she recommends will follow through with the referral (if I can even get up the guts to see a local neurologist) is a total crapshoot since she doesn’t want to do it herself. It also makes me uneasy that she’s invloved with Emory on any level. Somehow in all these people’s self-interest I, the patient got left behind.

So many don’t understand the magnitude of my loss. I had two good female neurologists and they were ripped away from me when I needed them most. This is killing me. I need time to grieve. All this not being seen or heard and being required to fit into other people’s boxes I don’t fit just makes my heart ache and all I want to do is withdraw from everyone. Step out on faith? I can’t; not again for the umpteenth time. I need to eat what I like, keep to my routines, pace myself and not make too many changes too quickly. For me that’s a necessity; not a luxury.

 

 

Why Dysautonomia is Such A Hot Potato Diagnosis

After having spoken with many other patients I’ve noticed a commen theme in that nobody except a handful of experts in the medical community really wants to acknowledge, much less treat patients with some sort of Dysautonomia. I keep wondering … Continue reading

Medical Record Inaccuracies and Doctors’ Personal Agendas

Doctor in the office

Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!

Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated  by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.

Hot idea

Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.

Stubborn as a mule

The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.

Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.

Buffalo in winter cold

When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.

We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.

Taking notes

There are certain principles that exemplify skillful charting on a patient.

1) Charting must be accurate and precise

2) It must be relevant

3) It must be written to benefit the patient

Accuracy and Precision 

This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”

Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.

My diagnosis was obtained by objective tests 13 years ago. 

I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.

There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.

Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.

It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.

My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.

It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.

The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effectThe fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.

Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.

How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.

During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.

His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).

He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).

Field of Medicine

So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.

1) I have dysregulated blood pressure,

2) chronic constipation,

3) near syncopal episodes,

4) Muscle weakness and spasticity, and severe fatigue

5) Etreme thirst and need ice water by the bed at all times

6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time

7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).

8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)

9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.

Solving the puzzle

Relevance

All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.

Grass Roots Political Organizing

It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.

Written To Benefit The Patient

Charting on a patient must be written with the intent to do something useful for the patient.

What do you intend to accomplish?

What is your game plan?  

How are you going to go about helping the patient? 

These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.

Stress and Strain

You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.

Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.

She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.

Do the pieces fit

Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.

Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.

Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.

Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.

Perfect

To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.

I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.

It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.

They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.

In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.

In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once  more facts were elicidated upon further testing.

Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.

Burning Up

Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most  unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.

Androgynous Black Woman

Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.

Running into a wall

Instead of becoming a teachable moment for other physicians watching it this case became a prime example of how not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.

Emory Turns Patient Away At Clinic; The Last Straw

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Butting heads

Just when I thought things couldn’t get any worse…on Thusday, June 30th they did. Transportation came late and my assistant and I were worried we’d get there too late to be seen at Dr. T’s office at Emory Sleep Medicine at  the 12 Executive Park location. The driver was confused and was about to take us to Clifton  Rd. (main campus) but I told him he was heading the wrong way and he turned around just in time stating his GPS was taking him the long way.

There was no time for wrong turns. I was on a mission to bring airline forms to Dr. T. and Dr. V. (whose offices luckily were in the same building) regarding my oxygen concentrator.

I’d printed out forms for both Delta and United figuring those were the most likely two that the GA. Medical Care Foundation might book the trips with. I would need one or the other of the two doctors to sign off on my need to bring my oxygen on board the plane so that I’d run into no problems when it came time to travel.

Document Signing

We got off the van and went to the 4th floor where Dr. T’s office was located. We arrived to find a packed waitingroom. There was a heavy-set black female patient at the front desk carrying out a lengthy transaction to reschedule an appointment. She was wearing a portable oxygen concentrator and the young receptionist behind the counter lingered, typing on her computer. It seemed as though I sat there for 5 minutes. I looked at my watch seeing it was 10:45 already and still not checked in. The last thing I needed was to be considered late on such a crucial day.

