I haven’t written much here lately about how things have been going as far as getting to Vanderbilt Autonomic Clinic, because I was under the impression that it was just a matter of time and having my current GP fill out the forms involving Medicaid’s part in making it possible and I didn’t want to jinx it. After the Rheumatologist punted it back to the GP, stating it was a primary care doctor’s job to handle that type of thing I had called her office in late August or early September an employee of hers got off the phone and had me on hold for a few minutes, then came back to the phone and informed me that the GP had agreed to do it since he had declined.
I was told that a secretary (whom we will call Little V) had been assigned by the doctor to work on the forms. At that time my appointment at Vanderbilt was to be on Wednesday, October 4th, 2017.
Each time I followed up to see how it was coming along she claimed the forms had been submitted on their website but that she didn’t know what was going on with the Medicaid paperwork and that she couldn’t get in touch with SR (the woman who was the original contact person at Medicaid).
When time started getting short and I emphasized that we had to hurry to get everything arranged before the deadline she claimed that she’d spoken with this contact and that she had told Little V she didn’t get it, and to submit it again. Little V’s story was that she then did that (submitted it a second time) on their website.
After numerous calls to Little V to follow up on the progress of this “second” submitted paperwork she told me that SR received the paperwork this time submitted through the website once more. During all this Little V seemed quite vague and strangely unconcerned and detached. The deadline ran out with only a few days to spare, so the appointment at Vanderbilt had to be rescheduled again for Wednesday, January 23, 2018. Now she had 4 months’ notice to get this completed, signed and submitted.
I called Little V again several times about 3-4 weeks in advance between October and January, getting the same vague responses from her, the deadline ran out and it was reset for Wednesday, March 21st.
At this point something was not adding up but I wasn’t sure where the problem lay so I called the Medicaid Commissioner’s office and spoke with a woman in that office named VH.
VH and I were trying to determine whether the website was malfunctioning or if the problem was on Medicaid’s end and not being processed since Little V swore up and down that the forms had been submitted properly 3 times on their website.
VH then put me in touch with two more people with Medicaid, JP (head of their transportation Department) and CF in Member Services, somewhere around March 8th, both who certify that absolutely nothing shows up in their system. That was when I began to really wonder what was going on.
During the course of their calling and trying to help little V get this paperwork through to them the secretary (Little V) then came clean to CF and told her the paperwork had not ever been submitted, yet she didn’t tell them why.
On Wednesday, March 14th I emailed Little V at the GPs office and asked why I still hadn’t heard anything and said that if she needed help she should ask somebody in the office.
JP with Medicaid called and spoke with her several times asking what he could do to help and even emailed another copy of the paperwork; both forms as an attachment and a copy to me. He also provided her with his fax number.
Little V told JP that J (someone else in the office) would be helping her, and he suggested I call and ask for her to follow up, (which I did on the morning of the 15th), but Little V told me she was out that day. I also reported another urinary tract infection that needed treatment, and said I didn’t want to have to travel with a urinary tract infection since the date was fast approaching and there was no time to come in beforehand. I also asked if she could have her submit the prescription around 1:00 or 1:30 so that my aid would have time to pick it up before she had to leave to go to her next client by 3:00 PM.
I asked if J was the nurse and she said no, she was another receptionist, but that she would give my message to the nurse. I called back when I didn’t hear from the nurse after several hours and Little V answered again stating she’d spoken with the nurse and she’d send in the prescription for antibiotics by the end of the day.
Little V claimed it had been sent in electronically at the end of that day and that I should just have my aid pick it up in the morning if it wasn’t showing up yet.
The Pharmacist at my local CVS checked and there was no such prescription submitted. She told me that it would have shown up by then if it in fact had been submitted.
In regards to the paperwork she seemed to be completely unfamiliar with what she was doing and asked me “What is this for?” It was as if she had not ever read any of this, much less filled it out! I had to spell Dysautonomia for her and tell her what it is because she had no idea. By this time I knew something wasn’t right! It was as if this was the first time she was ever laying eyes on these papers in nearly 8 months and she only began to try to fill in the material when Medicaid officials started questioning her and pushing so that we could meet the deadline.
