My Crohn’s Disease Adventure, Part I: George Orwell General Hospital: Running Afoul of Kaiser Permanente’s Utopian Health Care Police

Today I went to see a doctor at my health care provider’s facility nearby. For the first time in my life, instead of being greeted by a doctor, I was greeted by a Support Services Administrator and two security personnel. Much to my surprise, Kaiser Permanente had sent its Goon Squad after me, because according to the Support Services Administrator, I was, quote, a “threat.”

Thanks to the not-quite-miracle of Obamacare that at least allows me to ignore my various so-called pre-existing conditions, I have an individual “KAISER PERMANENTE - BRONZE 60 HMO W/DENTAL” plan that costs me $297.93 per month and carries a $6,000 annual deductible. I’ve been with Kaiser for ten years, going on eleven. Though it has often been tempting to switch, Kaiser has all of my medical records, and every doctor I’ve seen for a decade has been a Kaiser doctor (just the way they like it). For the uninitiated, Kaiser is different than most health insurance plans in that they run their own hospitals, employ their own doctors, build and manage their own facililties, run their own pharmacies, and do everything possible in-house. Nominally, this reduces cost. In practical terms, the cost savings are hard to actually see for the average person, but the policy of centralization does clearly increase the company’s control over its patient-customers. Other health insurance plans have also been described to me as being pretty terrible, so despite my unhappiness, I’ve felt as though I’ve had few real options. Either way, my health has gotten to its present state on Kaiser’s watch.

The problem is that although it could be far worse, my health isn’t great. For ten years, I’ve had a cacophony of symptoms that I have dutifully reported to my various primary care physicians and occasional specialists, who I have almost always had to fight to see. After all, with Kaiser, you can’t just walk into Dermatology and expect to request an appointment — you need a referral. Referrals are valid for a maximum of one year. So if you have a chronic condition, that’s tough luck. You’ll need a new referral. And another. And another. And another. And another. And another. And another. And the next year, another, for the rest of your life. Each referral requires an in-person appointment with your primary care physician to “validate” the need to see that specialist. In-person appointments require co-pays, which can range from $20 to $100 depending on your plan. This gets expensive pretty quickly.

But that’s nothing compared to the actual care offered by Kaiser’s physicians. My problems started the year before I joined Kaiser, when I went through a period of extremely intense stress. I began noticing relatively large amounts of my hair staying on my pillow each morning when I woke up, and insane itching in my rear end at night. Having never dealt with anything like either symptom before, I tried to cope as best I could. I asked my Blue Cross Blue Shield-sponsored doctor about the hair loss, and he was only too happy to prescribe Propecia. I took one pill and then decided it was crazy to be taking expensive pills for something that seemed inevitable in middle age anyway.

Shortly after I joined Kaiser, the itching, which had migrated to the perianal area between my legs, was becoming a real problem. I scheduled an appointment and saw a nurse practicioner who noted that my skin probably itched because it had cracked in several places, and told me to resist the urge to scratch. This was impossible. She prescribed hydrocortisone cream, which I tried and then immediately grew terrified of. It made the already-thin skin in my groin shiny, and irreversibly even thinner.

Over the next few years I attempted to see actual MDs instead of NPs who might be able to solve the mystery of the rash. They suggested that it was atopic eczema (after all, you have asthma, one doctor pointed out), and recommended the dermatologist’s favorite and seemingly only tool: more hydrocortisone cream. The Dermatology department chief confirmed that the rash was not fungal after looking at the skin under a microscope, and suggested not just hydrocortisone cream, but extremely strong hydrocortisone cream. I looked at him like he was crazy.

To manage, I purchased several non-steroid anti-itch creams. None of them really worked, but they at least helped me get through the days (and nights). Aveeno Eczema Therapy with colloidal oatmeal actually did stop the skin from flaking as much as it had been, but it was still an angry red patch on my inner thighs, oddly symmetric (since I couldn’t possibly scratch that precisely on both legs) with bright red edges, which seemed to keep expanding and expanding down my legs, making slow but steady progress.

Meanwhile, I noticed that I always seemed to be tired compared to everyone else. Each time I travelled to a friend’s wedding out of town, I felt like I’d been hit by a train. Regrettably, I decided not to go to a photography session for my best friend’s wedding because I simply didn’t have the energy. On the other hand, everyone knows that travelling is stressful, so it was hard to be certain that anything was really wrong.

I had also noticed that my fingernails looked a little strange. My lunulas, the moon-shaped white semi-circle at the bottom of each nail, had disappeared completely. Instead, each nail had dark pink bands across the top 1–2mm of tissue, and if you looked closely, there were tiny crimson vertical striations that looked like very small lines of blood next to each other, almost like a barcode across the entire nail. The internet said that this condition, “Terry’s Nails” or “Half-and-Half Nails,” meant I probably had kidney failure or diabetes, but I clearly did not have kidney failure or diabetes. Tests confirmed that my kidneys were working fine, and my blood sugar was under the pre-diabetes threshold. Occasionally, if I stressed a nail by scratching, it actually would bleed under the nail a bit. I also had deep vertical ridges in the center of both middle fingers’ nails, which made it unlikely I had injured both in the same place in the same way, and more smaller ridges forming basically everywhere. My thumbnails had a beaded appearance like dripping wax, and had for years.

I told my primary care physician. She said it was nothing to worry about and normal. I didn’t believe her, and switched doctors.

