Down the Healthcare Rabbit Hole: Part II

Down the Healthcare Rabbit Hole: Part II

We left our heroine in limbo, rejected by her primary care physician for daring to demand actual medical attention from an MD, and a simple referral, and then using the f-word when I got neither, and probably also for sic’ing her gnarly and fearless husband on the reception staff of two medical practices.

At the time, I was actually not having any auras.

July 25: I see Dr. (let’s call her) Grenada. A space opened up and I grabbed it.

In an email to one of my friends I wrote: I saw a nice neurologist today. I have an EEG next wed. She thinks its seizure related. I’ve thought so for weeks. It was a relief for somebody to finally listen to me. She even said it was exactly what I’m thinking: focal aware seizures. The meds are a lot better than they used to be she assured me. Everybody keeps asking if I’ve ever had a head injury and I’ve been saying no no no until today I remembered all the times I fell off a horse.

The one that broke my nose certainly could have been traumatic. Most of the others were off and flat on my back from five feet.

On the same day I wrote to my brother: She had a cancellation & I got on today. I liked her. She’s Brazilian. She was very efficient, as was her staff. She went over the whole thing from onset to today and said she did think it sounds like some kind of seizure disorder. And when I said focal aware seizure she nodded. I have an EEG a week from today. She does indeed want me to bring my phone to see if we can provoke an “aura” as I call it. She says the new drugs are much milder and less sedating than ones like Dilaudin. She called in a script but only wants me to take it if I have an aura until I get the EEG done. At one point she asked who my primary was & I kind of hemmed and hawed and she looked down at whatever she had been sent or could access which may be the entire correspondence and said “oh I see she dropped the ball on this” and then just said she would send the results to the ENT. I feel better just to know it’s moving and somebody believes me. The ENT did too actually.

In an email the same day to another friend I wrote: She went right to focal aware seizures. The neurologist also said new anti-seizure drugs are much better and milder, less sedating. The ENT set up the appointment and the primary is now dead to me. But I’m not cutting it off formally until I’m sure I can get my scripts filled without interruption.

Then on July 26, 2018, the bombshell.

On Thu, Jul 26, 2018 at 5:21 PM, Lyda Phillips wrote email to friend:
And today I got a registered letter from Dr Bullfighter firing me. Infuriating and made me feel bad but it just memorializes that we are dead to each other. And somehow I guess is a CYA but I don’t really get how it helps her in case I sue her. What does my top legal team think?

Another email on July 26:
(Friends X, Y, and Z, which are two lawyers and a registered nurse) all say [the firing me] is CYA and to ignore it. X and Jeff think I could legitimately write her a letter firing her if I feel like it. Not sure I do. will mull that overnight.

I am feeling okay. Anxious. And occasionally like I’m skimming over that alternative universe, just low enough to feel it lapping at my toes. I got the anti-seizure meds from the neurologist but we agreed I should try not to start them until after the brain scan next week so as not to tamp down whatever’s happening. Only if I actually have a “spell.”

I have already started looking for a new PCP but in the interim I can turn to my medical oncologist. She really acts like a sort of PCP.

Other than that, I’m okay. Actually, got a good chunk of writing done today. It’s hot and mosquito-y here. I am whacking at the bamboo.

July 26: email from a friend:
I couldn’t help nosing around re: doctor terminating physician/patient relationship. Apparently, your Fucking Doctor did things by the book, i.e. sending the registered letter. However, several sites did say that the physician should tell the patient the reason for terminating the relationship.

Interestingly, a site called verywellhealth confirms the above, but also cautions patients as follows:
A couple of “don’ts” to remember as you make this transition to another provider:
• Don’t get overly argumentative, obnoxious or aggressive. It could result in you being denied medical care.
• Don’t complain about the old doctor. It does not move you forward and may give your new doctor a reason not to engage with you as a patient.
So disgusting. Denied medical care because you’re standing up for yourself???!!! And who decides what’s “overly” argumentative? Are we supposed to just meekly walk away and keep our traps shut for fear of total and complete banishment from the entire medical profession? The police who protect bad apples are The Blue Wall. These doctors are The White Wall. Anyhow, think about whether it’s worth it to confront her.