I sent an email to Little V to ask the doctor to call JP or CF, the two from Medicaid if there were any questions about the form. I gather she probably did not get that message to her.
She’d claimed to JP and to me on the 14th that she’d fax the completed paperwork to him in the morning of Thursday, March 15th but he called me to say it had never come in. Little V claimed to me once again afterwards it had been faxed to him that morning.
I called CVS pharmacy again first thing in the morning on Friday the 16th and the pharmacist verified that no new prescription was showing up in their system, neither that morning nor the evening before.
Luckily another receptionist other than Little V answered the phone on Friday after I’d spoken with the pharmacist and got the nurse on the phone for me, whom Little V had given no message to about my urinary tract infection at all from the previous day.
In fact, the nurse told me that she hadn’t even been in on Thursday and that Little V never spoke with her at all.
Little V told another lie saying to her that she had left an answering machine message for me Thursday evening (which is blatantly false, as I checked and there was none on Thursday night nor through the weekend).
Then when the nurse gave the phone to her, Little V changed her story and told me she “meant” to leave an answering machine message for me.
At that point I had heard quite enough BS and asked her why she was doing this and why when she had all this notice was this paperwork not getting done, to which she merely said “I don’t know.” I asked how could she not know when she was the one this was assigned to! She offered no apology and seemed to have no grasp of the gravity of this situation.
I asked her why she was lying to me and others when this consult is crucial for my healthcare. She had no answer to that. I told her that someone other than her needs to be handling this because clearly she isn’t getting it done and that I do not want to miss the opportunity since Vanderbilt has accepted me and this makes me look bad to them even though it was not my fault and that the Medicaid people even wondered if the doctor was the hold-up until we figured out it was Little V.
If I hadn’t gotten hold of another receptionist and then the nurse on that Friday I don’t know how long it would have taken before I could get this information to the doctor or have my urinary tract infection treated. My appointment date for Vanderbilt had to be rescheduled for June 6th 12:00 Noon for testing, and a 2:00 PM consult with the autonomic specialist. That leaves a little less than 3 months to have these papers completed and submitted to Medicaid.
I breathed a momentary sigh of relief when the nurse told me that Dr. H wanted me to come in and that the doctor would fill out and go over the form with me while I was there to make sure everything was completed successfully. She said I’d be in and out and it wouldn’t take much time at all to be completed.
Little did I know, this nightmare was anything but over…
I arrived under the distinct impression that this problem was finally going to be resolved and the barrier removed, but when I was called to the back first two medical students came in, took my vitals and started asking me about my transportation. They handed me a form and asked me to fill it out. At first they asked how I got there to her office. I guess both they and I thought this was a new Medicaid form for local transportation, but after I filled out a small part of it I noticed it said at the top “out-of-town transport” so I told them what I’d told Little V just last week, that the guy from Medicaid had said to fill out and submit the Medical Necessity form first, and then once Medicaid approved payment to Vanderbilt, then it would be sent to their transportation department to work on the transportation form.
Then they sent Little V in (after I’d told the nurse to have someone else handle this since she seemed incapable of getting it done). I explained to her once more like I had on the phone that the Medical Necessity form had to be filled out first and submitted before the transportation form.
What transpired after I said this to her was very strange. She then explained it to me (as I had her) not once but 3 times! This was not the kind of repetition someone does when they’re just trying to clarify something in their own mind but it appeared to be as though she had confabulated that she was truly explaining it to me as if I was the one who didn’t know. Had she literally forgotten that I’d just told her the very same thing? “I just told you that!” I said emphatically. I was under the impression that the doctor was going to complete these forms. That was why they told me to come in. You are just not getting the job done” I told her frankly, so she left the room.
