A Trip Down the Healthcare Rabbit Hole: Part I

What follows is a series of events that all too clearly show the disintegration of our healthcare system. In my lifetime I have gone from having one of my best friend’s father come to my bedside with his stethoscope to a series of interactions with healthcare providers who barely know you and care even less. They are paid by the interaction. So the briefer that interaction is the more money they make. The more they can push off on staff without MD after their names, the more money they make. And the truth is, they don’t make that much money anymore if they aren’t a top surgeon or specialist.

So, let’s get on the thrilling ride and see what modern healthcare looks like if you actually have something wrong with you.

On March 30, 2018, I spent night at Fontana Lodge with my husband Jeff, dropping him off the next day at Fontana Dam for a long Appalachian Trail hike. He’d already been hiking for more than a month, from the Springer Mountain southern terminus in Georgia to here on the border between North Carolina and Tennessee. That night I realized the bed had feather pillows. I pushed them aside and went to sleep but already the next morning my face was swollen and I had a rash on my forehead and scalp.

On March 31 I drove home via the Seven River wildlife refuge just east of Knoxville and was itchy.

On Saturday April 7 I took a long, hot bath and was quite dizzy when I got out. Less than half an hour later I had the first of three episodes of a weird “aura” followed by vertigo (like the room was spinning around me) accompanied by gagging and vomiting. These attacks begin with a cold feeling in my gut, right down low, in my groin that rose slowly and turned into a feeling of being in another reality and somewhere to my side at about my elbow I sensed, saw in my mind, a board game with an Asian theme, bamboo is the only one of the images that I could really see. It had a strong pull this vision, hallucination, whatever and as I surrendered to it, I started to feel the room spinning. I was not spinning. It was the room.

On Sunday April 8, 2018, I had two more of these spells and called Dr. –
Let’s call her Dr. Bullfighter. I called Dr. Bullfighter’s office, but of course
It was Sunday so I got no answer just a recording. I called the number for the overall medical group, a huge one, the biggest in Nashville, both before and after I called Dr. Bullfighter’s number at her office in Brentwood, a wealthy suburb of Nashville. On my second call to the overall practice, the nice person who spoke to me both times told me to go to the ER. I told her my husband was out of town. She said call an ambulance. I took her advice and called an ambulance, which took me to ER around 2 p.m. Had two more of the feeling of being sucked into the slipstream followed by vertigo episodes while I was in the ER, one when the doctor was in room. I was able to talk while it was happening. They gave me IV fluids and meds and sent me home in a cab around 8 p.m. Had IV drugs and was given prescriptions for valium (5mg), Zofran (8 mg) and Meclizine (25mg) and told to arrange for middle-ear testing as soon as possible.

Monday, April 9: I called twice to try to check in with Dr. Bullfighter as suggested by ER. I never got through to a human. I saw my physical therapist that day and she was very worried and said she thought it might be vascular (i.e., stroke).

On April 10, 2018, I called Dr. Bullfighter’s office again and got a human, a male who seemed to be a telephone operator. I relayed to him that my PT thought it might be vascular and that I had red speckling on my feet and was unable to remember things I knew well, like my dermatologist’s name. I was scared and emotional. He didn’t like that. He told me Dr. Bullfighter and her nurse were with someone right then but would try to get back to me today or tomorrow. I told him told him I was alone. I told him I was mad and scared. His voice got a little shaky. I had let my husband know how messed up I was and he was in his way home.

Later that day, I got a call from maybe the same guy, I really can’t be sure because I was so disoriented, but he offered to set up an appointment for some time the following week with a NP but I said I wanted to keep trying to get an appointment with Dr. Bullfighter herself.

On Wednesday, April 11, at 10:22 a.m. I got the following email:
(let’s call her Parker, Sissy @HUGE HEALTH SYSTEM.org>‬
I have asked Dr. Bullfighter to reach out to you. Thanks.

On Wed 4/11, I sent the following email to two of my best friends who I had previously been trying to arrange to see in either Washington, D.C., where I used to live, or in West Virginia where one of them has a country house.

Re: outing!!