The night before I’d sent detailed messages via the Patient Portal to both doctors so that things would would go smoothly and hopefully the forms for the airlines would be signed and handed back to me while I was there, but no such luck.

As my assistant and I waited I saw Dr. T pass through the receptionist area. I waived expectantly to her and she made eye contact with me and smiled her acknowledgement on her way in and out of one of the adjacent rooms. All the while I had no idea what was to come. I thought she’d be coming out to see me shortly, but the next thing I knew a portly, middle-aged white woman with shoulder-length wavy blonde hair called me back.

“Hi” I greeted her. “Are you the nurse?”

The woman stammered a bit and explained that no she wasn’t but that she’d explain. I followed her to a room on the hallway to the left-side of the receptionist desk. As we entered one of the rooms she sat behind a small computer desk and I in my wheelchair, across from her. Not wanting to waste another minute I launched into my request about the airline forms that I needed the doctor to sign. I explained that I was due to travel on July 6th, just a few days away. It was clear from her response that she was fully aware of my Portal message from the night before, but she stopped me in mid-sentence.

“Before you get started, I need to tell you; I’m the Office Manager. Patient Relations has been calling us all morning telling us that you’ve been terminated from the clinic and that we aren’t allowed to see you. I was going to save you the trip over here but it seems you’d already left. Because of the termination I can’t give those forms to Dr. T. She won’t be able to speak with you or fill them out.”

I felt suddenly as though someone had punched me in the gut. I could hardly believe that after all this that Administration was still placing obstacles in my way. It was at this point that the full impact hit me. Tears began pouring from my eyes.

“Look”, I said. “This is what happened. I was abused in the ER in December and instead of doing the right thing and correcting the problem Administration is covering it up.”

“I don’t know the story” she replied.

“Well now you do,” I said looking her dead in the eye. “I am honest as the day is long! They called in a sadistic neurologist to scare me and he beat me with his hammer, then had his female resident come back into the room afterwards and plop her butt down on my foot. Then he put defamatory things in my chart to destroy all my doctor/patient relationships so I could never get help. This was an impaired professional with an anger management problem.

Goofy doctor

Think about it. If I were what they’re painting me as I would be in a mental hospital right now after the past 7 months of harrassment Administration has put me through since the incident. You have no idea the tactics I’ve been subjected to. I must be one hell of a strong woman to withstand all that and still be talking to you rationally as I am now! This is not right! I was the victim, not the perpetrator and now I’m being punished for something they did to me!

Vulnerability

“That’s all the more reason why you should probably get your care outside of here and start somewhere fresh” said the Office Manager.

Tears continued to flow down my cheeks. “This cannot be allowed to happen. This is not the time!”, I pleaded. “I’m actively ill! It’s not like I’m coming in for a routine check-up. I really needed this appointment. I’m so sick that I need to go out of town to these top level specialists to get more advanced testing than I can get here, but nevertheless, I still need my neurologists here locally to come back to afterwards. Dr. T treats me for the Myoclonus. and Dr. V  was fully intending to help me get these evaluations but Administration is sabotaging my trip!

Suitcase-travel

I’m supposed to leave on July 6th! I don’t have time to start over right now with all new doctors. Don’t you understand? I’m sick and need to go soon so they can find out why! I’m waking up multiple times a night choking and gasping for air. My hair is falling out. I’m Dysautonomic and nobody knows why. They can’t do it here in Georgia!” 

Plane in blue sky

“I’m not a clinical person”, said the blonde-haired woman. “I’m just an Office Manager so I don’t know what to tell you in regards to that.”

“Also, I need those sleep study tapes because the specialists need to see my abnormal movements for themselves. The reports don’t go into enough detail although they had some EMG leads on me. The report didn’t document the rate of the jerking, only said that they picked up the movements but that they weren’t PLM. They are some sort of Myoclonus but they don’t know what specifically. They present at the onset of sleep and only under certain other circumstances like when I’m lying on a hard surface or my upper body gets too cold.”