Just then the young female student came back in (the one who’d been in earlier to take my vitals). I took her aside. “What is up with Little V? Does she have a closed head injury or something? I explained to her the process that the Medical Necessity form had to be done and submitted first and then she explained it back to me as if she was the one who had come up with it and as if I didn’t understand. I was the one who told her that just seconds ago! Seriously, what is wrong with her! She had been telling me a number of things I recently found out weren’t true when I checked them out. I don’t know how much of it is intentional and how much is something else wrong with her but something’s not right. This is downright wierd!”
The young female student looked a bit at a loss and stammered a bit, at first saying maybe she was a bit confused, to which I said, “Yes, but not merely confused about this, I mean she’s confused mentally!” This was not inspiring alot of confidence. Here I had a very crucial medical consult that I absolutely must get to, no ifs ands or buts, and there was this level of incompetence in that office yet nobody could give me a reasonable explanation why. I thought, for Godsakes tell me she was in a car accident, or took the wrong meds or something, as long as it’s the truth, but let me know what the hell’s going on and is this going to be corrected!
The male and female student bided their time while we waited for the doctor to come into the room and asked me various questions that were unrelated to this medical condition I was there about just to flesh out the chart. After about an hour the doctor finally sauntered in.
She looked at the forms on her desk, then barked in broken English with her thick Russian accent, “What’s this! I don’t know what’s this thing” as she waived it dismissively in the air in front of her. I responded that she could get help from the two contact people at Medicaid. They would be able to help guide her through the process since they know their regulations. She waived this offer away gruffly, “I do not know this. This is not my expertise. And it says here diagnosis. I don’t have a diagnosis…”
“Well that’s the whol point of going” I said. “The people at Vanderbilt are experts in this and nobody here locally is, so I won’t get a diagnosis until somebody steps up and gets me there to people who know these conditions.” I turned to the issue of why it seemed she was like a deer in the headlights after I’d been told for 8 months that she’d fill this out. “People have been telling me all this time it was being done, even that it had been submitted on Medicaid’s website 3 times, and then faxed to the guy at Medicaid just the other morning!”
The doctor was decidedly non-responsive. “Well I want to fix this now! Nevermind all that.” Then she deflected and turned on me accusatorily,”I don’t want to hear about it anymore! I told you when you came in here in the beginning don’t bring these papers to me!”
“Well, then why after the Rheumatologist told me that you should be the one to do it since it is something a Primary Care doctor does, and he sent the stuff back to you, why then did they tell me if he wouldn’t fill them out you would if in fact you wouldn’t? I think I deserve a straight answer. Was Little V giving you any of this information for the two contact people at Medicaid and have you spoken with them? Have you looked at the BP stats from the Piedmont hospitalization?”
“No, I have not. It is not my expertise!” That was her go-to out whenever she didn’t want to do something. “You don’t have to be an expert to look at those blood pressures and see something’s not normal! You certainly know enough to know that when you see it. My blood pressure was all over the map for 11 days. I was lucky that they actually were able to have me in an in-patient setting to measure it so many times a day. Otherwise, God knows if they would ever have caught it while it was happening. The whole problem is that once they identified it they never charted what the doctor told me verbally about it and saline as treatment for it, so that made me look like a fool to other doctors. That set off a whole snowball effect of things bungled.”
“I don’t have time to pull the chart until a patient is in here.” My jaw dropped. So she hadn’t even bothered to look at the data that has been documented, all she wanted was a ready-made diagnosis handed to her.
“There is some data there if you’ll look at it. Yes, alot of previous doctors bungled this and didn’t chart stuff they should have and charted stuff they shouldn’t have, but the fact that they left things out that they said verbally should not be something I should have to pay for. I didn’t expect them to leave all this out. I didn’t expect to have people say one thing to my face and something else (or nothing at all) documented in my chart. This is not fair to me to have to suffer because of others’ mistakes or bad decisions.
“I know it’s not fair to you but it’s not fair to me either.” It obviously didn’t occur to her that she’d be OK but I won’t. “Who gave this referral?” she barked.
“I told you who gave it. It was the iterrim GP after I left Emory who submitted it.”
“Let me look at the Record from Piedmont. She was at Piedmont, right?”
“Yes, be my guest, but it’s not very helpful, I can tell you right now.”
