Tag Archives: Dysautonomia

Medical Resources for Low Income or Uninsured

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Help

Recent events have gotten me thinking now about the need for linkage with services to help chronically ill people when it becomes necessary to seek help outside their local communities. To know just how big a need there is out there you have only to look at GoFundMe, Youtube, and a variety of other public online forums. There is help available but it’s not always well-publicized. The financial cost alone to travel out of state can end up more than you have.

Most of the specialty clinics don’t cover lodging, and consultations are usually done on an outpatient basis, so that often requires staying in a hotel for several days on your own dime. For many on a low income and/or uninsured, this is impossibility without some financial assistance. The question is; where to look? When I found out that my local Medicaid transportation broker doesn’t transport people for over 50 miles, and the hotel fee for 4 or 5 days in just one of the two cities I need to travel to next month was going to cost most of my Disability check and that I would be forced to default on my regular monthly bills (already behind) in order to go and receive the more advanced medical help I need I was frantic and really bummed out. 

Oh No

I was able to find a non-profit organization called The Georgia Medical Care Foundation that covers airfaire, lodging, and food for the time one has to be away for special testing, assessment, and/or treatment. This organization is connected with DFACS (Dept. of Family and Children’s Services).

If you live in Georgia and need financial assistance for such a medical trip have your doctor call (678) 527-3000 and have them fax him/her their application form. They will want to know your name, date of birth, dates and addresses of your travel, and possibly some medical information. Once the doctor fills it out, faxes it back, and you’re approved it then goes to Ginger Henry, the contact person at DFACS who cuts the check (404) 657-3596.

At first somebody gave me incorrect information that the funding was probably by reimbursement (which would have made this an inaccessible option for me), but when I spoke with another representative I was told that it is issued to the patient and/or airline/hotel up-front.

My neurologist, Dr. V. left word yesterday through one of her nurse practitioners that she’d be the one to fill out the form ( a big relief, since as of my last post no doctor had yet committed). I need to call my contact at Medicaid in the morning to follow up on where my application is in the process. I hope Dr. V. got it filled out and faxed back yesterday.

In my search earlier for other resources I found this webpage you might find useful which covers resources throughout the US that are available to help with various medical needs. There is also a section where you can search by state. You can also contact your state legislature to find out if they have set aside an indigent care fund (many states do). Your local representative can probably tell you if such a fund exists where you live and find out what the process and criteria is to access it.

There are also some illness-specific groups and organizations that will help financially.

I’m having alot of pain extending from the center of my spine inward to my abdomen, feeling as if someone has kicked me in the stomach, and waking up every few hours each night now with my body temperature all dysregulated; burning hot, then freezing cold, so I hope that the doctors at these clinics can find out what’s causing this and that there is some treatment that will get it stabilized at least. It is getting to be a bit too much.

Burning Up

I had about 2 weeks reprieve from the GI symptoms but they are back again. Now when I go to the bathroom my bowels feel like I’m passing shards of glass, and yesterday evening I noticed the toilet paper dotted with blood, and both back and front feels raw. I can’t tell whether I have another infection or if it’s something related to my Dysautonomia, or a combination of both. It’s 5:42 in the morning and I just took some pain medication so that I can hopefully get some sleep before the personal assistant comes at 9:30 AM.

 

More Delays on Out-of-town Specialist Appointments

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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.

Cease and Desist Letter Sent To Emory Healthcare

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Blue Medical Scales of Justice

I found out that mercifully Dr. V had written the order for the IV Saline and faxed it over to my new primary care physician (outside of Emory), but apparently the new PCP needed her to do a physical examination. We’d had so much piled up from Dr. V’s 3 months away that there wouldn’t have been time for that even if we’d known it were needed, but I had no idea. It wasn’t until a nurse responded to me on the Patient Portal that I knew there was any hold-up.

On Thursday, June 16th I attempted to set up my next follow-up appointment, and was thwarted from doing so because of the block Emory’s Chief Medical Officer had placed on my account. Yesterday (Friday) I tried again after leaving a verbal message of Patient Relations’ voicemail that Emory was violating Federal Civil Rights Non-descrimination laws, and that they need to remove the block on my account immediately. I received no response Thursday, nor Friday, and on Friday when I again attempted to schedule an appointment with Dr. V for sometime in the last two weeks of June or for once I’d have returned home from Cleveland Clinic and UF from the two specialists in mid to late July, I found that the block was still in place. Today I decided to submit a cease and desist letter via Emory Healthcare’s Patient Relations Department on Emory’s website. Here it is below; 

Letter to Patient Relations Sent Saturday, June 18th Via Emory’s Web-form

 I called Patient Relations and got only a voicemail at your phone number (I believe it was on June 16th around noon) at (404) 778-3539. I left a message regarding the fact that Administration, (specifically P. Z. C., MD) has issued a block on my ability to schedule future appointments with any of my doctors at Emory. A licensed physician who does such a thing, superseding and thwarting care by a patients’ own physicians is violating the Hippocratic Oath by maliciously standing in the way and creating barriers to access when the patient is in need of medical care.