“The reports will be good enough. The problem with providing the tapes is that it requires a certain kind of software to view them that’s not compatible with anybody else’s.” On the face of it that sounded a flimsy excuse at best, and at worst it may have been a lie.

“These out-of-town appointments took months to get” I continued, “and if I have to reschedule it could be up to a year for me to get another appointment…And also…I need to tell you something. I have (condition that can’t be named at this time) which is a neuro disorder; not psych, and therefore I don’t do well with this sort of disruption to my life. What they’re doing is really not good for me.”

The Office Manager seemed to soften for a moment. “I understand, and I empathize, but there’s nothing I can do” she said lamely. “Because we’re not a private practice the doctors here have to go by what they say to do. It’s now in the hands of Patient Relations.”

“Patient Relations is just a mouthpiece for Administration”, I replied. “They aren’t going to do anything. Do you want to know what their idea of an investigation is? They ask the perpetrators what their side of the story is, write it up, and send it to the patient. That is not a fair and unbiased investigation! I used to work as a patient advocate. I was instrumental in designing the Protection & Advocacy system in the state of Georgia. I never did my investigations like that!

I pulled the forms from my white 3-ring binder. “Here. Give these to Dr. T. just in case. Without this I can’t board the plane with my oxygen concentrator.

Corporate

She needs to go to bat for me as my doctor! Have her tell Administration that blocking my care here and sabotaging my trip is putting the patient at risk. Have her advocate for me!” 

The office manager looked at me from across the desk. There was a sense of futility in her body language. I found it increasingly difficult to look at her.

It seemed as though tears came in waves and then in-between got stuck and wouldn’t come out. I felt as though the wind were knocked out of me. I covered my eyes and leaned forward in my wheelchair teetering on my seat. I opened my mouth and no sound would come out.

Somehow it seemed especially cruel knowing that Dr. T. was just a room or two away but could not come in and speak to me. They didn’t even have the decency to let me talk with her one last time.

Even that being the case, all they had to do was have her sign my forms and bring them back to me but The Almighty GD Administration was like a huge fart in the room, rancid and putrid and taking precedence over everything that was rational.

Death

The Office Manager was like a deer in the headlights, a lemming walking automatically over a cliff. Only one thought entered my mind at that moment. No job is worth casting a patient still in need of care out into the street to God-knows-what fate. The finality of it all fell like a thud to the floor.

Smashing an egg

After awhile she followed me out into the waitingroom, still packed with patients. I was still crying. My assistant was not where I’d left her. The Office Manager asked me her name, I told her and she said she’d try to look for her. At first she couldn’t find her but came back and took me back the other way to a waiting area that was less crowded.

“I’m just getting you more upset” she said turning to her right as if to leave.

“No you aren’t. It’s not you, it’s them” (meaning Administration). I reached out my hand and she took it. This was bigger than either of us. She asked if I could wait there for a minute and she’d try again to find my assistant. I nodded. In a few minutes she returned with her. The Office Manager explained to my assistant what she’d said to me about Administration not allowing Dr. T. to see me. I told her to ask Dr. T. to do everything she can to stand up for me.

My assistant turned to her. “So you’re basically saying that she needs to find all new doctors?”

“Yes, pretty much”, said the Office Manager.

“Let’s go call transportation” my assistant said to me, turning away from the woman in disgust. “We can do it from downstairs.”

“I need to give these other airline papers to Dr. V. on the 5th floor first and try to talk with her nurse before we go.” We headed toward the elevators in the main hallway. As we were leaving the Office Manager called out after us “It might be a waste of time for you to go down there because Dr. V. won’t be able to do what you need her to do, but you can try. Good luck with everything.”

The first one to arrive was too full, so we opted to wait for the next. Once on the 5th floor I approached the reception desk and asked to speak with J. Dr. V’s nurse and the receptionist told me she’d call her.

In just a few minutes J. came out and introduced herself. She told me Dr. V. was only here on Fridays. I told her the situation and asked her to ask Dr. V. to advocate for me and advised her to get in touch with the Union rep about this situation because Administration is putting pressure on medical professionals to act against the best interest of patients. She said she would and wrote some notes on a small post-it pad.