I was always cold at home, even when it seemed like everyone else thought it was perfectly temperate. I asked my new primary care physician to test for Thyroid Stimulating Hormone, which came back normal. Some fatigue persisted though, and I would often take naps whenever possible, even on days when I didn’t have a lot going on.

I noticed that when I would write e-mails, something I did daily, increasingly I was leaving out connector words such as “and” and “of” that I thought I had included. It seemed too bizarre to be a real thing, but it kept happening, and it seemed consistent with the notion that the older I got, the stupider I felt with each passing day.

After returning from a ski trip with some friends, I noticed that my eyes were bloodshot, and I was already used to the incredible annoyance of floaters, which impaired my vision every now and then. Then on vacation with family some time later, my eyes became intensely red in a peculiar shape: a scary red cone of blood vessels radiating out horizontally from each iris. A trip to the Kaiser ophthalmologist resulted in a diagnosis of blepharitis (inflammation of the eyelids). Based on my frantic internet research I thought it might be episcleritis, but my Kaiser ophthalmologist insisted that it was merely blepharitis. She gave me eyedrops and handed me a Xerox suggesting that I use baby shampoo and hot water to clean out my eyes, which I was pretty sure no one actually did. Later, I went back to get a second opinion from a different ophthalmologist since the redness would just not go away. She agreed that I might have episcleritis in addition to blepharitis.

But that wasn’t all. My hair loss was getting worse, and my dentist had been finding cavities for years, perhaps left over from college days when I was in a rush, but more than I thought made sense for someone with at least decent dental hygiene. Eventually my hair started turning gray everywhere on my body, one strand at a time. I started to think of myself as being in my 50s, not my 30s.

Each time I got a blood test done with a lipid panel, I’d appear to be in generally healthy shape except for one thing: my HDL was always too low, below the normal range. HDL is the “good” cholesterol, helping to wipe away LDL, the “bad” cholesterol. My doctors recommended more exercise — not an unreasonable recommendation.

Then a red rash appeared on my lower back, oddly in the shape of a letter C, about 2.5" wide and 2" high. It didn’t itch, but it wouldn’t go away. Tiny itchy bumps about 1mm wide full of clear fluid would appear on the sides of my fingers from time to time — apparently called “pompholyx” or “dyshidrotic eczema.” I’d scratch them away, and they’d come back on the same finger or a different one. My doctor said, “This condition is benign, not worrisome. Recommendation: -wear gloves with all manual work.”

None of this made any sense to me. Everything could have been attributable to typical aging or life, but it never quite fit. My hair loss was making my hair thin along my natural part on the right, mostly at the vertex, as opposed to receding aggressively in the typical male “M” pattern. My scalp was also bright red where hair had thinned. Kaiser’s nurses took a digital picture to send to Dermatology (perhaps in India), which unsurprisingly declared it “normal.” I’d never seen anyone my age with fingernails like mine. I was a little young to be going gray, though it wasn’t impossible given the existence of Anderson Cooper. And I’d already been diagnosed with atopic eczema. But mostly, there was still no explanation for my impossible-to-cure rash in my groin, which remained year after year and really tormented me.

Then, finally, came a breakthrough. The rash jumped, seemingly and inexplicably, from my groin to my right elbow. The skin there assumed the familiar red, flaky, itchy and dry appearance. Luckily, a friend in medical school (not a Kaiser doctor, and not yet a doctor at all) knew what that meant: psoriasis. Sure enough, when I looked up psoriasis I was already quite familiar with everything I saw. I didn’t have eczema, at least not in my groin. I had psoriasis. And it was growing.

More research suggested that psoriasis could be effectively treated with Vitamin D. I asked my primary care physician if he would order a test. His response was typical — not encouraging it, but in this case, not refusing outright. As he put it:

Sometimes people can have rashes in different areas and they can be different things. In the groin, it can commonly be things like lichen simplex chronicus, eczema or even fungal infections.

ON the elbows, psoriasis and eczema can be more common. If you wanted to get input on the elbow, feel free to come in for another “virtual derm/telederm” appt and we can submit the pictures to the dermatologists.

That being said, vit D is used topically as a cream (not orally) to treat psoriasis. I’m happy to check your vit D levels, but it isn’t typically done to evaluate for psoriasis. I placed an order for the vit D test if you wanted to do it.

“It isn’t typically done.” You’re pushing the limits here, asking for this crazy Vitamin D test, was the message I got. On a hunch I went to Costco and bought a Vitamin D3 supplement, and began taking it for a month before I finally had my blood drawn for the test. The results were clear: even after supplementation, at 22 ng/mL, I was at the very bottom of the “normal” range of 20–79 ng/mL. I wrote back to my doctor.

So you’re aware, I am at the bottom end of the normal range for vitamin D even though I have taken 2000 IU Vitamin D3 supplements daily now (one per day) since January 28, 2015, e.g. nearly a month. From that you can extrapolate that prior to starting the supplements my levels were quite deficient, if not near zero.

I have come in for countless appointments — and paid a lot of money — related to inflammatory issues (eyes, skin, scalp, hair, fingernails, etc.) that have had a considerably negative impact on my quality of life. I am quite upset that I had to be the one to ask for this test, and that no one at Kaiser recommended it at any point from 2006–2015, a ten year period. Based on my symptoms, this test should not have been difficult for any MD I have seen at Kaiser to suggest.