 Because of her actions I was denied care for a severe urinary tract infection at Emory Gynecology when I attempted to set up an appointment with my established doctor there. A nurse by the name of M. (at Emory St. Joseph’s Clinic which had the earliest available Gynecology clinic appointment) called me back to inform me I had been “dismissed from the clinic” and rudely talked over me, stating I’d have to go someplace else. When I informed her that refusing care by a non-profit organization is a violation of federal law she yelled into the phone that I’d have to go somewhere else, and then hung up on me.

 I believe this is the same M. that is a nurse of my former primary care physician at Emory St. Joseph’s Clinic, but in Primary Care. The Clinic I was trying to get an appointment with was Gynecology so I do not know why a nurse from Primary Care was calling me.

 Gynecology could not call in the needed antibiotics without seeing me first, so I had to make cold calls to outside physicians on the spur of the moment in order to catch it in time and even then it took all of 14 days to clear it up. I have chronic susceptibility to e-coli infections of the urinary tract. If a mobile physician group had not stepped in to write the prescription for Cipro ASAP I would most likely have had to go to the ER because it was already beginning to affect me systemically. Being an OBGYN herself I am sure Dr. C. is aware of the effect untreated e-coli has on the human body.

 I informed Patient Relations that this is against federal law and that therefore this block must be removed immediately or the corporation risks federal discrimination charges. My call was not returned by the end of business that day nor the next full day (Friday, June 17th). On the 17th I again attempted to schedule my follow-up with my neurologist at the Executive Park location who fully intends to help me and wants to see me on an ongoing basis. She has been away on maternity leave and there was alot that was backed up needing to catch up on when I saw her last on June 3rd and she needs to examine me to start certain services I need. Although I am scheduled to see some out of town sub-specialists I still want and need to keep her as my local neurologist.

 Such decisions should be between me and my doctor and therefore Administration needs to stay the hell out of my confidential relationship with my doctor. I do not know this corporate executive Chief Medical Officer and although she might be a physician she does not have the standing to make medical decisions above the heads of me and the doctors that I choose to enter into a doctor/patient relationship with. This is a malicious and retaliatory act on the part of Administration to prevent me from proving my condition and setting the record straight. Their actions show clear-cut manipulation of my care and an attempt to prevent my obtaining the true diagnosis of my disease-process.

 Retaliation for filing a grievance is an added violation under federal law from which no Emory regulation will provide them immunity. The further they push this agenda the more violations they’ll accrue.

 I don’t know if certain petty individuals consider this their idea of fun or what, but it is a very dangerous game they’re playing, I do not find it amusing and I intend to defend my civil rights to the fullest extent of the law, as a patient with several already established serious autoimmune diseases, I consider their acts of obstruction, patient-dumping, and medical neglect as a corporation a threat upon my life.

 In addition to having the ban lifted, I would like to know exactly who initiated it, why, and how this top executive was brought in.

 This harassment of me has gone on since December when I was abused in the Emergency room and reported it, and it is very clear now that the corporation is attempting to dispense with me as a way to further cover it up.

 Obviously, the corporation is corrupt all the way to the top brass and uses strong-arm tactics to silence those who speak honestly about incidents such as what happened to me (and it is a matter of public record that they’ve resorted to dirty tricks against their own former employees whom have had the courage to stand up and become whistleblowers to report corporate corruption when they saw it at Emory).

 When sending a man to scare and beat me into submission didn’t shut me up, they decided to resort to kicking me out.

 Clearly they underestimate a woman fighting for her life. Given my advocacy background it would be in their best interest for them to cease and desist any further interference with my medical testing and treatment, get out of the way and allow me to pursue my medical care in peace with those doctors with whom I have a good rapport; with those whom genuinely want to help me, whose motives are pure and are in the field of medicine for compassionate reasons.

 I do not bother anybody who doesn’t attack me first, and I am only interested in justice, maintaining my freedom to choose my medical relationships, to obtain my care in a timely, respectful, and compassionate manner, to be allowed to give honest feedback without fear of reprisal, and to be afforded my civil rights to healthcare without interference and impedance, my care plan determined jointly between me and the doctors of my choosing without any sort of conflict-of-interest, pressure or duress from “above”.

 There is absolutely nothing unreasonable about that “expectation” and nothing that justifies my being blocked from scheduling appointments at Emory Healthcare nor anyplace else.

 I am writing you on Saturday, June 18th and I look forward to hearing from you on Monday, June 20th that the block has been lifted and that I can resume scheduling appointments with doctors I wish to continue working with.

Pippit Carlington

***********************************************************************

The letter was submitted at 6: 55 PM, Saturday, June 18th, 2016. I hope this will get through to them that I am serious and that they need to stop these vicious and irresponsible games. What I’ve been subjected to over the past 7 months is institutional bullying and I don’t take that sort of cruelty lying down. If this corporation intends to kill me either actively or passively it will continue to be documented in as close to real time as possible and sooner or later they will be caught and the full weight of the law will come down on them.