Glad you’re feeling relatively okay. Anxious is, unfortunately, normal at the moment. How could you not be? (Well, you could be a Zen monk of the highest order, up in an impossible-to-reach monastery in the Himalaya. That person might not be anxious. Or rather that person would be neither anxious nor not-anxious. hahaha) Anyhow, you have the meds in case you need them. And in the meantime, you got a lot of writing done! Which I find totally impressive. It takes so little to throw me off track these days.

Reply: I had already decided not to go any farther. She’s dead to me and there’s no reason to talk to the dead. Plus, I have three doctors who know what happened though they probably would not stick up for me in public. We definitely were disruptive and I said fucking. OMG! Call the cops. She and her staff were incompetent and passive-aggressive. It’s over. I hope she isn’t blackballing me. The neurologist, I think I said, is in the [same big group] and she had access to my records and said, “I see your primary dropped the ball.” So that’s all good. I won’t even try to get a PCP from [that group].

Email from one of the lawyer friends: It is cya and appropriate to formally delineate the end of her responsibility. I think a note to the hospitals where she has admitting rights or to the health insurance company for whom she is a preferred provider might be appropriate if you had the energy. Or how about a letter documenting your experience and firing her! A friend of mine did that when she had a terrible experience with one of her doctors’ office and it ultimately made her feel better. Plus she actually got an apology from the doctor which also made her feel a little better.

Email from other lawyer friend: God, what a fucker. My advice is to move on with your life. She’s dead to you with good reason.

*

Sent: Wednesday, July 25, 2018 4:10:06 P
Subject: Finally saw a neurologist today

I liked her. She was very efficient as was her staff. She went over the whole thing from onset to today and said she did think it sounds like some kind of seizure disorder. I have an EEG a week from today. She does indeed want me to bring my phone to see if we can provoke an aura as I call it. She says if it is it’s not severe and new drugs are much milder and less sedating. She called in a script but only wants me to take it if I have an aura until I get the EEG gone. At one point she asked who my primary was & I kind of hemmed and hawed and she looked down at whatever she had been sent or could access, which may be the entire correspondence and said oh I see she dropped the ball on this and then just said she would send the results to the ENT and my medical oncologist who operates very much like a PCP and who I saw Monday for my biannual visit. She also went right to focal aware seizures. The neurologist also said new anti-seizure drugs are much better and milder, less sedating. The ENT set up the appointment and the primary is now dead to me. But I’m not cutting it off formally until I’m sure I can get my scripts filled without interruption.

I picked a new PCP pretty much at random. I didn’t want to use any PCP in Dr. Bullfighter’s practice, which seemed at first to include every physician in Nashville who’s not with Vanderbilt. I tried several PCPs recommended by friends and none of them were taking new patients. No one in their smaller practices was taking new patients. I had to make a choice fast because I was afraid Dr. Bullfighter would shred by medical records and I also wanted to cut the bleeding cord with her, quickly. So, I googled doctors in Nashville accepting new patients and got a list, and narrowed it down to two younger, female physicians at another big physicians’ group here. Then I picked one and called, made an appointment. This took weeks before I could send a sent a certified letter to Dr. Bullfighter asking her to send my records to Dr. (let’s call her Chile).

Aug. 1: I had the EEG, which she said was normal, found nothing, but she said to go ahead and start taking the Keppra, two 500mg pills a day. I got the script filled but read the insert and a lot of online material. I was terrified by the side effects: terrible rashes and suicidal thoughts and actions. So, I decided to wait to see the new PCP and see what she said.

As for the seizures, from July 19 until August 12 I had no auras at all, another reason I decided to slow-walk taking the Keppra.