With higher Vitamin D levels, the C-shaped rash disappeared. My eye redness also decreased markedly, my e-mails stopped seeming to skip words every minute, and the dyshidrosis went away. Oddly, despite these substantial improvements, my primary care physician’s response was that I should never have been tested in the first place.

Vit D deficiency would not be considered a common cause of inflammatory conditions and would not necessarily be part of a standard medical work up for the symptoms you have had. If your skin symptoms have resolved with taking vit D, I’m happy to hear that you had such a great result, but this would not necessarily be the norm.

That being said, much of the “hype” surrounding vit D in the past decade has changed over the past year with new studies on vit D. While it can be important for bone health, routine screening/checking is controversial. There’s a nice article that summarizes the current thinking of Vit D.

http://www.health.harvard.edu/blog/vitamin-d-testing-recommended-people-201411267547

I was floored. Rather than using the successful treatment as a data point to learn more about what was going on, my doctor was defending his clearly wrong position that I never should have been tested at all. And as evidence, he cited not a medical journal article written by a Vitamin D expert, but a blog post by a non-MD whose strongest credential was once working as a research assistant for a supposed fish oil expert.

Still, I had finally found something to possibly explain my slowly deteriorating state. I was thrilled, and treasured my Vitamin D pills, which really did seem to help.

Except not completely. The psoriasis spread again, this time to the back of my scalp on the left side — the same side where I had also had random jaw pain from sudden inflammation that resolved just as suddenly (contrary to my doctor’s suggestion that I probably had a chronic condition due to clenching and should check out mouth guards), and random cheek muscle twitching for over a week after a red bump appeared near a crack in the corner of my mouth just after shaving. Concerned that I might have somehow contracted HSV-1, which infects nerves, I insisted on a test that my doctor insisted back was unnecessary, but I once again went ahead anyway. Fortunately, it was negative. And my rash was still there, lurking as always. I could barely remember a time when I hadn’t had it.

New symptoms continued to appear. I realized that in addition to being tired, I felt especially bloated all the time. This, I had always figured, was just part of life and eating food, but it was getting worrisome. Painful diarrhea seemed to be a perpetual issue. And eventually blood began appearing every so often.

Alarmed, I did more research, until I stumbled upon a Hungarian journal article from 2006 linking Half-and-Half Nails and Crohn’s Disease. (See http://www.ncbi.nlm.nih.gov/pubmed/16699971.) I asked my doctor if I might have Crohn’s Disease. As always, he dismissed my suggestion.

I suspect if the only symptoms you have are bloating and occasional loose stools, you don’t have crohn’s disease.

Typically folks with crohn’s tend to have much more severe diarrhea, often associated with significant cramping. Many folks have to be hospitalized for attacks of crohn’s. Bloody diarrhea would often be a sign of a more severe crohn’s flare. Weight loss or other unusual symptoms might also indicate a more serious issue.

Crohn’s disease is usually diagnosed by colonoscopy. The indication or need to do a colonoscopy would be based on if you had symptoms that suggested a significant issue where we felt it was necessary to look for an unusual problem like inflammatory bowel disease. The much more likely cause of bloating and loose stools would be dietary intolerance. Let me know if you had other concerns regarding the crohn’s, but it doesn’t sound like something I would go looking for unless things got worse.

Though I definitely did not need to be hospitalized, he didn’t seem to get the message that things were already “worse,” which is the only reason I would have brought an issue up with him in the first place. Nor did he bother to inquire as to whether I had any other symptoms that might appear in serious conditions alongside Vitamin D deficiency and persistent bloating. Instead, my Kaiser doctor gave me a one-page Xerox (typical Kaiser protocol, in which the patient is treated like a kindergartner) on the “low FODMAP diet,” which suggested avoiding fruits and vegetables such as apples and asparagus — as it happens, basically any food that a Crohn’s patient would need to eat to make up for lost nutrients.

Eventually, I scheduled a colonoscopy, and then after my primary care physician warned me against unnecessary invasive procedures, cancelled it. A few months went by. And then things started to get really bad, at least relatively.

I stopped eating for almost three days, hoping that it would make the bloating go away. It didn’t. The bloody diarrhea came back. I rescheduled the colonoscopy, and then rescheduled it a second time for even sooner. In the meantime, I asked my primary care phyisican if it made sense to have an imaging study done, just in case the real culprit was something else nearby but hard to detect, such as pancreatic cancer or a liver disease.

“Personally, I’ll be honest with you, [John],” my doctor reassured me on the phone. “I don’t think you have any of those bad things. I hate to say it — I think you do have a lot of anxiety related to your symptoms which probably makes things worse.”

“Well, I think anyone would have anxiety if they didn’t want to eat,” I replied.

“Right, no I agree — I would agree with that. But if you don’t mind me saying this, there’s been a lot of times when you’ve been anxious about other things…which might be disproportionate to what the average person would experience.”

My doctor was calling me crazy: an over-anxious nutcase. I was not pleased. In person, I tend to be persistent, assertive and inquisitive, but hardly anxious.

“Yeah, I can appreciate that you see it that way. But personally I think you have a propensity to ignore what I’m telling you. I don’t know if we’re going to resolve that on this phone call, but what I’ve described to you over a number of years that you’ve been my doctor are a whole host of inflammatory problems.”

In reply, he didn’t deny it, and seemed a bit less against the colonoscopy. He clearly wanted very little to do with it, though, and repeatedly deferred to the “experts.”