Just as Administration is watching this blog, so are others whose job it is to protect patients like me, and I’m sure that I’m not the only patient this type of thing has happened to at Emory. It may be that I’m the first patient to make it public, but a good background search will reveal that Emory has a long and sordid pattern of vicious and underhanded attacks against dissenters, and of discriminatory practices (mostly on the University side), but there have been documented incidents of corruption starting with antisemitism, and others ranging from research study manipulation and NIH funding fraud to Medicare/Medicaid billing fraud some of which included double-dipping; billing Medicare and Medicaid for services which had already been paid for with research funding.

In each of these cases the entity sought to discredit the whistleblower who had exposed the particular malfeasance by exploiting whatever vulnerability in that individual they could, be it their work reputation, going after their medical license with lies about them, assassinating the person’s character, and/or painting them as mentally ill.

Dr.Charles Nemeroff, a psychopharmacologist and former head of Emory’s Dept. of Psychiatry who is mentioned in numerous reliable media source’s articles and investigative reports as having committed research and medical journal publishing fraud and that he was in bed with major pharmaceutical companies and getting promotional funding from them while employed by (and with the blessing of) Emory. He also falsified safety claims on Abilify stating it was safe when in fact it was causing Tardive Dyskinesia.

Nemeroff himself conducted some of those psychiatric evaluations on whistleblowers, (proving my point that Emory does have unofficial hatchet-men to do their dirty work for them in order to cover up their corrupt practices).

After leaving Emory and Georgia in disgrace, Dr. Nemeroff went on to become employed at University of Miami and officials there seemed strangely unconcerned about hiring somebody who had committed illegal and unethical acts in the process of his career activities.

Apparently the reason for this nonchalance according to the Chronical for Higher Learning was that NIMH Director Thomas Insel owed Nemeroff for a favor he’d done for him when he’d lost his position and put in a word for him with Pascal Goldschmidt, MD, UM’s Medical School Dean, convincing him that the benefits in the man’s skill at fundraising outweighed the risk he carried. Meanwhile Insel quietly revised the NIMH conflict-of-interest regulations, and Nemeroff sits on two advisory boards that decide or influence which scientists get research funding.

Nemeroff’s current department is back in the Medicaid business overseeing a multi-million dollar contract which oversees 900 providers 30 hospitals, and 100 CMHCs (Community Mental Health Centers) trusting him with state funding again even after his HHS/CMS violations here in Georgia. While Nemeroff sits on easy street the whistleblower has spent years of his life fending off numerous frivolous legal challenges thrown at him by a judge who was in Emory’s pocket, unfairly placing a gag order on him while not evenly applying the same constraints on Emory whose various officials have given a number of media interviews about theirs and Nemeroff’s side of the story.

Emory holds a tremendous amount of power in Atlanta and throughout the state of Georgia so it’s no wonder that its top-level executives feel they’re above the law. It’s bad enough that they feel free to tamper with research and NIH/NIMH funding and go after people to cover up the skeletons in their closet, but the epitome of low-down and dirty that they’d resort to such tactics against patients! To attack a patient may prove to be their undoing. That is a bridge too far. Here’s one porcupine they’d best leave alone. I’m sure this is just the tip of the iceberg.

 

Emory Patient Banned for Giving Negative Feedback

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“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

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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

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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

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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.

Patients’ Lives Matter

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Emory Do The Right Thing - Word Photo DSC_0009

“First they ignore you.
Then they ridicule you.
then they fight you.
And then you win.”

This saying has often been attributed to Ghandi but some version of it has been repeated by a number of people in activist movements the first of which is believed to have been Nicholas Klein of the Amalgamated Clothing Workers Union said in 1914.

It is especially fitting now for as I’d suspected the offending parties are in fact reading my blog. I got confirmation of it today in a letter dated March 21st, the envelope of which says “Administration”, and inside top left-hand corner says “Office of Quality & Risk”. Apparently T.Js Supervisor decided to write and tell me to shut up, himself. He says and I quote; “This is a response to the various concerns you have continued to raise to several individuals within the Emory system regarding your medical care and treatment at Emory University Hospital on December 3, 2015. At the outset, I emphasize that we thoroughly investigated your complaints properly considered your requests, and responded in writing to them. I direct you to the response letters from Emory regarding these matters. Further, we have performed additional reviews after learning you were not satisfied with our response.”

Interesting he should say they’d done “additional review” as all I was told by TJ in her nasty, unsolicited and retaliatory phone call was that she’d already finished her “investigation” and that “nobody is going to call you back”, (before talking over me and rudely hanging up). There was no chance to ask any questions or raise further concerns, and it was clear she in no way wanted to accept any more nor to help solve any. That was the last correspondence I had from anyone in that capacity.

I received no letters showing any evidence of further investigation nor were any of the gaps addressed in their investigation that I’d pointed out. Many questions remained unanswered and he never returned phone calls I’d made to him when I got the initial response showing that his subordinate had not done a fair and complete investigation. Then he goes on to say; 

” While we remain apologetic that you have been dissatisfied, please know that our conclusions and decisions regarding your aforementioned complaints and requests have not changed since the time of the response letters. Please also understand that you continuing to raise the same complaints and requests to different individuals within the Emory system will not change our conclusions and decisions regarding these matters.”