She pulled it up on her laptop and looked through the few entries. “There is nothing about her making the referral in her record, just you asking questions about it. Did you make the referral or did she???”
“No, I did not. She did. You cannot refer yourself to Vanderbilt” I said. “They send the patient a questionnaire and then the doctor the referral form. Look, I am not just making this up! I saw the papers! She showed it to me before filling them out! I can’t help it if people aren’t charting stuff properly. That’s what got me into this mess in the first place!
“I’m not saying you are. Where are they! Do you have them?” she said in a demanding tone.
“No, she never gave me a copy”
“Let me call Vanderbilt, and call her. If she gave the referral then SHE should finish it!” Dr. H looked fit to be tied.
“If you are angry at anybody it should be at the one who didn’t finish the job, not at me!
“I’m not angry at you!” she said in a nasty and unconvoncing tone. And then she continued; “If I were angry at you I could just dismiss you right now!” Who the hell did she think she was, a Queen? And was I supposed to take that as a vieled threat??? And what would I really lose if she did? You can’t lose what you never had. Whatever elaborate facade she and her staff had spun over nearly the past year it was just an illusion. She’d revealed her last ace. There were no remaining bargaining chips at her disposal.
Did she think that because I’m in a wheelchair that I was afraid of her? I was more afraid of my own possible reaction (for her) than of her or anything she thought she could do to me now. It was one of those moments when everybody in the room goes “Oooooooh” even if only silently inside their own heads.
It seemed like forever that she was in the room across the hall on the phone, and in the meantime my aid came in and was having her own special brand of hissy fit. “I’m going to be late for my next client at 3:00 and it’s all because of you! Call Transportation! We have to leave! Is the doctor coming in or not!
“Yes, she said she was coming back. She’s on the phone”, I said, trying my best to be the one calm one in the room that day. “Look, I am about to burst into tears right now. I’m barely holding it together. This affects my life!” She lowered her voice, suddenly aware of how her inconvenience paled in comparison to my inaccess to medical care, something that might very likely seal my fate.
“If I’d known this I wouldn’t have come,” she said more downcast than angry at this point.
“If I’d known this I wouldn’t have come. I got up out of my bed for nothing.”
In the moments that followed the anormity of the situation crashed down apon my shoulders like a ton of bricks and all I could think of was that when the chips were down I really have no support, so what on earth am I going to do? All these other people had their own agendas and I was alone with this monumental task, one that no matter how much a tried to advocate for myself, and no matter how educated I am, has to be done by a doctor, a doctor I can rely on. Without that key component, I am sunk.
I called transportation and it turned out they were waiting outside. I moved out into the hall with aid in tow nagging that they were going to leave us. The nurse sat behind a desk to my left and the two students in front and behind me. I told them all that I really doubted that this previous GP was going to do these forms because her corporation had had some policy about being involved with medicaid processes since they don’t directly bill them.
Dr. H’s son, who sometimes works the front desk said “I’m sure my mom will do all she can to help you.” Somehow I didn’t share his confidence. If this was her idea of “helping” me or “caring” she had a strange way of showing it. As we were about to walk out the nurse told us to wait in the exam room. We reluctantly went just inside the door in hopes there was just a sentence or two left. Dr. H. came out of the room across the hall and into ours.
My aid immediately moved toward the door and said she was going to be late, but Dr. H. pulled the door shut and stood in front of it, blocking our exit. All of us, students included, were quite literally a captive audience. It was notably an aggressive act on her part. “We are going to fix this now, today!” she said. A sense of impending doom settled like a blanket upon all of us huddled together in that little room.
“You might be glad,” she began, ” or you might be angry at me, I don’t know which, but I called.” It almost sounded as if she was going to be nice to me for a moment there, but that soon was nullified by her next sentence. “I spent 2 hours trying to help you” untrue because it took her one hour even to come into the exam room the first time. She continued, “I spoke with Vanderbilt, and it took me a long time to then reach Dr. P. Well she told me she did write the referral.”