I handed her the airline forms and asked her to give them to Dr. V. The nurse said she’d call me. Once we’d gotten home I checked my phone messages and found both the confirmation of that day’s appointment and a later message from A.B. of Patient Relations stating the appointment was cancelled. The following is a sound file of the confirmation and the message from Patient Relations.

 By the time my assistant left at 3:30 PM on Friday no call from the nurse had come in yet to confirm that the form had been completed and faxed over. 

The next call on the tape is from a contact person at Medicaid informing me on June 1st that the GA. Medical Care foundation had still not received my paperwork from my doctor. Late last night I saw a Patient Portal Message. I logged in and it was a goodbye letter from Dr. V.

Corporate had prohibited her and any of my other doctors from seeing me. A message just underneath from the nurse which merely typed the instructions for the GA. Medical Care Foundation process implied that the paperwork had never been filled out or faxed, thwarted by the top brass at Emory Healthcare.

No reason was given to Dr. V for the “release” as Corporate so euphamistically referred to the expulsion (as the real reason; discrimination and retaliation for filing a complaint is against Federal law so they wouldn’t admit to that).

I wrote back to her telling her that I don’t think I can bring myself to start over again with a new neurologist, that I wanted to keep seeing her and that maybe she should contact the Union and tell Emory to take this job and shove it if they wouldn’t budge on this issue.

I left her my number and asked her to call me if/when she goes into practice somewhere else. I said that there is a shortage of good female neurologists in the Atlanta area and especially ones who really care about patients, and that I could tell she does. When you’re ill like I am and have been through what I have, being more than just a number, having a doctor who cares if you live or die and is truly invested in you is especially important.

Until I’d spoken with the nurse the other day I thought she’d worked there fulltime but in fact it’s only half a day on Fridays, so I guess it wouldn’t be any big financial loss if she decided to tell them to stick it up their collective posterior!

I cried most of the night and woke up crying again this morning.

We are not a bunch of chess pieces (patients and doctors) for Administration to move around at will!

Next Move

We are people with real relationships! To destroy those relationships which can even determine life and death for a patient is to do harm!

Logistically I don’t know what will happen to me now or who will fill out the forms necessary so that I can get the care I need.

Blood pressure

What the suits in the ivory tower fail to understand is that in order to do those kinds of things a relationship, a connection must be there and the doctor has to care about you. You can’t just find that in any doctor, and if a patient finds a good one it’s best to keep them.

I looked out there plenty before I saw Dr. V and after the first appointment (knowing Emory had her by the short-hairs) and I didn’t find it. Then as I got to know her I realised she was it. She would have done all that…if Administration hadn’t in effect held a gun to her head not to.

If you are a patient who has been mistreated at Emory please see this post; and contact me privately to give me your written signed statement. It’s never too late to make your voice heard.

 

More Delays on Out-of-town Specialist Appointments

Ain't It The Pits - Photo for WordPress Blog DSC_0023

Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.

Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors). 

The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke. 

I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!

It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.

Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.

Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.

I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.

There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.

Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50  mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.

The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.

I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come  home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!

I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this  non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.

My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.

Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.

With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do. 

After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).

I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.

Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.

It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.

It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.

There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.

I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.

Emory Patient Banned for Giving Negative Feedback

“Please accept this letter as a formal notification to you that all the physicians at Emory Clinic are formally withdrawing from your care. We wish to terminate the physician/patient relationship that has been established because we are unable to meet your expectations.”

Emory Chief Medical Officer - Letter Banning Me Dated April 19th 2016

As I awaited Dr. V’s return from maternity leave it seemed like an eternity. The Dysautonomia continued to spiral out of control and still no treatment for it seemed forthcoming. My digestive tract took turns with my blood pressure and heart rate wreaking havoc on my body. The weight-loss continued, and my hair began falling out. I found it in my bedsheets, on my clothes, on the floor, in the bathtub and it even fell into my food during those periods when I could eat. The Patient Portal had grown eerily silent, and though I occasionally left symptom updates for Dr. V’s Nurse Practitioner it seemed almost as though the conversation had gone cold and for a time I wondered whether anyone was reading (except for Administration whose new pastime seemed to be keeping tabs on me). It became evident that nobody was going to fill in for Dr. V to write orders in her absence and to this day I don’t know why, nor could I get a straight answer to this question when I directly asked staff. I figured why waste all this time for the 3 months she was away when we could be actively working on the problem.