So in other words he as agent for Emory will not remove the libel from the ER record, amend the record, bar the offenders from accessing my record, nor take any other actions to protect me as a patient, nor take any disciplinary action against those who participated in the abuse and neglect even if the CEO himself were to insist on it. (That was who’d I’d written by the way; the head of the corporation. I did not know at that time there were two; one for the University side and another for the medical side, so I mistakenly wrote the wrong one first and then was directed to the one for the healthcare side).

 Then he goes on to say this…”If you have any new or additional complaints or requests regarding any medical care provided to you at Emory at any time, please let us know. As we have done with your complaints and requests up to this time, we will thoroughly investigate the complaints, properly consider the requests, and respond in writing to them. We have assigned Ms. T.J., Manager of Patient and Family Advocacy, as your point of contact regarding your complaints and requests. Ms. J can be reached at (phone number).”

As it will be when pigs fly before I ever enter their ER again, Ms. T.J.s “services” will not be needed. She is not allowed to tamper in other areas and if I catch her doing so it is a further violation. 

He goes on to say;

“We do ask that you focus and limit your communication to Ms. J so that we can ensure none of your concerns go unnoticed and so that we can manage your communications with us in an efficient and effective manner that does not detract from our goal to provide quality medical care and services to our other patients and families.

We are aware that you have posted and discussed online at patientsrigtsadvocate.com your complaints and requests regarding your medical care and treatment at Emory. While we respect your right to express yourself, we request that you remove the specific references to Emory and our personnel. We also encourage you to direct your complaints and requests to Ms. J in lieu of posting them on your online blogs.

Moreover, as we have stated in previous correspondence to you, it is our expectation that our patients have positive experiences while under our care, and we deeply regret that we disappointed you. If you truly remain  dissatisfied and feel that we at Emory have not appropriately met your expectations, please know that you can always seek out your medical care and treatment elsewhere. We do thank you for reaching out to us to express your concerns and for giving us an opportunity to look into them and to continue respond to you.” He then signs his name, LOL.

OK…Now let me get this straight…

First they neglect and abuse me in their ER, then libel me in my records, then refuse to correct their rights violation, turn my own doctors who I’ve known for years against me, play all sorts of dirty tricks to cover it up and sabotage my treatment at Emory and out  and because I write about my experience in my blog he wants me to remove it? Aaaah…Nope, I don’t think so. After a full and complete investigation I find everything to be correct and complete as is.

So sorry you aren’t satisfied.

But hey, if you really did nothing wrong then what are you worried about? I stand on  my principles.

One has to wonder why little old me, one patient in the entire Emory system has that much power that he implies to warrant that sort of extreme knee-jerk (sorry for the pun) reaction (just a strong reflex, I guess).

Me thinks maybe there’s something a bit deeper going on which has nothing to do with me and that even I do not know.

Oh, and the best part…I’m starting my treatment very soon! (from someplace else that is taking me seriously despite all the dirty corporate  tricks and  unprofessional  attempts to distract, dispute, and derail me from my goal).

The Poisoned Pill; Chronic Illness/Disability Shaming as Cultural Norm

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Phrases and affirmations for and about the chronically ill or disabled can be healing or they can be insidiously hurtful. A recent video I watched about society’s shift in perception of the chronically ill got me thinking about just how we got here and provided some insight into those factors that have eroded empathy and created a cynical public perception of those whose illness or disability does not go away in an allotted “socially accepted” period of time. In the video The Slow Death of Compassion for the Chronically Ill a number of sociological factors are discussed which over time have affected how the general public views those who don’t “overcome” their disease or disability.

The media bombards us everyday with messages and stereotypes of people who have overcome and “beaten the odds” while the subtext beneath the surface suggests that those who don’t are somehow weak, not trying hard enough, not positive enough, or are undeserving of understanding and acceptance. The underlying message is that “if this worked for me it must work for you, and if it doesn’t then there’s something wrong with you!” This message is so woven into our culture that we may not even recognize it when we see it, and may pass it onto others without even knowing it.

Consider these phrases for a moment. When you really pay close attention how do they make you feel?

“It could be worse”

“Are you still in bed?”

“You just need to change your attitude“

“You need to change how you think about your disease”

“A pity party”

“wallowing“

“Move on“

“Suck it up“

“Don’t let it bother you”

“We can’t change what happens to us but we can change our reaction to it.”

“You’re doing it to yourself.”

“Complaining is only hurting you.”

“Just forgive.”

“Stop being so negative”

“You don’t look sick”

“You just need to exercise more.”

“Pain is unavoidable, suffering is optional“

“Don’t give illness your attention by repeating the story of it over and over again. Focus your attention on other positive areas and often illness will get the hint and go away.” J.J. Goldwag

I highlighted the key subtexts in red to signify that while these statements may appear on the surface to be supportive they in fact contain messages that undermine one’s sense of self-worth, leave the person feeling inadequate, wrong, or as though they brought the condition on themselves or are somehow to blame for it or are not doing their lives “right”.