Then, they started up again:

August 12: 3 (And I adopt a new border collie-mix puppy named Zolene. I realize I was insane, but in many ways it was a brilliant way to reclaim my life, and distract myself from myself)
August 13: 1
August 15: 1 mild
August 19: 1 bad
Aug 20: 1
Aug. 22: bad one, convinced I was remembering the game, almost pulled me completely in.
Aug. 23: 1, bad, exhausting, lingering
Sept. 3: 1
Sept 4: 1
Sept 5: 1 bad
Sept. 11: one while working on jigsaw puzzle
Sept. 12: one on way to Memphis. I pulled over on I-40 for it to pass. I never lost consciousness or had any trouble getting off the road in time. These things give me lots of warning. Not that driving isn’t a concern. But I read up on it and unless you start to have UN-aware seizures, you do not lose your license.
Sept. 17: I slight
Sept 18 :1 bad
Sept 24: bad one
Sept 29: pushed one away
Sept 20 cold, cough mild FAW
Oct 5: short one around noon, ears stopped up, coughing

Oct. 8: See Dr. K. at last. He was somewhat eccentric. He just talked to me, and let me talk to him. Then he proclaims that I have partial aware seizures but wants to see Dr. Grenada’s EEG report. I wonder how he diagnosed me without seeing it, and how Dr. Grenada made the diagnosis without seeing anything abnormal on the EEG. But never mind, I told him I was afraid to take the Keppra because of the dire side-effects and he said to start taking one half a pill a day to see how I do. I comply.

Oct 12 very slight
Oct 15 faint feeling in gut

Email to book club: I’ve nearly finished the book but I’m sick with bronchitis after a very minor cold. My ears are stopped up so I can’t hear a thing. I found the book fascinating especially given my issues with vertigo which are now officially diagnosed as partial aware seizures and I’m taking anti-seizure medication at a very low level. Mine are in the temporal lobe and present as a profound memory of a board game with an Asian theme, bamboo. It’s utterly familiar until I come out of it and realize there is no real memory there. It’s bizarre and disturbing but I’m learning to live with it. Hopefully without it now that I have the meds.

Oct 19, full FAW staring low in gut
Oct. 23 late, long, weird dreamlike series that I can’t really remember
Oct. 24 another strange episode after turning off the light, seemed to start with the neuropathy.
Oct. 30: 2:00 p.m. after cutting bamboo without eating,

October 31: Call Dr. Grenada’s office to have report on EEG sent to Dr. Chile’s office. They said they would do it right away. Called Dr. Chile’s office to let them know that and to ask whether they had received my medical records from Dr. Bullfighter. They said no. I have lost the receipt for the certified letter. I assume my records are destroyed. Whoever answered said they would call both offices and then let me know. I haven’t heard back.

On Nov. 2: I saw Dr. Chile and explained everything to her, including my cold. I had no seizures, even minor ones for a week

Nov. 8 my face swelled up until my eyes were nearly closed. I called Dr. Chile’s office and by gosh, they got me right in to see the doctor. She gave me a shot of cortisone and told me to stop the Keppra after she looked up the side effects and saw that facial edema was one of them. And she gave me some stuff for my cold. My cold was better, and my face got better almost immediately.

I had a very slight dreamlike spell on Sunday Nov. 11 and the next day I flew to Atlanta to meet a group of Memphis birders to go on a trip to Southern Africa. Okay, I know this sounds insane. Maybe it was. But I had been planning this trip since the spring, before this all started. I had met my fellow travelers. I had paid the money. I wanted it more than anything in the world. I thought that if I died in Africa it would be worth it. I probably should have thought more about the trauma to my mates if that had happened.

But the bizarre thing is that I did not have one flicker of an aura the whole two weeks I was in Africa. I met the group the next day at the Atlanta airport. Flew 16 hours to Johannesburg. Spent the night at the airport hotel where my now good friend Marcia and I grumbled comfortably to each other about having to share a room even though we’d asked for singles. Next day flew to Lusaka, Zambia, and then to Mfuwe. We spent six days there at Thornicroft Lodge. The second day my eyes swelled again. I stayed in my cabin for the evening trip with ice, afraid I was going to have to go to Lusaka or Johannesburg, but I was better the next day and continued to improve. Never looked back. I think part of the reason I didn’t have any was that I was fed three square meals and two snacks every single day. And even in Capetown, I was eating regular meals.

Returned on Nov. 28 and had Thanksgiving dinner with Jeff and my son Gus, who was visiting for a couple of months after five years in China. And the new puppy Zolene. I thought I was out of the woods.