“Yes, that’s what I told you. You didn’t have to call her to find that out. She didn’t chart it anyway.”
“Yes YOU said, but I don’t know if not in chart” she said in her broken English. Her particular brand of dismissiveness was beginning to really irk me.
“So you don’t believe anything from a patient???”
“No, I don’t say that! Yes, I believe, but I don’t know if not written in chart.” She was hopeless. “She said have you drop it at front desk for Office Manager and she’ll take a look at it.” So that was the big generous thing she did to “help” me?
“She didn’t say she’d fill it out?” I queried.
“No. No promises” Just then she noticed the cell phone in my hand. “Are you recording this?”
“No, I had called transportation.” I thought, too bad I couldn’t. This phone is one of the cheap ones that has very little time to record on it.
That’s just great, I thought sarcastically. Another runaround for her to look at it and tell me no again. “What is it that would be any different this time than last time if the issue is Piedmont’s policies? What’s to keep her from telling me the same reason you won’t do it? The only difference between you and her is that she started the process. That’s the only difference. And if she doesn’t, then what?”
“I told you to go to Neurologist” she said blithely although even she seemed to realize that was a lame argument given the circumstances.
“Yes, and I explained why that won’t work. I actually did look for one but nobody in the Atlanta area specializes in this condition. The most they’re going to know about is POTS, and very little, at that. Anything more complicated they don’t have the expertise for and I will be wasting my time, or worse. And there are no testing facilities beyond a Tilt Table anywhere in this state. You can Google it and see for yourself. Look up Autonomic Specialists. You won’t find any. I tried. Every doctor so far has passed the buck since I left Emory. A general neurologist could say the same thing as everybody else, that it’s outside his expertise. That’s when you’re supposd to refer but everybody lately has it backwards.
“So am I passing the buck?” using her aggressive voice again. It was a loaded question.
I just gave her a look like “you already know the answer to that one…”
It wasn’t that this came as a total surprise to me, but before all this came crashing down I had started to regain hope again and even make plans for a somewhat longer life because I thought that at least this might buy me some time, even if only a few more years and better quality of life. My body is under tremendous strain and I’ve been trying to hang in there until I can get properly routed to address all of my conditions to the best of science’s ability with the medical technology we currently have. Only then will I really be able to rest easy. I need to know everything that can be done will be and that I won’t continue to fall through the cracks. It’s one thing to die because every available option is tried and fails, but quite another to die of medical neglect, because your life just isn’t worth the dollars and cents it requires to save it and alleviate ones’s suffering.
There is a reason I have this Dysautonomia and the proper ethical response is to do everything possible to find out why, and treat both it and underlying conditions. If the doctors here have to do what Vanderbilt did and go through and look at the data that is in the record pointing to this, then so be it. They can’t in all fairness hold me up because they expect something to be in the chart that was stupidly left out by somebody else. It is what it is. They’ll just have to work with what they have. If it was good enough for the top experts in the country it should be good enough for a series of GPs.
I have had a rough weekend. Going in there and having to fight for my life for several hours against people who in the end were fighting just as hard to avoid the work as I was to get it accomplished took alot out of me. I have been going from burning up to cold numerous times throughout the night, waking up with itching and welts from the Mast Cell disorder, and my stomach has been upset again and I had a bad headache all Saturday night. I have had to really work to eat because nothing except very few things appeal to me and I get full very quickly.
As usual I am horribly thirsty and although the urinary tract infection seems to be gone now I hope this doesn’t exhaust me to the point where my immune system is compromisd and it comes back. I don’t think I can ever return to this woman given the level of dishonesty and game-playing that goes on in her practice, not even in an emergency. If she’s not there for me for this vital consult then I don’t think I could rely on her for the many other things I need a doctor to do to accommodate my chronic illnesses.
I actually thought that the amount of documentation would improve over time but it hasn’t. Oddly, it seems the paucity of charting of important information by past doctors encourages more of the same in doctors that come later, as so many of them look to old, even outdated records for some type of guidance on their charting. I guess for most it’s easier to follow someone else’s lead, to let previous doctors assume all the “risk” rather than for them to be the first to step out and blaze their own trails. Only two of my specialists right now are breaking out of that mold at least to some extent.