These are words of judgment, not of support, and we  need to recognize what’s being passed along and the messages they contain which are toxic to others who are going through legitimately hard life circumstances. Platitudes are not what people need when in pain, when symptoms are at a fever pitch, and on those days when everything’s just too much. To family, friends, and supporters; Just giving the person a hug or acknowledging the validity of their struggle goes a long way. Don’t tell them to stop, because if they could they would. This is what they’re going through in real time.

There is no such thing as a good or bad way to feel about one’s illness or disability. Feelings just are and no they’re not like a water faucet. Only sociopaths can turn them off at will. For the rest of us we get over them when we get over them…in our own time-frame, and that’s OK.

Sometimes achieving a greater sense of peace requires better medical treatment for the condition and when the pain subsides the irritability or fear subsides. Sometimes other factors are keeping the person in a state of unrest and it won’t let up until those factors are ameliorated. Things are not always as simple as they appear.

Anybody who tries to tell you that you should just make up your mind “not to feel this way or that way” and tries to imply that when and how they think you should and if you can’t do that then you’re not good enough is not being truly supportive.

Anyone who tells you that you need to change to see or do things their way in order to be acceptable is not loving you unselfishly and they’re not valuing you for who you are. Your process is exactly that; yours. People need to respect that.

The image of the impenetrable stoic ill or disabled person is a hollywood image that no real person can ever live up to.

The person who never cries, never lets them see you sweat, never shows you their down days, the days when they can’t take it anymore, who only lives and speaks in positive affirmations, never gets irritated, never asks for anything, and never gets scared, and always gets things done yesterday simply doesn’t exist. Not being that completely mythical person doesn’t make you weak, it makes you strong because you’re authentic; not hiding behind a mask just to make those around you comfortable.

Sometimes it seems that being kind is a weakness, because of all the cruelty in this world. But being kind it's who you are and the people who love you, love you because you are you. Click on this image to see the biggest selection of life tips and positive quotes!:

Chronic illness and the societal expectations that go along with it are hard. Whether it takes you 1 day or 6 years to feel better it is not your fault. You’re doing the best you can with what you have to work with. Let them see the pain you live with because that’s the only way to make the invisible visible and believe it or not it helps all of us and helps the non-ill to understand and to develop empathy. This in turn will make the world a kinder and more compassionate place, not only for us but for the generations that come after.

The best gift we can give to others in this community of chronically ill/people with disabilities is not to pass on those harsh judgments and expectations we get from the rest of the community at large, not to project them onto our bothers and sisters, because to do so leaves others in a very desolate place and in the end hurts everyone.

There are those among us who are the soldiers in civilian life, those who live out loud in order to make things easier for the next chronically ill person or person with a disability. While the harder aspects of our private lives are not pretty these are individuals who sacrifice so that others who feel more comfortable playing it safe won’t have to. They are not complainers. You never know when you might receive a badly needed medication, service, test, or treatment because of the efforts of activists within this community.

On a personal note; I heard today from the nurse doing assessment for one of the Medicaid waiver programs and also got an unexpected phone call from a mobile doctor’s office affiliated with another program I’d applied for and both will be out tomorrow. It sounded as though there’s a possibility that the mobile doctor’s office could order the IV Saline treatment. I told the woman on the phone my situation about having gone untreated for the past 4 months and that I’m a little leery of doctors right now. Apparently there are two doctors, I believe, one African with a name that was nearly unpronounceable and one Hispanic, and several nurse practitioners working for the company which is a mom and pop operation. I didn’t even know there were places like this anymore that made house calls. The husband and wife owners are the ones coming out here around noon to get me established.

Today I’ve been having quite a bit of pain and pressure in my jaw. The TMJ seems to be getting worse, and so do the GI problems. Now it’s as much upper as lower GI upset. It’s taken all day before those died down enough to eat. I need to really have the Gastroenterologist to check me for Gastroparesis. More and more frequently my food is not digesting and instead sitting and fermenting in my stomach.

Preparing for the Transfer

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22 Kt. Heart

I know nothing stays the same, but if you’re willing to play the game it will be coming around again. So don’t mind if I fall apart, there’s more room in a broken heart…Carly Simon

The day before yesterday was one hell of a day. The appointment with my pulmonologist was to some extent a repeat performance of my last meeting with my GP.

Some may think that because this blog’s focus is on experiences (often bad) in the healthcare system and on patient’s rights that I am just angry, but in truth I’m not. Emotions are part and parcel of the human condition and I don’t shy away from them, but what I feel is more frustration, fear, and grief that although it would be so easy in this situation for those in positions of authority to make things right, instead they make the decision not to at every turn, and in their opposition they prolong physical suffering unnecessarily.

Doctors, when you see signs of disease document them, don’t just have verbal conversations with the patient and not put down a diagnosis if treatment depends on it. If you discover later there were procedural mistakes, then for Godsake amend the record! Untreated disease will continue to tap you on the shoulder until something’s done about it. It waits for noone. Leaving the patient on their own with it to twist in the wind is never the answer. If I seem a bit on edge at times, then this is why.