The Nurse Practitioner eventually told me she was forwarding my correspondence to Dr. V at home and that was some consolation. It turned out Dr. V was in agreement with my getting back on IV saline given the fact that there was not a whole lot else to be done about it other than to load me up on beta blockers which neither she nor I wanted. Even so, she held off on writing the order herself while she was home and nobody else wrote it either.

The Gastroenterologist, Dr. J.M. was reluctant to venture into that territory, viewing it as the job of Neurology, and though she was cordial enough she seemed to be very traditional and more in favor of treating the GI symptoms individually with a pill for each one. She did do a couple tests though, so it was a start. Other than the waxing and waning of my symptoms punctuated by several acute crises of near syncope, nausea, headache, and vomiting, everything else for awhile anyway was uneventful and I was grateful for that.

I thought maybe finally Administration had turned their attention to other matters,  but no such luck. Just when I thought it might be safe to go on with my life and my medical care and that maybe things would eventually iron themselves out I received a certified letter, then soon after, another copy of the same one in my mailbox with the dreaded logo on the left-hand corner in that severe, bold font in dark denim blue. I wondered what fresh hell they were cooking up this time and all the while hoped it was good news, but when I opened it, the audacity hit me full in the face like a mean left hook. It was an official letter from Emory’s Chief Medical Officer (not the male I’d been told held that position several months ago but this time, a woman whose name was unfamiliar). This was not long after I’d received the report from Patient Relations merely parroting Dr. B’s response and that of his direct supervisor who had not returned my call as she’d promised during the time before Dr. B officially bowed out. I’d called to follow up with Patient Relations and got their voicemail so I’d left a message telling them I was still sick and asked what exactly Emory was planning to do about that. For weeks I’d received no response. Although  irritating I wasn’t surprised considering how useless their “investigations” had been before. It now seemed clear that the letter was meant to act as a response, but instead of offering some sort of olive branch, concession, or compromise to come to some positive resolution the content of the letter pushed further in the opposite direction upping the ante from the once rather off-hand suggestion that I could always choose to go someplace else if I was dissatisfied to now directly telling me I was being kicked out by the Royal WE which was the entirety of Emory Healthcare. This is something that they don’t legally have the right to do because they’re considered a non-profit organization and the conditions under which they receive federal funding dictate that they cannot discriminate nor refuse treatment to patients who come to them asking for an appointment.  The doctors employed by Emory although technically employees are individuals, and some are better than others.

I have never maintained that every single one of them is crappy and I made that very clear to Patient Relations. I give credit where credit is due and I don’t blame those doctors who are genuinely trying to help for the shenanigans perpetrated by certain other individuals who choose to continue to exercise poor judgment or engage in malicious acts against me.

Despite the vicious nature of the corporate entity there are some good and caring doctors there and it is unfair for some corporate mouthpiece to be so presumptuous as to say she speaks for them. I’m sure that there are many doctors whom would blanch if they only knew how unethical those in the ivory tower behaved, and some might even decide they didn’t want to work for such an evil empire that so callously dismisses patients still needing care.

Hypocritically, Emory spends probably millions (possibly even billions of dollars) on patient satisfaction surveys, yet when a patient gives honest feedback that is negative about an experience there they are personally attacked. This information should be used to improve the system, not used against the patient, and nearly all federal civil rights laws have a requirement that the claimant not be retaliated against for filing a grievance, yet this is exactly what has been done to me.