You are such a gifted writer. I wanted to let you know that a group of us will be meeting with congress to share the challenges we face in trying to obtain necessary medical care regarding home IV treatment. It shouldn’t be as hard as it is now. My gut autonomic system is slowly shutting down and I went from a feeding tube to needing a central line. It’s so freaking hard some days to keep the pain in check let alone having to do everything else to keep alive. Keep up the amazing writing. You inspire me so much with your courage and honesty. I really hope that you have found doctors that give you the compassionate care you deserve. We have many people in our support group with gastroparesis from dysautonomia requiring feeding tubes and IV nutrition, and it’s so freaking frustrating when you have to keep fighting the system but you can barely get out of bed. It got so bad before getting the IV nutrition that I was bed bound and had bed sores. I needed a hospital bed with a special mattress just because Medicare is so cumbersome. I’ll let you know what I have learned from Washington. Let’s hope there are people who are fighting to help get us the medical care we need or this exhausting trip will be for nothing. You’re an amazing advocate!
That’s great! When are you going? Can you try to speak with Bernie Sanders and Elizabeth Warren and see if you can find out whether Bernie has been reading my letters, the petition, and what they are doing? I have not received any response and cannot find any contact info for Elizabeth Warren other than a webform. Those webforms are too limited in how long a message they’ll take, so are not sufficient to give much detail at all. Is there somewhere I can PM you my email address so we can keep in touch? Things are still stalled and I have reset the appointment for Vanderbilt for June. This is about the 4th time since they’ve accepted me that I’ve had to reschedule. Local doctors start the process and then invariably abandon it in the middle for some odd reason. Paperwork was almost complete about 3 weeks ago except for some coding the doctor had to add and then suddenly the office stopped communicating and I was just told they’d call me, and it’s been weeks now and no telephone call whatsoever, nor any fax confirmation sent to me that would prove they’d submitted it.
We are meeting in June 2 and 3. We are supposed to meet and talk with our senator and representative who we are constituents. Sanders is my us senator, and so I hope he will be there. His office helped me so much. The issues were from Medicare and not my doctors as they were hitting a wall so Bernie’s office helped us tremendously. I don’t know if we are able to meet senators from other states, as warren is from Massachusetts. If I do meet with him I can definitely share your experience. It’s flabbergasting how you are treated. Have you ever thought of calling the news media to report how you are seriously ill and the struggle to get care. I know people who got consults in another state and it was covered without any issue. You’re such an eloquent writer, I’d be writing to my media if I were you. I’ve shared your stories with my doctor and how sad I am to know this exists. I don’t think doctors realize how traumatic it is to be chronically ill and how we depend on special life saving medical treatment. We get so nervous and anxious when we there’s a roadblock to our access. That’s what I will be sharing with my senator or congressman when I’m there. I definitely will, if I could, share your experiences. I know for me it’s very upsetting.
Let me know how to get in touch with you. I don’t have a website like yours although I have thought about sharing my experiences. But I’m not a good writer.
I did call all the local news media and they wouldn’t air it unless I was represented by an attorney. Honestly I think they were too scared they were going to piss Emory off and that maybe they would lose some funding, sponsorship, or connections or something. One woman screener told me it was “personal” and shouldn’t be shared on the news as though I had something to be ashamed of by going public. I told her it was MY personal account and therefore my choice. I asked her point blank whether there was some conflict-of-interest I didn’t know about and she swore there wasn’t but I can’t think of any other reason why they wouldn’t air the story.
You can PM me on Facebook here; https://www.facebook.com/Giftbearer and I’ll give you my email address. Is your username there the same as it is here?
When you see Bernie Sanders please do share this with him and ask him if he will contact me and if he is already working on this issue. In the letter I sent him I asked if he would collaborate with Elizabeth Warren to write the legislation outlined in the petition. I have been tagging them on the petition we created too when I Tweet it. We now have over 1000 signatures.