Preparing for a colonoscopy is not a fun process, but I was actually looking forward to it and the certainty it might bring, which made it slightly easier to tolerate. Plus, fasting for one day is nothing when you’ve already done more than two. Finally, the day of the procedure arrived, and my friend drove me to the Kaiser hospital facility as required, since sedative narcotics are used, and driving is out of the question.

The nurses told me that I would likely not remember the actual procedure, and that afterward the doctor would go over the results with me and my driver, just in case I didn’t remember anything. The procedure went according to plan — the last thing I remember from the operating room is lying down, turning on my side, and noting the existence of an electrical outlet — but then things quickly went south.

I woke up, more bloated than I had ever been in my life from the carbon dioxide pumped into my abdomen to increase visibility, and correspondingly uncomfortable. The friendly nurse I had spoken with before the procedure told me that I was all set, and it was time to get dressed. I was drugged and drowsy. I could barely move, I wasn’t thinking straight, and I couldn’t get up. After a few seconds I tried again, and in extreme discomfort managed to change into my street clothes. They placed me in a wheelchair with my head in my hands, and had a nurse wheel me outside to my friend, who was already waiting in his car, per Kaiser’s instructions.

What didn’t happen was what I had been told was Kaiser’s post-operative procedure: that I would have time to recover and discuss the procedure’s results with my doctor and my driver present. Instead, they handed me a system printout that tersely said “some inflammation” and “focal inflammation” was found at the beginning of my large intestine and the end of my small intestine, and that tissue had been sent for biopsy. There was no further detail, though they did enclose a calendar wishing me an automated happy birthday. Not only had my friend not heard my conversation with my doctor — it had never taken place. He was never even offered a chance to come into the hospital.

I slept for the rest of the morning and afternoon as the drugs wore off and my body deflated. When I finally felt normal again, I was not entirely surprised to find that I had been right: though the printout didn’t say so, my colonoscopy suggested Crohn’s Disease. I messaged my doctor on Kaiser’s web site right away, but ran into the system’s devilish 1,000-character message limit. So I sent two messages, annoyed. Then I waited.

And I waited some more.

In the meantime, I did some research into my new diagnosis, and after reading about 20 journal articles, was staggered by what I found. Unbeknownst to me, Crohn himself had started out roughly 100 years ago on the assumption that this relatively new disease was caused by an infectious agent, a particular bacterium called Mycobacterium avium subspecies paratuberculosis (MAP). It’s not the same pathogen that causes standard tuberculosis, also known as TB, but it is related. Because mycobacteria are difficult to actually see under a microscope and also difficult to isolate, the theory was eventually abandoned by the scientific community in favor of a new theory: that the disease was an auto-immune response mostly influenced by genetic factors. This is the theory I had always heard about Crohn’s Disease.

By 2001, the auto-immune theory was looking increasingly dated and incomplete and a debate was again clearly underway in medical journals. By 2012, the scales had tipped back to the MAP infection theory, with increasing evidence for its relevance. Too many people (about 30,000 per year) were getting Crohn’s at too rapid a pace for genetics to be purely responsible, and patients with Crohn’s were showing up with the bacterium at rates much higher than control groups. In addition, MAP is the cause of Johne’s Disease in cattle (and several papers state that 91% of U.S. dairy cows are infected with MAP, not to mention 8% of beef livestock), and MAP lives in both milk and water. Due to the lipid-rich cell walls that are the hallmark of mycobacteria, pasteurization does not kill the microbe, meaning that essentially the entire country’s dairy supply and possibly a lot of its water supply is infected. Plus, hotspots of Crohn’s were showing up near affected waterways. Although not every single person diagnosed with Crohn’s Disease has a clear MAP infection, there were several explanations as to why detection might be spotty: MAP is notoriously difficult to isolate, requiring PCR detection of a gene in MAP DNA to truly identify it (though a more recent method developed with the Naval Research Lab uses nanoparticles and MRI of tissue samples to reduce detection time to one hour); and as is often the case in medicine, Crohn’s often looks like other intestinal diseases which may actually be distinct conditions.

To me, what was particularly intriguing about the MAP theory was that MAP is treatable by antibiotics, and in particular, one called Dapsone. I came across Dapsone while researching psoriasis and Vitamin D, and found a 2012 journal article from Chile (with rather graphic and unfortunate images) about a woman with a terrible case of genital psoriasis looking remarkably similar to mine that appeared to be completely cured by Dapsone therapy. (See http://www.ncbi.nlm.nih.gov/pubmed/23205337.) The authors of the paper, dermatologists, described Dapsone as a leprosy drug — which it is — that also seemed to have beneficial properties for certain skin disorders for reasons unknown. What they failed to note in their paper is the first sentence of the Wikipedia page about leprosy: “Leprosy, also known as Hansen’s disease (HD), is a chronic infection caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatosis.” In other words, the microbes that cause leprosy and likely Crohn’s belong to the exact same family.

Not surprisingly, additional research uncovered several case reports worldwide of Crohn’s Disease being cured by Dapsone treatment, going back to 1988. These were not mild cases like mine; they were awful, horrendous cases. Yet Dapsone made all of the symptoms magically disappear. I was still surprised that the Chilean dermatologists hadn’t pieced together that their patient was likely infected by MAP, and the gastroenterologists hadn’t pieced together that genital psoriasis specifically appeared to be a telltale sign of MAP infection. Nor had they seemed to catch onto this potential cure — Dapsone is hardly the drug of choice for Crohn’s treatment. Instead, doctors typically prescribe anti-inflammatory anti-TNF agents such as Remicade (produced by a subsidiary of pharmaceutical giant Johnson & Johnson), very expensive prescription drugs which have the perverse side effect of increasing susceptibility to infection by mycobacteria, which in turn make patients more susceptible to infection by even more bacteria.