‪I am still trying to reach my dr to even start to get a diagnosis. I am so mad I am literally teared up right now. Jeff is in a rental car speeding toward NV.‬‬‬‬

‪Wednesday, April 11: I called the practice’s main number again and got someone on the line. We spoke for four minutes. I got a call back from a nurse named, let’s call him Gabe, and we spoke for five minutes. I called another number I found for the overall practice and did not get a return call. Between 11 and 11:30 I spoke three times with Gabe. I got a voice mail at 12:36 from someone with the hospital’s neurology practice saying they had a referral from the ER doctor’s office. I called back and I made an appointment for Friday April 13. Around that call I placed calls to Dr. Bullfighter’s office. Gabe at some point called back and told me to go the ER to be admitted for tests and observation.‬ ‬
‬‬‬
I emailed my friends: They want to admit me. I am having weird mental confusion issues. Jeff is like an hour and a half away.

Later I realized that part of that “mental confusion” may have been because I had a pre-existing appointment with audiologist for a clinical trial hearing test. Their office called on Wednesday to confirm it and when Gabe called to say they wanted to send me to an ENT I said I’d already heard from the ENT, Dr. Morgan. A few minutes after I told him that someone called to say they wanted to admit me.

I want to stress here that so far I had not heard personally from Dr. Bullfighter. In fact, to this day I have no idea who ordered me to be admitted for testing.

Jeff came back and took me to the ER. They bundled me up in a bed in the ER and I had over the course of the next 24 hours an MRI, and ultrasound of my carotid artery, an EEG, and some other tests I can’t remember, overseen by a very nice ER doctor, let’s call him Dr. Hedgehog.

On Thursday, April 12 I was released after negative tests and taken off all existing drugs except Effexor and started a six-day prednisone series on orders from Dr. Hedgehog.

On Sunday, April 15 I tried to find a way to schedule a follow-up appointment with Dr. Bullfighter but her name did not appear in the pull-down list of physicians on huge medical practice’s main website. I had had had no further contact with anyone from her office on what next steps are. The only follow-up I had was that Dr. Hedgehog from the ER told me to make a follow-up appointment with my PCP in a few weeks.

Later Sunday I found the correct portal to leave a message for Dr. Bullfighter and requested an appointment:

Message one: I am supposed to follow up with your office after the ER and overnight hospitalization with vertigo. Can I make an appointment for sometime the week of May 23 or earlier? Thank you.

Message two: Will a summary of the treatment I received in the ER and hospital last week be uploaded to this site? And should I make an appointment with an ENT for follow up since the final “diagnosis” was Labyrinthitis?

Dr. Bullfighter 4/16/2018
Hey Lyda! I sent a referral the first day. I will resend. Yes, I want you to see ENT. I have the reports but I cant upload them.

Lyda Phillips 4/16/2018
Thanks. I don’t know what happened to that referral. I remember getting it but it vanished into the ether and when I mentioned it to your nurse, Gabe, he hadn’t heard of it. Thanks. I’ll wait to get the referral and keep looking at this site rather than email or anything else. It’s been a rough patch through here and I’m pretty shaken by it but no more vertigo.

Stephanie Johnson 4/16/2018
Referral was sent to: CORRECT PLACE

Lyda Phillips 4/17/2018
yes, can I make an appointment sometime next week?

Gabe Doorbell 4/17/2018
Were you willing to see Lauren or Stacy out here? Just wanna cover all my bases 🙂

Lyda Phillips 4/17/2018
Let met wait and see what the ENT has to say. There may be no need to follow up actually if they feel like they can nail it down and can treat it. I have an appointment with Dr. Bullfighter June 27. Is that correct?

Gabe Doorbell 4/18/2018
Yes mam 🙂

Gabe Doorbell 4/17/2018
You can Call them Lyda 🙂

April 19: I saw Dr. W. He was very nice and referred me to Vanderbilt for a balance test,

May 8: Saw Dr. Morgan for the audiology clinical trial.

May 9: Saw Dr. W. again

May 19: began logging auras: had bad one at 6:30 pm.

May 22: aura

May 23: dizzy with slight feeling of the aura all day

May 30: had mammogram and had mild aura during it.

May 31: bad aura, took the last half of a Xanax that I had from a January refill of 10. Dr. Bullfighter’s office refused to refill.

June 9: dizzy on standing then slid into aura.

June 10: aura while reading with tinnitus.

June 26: Took the balance test at Vanderbilt and aced it, ruling out inner ear issue.

June 27: saw Dr. Bullfighter but turns out it was my Medicare physical where they don’t do much but take your BP. In fact, I had to remind the nurse who took my vitals that she also needed to take my temperature. She did and left with the lead from the thermometer dragging on the floor. Dr. Bullfighter, when she finally appeared, had an observer of some kind with her and was very merry and unconcerned about the “terrible vertigo” I’d been having.