If you’ve ever had a pet who is injured you will understand. They may bite if you try to pick them up, not out of anger but because they’re protecting the part of their body that hurts. It is just instinct; not intent. Humans as well become quite to the point when there’s little more time to waste. This is nature’s way of motivating us to stay on task to find a way out of peril so that we can survive. When the struggle for self-preservation stops then you really have to worry.

While I am an activist this is not all that I am. Some may view me as a radical but if that’s all they see then I haven’t communicated my point effectively. I’m a mother, an animal lover, an artist, and a writer.  (The broken heart at the top is a component I cast in 22 Kt. gold years ago from a mold of my own design. The line created from it was about regeneration in the face of adversity). Most of all at the core I am soft-hearted and fundamentally believe in the goodness of people and man’s ability to change and transform. I also believe that not everyone’s path is the same, nor should it be, as we are all individuals.

I am more apt to assume that people are with me when they aren’t than the other way around. It is actually because at the core I think positively that I am like this. This is why I often give people in my life maybe more chances than I should.

I try to stay on topic in this blog because the atrocities that take place within healthcare are what I’m trying to shine a light on so that there can be social change. While I am telling my story, this is not just about me, but about so many people who, like me, end up sidelined because of a broken system that leaves little room for tolerance of differences, individual needs, and those who don’t fit the mold of what doctors, insurance regulations, and levels of government who set the laws and rules dictate. There is no manual for the human body and yet there persists the false expectation that there is within the medical field.

The chubby black nurse with lots of tiny braids came in and took my blood pressure, charted a few stats on the computer and then handed me the standard sleep questionnaire to fill out, watching me impatiently.

“He’s running on schedule so I don’t want it to eat up your time. He can’t spend an hour with you” she blurted out rudely.

I narrowed my eyes at her not knowing what brought that on. I never knew how to fill those things out anyway as my sleep/wake pattern is all screwed up from day to day. She told me to average it out, her voice growing ever more impatient.

“Is Z here today?” (another nurse) I asked her.

“No” she replied. “She’s off for a few days.”  I thought back to our last phone conversation and suddenly had an uneasy feeling.  I’d told her what had recently transpired and told her that I was going to need the pulmonologist to take over all the order writing. She understood. There was no mistake about it. She’d been open and empathetic and she was hearing me in a way she hadn’t ever before. When I asked for verification she said “Yes Ma’am” in a way that conveyed that now she understood the gravity of what I was up against.

In the past she’d told me this doctor thought for himself and didn’t think he’d buy into the buzz, but in this last conversation I remember telling her I was glad he was not one to buy into group-speak and that he was the only one left, that I was glad that he at least believed me. On that she didn’t respond to reassure me as she usually had.

I never got a call back from her regarding his answer. Then about 4 or 5 days later (the day he’d refused to do the two referrals) another nurse had responded on his behalf on the Patient Portal. When I’d asked where Z was I was told she’d asked off.

Did she know what awaited me at my upcoming appointment? Perhaps she did and couldn’t bear to be there to watch what was about to unfold and didn’t want to go along with hurting me.

Once the nurse in the office left the room with the clipboard in hand I waited in anticipation that at least he was still with me as he’d indicated on the Patient Portal…or so I hoped.

Medicine is more than the mechanical fixing of bodies. It’s about a partnership between doctor and patient and when one is chronically ill this becomes even more crucial. Often along the way that human aspect gets lost in the process. Above all patients need hope when going through a difficult and long diagnostic process and they need to know that whatever happens their doctor is there for them.

The other day even though he’d refused to write the two referrals I’d sent him the information on (Vanderbilt and the Undiagnosed Diseases Network), I still thought positively that he hadn’t diverged from me. Maybe he just wanted to see me in-person before writing any orders or referrals, I reasoned, or maybe he just felt that it was the GP who should have done this. I tried to believe that there was a reasonable explanation in every way I could.

Not long after the nurse had left he knocked briefly and entered the room.

His face was red at the top of his cheeks just under his eyes. Because I am close with him I knew that was a tell. Even still I powered through, tried my best to ignore it, thinking maybe it was just a temporary bump in the road. I had a smile on my face because I was genuinely happy to see him and I still considered him a confidant until such time as I knew otherwise. I was willing to give him a chance, to hear him out before passing any judgment. Even with some weird vibes I was picking up I couldn’t switch gears that fast and suddenly be unhappy with him. There was a history there. He had helped me in the past, maybe more than any of the doctors at Emory. I had the impression he genuinely cared.

“How are you” he asked looking at me from across the room as he sat down in his chair. He made eye contact, but I just couldn’t block out the distracting reddening in his cheeks and kept looking there instead of his eyes.

“Not good. I’ve been feeling pretty bad with this Dysautonomia not treated for the past several months. I’ve nearly passed out several times in the past two weeks.”