Given my symptoms, these studies gave me urgent cause to be in touch with my doctor, who still had not gotten back to me. I wanted to know if the tissue taken duing the colonoscopy could be tested for MAP. Eventually, after a long delay, a reply landed in my Kaiser inbox, which I didn’t understand.

The pathologist will look for any changes consistent with infection, but no tissue was sent specifically for mycobacterial culture as the most likely diagnosis in your case (pending pathology results) is Crohn’s disease.

Apparently, my gastroenterologist was completely unaware of any of the medical research that had been conducted about Crohn’s and MAP for the past hundred years. I was stunned. I was even more stunned when the doctor who had actually performed my procedure left a voicemail saying essentially the same thing: Kaiser didn’t test for MAP because I probably had Crohn’s Disease. It was akin to saying that Kaiser didn’t test for HIV because I probably had AIDS. I found it difficult to believe that these people were really doctors.

Outraged, I replied to the message with three DOI citations to recent papers about MAP’s role in Crohn’s and also called Kaiser’s GI department, which was already closed for the day despite the fact that it was still before 5:00 P.M. Then I tried the toll-free advice hotline, and was connected to a cranky old woman who was neither a nurse nor a doctor and seemed flummoxed by my request to speak with an actual physician immediately. Eventually, by listing 20 symptoms, I convinced her to connect me to a nurse. The nurse in turn reviewed my chart and message history, and agreed that based upon what I was telling her, my doctor’s response, “seemed idiotic.” She agreed to have a Kaiser doctor on call call me back.

The doctor on call phoned promptly, and appeared to be in damage control mode. He suggested that these problems “[wouldn’t] be resolved tonight” and that it wasn’t definitive whether or not MAP actually caused Crohn’s Disease. As I told him, I didn’t care — all I wanted was a test. Maybe my hypothesis about my own case was right and maybe it was wrong, but it hardly mattered to me whether the entire scientific community had reached a consensus. He said I would get a call back from someone in gastroenterology, though he couldn’t guarantee one that night. Meanwhile, I was worried that my tissue samples would expire or be irreversably treated for some other culture in the pathology department, a point he said he understood.

No call came in that night or the next morning. Infuriated, I found the direct phone number for the department chief of gastroenterology. She wasn’t available, but her greeting stated that I could talk to her medical assistant by pressing zero. I did, and was told that the mailbox wasn’t accepting any messages. I called again and left a voicemail for the department chief directly: “I’m a patient who had a colonoscopy two days ago. I was not given an opportunity to discuss the results with my doctor; [the doctor] who performed it called yesterday but only left a voicemail with no phone number to get back in touch with him; [the other doctor] who I have been messaging is not responding with any sensible answers to my questions, and I am concerned that tissue that was sent for a biopsy is not going to be tested for the correct pathogen, so I would appreciate a call back as soon as possible. My phone number is [digits]. If I don’t get a call back by noon today, I will drive to Kaiser and find you. Thank you. Bye.”

It’s important to note that Kaiser does not give out phone numbers or e-mail addresses for its doctors. The only way to reach a doctor is through a pre-scheduled in-person appointment, which can take weeks or months, or through Kaiser’s very limiting Epic web-based messaging system. Epic only allows you to message doctors who have already been scheduled to see you and for whom there is an active one-year referral if the doctor is a specialist. And since my colonoscopy was performed by a doctor covering for another doctor covering for another doctor, I couldn’t even message the doctor who had done the procedure. My choices in an emergency were to track down phone numbers, or show up in person.

I didn’t get a call back by noon. Instead, at 1:32 P.M. I got a call from a man who identified himself as the Support Services Administrator at Kaiser’s nearby facility.

Me: Hello?
SSA: Hi, may I speak to [John] please.
Me: Speaking.
SSA: Hey [John], this is [name], I’m the Support Services Administrator at Kaiser [location]. How are you.
Me: I’m not great. Are you a physician?
SSA: I am not.
Me: Then why are you calling?
SSA: Because I’m the head of the Threat Committee here at the hospital.
Me: The what committee?
SSA: I’m concerned about your last phone call.
Me: I’m sorry — what committee?
SSA: The Threat Committee.
Me: Why would the Threat Committee have anything to do with my medical care?
SSA: Because we’re concerned about your last phone call and the message that you left.
Me: Yes — saying that I’m going to find the doctor who is running the GI department to figure out what is going on!
SSA: Okay, well what can we help you with? What is it that you’re trying to find out?
Me: I’m trying to find out if I’m infected with a pathogen that your doctors seem completely unconcerned about.
SSA: Okay, well, perhaps she’s unconcerned because you’re not infected with the pathogen.

At this point I was taken aback, and the glib insult, not to mention the presumption that a non-physician “Threat Committee” chairman could now make actual medical determinations, made me even more upset.