If I were one of the decision-makers at Emory I would take that money currently spent on surveys that are used just to pump up their false image and all the new buildings being erected around town and put it towards hiring more doctors. More buildings will not make Emory better, that depends on the people in charge and it is incumbent upon them to earn the reputation they so badly want. More buildings cost money and it is highly likely that the care each patient receives will suffer and more rationing will result.

Not long after I had my colonoscopy I developed a horrible urinary tract infection and needed to call the Gynecology clinic to make an appointment since it had been awhile since the doctor there T.M. had seen me in the office, so although it was obviously e-coli she could not just call in a prescription before seeing me to culture it and make sure she was giving the right antibiotic. As it turned out, she had no openings for about 2 weeks and this thing was growing like a weed by the day, so it needed to be taken care of within the next day or two or I was going to end up back in the emergency room. That was how serious an infection I had! The weekend was quickly approaching and I wasn’t looking forward to being stuck with it until the following Monday. The call center informed me that they did have an opening at Emory St. Joseph’s location, but when the representative attempted to schedule me she kept on running into a wall.  

“This thing won’t let me advance to the next screen,” she said. “I’m getting a full stop!” I asked if the system were down and she said no, but she wasn’t sure why it wasn’t working now but thought it was a temporary malfunction. I told her in the meantime to have a nurse call me.

Not long afterwards I received a phone call from a nurse, M. whom it didn’t dawn on me until halfway through the conversation was Dr. B’s nurse. I wondered why his nurse in Primary Care would be calling when I had been trying to get an appointment with Gynecology, not her clinic. She told me “You’ve been dismissed from the clinic.” I calmly told her that they could not legally deny me treatment, that it was against Federal law, to which she got very nasty. This was odd that she would seem to have a dog in the fight, but then it suddenly occurred to me that most likely it had been she who had initiated the ban in the first place as revenge for my clearing the air with Dr. B. on the Patient Portal. Obviously there was gossip taking place behind the scenes (more unprofessional behavior than I’d known). Dr. B. was a big boy and it was petty that this woman was fighting his battles for him. She raised her voice, talking over me rudely, telling me I’d have to go somewhere else.  

“Where exactly do you suggest I go on a Thursday afternoon?” I asked.

I don’t know, you’ll just have to go somewhere else.”

” That is illegal” I reiterated. “Emory Clinics get federal funding so you have to accept patients who wish to make an appointment. You cannot discriminate or cherry-pick. I’m an established patient with this doctor and have been for several years”.

“Go someplace else!” She yelled into the phone and hung up. I called the call center immediately and reported what had just happened. A young woman in the call center apologized and said that I shouldn’t have been treated that way and gave me the name of a man who was the supervisor there and said she’d leave a message for him to call me, but he never did.

By the skin of my teeth I was able to get help from a mobile primary care service. Initially they were going to try to get home healthcare out here to get a urine sample to culture but that fell through and we found out that they didn’t do that kind of thing, so a Nurse Practitioner from the mobile service took mercy on me as she too was concerned about my having to wait through the weekend because of the severity of the infection. She called in a prescription for 14 days of Cipro. It turned out I needed all 14 days because the infection was pretty entrenched! Clearly my immune system is compromised, as it seemed to have sprung up overnight and became full-blown faster than normal and was affecting me systemically by the time Friday rolled around. Once I got the antibiotic it took awhile before I noticed feeling any better although slowly but surely the infection started to abate.

I looked up information on this Chief Medical Officer and discovered ironically that she’s an OBGYN herself! Surely she knows what untreated e-coli infection does to the human body, especially to someone chronically ill who is immune compromised. She should be ashamed of herself! What doctor with any sense of ethics does that! She needs to remove the block from my account immediately!

Then a few weeks later I began feeling severely faint and nauseated and ended up in the ER again. The ER doctor at St. Joseph’s wanted me to follow up with my Cardiologist in just a few days but he had no openings until July, so I searched out a Primary Care doctor and luckily was able to get an appointment sooner. She seems very nice and was open to my starting back on IV Saline infusion and was willing to order it but wanted my neurologist to fax her something saying she was OK with it first. She also thought I should see an endocrinologist as she said that there are certain endocrine problems that can cause Dysautonomia.