“You’re smiling” he said, nodding. I didn’t exactly know what to say to this or why that was significant to him. I grappled as best as I could to find the words, but failed miserably in fully explaining. I communicate better in writing than I do verbally.

“Well things went well yesterday. The nurse practitioner told me that she didn’t think I was nuts, and apparently Dr. V validated my Dysautonomia, so that’s progress.”

“You’re smiling” he said again, a little louder this time, almost cutting into the end of my sentence. I wanted to ask him what his point was but I didn’t know how. It was as though my brain stopped for a moment. I could think it but the words wouldn’t come out of my mouth. In the time I’ve known him I have grown very attached to him and in the past he has always been willing to do whatever he could to help me. All I had to do was ask. I told him just the other day on the Patient Portal how much I appreciated that, and suddenly as if the rug were pulled out from under me all that was gone.

I tried to push the gnawing insecurities aside in favor of logic. How could a strongly positive doctor/patient relationship go from 100 to zero in just a week’s time, I wondered? As I sat there across from him something didn’t feel quite the same.

“What is your understanding of the situation right now?” he asked. “Do you think Neurology is moving forward in getting the answers?” It was one of those statements masquerading as a question. I could feel it yet was unsure exactly what he was going to say although I grasped that it wasn’t good.

“Well it’s too early to know for sure. I just started with them, but Dr. V. definitely picked up on something of the underlying condition. She just isn’t sure what it is yet. She’s only seen me once, so hasn’t even had time to investigate very far before going on maternity leave.”

The pulmonologist shifted in his chair from side to side, not a good sign. “She was hanging her hopes on it being the Sarcoidosis.”

“Yes, and it turned out not to be that” I answered the question for him. The red in his cheeks continued to spread outward. “The Gallium Scan was clean” he said with almost an eeriness in his voice.

That meant it wasn’t in acute flair but he seemed to have a much more ominous take on it.

The significance for him seemed to take on an almost supernatural quality to it and I could tell it scared him. We live in the bible belt here in Georgia and one always has to consider that doctors in this part of the country may read in a religious significance to explain things that as of yet are medically unexplainable. That is yet another variable that can and does interfere with trust within the doctor/patient relationship; the good vs evil dichotomy.

“It was the inconsistency in the exam that concerned me” said the Pulmonologist, his cheeks reddening further. At this point he was looking kind of ill himself. I knew what he was thinking because doctors are trained that way.

I felt the need to reassure him that I had not been taken over by some strange evil force and that there was and is a reasonable explanation, that we just needed to find out what that is. There is a confounding variable neither he nor Dr. V were taking into account which elicits inconsistency in an exam, but the growing sense of mistrust and feeling of utter futility held me back from telling him what it was. I opted for the simpler of explanations.

“This is just the beginning”, I continued. She’s just started with me. Sometimes it can take as many as 6-8 years for patients to be diagnosed. I sure hope it won’t take that long for me, but the point is that alot of people go through this. It’s not that uncommon for things like that to come out negative or inconsistent, but at least they can start by treating the Dysautonomia since they know that the Saline helped when I was at Piedmont. That would be a start.”

It was all he could do to stay put in his chair. He seemed to be grappling within himself pulling to one side, then the other. I could imagine opposing dialogue going on in his head.

“You keep coming up with that word; Dysautonomia!” his speech accelerating and growing in urgency. “There’s no evidence of Dysautonomia.” (pregnant pause) “that’s your perception. That came from you. She said by patient report.”

“What do you mean no evidence? “It came from Piedmont” I replied. “Didn’t you see the BP stats that were entered into the electronic records system? My blood pressure was all over the map for 11 days, measuring it 6 times a day!”

“That could be anything. A cardiologist would have to determine what that is….and you need to consider that this could also be…psychological. I would recommend seeing a Psychiatrist and a Cardiologist.”

“Well it sure isn’t in my head. Believe me, I went that route first, as I had problems on my left side a number of years ago. The therapist suggested I get it medically checked out because she didn’t think it was psychological.”

“It can reoccur.” he replied ignoring the fact that I’d said it had been ruled out.

“Blood pooling in my feet? Pictures I sent Dr. B. on the portal.”

“There’s no evidence of Dysautonomia. That’s your perception. They have to do tests for that!” at this point seeing he was losing this argument but sticking to his story so as not to lose face.

“They should have done that testing 4 months ago. I’ve been telling people this since I was discharged from Piedmont in November. The doctor there had a conversation with me about this. It didn’t come from me, it came from him. He just didn’t document it and I didn’t know that until I got the records later. I believe it’s secondary and that it and the movement disorder are all part of the same syndrome. They need to find the underlying condition.”

“If there is one. Why not see a Cardiologist?”, he said.

“I could. That’s another reason to go to Vanderbilt. They have specialists there and I’m sure they have Cardiologists there as well as Neurologists.”

“You could see one here… or at any place locally. You don’t need to go out of town for that.” I wondered why he was so wedded to the idea that I stay here in town for such an evaluation.