Me: Are you serious? Are you a physician? I think you already said you weren’t. How would you be in any position to evaluate that kind of determination?
SSA: Have you physicians told you anything otherwise?
Me: You know what, sir, I’m not going to have this conversation with you. If you have a problem with my trying to get medical care because your doctors are incompetent, you can take it up with my lawyers. Because this is headed there real fast.
SSA: Okay, well, please, have you or your lawyers call Member Services right away so we can get this resolved please. The theats that you’re making — coming onto this campus and finding your doctors — are inexcusable. So…
Me: Are you kidding me? I’m not permitted to find my doctor?
SSA: [Nervous laughter.] You have to be very careful the way you word your messages, okay?
Me: This is outrageous. Completely outrageous.
SSA: Well, call Member Services…
Me: I did not make any kind of threat to the doctor’s…anything!
SSA: You have to understand the way you left this message. I listened to the message, okay? We want to help you…
Me: No, I don’t think you do!
SSA: …but you can’t leave messages like you’re going to come find us. Okay? That has many implications when we have a campus this big.
Me: I think you’re approaching this completely incorrectly. I think this is totally ludicrous. Who is your supervisor?
SSA: You can call my supervisor. He’s the CEO of the hospital.
Me: Please, let me do that. What’s the phone number.
SSA: Well, you’re going to call Member Services first, because that’s how this gets handled.
Me: No. I want to know the name of the CEO of the hospital, and the phone number.
SSA: You’re going to call Member Services… First of all, you shouldn’t be calling any of the doctors directly anyway. That’s not how Kaiser works. You have to go through Member Services.
Me: No, actually, that is how Kaiser works.

To set up my “Derm In Medicine” appointment, I had, in fact, called my primary care physician’s phone line directly, after being told to do so.

Me: The way Kaiser works is that I need to talk to a doctor when I’ve had an operation and there’s a positive result! And you kicked me out of the hospital without the chance to talk to anyone!
SSA: Who… Who kicked you out of the hospital?
Me: I don’t know! I was sedated! That’s the problem. Why do you think I’m so upset?
SSA: So…how did you get home?
Me: A friend — because you’re required to have a driver with you — he was supposed to, according to the nurse, meet with the doctor and me so that if I couldn’t remember anything he would still be there to remember it, and they never did that. Instead, they had him waiting outside in his car and while I was still half-sedated, they had me go out to meet him and drive home, without ever talking to a doctor. And now you’re giving me the runaround trying to find anyone I can talk to about my medical care, which is a time-sensitive matter, and telling me that I’m making “threats!” You’re damn right I’m making threats! Legal threats, at this point!
SSA: Okay, well, look. You need to call Member Services.
Me: I have called Member Services, damn it!
SSA: Say that again please?
Me: I have. Repeatedly. And I was told I would get a call back from a physician, and you are not a physician.
SSA: [More nervous laughter.] That’s correct, I am not a physician. So, just… You need to understand how this works here. You need to go through Member Services to get to your doctor. Your doctor is doing other procedures all day long, and so are the other doctors in this hospital. So Member Services handles those things, okay?
Me: I am aware that I’m not the only patient, but I have a right to medical care when I am in the hospital, and you denied me that right.
SSA: You absolutely do.
Me: So then what is the issue here?
SSA: But I don’t see how you didn’t get your medical care while you were in the hospital.
Me: I WANT TO TALK TO A DOCTOR.
SSA: Okay sir, call Member Services.
Me: I did!
SSA: When?
Me: Last night! Look at my chart!
SSA: Okay, sir, call Member Services again, and find out if you can get an appointment with your doctor. You can’t make a threat to come in here to see your doctor. That’s not how this works. You have to see it from our side. It is a threat when you say you’re going to come find your doctor.
Me: Frankly I don’t know who you are or how you are in any position to tell me how I should handle my medical care, but I will tell you “this works:” have a doctor call me in the next twenty minutes, or I will sue your ass.

I hung up. I didn’t wait the twenty minutes; I knew no call would be forthcoming. I drove to Kaiser, still concerned about the biopsy tissue being tested for MAP, which everyone was clearly too happy to ignore or too dumb to understand. Upon arriving, I asked the volunteer at the front desk where I could find the CEO’s office, but she had no idea, saying that no one had ever asked her that question before. I told her she might want to think about whether it was worth volunteering her time for an organization like Kaiser (which has $30 billion in cash reserves according to one of the employee unions, despite its “non-profit” status). She seemed surprised.

Instead I went to the gastroenterology offices and asked to speak to the department head or the non-physician department manager. The receptionist offered to help, took my Kaiser card, and went back to find someone. Apparently she called security, because by the time I grew tired of waiting three men caught up with me in the hallway and asked if I was [John]. One of them was the Support Services Administrator who had called me on the phone earlier. The other two were large men, both Kaiser security guards. After a brief debate in the hallway, I agreed to play their game of “going to Member Services” instead of actually talking to a doctor since I had no desire to be physically assaulted.

At Member Services, the Support Services Administrator continued to criticize me for presuming that I had the right to speak with a doctor about a time-sensitive medical matter. I was furious and made it clear that I had every right to speak wth a doctor, immediately. Since I was intentionally being loud at this point, we were ushered into a small side office, with the two security guards, the SSA, myself, and the Manager of Member Services inside. She introduced herself, asked how she could help, and began taking hand-written notes. But very quickly she began asking sensitive medical questions.

“I’d like the security people to leave,” I told her. She refused.

“I’ll need them here for my own protection.”

“Your own protection?” I repeated, dumbfounded. “Against what?”

“I don’t know,” she replied.

“I’m not armed.”