Dr. V. returned to work and I saw her on June 3rd. We had a long conversation and I told her everything that has happened and she was very understanding. I detected none of the pushiness I’d seen in the first appointment. I thought maybe she was feeling under pressure knowing she’d be giving birth any time, so maybe what I saw the first time wasn’t her usual personality. During this second appointment she seemed very warm and caring and I could tell she really felt for what I’ve been going through and wanted to set the record straight. She is in total support of my having these out of town evaluations and said that Emory is woefully lacking in the right equipment to do this type of autonomic testing. She told me she wanted to know how the two upcoming appointments with the specialists go. Then she ordered a number of blood tests related to various endocrine things to give the endocrinologist a head-start and one or two tests that could be done at their lab on mold. I left there feeling a sense of renewed hope, but then I got home and found that I couldn’t set up the next follow-up appointment with her. I finally have a neurologist who is invested in me and I want to continue seeing her, and make no mistake about it I intend to fight to do so.

 

 

Medicare Home Infusion Site of Care Act of 2015; S275 HR 605 – Your Support is Crucial

As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .

Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.  

Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!

Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association,  wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.

The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.

Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.

To contact Kendall Van Poole you can call;

(703) 838-2664 or e-mail him at Kendall.VanPool@NHIA.org  

An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.

Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.

For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).

Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.

Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.

It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).

Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.

A Strange Irony

DSC_0007

Things have become increasingly precarious as time goes on. I am used to spending time alone and often prefer it but it doesn’t really hit me how alone I am until I find out I need help with certain things and can’t obtain it, yet can’t do certain functions myself either. Then all of a sudden it hits me that there’s nobody there but me, at least noone reliable. With my body becoming less and less reliable that is really becoming a problem.

The past few days have been unbearable with the dysautonomic symptoms out of control and nothing I can really do to stop them. The near fainting spells wake me up from sleep and along with them comes heart arrhythmia; my heart pauses and then beats weakly with a faltering type of flutter. I feel so weak now and just want to rest. I’m finding now that my GI problems are becoming more baseline and that I can’t tolerate much by mouth except yogurt and applesauce. Last night the applesauce didn’t even sit as well in my stomach as it had just the day before. The previous day I’d tried making a rice bowl with cheese and some sour cream and some seasonings and ended up in bed on my side clutching my stomach. It felt as though by the next morning my food was still up in  my throat. It was not digesting.

Because of all the stomach upset I have not been able to take most of my medications. It’s harder and harder these days to take anything by mouth but my ice water.

I’m now running out of things I can eat in the house anyway and have neither the money nor the stamina to go out and get more from the store.

There was one person who shopped for me occasionally but he has dropped out of sight for weeks now and I’m not sure what has happened to him. The few people I know locally seem to always have tenuous phone and internet connections. They either don’t receive messages due to a technical problem or else their services are cut off on any particular month for non-payment.

Today I got word that my application for the Independent Care Waiver through medicaid was denied. The Reason? Because I am “wheelchair bound and have no circle of support” both things I have no control over. I wonder what kind of people came up with those harebrained regulations?

So if someone is in need, is disabled, with limited mobility and has no support then the response is you don’t give them support? How much logical sense does that make? 40 hours of service a week is sure better than nothing! I would take that if that’s all they can offer, but somehow my voice doesn’t count. This is another example of the patient’s needs being totally and arbitrarily disregarded.

Two more weeks to go before I find out about the other waiver. That one gives you less hours but doesn’t have the requirement that some person in the community sign a form, so we’ll see where that leads.

So nobody’s regularly checking on me locally now and things are worse than they were several weeks ago both in terms of people coming around and in terms of my health.

I have also been unable to reach my son. His new phone contract is now long distance if I call him but if he calls me it’s free to him, but I now get a generic voicemail when I leave a message. Emails have also been unsuccessful. They go through but no response.