Lyda Phillips to Dr. Bullfighter 7/03/2018
I spoke to Dr. W. He has gotten the results of the test at Vanderbilt and is not completely satisfied that it is migraine related and wants to refer me to a neurologist. He recommended Dr. K at Centennial but said he would defer to you in making a referral. What do you think?

July 8: Aura while testing blue light blocking glasses

July 9: aura even playing Seekers Notes

July/09/2018
To Dr. Bullfighter: I sent a message on July 3 about having had a talk with Dr. W. who wants to refer me to Dr. K., a neurologist at OTHER BIG HOSPITAL but wanted to make sure this referral outside the St. Thomas system was okay with you. It’s been more than two business days now so if I don’t hear from you to the contrary today I’d like to go ahead and make the appointment with him.

Thanks!

Dr. Bullfighter MD 7/09/2018
Happily! I think Dr K. is a GREAT idea!

Lyda Phillips 7/09/2018
Thanks!

L G 7/10/2018
Hi Lyda, please feel free to make the appointment with Dr. K. We are ok with providers outside of Saint Thomas.

Gabe Doorbell 7/11/2018
Hey Lyda, did you get her response on this question?

Lyda Phillips 7/11/2018
Yes, here’s her reply: “Happily! I think Dr K is a GREAT idea!”
Dr. W. at BIG ENT PRACTICE, who Dr. Bullfighter referred me to for vertigo, will be sending her the results of the balance testing I did at Vanderbilt with Dr. R. today. He called me last week and said he was not 100 percent convinced the vertigo was migraine-related, as Dr. R. had concluded, and wanted to send me to see neurologist K. at Other Big Hospital to just rule out any neurological cause. He said he would prefer that my primary make that referral. I spoke to (let’s call her Opal), Dr. W.’s nurse, a few minutes ago and she said they will make the referral if Dr. Bullfighter is unavailable but reiterated that it’s better to come from my primary. I sent a message to the Midtown location last Tuesday with this same information and a follow-up today with no response. So I thought I’d try the Brentwood location to see if I can get this message through to her.

Thanks

July 13: Aura while watching TV, lingering after effect
10:44 tried but was unable to leave a message to Dr. K.
12:39 tried the number again and spoke to assistant B.
12:43 called Dr. Bullfighter, put on hold but a human did finally answer and I left a message

Gabe Doorbell 7/13/2018
Yes Mam, I can send the referal order for you but if you want to call them its easier that way for you I figure :)Yes Mam,

Lyda Phillips 7/13/2018
I will call him. Dr. W.’s office had thought it would be better coming from my primary but I am happy to do it myself. Much simpler. Thanks.

I called immediately, and Dr. K’s office said I needed a referral.

Fri, Jul 13, 2018 at 10:40 AM, Lyda Phillips to Opal:
After a few days of email back and forth [with my primary], they said I should make the call to Dr. K. But as you probably knew all along, they want an actual referral and I thought you all might be better positioned to make it since you know precisely what it is Dr. W. wants Dr. K. to look at. I think I know but …

From: Opal
Sent: Friday, July 13, 2018 10:56:50 AM
To: Lyda Phillips
Subject: Re: referral

I am so sorry for the tennis match on how this goes, it would be better for your pcp to do the referral because then they will have the say in what happens after you see specialist and specialist notes will go straight to them. I’m not sure why your pcp said for you to call because that is not how it works. If you get any resistance from Dr. Bullfighter let me know, all they have to do is call and give a verbal referral but then it would be under her name. Let me know if it doesn’t go smoothly. Opal

Two days later, July 15, I flew to BWI and rented a car to go out to West Virginia to see my friends and meet up with my husband who was approaching Harpers Ferry. Drove to her house without incident

Jul 16: Had aura in birdseed shop

July 17: had four auras while driving Jeff back to Harper’s Ferry and then back to Berkley Springs. Friend took the wheel.

Lyda Phillips 7/17/2018
To Gabe Doorbell: I sent a message yesterday saying Dr K.’s office has not received a referral from Dr Bullfighter despite your having sent one last week. I am now out of town and have suddenly had four vertigo auras today and am really frightened. We’re trying to figure out how to get me and my rental car back to BWI airport without driving and I’d like some confirmation that at least Dr Bullfighter has sent a new referral so that I can go to Dr K as soon as I get back to Nashville. Thank you. I am really frightened. To remind you. The referral must come from Dr Bullfighter. Dr W.’s office will not make it. Dr K’s office emailed me yesterday they had not received the referral. Any advice would be appreciated. Today if possible.