“I don’t know,” she repeated.

“I have nothing on me that could possibly hurt you,” I said.

“I don’t know that,” she insisted. “So what can I help you with?” I was acutely aware of the two thugs and the SSA still in the room.

“I’m not comfortable discussing my medical care with people here who are not physicians or nurses,” I insisted. “There are laws about this in this country!”

The SSA cut in. “Yeah, there are. There are also laws about making threats, okay.” Now, in addition to pretending to be qualified to make medical determinations, he was pretending to be a lawyer, apparently not realizing that the most important law about my so-called “threat” —repeatedly asking to speak to a doctor about a serious diagnosed medical condition — was the First Amendment.

“Okay, are you a lawyer?” I asked. “I will not waive my HIPAA rights and have these people here while we discuss...”

“We’re not going to discuss anything that has to do with HIPAA. We’re trying to get you…” the SSA replied. I cut him off.

“We are! I’m about to discuss my medical care, sir.”

“We have every right to be here under the law,” he replied. I disagreed.

“No, you don’t.”

“We perceive what you did as making a threat. So we are going to be here and see you through this process.”

The SSA pointed out that he’d never spoken with my doctors regarding my care, which made me wonder how he had found out about my voicemail.

“We monitor what we need to monitor,” he replied cryptically.

“I’m not going to say anything until you leave,” I countered.

“Do you want to see the doctor and make an appointment or not?” the SSA responded.

“I can make an appointment without your assistance. That’s not the issue,” I told him.

“Did you call Member Services last night?” he asked.

“Yes,” I said.

“Who did you leave a message with?” he insisted, clearly doubting my story.

“I don’t know. I called and they said that they’d transfer me to a nurse, and I spoke to the nurse, and I spoke to a doctor.”

“So it wasn’t Member Services,” the Member Services manager said. Now I was confused.

“I have Kaiser’s phone number. I call it. I don’t know if you call it ‘Member Services’ or the ‘Advice Line’ or ‘Customer Service’ or what it is.”

“What time did you call?” the SSA wanted to know.

“I think I probably called around 5:30 because I tried calling GI just before five and they wouldn’t pick up the phone. And then I was upset that they wouldn’t even pick up the phone during business hours, so I called the other phone number, whatever phone number it was.”

“Do we have any record of that?” the SSA asked.

“Of course you do,” I said, again insulted and infuriated. This pointless debate went on for some time until I finally questioned the relevance of the entire line of questioning and pointed out that I didn’t even know why I was at Member Services when I actually wanted to speak with a doctor. I again pointed out what had happened, and not happened, after my procedure.

“That’s why you need to speak to our department,” the Manager said, as if it were my obvious responsibility to understand Kaiser’s labyrinthine MBA-crafted bureaucracy.

“Well, here I am!” I said.

“If that didn’t happen then we need to look into why that didn’t happen.”

“Well then please, by all means, look into it,” I replied. For the next twenty to thirty minutes I gave a detailed account of the saga, until I got to questions none of them could even understand involving the tissue biopsy, and made the point that none of them were even qualified to be involved in the conversation. At that point, the Chief Guard, perhaps insulted, threatened to remove me from the Kaiser campus because I was being too emphatic for him to apparently handle.

“You have to give me a chance to work on this,” the Manager said.

“No, I don’t, frankly. Because I was in the hospital and that was your ‘chance’. That was your chance to address all of this. And you waived it. You waived it by kicking me out while drugged. Okay? If you were in the hopsital, and you were drugged, and you had a positive result…”

“It’s not about me,” the Manager weakly tried to argue.

“No, I understand. I’m saying, if a person — if a rational person with a medical problem were in the hospital and they were drugged and they had a procedure with an abnormal result, and then they were kicked out of the hospital before being given any chance to talk to a doctor, they would likely be very upset. Would you agree?”

“They could be upset, but not to take it this far,” the Manager said. “To this point, where… You’re upset because your doctor has responded to you but you’re upset at his response. You’re saying his response is not satisfactory.”

“Your own staff said that,” I replied.

“I wasn’t in that conversation so I can’t comment on it.”

“Well, I have it recorded,” I said. “So, I’m happy to play it back for you if you’d like.”

“No,” the Manager said.

“No. Okay, I see.” I said, resting my case.

“So you’re saying you’re not going to leave unless you get a response right now.”

“That’s right,” I replied.

“I can’t guarantee a response for you right now.”

“That’s fine,” I said. “But I’d appreciate it if you’d try.”

Eventually, the Chief Guard, the SSA, and the Member Services manager left the room, leaving the Assistant Guard to babysit me. Unfortunately for him, he was not actually sitting when they left, and there were not enough chairs for everyone, so he could either continue standing for an unknown lengthy period of time, or awkwardly steal the remaining chair. He stood, but based on his regular shuffling, he was clearly uncomfortable. I didn’t say anything.

Finally, the Chief Guard and the Member Services manager came back with a peace offering: a doctor’s appointment the following day scheduled for 3:15 P.M. with yet another gastroenterologist I had never seen before. I agreed. The manager also informed me that my fears had been realized, and that my tissue specimens were no longer usable for MAP testing.

She also asked if I still wanted her to file a griveance about my care. I gave her a funny look. She seemed to think that my concerns were baseless. I told her I would wait while she wrote it up, but she replied with, “Come on, I have so many other issues to deal with,” and proceeded to try to convince me to write it myself. “It’s not going to have as much detail as you may want,” she warned about her own notes, encouraging me to use the on-line process.