Nov. 30: 1 short, incomplete (which is what I’m calling the ones that don’t go all the way to the board game).

Dec: 4 email to Dr. Chile: I just wanted to touch base with you after my trip to Africa. I left on November 12 and arrived in Mfuwe, Zambia, on Nov. 15. On the 16th I began to have some facial swelling around my eyes again. It got worse for a day and I stayed in my cabin rather than go out on the evening drive and put ice on my face, took Zyrtec, Benadryl, Flonase, and eye drops. It was better the next day and continued to improve from then on. I also had extensive rash on my right arm and legs. That improved over time as well but more slowly. Fortunately, a member of the group was a registered nurse and she kept an eye on me. We agreed later that if it hadn’t improved, I would have had to go home or at least back to Johannesburg. Now that I’m back my eyes are little swollen and itchy but nothing like what you saw and what I experienced in Africa. I didn’t have a partial aware seizure the whole time I was gone, except for one very minor dizzy spell. Let me know if you want me to come in for follow-up.

Dec. 5 reply: This sounds more allergic than a medication side effect. I recommend you see an allergist for further evaluation.

I called the practice she recommended and made an appointment, but couldn’t get one until mid-January. Promptly started having seizures again.

Dec. 6: 1 pretty bad but incomplete
Dec, 16: 1 short
Dec. 17: 1 sharp but quick
Dec. 18: 2 both kind of vague but there
Dec. 23: 1 short, incomplete
Dec. 27: 1 short

On Dec. 27 my skin condition worsened again. My face was swollen and tight and I couldn’t even put very mild hypoallergenic creams on my face without it stinging. I launched an “email visit” with Dr. Chile’s office. To my surprise I got a quick reply:

Dear Ms. Phillips,

We can treat with an oral steroid to see if that controls the rash/allergic reaction without having to use antihistamines. I suggest you contact Dr. Kerr’s office to see if she has any available appointments sooner than 1/22. If this feels like more of a rash, we can have you see a dermatologist.

I hope this helps.

Sincerely,

I responded: Yes. I hate to use steroids but you’re right. I’ll call her office now. Thanks!

Called Dr. (let’s call her) Kirk’s office and they got me in the next day, Friday Dec. 28.

She took one look at me and said, “Oh, you have eczema. How long have you had it?” I told her, “My mother said I was born with a rash.” She listened. She spent time. She took blood work and I got the first results back before close of business Friday. Those were normal.

Dec. 29: 1 long but incomplete
Dec 30: short

I just got the last results from the blood work back today (Jan. 2, 2019) from Dr. Kirk through a portal that actually works:

January 2, 2019: Good morning, Your IgE is elevated at 575. The normal range is less than 115. This is an average high number and common in patients with eczema, so not worrisome, but an expected finding. With this elevation, it makes it more likely we will find some environmental allergy on your skin testing. Kind regards,

***

That is where it stands as I begin 2019. An improvement, definitely. Dr. Kirk said vertigo is very common with allergy patients, especially as they reach late middle age. But she said it didn’t explain the “auras,” which she said do indeed sound neurological. I have not gone back to see Dr. K because I think Dr. Chile wants to clear everything else off the table.

Dec. 29: 1 long but incomplete
Dec 30: short

I have my 2019 Audubon wall calendar out and ready to record every seizure but so far, so good. Knock wood, etc. But as I said at the beginning, I still am having “spells” and I still do not have a definitive diagnosis or treatment plan as I head toward the one-year anniversary of life down the healthcare rabbit hole.

One thought on “Down the Healthcare Rabbit Hole: Part II

  1. This is so horrifying; I really feel bad for you. I’d say “unbelievable,” except my brother went through similar shenanigans for his cancer treatment because his regular doctor, cardiologist and cancer specialist were all with different medical groups. I’d even told him how smoothly my care for various things over the past decade had gone with the Cleveland Clinic Foundation. My primary and all the various specialists on the same computer system. I’ve never dealt with anything close to what you’ve gone through, but once my brother got switched to CCF doctors and hospitals, his life improved greatly. I hope this latest course of care works for you.

    Liked by 1 person

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