On Wed, Jul 17, 2018 at 3:51 PM, Lyda Phillips wrote to Opal:
Opal, Gabe Doorbell at Dr Bullfighter’s office said he sent the referral Friday but Dr K’s office has still not received it. I sent Gabe a note to that effect and have heard nothing and neither has Dr K’s office. In the meantime, I came to West Virginia to visit friends and today had four aura episodes in the space of about four hours. I’m pretty scared and having trouble getting back to the airport to come back to Nashville since I can’t drive myself to BWI. We will work that out but do you have any advice medically. I took a half of a Valium and half of a Xanax but did not bring any antivert, I am in bed.

From: Opal
Sent: Tuesday, July 17, 2018 3:56:17 PM
To: Lyda Phillips
Subject: Re: K referral

No and unfortunately Dr. W. is in surgery so I can’t ask his thoughts until tomorrow. Is it bad enough that you need to go to ER?

On Wed, Jul 17, 2018, 9:44 PM Lyda Phillips wrote to Opal:
My husband is coming back from a hiking trip and can fly with me back to Nashville on Thursday. I had a total of five aura spells without vertigo today, one the day before, one on Friday and one each on the 12th and 13th. They are scary but not truly severe. I can still talk and don’t lose consciousness. I did vomit though with the next to the last one today. I am staying with good friends and they are watching me like hawks. I’ll get in touch again when I’m back. Thank you so much for getting back to me. I really don’t know how to handle the communication problem with Dr Bullfighter and her staff,

On Wed, Jul 18, 2018 at 5:31 AM, Opal wrote:
I’m glad you are surrounded by good people to watch for you. Be safe coming home, I’ll be sending positive thoughts and vibes to get you back safe. Keep me posted. Opal

Lyda Phillips Wed. 7/18/2018
I am asking once again if I can get the referral to Dr. K. His fax number is …..

Gabe Doorbell 7/19/2018
Hey Lyda, I have not sent this a third time to them. Its the same number we have listed, not sure where the disconnect is coming from. Will send both through EMR and through Manual Fax.

Lyda Phillips 7/19/2018
Frustrating. The last time I talked to Brigette in his office she said she was going to call you. I have left a message for her.

Lyda Phillips 7/19/2018
I have spoken to my husband who has come back from hiking the Appalachian Trail to help me through this since it seems to be getting worse with no end really in sight. He is coming down to the Brentwood office tomorrow to pick up the referral. He will then hand deliver this to Dr. K. Please make sure it’s there for him to pick up. …

Gabe Doorbell 7/19/2018
Yeah its incredibly frustrating as we Keep sending it, and as far as on our end the only thing we can tell is that its going through fine. Otherwise it would bounce it back with an error message. I have also called and LVM with them to explain that we have sent this order several times through various means and requesting any other fax number. The referal is in your chart so they will be able to print it off for you at any time. …

Lyda Phillips7/19/2018
So if he goes to Brentwood tomorrow and asks for it, it will be waiting for him? The lady who answered the phone today said she could see that the fax had taken more than 100 seconds to go through and through that she was able to figure out that it probably hadn’t gone through. But whatever, I just want to get somebody to see if they can help me.

Lyda Phillips 7/19/2018
sadly I am still waiting for that referral. I had five episodes of the “aura” on Tuesday and have messaged repeatedly for the referral after finding out it has to come from my primary. My husband has now broken off his Appalachian Trail thru-hike to help me deal with this. He will be coming to the Brentwood office tomorrow to get a hard copy of the referral and hand deliver it to Dr. K’s office. Can you do anything to help make sure it’s there when he gets there. As you might guess, he is somewhat peeved. And I am almost desperate and have made three calls this week alone about it. My first correspondence was July 3 as you can see from the above message, the Tuesday before July 9. Your message here okaying it was July 9. It really shouldn’t take 10 days to fax a referral and make sure it goes through.

Email to Wendy and Aimee: July 20
Jeff raised all kind of hell this morning at both offices and yet even he has failed. Gabe the POS sent a referral for migraine and when Jeff brought the referral to Dr. K.’s office they said he doesn’t treat migraine and wouldn’t take my case anyway because he’s about to retire. The woman who I had been talking to was not there and when the ENT’s nurse tried to call over there to see what was up the office was closed. Gabe the POS called me and I railed at him and finally burst into tears and hung up on him. There’s nothing to do now but try to find a new PCP and start over. I am letting the whole thing go until next week.