“What was the point of this entire exercise?” I asked her, incredulous, as she made it increasingly clear that she didn’t really intend to do anything with her notes.

“You got your appointment,” she said.

“But you could have just given me that right away,” I noted.

“No, we couldn’t have. You wanted to have something done, like, right now.”

“Well that’s not unreasonable given the circumstances!” I said.

“Go ahead and put it through then?” she asked for probably the fifth time.

“Please.”

I wrote down the name of the Chief Guard and his sidekick, and walked out into the hall. Much to my surprise, a new suit was waiting, standing, facing the door. The nametag said “COMPLIANCE.”

“Compliance?” I asked the Suit.

“That’s correct,” he said.

“Is this about me or are you just here?” I asked.

“I’m just here,” the Suit said. But the Suit was standing in the hallway, looking at the door I had just exited, as if he had been waiting for a bit, right next to the SSA. And there was no reason to be “just [t]here” because the hallway led to basically two things: Members Services, where he was not going, and an emergency exit.

“Okay. Compliance with what exactly?” I asked.

“Compliance,” he said. Based on the smug non-answer and the job title and the clothes, it seemed clear that he was a lawyer.

“With what?” I persisted.

“Everything compliant,” he said.

“You’re not answering my question,” I said.

“I didn’t know I had to give you my job description,” he said.

“Well you don’t have to,” I began, but he offered back, “I work in the compliance department here at Kaiser Permanente. Privacy — health and privacy.”

“Okay, and because I raised HIPAA, you’re here?”

“I’m just here talking,” he said.

“In the middle of the hallway,” I deadpanned.

There seemed to be no point in pressing further. I’d clearly set off alarm bells. “Have a good day, gentlemen,” I said, and walked toward the main entrance. It looked like I was going to finally leave. But I didn’t leave, and the Guards didn’t follow me.

Instead, I walked up the stairs to the top floor, where I figured the CEO’s office was, and I found what I was looking for: a corner suite labeled “Administration.” There, I found a friendly receptionist. I told her I wanted to talk to someone about problems I’d had with the hospital. After listening to an abbreviated version of my tale, she offered, “Well, you don’t look sick.”

In a sense, she’d hit the nail on the head. My symptoms were a collection of seemingly minor issues. Gray thinning hair, but not overwhelmingly so. Psoriasis you couldn’t see. Blistering skin conditions that came and went. I showed her my strange-looking fingernails. She called someone ironically named Patience, who materialized ten minutes later. We walked back to a vacant office, this time without the entourage, and I began my story from the start.

Patience, who was trained as a nurse but also appeared to have the MBA degree requisite to be a hospital administrator, at least listened patiently, and offered her apologies, which she said were sincere. I almost believed her, except that she defended Kaiser by arguing that my symptoms were “complex.” And that’s just not true.

Yes, I had a lot of symptoms, and I still do. But some of them were dead giveaways, and all of them were missed by doctors — not just missed, but actively ignored, and even ridiculed as “anxiety.” The spreading genital psoriasis; the Half-and-Half fingernails (a known Crohn’s symptom); the hair loss; the gray hair (malabsorption, a known Crohn’s symptom); the twitching muscles likely stemming from angular chelitis (a known Crohn’s symptom); the low HDL (a known Crohn’s symptom); the fatigue (a known Crohn’s symptom); the dyshidrosis, the red eyes (episcleritis, a known Crohn’s symptom); the red scalp; the inflamed jaw; the extremely low Vitamin D (malabsorption, a known Crohn’s symptom); the constant bloating (a known Crohn’s symptom); the diarrhea (a known Crohn’s symptom); the blood (a known Crohn’s symptom). In the end, it was a portrait of a disease that my doctors didn’t understand the origins of, and still don’t care to.

My case is hardly unique — given that 91% of dairy cows apparantly have MAP; that MAP is transmitted through milk, water, and saliva; that many doctors seem unaware of its existence; and that cases are drastically increasing, it may actually be a public health crisis — and yet it illustrates a number of problems with Kaiser and with our health care system more broadly so well. By having each doctor act as an independent, nominally specialized cog in a large machine, my symptoms were all treated as episodes isolated by time and by field, until I had so many of them that my primary care physician had grown tired of hearing from me. Even if Kaiser’s IT systems had permitted me to send research papers to my doctors — which they don’t —it never even occurred to my doctors that keeping up with research should even be part of their job description. Instead, they prescribed harmful fad diets, and repeatedly recommended against tests that had already shown, or would eventually show, alarming results. Then, when I questioned their judgment, I was literally deemed a “threat,” and was repeatedly threatened by Kaiser myself. It was hardly the kind of care that would help me “Thrive,” as they love to boast in fancy marketing materials.

At home I searched for the SSA on-line. He turned out to be ex-military, having only worked at Kaiser for four months. He is a member of Iraq and Afghanistan veteran groups on LinkedIn. And while I commend him for his patriotism and service, he’s in the wrong job. A hospital in the United States isn’t the same as the streets of Falluja. Not everyone is a threat. Not everyone needs to be monitored. And bored, trigger-happy veterans shouldn’t be in patient-facing roles, even if their employer is a Pentagon-like bureaucratic monolith as rigid as Kaiser Permanente.

Fortunately, I had my doctor’s appointment coming up the following day. Was I ever in for a surprise.

Continued in Part II.