“The thing is if I went to just any Cardiologist they may be too general to recognize this. Many Cardiologists are generalists and they have many other heart related disorders to focus on. I need an expert who knows what to look for.”

“I would recommend doing it here.” I’m sure he would, I thought, beginning to feel as though he wanted to control the situation. Odd, given the fact that just a few days previously he’d taken a hands-off approach.

“Then my chronic constipation, the fact that I’m thirsty constantly, how can you say there’s no evidence?”

“That could be dehydration. Dysautonomia is extremely rare statistically.” He seemed genuinely afraid and holding onto this denial for dear life, like a security blanket, although I wasn’t sure why. The whole time we’d been talking I was drinking water and sucking on ice cubes.

“Well why am I dehydrated? As you can see I’m drinking ice water constantly. I have a cup with me at all times and yet I’m still thirsty.” He was out of excuses and just looked at me seemingly frustrated. He asked about Dr. B. and I said “He’s gone.”

“Gone? What do you mean?”

“I mean out of the picture; gone” I did not elaborate.

“He’s not your primary anymore?”

“No, he was doing me more harm than good anyway. You see, nothing was moving. My treatment was going nowhere. I tried to tell him but he wouldn’t listen. I’ve been untreated for almost 4 months now and I can’t wait much longer. It’s getting worse.”

“Untreated for what?“

“Dysautonomia.”

“And you really think Neurology is helping you?”

“According to the Nurse Practitioner she is supposed to be good and I was told she thinks outside the box. I figured I’d give her a chance.”

“OK then, I’ll take a back seat to Neurology then and just follow what they’re doing with you.” he replied seeming somewhat offended or hurt, I couldn’t tell exactly which. “I still think you should see a psychiatrist” he threw in for good measure.

“I just don’t want to cloud the issue. I want this looked at on it’s merits. There are several problems in seeing a psychiatrist. Every specialty tends to look for what they specialize in and they can’t bill insurance for situational problems so that motivates them to fudge and give you a psych diagnosis when you really don’t meet the criteria. Would it make any difference at all if a psychiatrist wrote a letter saying that what is going on with me is not psychiatric but medical?”

“Yes” he said emphatically, “It would help alot”. Somehow his words rang hollow as soon as they’d been spoken. I found it hard to believe that he could ever go back to the way things were before. A line had been crossed and another rung of trust broken. Even if he could go back I couldn’t. It scared me that he could so easily go from supporting me 100% to being so determined not to support me. It was like the air let out of a balloon. Knowing that deep down he was not trying to rule it out but rule it in was what hurt most of all. The way he looked at me just killed me; a mix of irritation, amusement, and pity as though I had wasted his time.

“I feel like you don’t believe me” I said. I wasn’t smiling now.

His face clouded over and he looked through me rather than at me. “Ms. Carlington” he said with a forced new formality “I need to move on” he stated dismissively looking somewhere to my right, then avoiding my eyes and looking to my left.

The first level I perceived right away (move on as in to his next patient), but then I picked up something on a deeper level.

He was officially uninvesting himself in me and though I was still technically his patient I’d clearly been relegated to the cutting-room floor.

A thousand pieces of paper wouldn’t change anything now with his resolute mind-set and knowing, that psych is a soft science and based more on individual clinical opinion than provable fact, to take that particular piece of advice and gamble with my future could put the last nail in my coffin.

 As both of us exited, he to the left, and me to the right he called back over his shoulder that I should really get a new Primary Care physician to coordinate all these specialists and I told him that with managed care and heavy caseloads I really don’t know if one would, so I wasn’t in any great hurry to do that. It didn’t work out for me the last time. He said that’s what they’re supposed to do. Yes, I thought, they are supposed to.

I went to the front checkout desk where the young receptionist with the long wavy black hair and black-rimmed glasses greeted me with their customary “Did you have a nice visit?”

“No, not so much. Not this time. I feel a bit uneasy.” She got on the phone to ask the doctor when to schedule me for my next appointment.

“Six Months” she said as she turned toward me. I winced. (It was usually more like 2-3), but still feeling that sense of futility I didn’t ask her to make it earlier, only asked if I could if I needed to, and she said yes, that he was here 5 days a week and if need be it wouldn’t be hard to get an appointment should something come up.

Yesterday Dr. V finally responded through her Nurse Practitioner, but since she’d not heard of the IV Saline treatment she told her she wouldn’t authorize her to write the order “at this time”.  None of the other items on my list of priorities (other than the med refills) had been addressed, so I wrote back and asked if she had authorized her writing the referral to Vanderbilt, and provided her several pieces of information about the treatment and contact info for two specialists familiar with it.

Yesterday I got the name of a guy at another specialty clinic out of state and am waiting to hear back, as he is out for the week. The office is supposed to call when he returns. All the pre-registration was taken care of over the phone. If I don’t see some action out of Emory Neurology soon I’ll go that route, as he seems to have diagnosed lots of people who had the same experience I’m having now and there you don’t have to have a referral. As gut-wrenching as it is to be losing doctors I’ve known for years locally I wonder if maybe, just maybe with doors closing at Emory, another window is about to open.