Can you believe this?

from: Opal
Sent: Friday, July 20, 2018 11:06 AM
To: Lyda Phillips
Subject: Re: K referral

Good morning Lyda, I hope you returned home safe. I got your voicemail and I am disappointed and sorry that after all your work that was how it ended up. I have heard good things about the Big Hospital group. I think it would be good for you to pursue the referral there and I will inform our docs/nurses here that Dr. K isn’t taking new patients. I know you feel disheartened at this point but please keep your head up. The right specialist will get to the bottom of your symptoms and have the right answers. Keep being diligent with your pcp office to make sure they do the right thing and I’m here for you to vent if you need to or help if I can. I hope your day is wonderful. Opal

On Fri, Jul 20, 2018 at 11:13 AM, Lyda Phillips wrote:
No. I will not deal with my primary care doctor or her staff anymore. They have been incompetent, passive-aggressive and dishonest. I was going to ask you for a primary care referral actually. But I can ask my friends. So you all are basically out of the mix at this point? That’s a real shame since I feel like Dr. W. is the only one who actually understands what’s going on. I was a healthcare analyst until I retired a few years ago. I thought I knew what was going on but it’s an eye-opener to be actually in the grinder. I may ask the folks you sent me to at Vandy for a PCP referral if you all can’t make one.

From: Opal
Sent: Friday, July 20, 2018 11:15:38 AM
To: Lyda Phillips
Subject: Re: K referral

I misunderstood your voicemail, I thought you said your pcp was sending new referral to Big Medical Group. I can ask Dr. W. about any other neuro referral options he may have if you’d like me too.

On Fri, Jul 20, 2018, 11:30 AM Lyda Phillips wrote:
it’s especially strange because Dr K’s nurse seemed to understand and seemed to be working to get me in to see him. She wasn’t there today and hasn’t responded to emails this week.

From: Opal
Sent: Friday, July 20, 2018 11:37 AM
To: Lyda Phillips
Subject: Re: K referral

After lunch I’ll call Dr. K office myself and see what they tell me.

On Fri, Jul 20, 2018 at 11:57 AM, Lyda Phillips wrote:
Thank you so much!

From: Opal
Sent: Friday, July 20, 2018 12:08 PM

The two people from his office that I spoke with didn’t have a clue what I was talking about.

To: Lyda Phillips
Subject: Re: K referral
I am still going to ask Dr. W. his thoughts and as soon as he answers the question I will let you know

On Fri, Jul 20, 2018 at 5:03 PM, Opal:
It’s too late for me to do it tonight but Monday I will call xxx and set up a referral for you.

****

For the record after this debacle Gabe called on Friday July 20 as well. He did not apologize. He blamed Dr. K’s people. I said “you mean you can’t get a fucking fax from one side of the city to another in a month while I’m up to five episodes a day.” Toxic

On Mon, Jul 23, 2018 at 11:48 AM, Opal wrote:
I got you an appt with (let’s call her Dr. Grenada) 9/5/18 1030am, they are putting you on a cancellation list so if an appt opens sooner they will call you. Opal

From: Opal
Sent: Monday, July 23, 2018 11:53 AM
To: Lyda Phillips
Subject: Re: K referral

Also, I called Dr. K’s office and they tell me no, they don’t see migraine patients but have no idea why you were told that he was retiring and won’t see new patients. They said they are running out into late Sept for appointments though is why I went with the St. Thomas group.

Mon, Jul 23, 2018, 11:56 AM Lyda Phillips wrote:
Unbelievable. I am staggered. He was told that by more than one person, the receptionist and then a dr or intern who said he was Dr. K’s assistant, a male.

*****

On Monday July 23, 2018, I saw my medical oncologist and told her the story. She looked at me with her head to one side and said, “But you’re on Medicare. You don’t need a referral.” My head exploded. She also said at one point as I was describing the hallucination, “That sounds neurological to me.” And she nodded when I said I had looked up focal aware seizures and that my symptoms checked every box.

That afternoon I received the letter below from Dr. Bullfighter firing me. I’m assuming she fired me for using abusive language, but there’s no question there was no way forward.

On Tuesday 7/24/18 I got an email from Opal that Dr. Grenada could see me. Took her one day to get me the appointment.

Sent certified letter to Dr. Bullfighter asking her to send my records to (let’s call her Dr. Mavis Chile).

Watch this space for Part II of my exciting adventures Down the Healthcare Rabbit Hole!! Coming soon!

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