I need somehow to reach my aunt to let her know that I will likely need someone to go with me to some of these out of town independent evaluations. She would probably want to know but I have heard nothing from my cousin for months now from her Facebook account who had said she’d contacted her and a few of her children after I got out of Piedmont.

As for making new connections, it’s a bit late for that. I’m not much more than a pet rock at this point, lying in bed only able to sit at my computer propped up on pillows. Honestly, who locally would want to know me? I’m sure they’d be bored after a few weeks at best. I can’t really go places, I have no money to go out to eat these days, and if I did the food would make me sicker. Then there’s the fact that my underlying disease is untreated and totally out of control and this makes me not the best company because I have to first focus on saving my own life on a daily basis. That doesn’t make room for much talk of everyday things that others take for granted and are part and parcel of most friendships.

On my better days I can talk about art and politics, and animals, and if I don’t have to talk I’d much rather hear about their lives than talk about my own as answering questions in itself has become taxing and painful, but my better days are getting fewer and fewer now.

Bills are falling by the wayside because my brain can’t hold any more than what’s right in front of me right now. Processing is at a slow crawl.

I find it hard to do much at all today besides making sure my glass of ice water has enough ice in it. Going to the kitchen even in the wheelchair is exhausting to go get more ice, but I hope I can continue to do at least that because I don’t want to be further dehydrated.

Beneath the surface I am grieving a life lost and the realization that my days are numbered. This is not some sort of depression but a coming to terms with what is, and what could never be despite all my efforts. I never wanted it to end this way, but at least if it has to be I will die at home with dignity. If I don’t make it through then perhaps they will find out what’s really wrong at autopsy and if it’s genetic as I suspect these results will be shared with my son so that maybe he won’t have to meet the same fate as he gets older.

As with any disease, early detection and treatment are key, even in those without a cure. If my story ends up a cautionary tale then my life will not completely have been in vain.

 

 

 

Treatment Stalled Again Because Of Emory

Running Out of Time - Hourglass

Treatment has hit another snag and it’s precisely because of those medical records from Emory; both what they say that is false and what they don’t say that is true. The worst of both worlds. What good are medical records anyway? Isn’t the whole point to help the patient? And if they actually sabotage a patient and prevent them from receiving the care they need then what?

 I wonder how long I can go without treatment before this again becomes an emergency. I am so overheated there isn’t enough ice water in the world to relieve it. I can’t seem to stay cool enough and I sweat around the hairline and in other specific areas of the body. It’s strange because it’s not my entire body that sweats, just certain parts of it such as lower back and my face and scalp get spontaneously oily. I change positions but that only helps temporarily. Holding my glass in my hand helps to a certain extent but it also melts my ice faster. Although I have my wheelchair next to the bed even getting in it to go to the kitchen is exhausting especially given the fact that I still have no neck support and am sitting upright. Me and gravity don’t exactly get along.

The weekend was absolute hell with cardiac events waking me up two nights in a row, several times each night with my heart pausing and then straining to beat slowly and haltingly. The only way to prevent it is to stay awake in the wee hours of the morning and even that doesn’t always keep it from happening. It often flairs really badly at around 3:00 AM – 6:00 AM.

My gastrointestinal symptoms have been quite erratic lately and I have noticed loose sticky stool yesterday and more urinary retention. Oddly when I peed it was as though I really wasn’t feeling it coming out. It wasn’t numbness in the usual sense, just lack of sensation or greatly reduced so I was unaware of just how much was actually in there. I had to consciously push with my abdomen to get it out but it was quite alot.

Then later I started noticing some fecal odor and leakage from the back end and have had to change underwear on a number of occasions. It’s not diarrhea but some sort of brownish greenish clear liquid. Sometimes I see it when I wipe myself on the toilet paper too.

I’ve been waking up each morning with headaches that are so debilitating I can’t move sometimes for an hour before the pain lets up enough even to sit up and get more ice water with which to take my pain medication.

My eyes continue to be dry and the skin on my arms is taking on a distinctly crepe look. I must still be dehydrated. The water I’m drinking and salt intake just aren’t processing through the GI tract.