If you're living with a chronic illness, you're in the right place.

Wednesday, June 7, 2017

Medical Gaslighting

4:14 AM Posted by Tiffany Taft , ,
Ever walk out of a medical visit questioning your own reality?  Like, what the hell just happened?  I am having symptoms, right?  They are serious, right?  I wouldn't show up to see a doctor if I wasn't actually in distress, right?

The term "gaslighting" has been around for a long time, gaining in popularity in recent years, as a way to describe a strategy of psychological manipulation to make someone question their own perceptions of reality.  The term comes from a 1930s play Gas Light where a husband goes to great lengths to convince his wife she's insane and her only tangible symbol of reality becomes the nightly dimming of the gas lights in their home.

Gaslighting is a malicious act.  I don't portend in the slightest that 99.9% of medical professionals intentionally gaslight their patients.  However, there are definitely qualities of our exchanges with the medical system that can leave us feeling, well, insane.

Fundamental to this, I believe, is the inherent power dynamic that exists between doctor and patient.  Some doctors are really good at keeping that as even as possible, but at the end of the day we as patient have an inherent vulnerability.  Throw in a flimsy exam gown and we're knocked down a few more pegs.

Recently, I had an emergency room visit.  I really dislike the ER.  Not for the obvious reasons, but because I feel like the ER is one of the worst places, but not the only place, for medical gaslighting.  You have to tell your story to at least 3 different people - the triage nurse, the room nurse, the attending physician, maybe a medical student or a resident, then if a specialist is summoned you tell them and maybe their resident.  It's like nobody communicates with each other, either verbally or via the electronic medical record.

The same questions are asked in a relatively robotic manner, and each answer is received differently based on each person's personality, perspective, and bedside manner.  You can tell the nurse about your pain and receive an empathic response and tell the attending physician the exact same words and have her imply you're drug seeking.

My recent ER trip was via my gastroenterologist's clinic.  So she took me there after an exam in her office for, let's just say a lot of bleeding (I'm fine).  I didn't walk into the ER and I actually was just going to go home but was summoned by my doctor to come in after I called her because, you know, bleeding is a bad thing.

My hesitancy to do so reflects what gaslighting can do to you as a patient with a chronic illness:  "It's just some blood.  Nothing to see here.  It'll stop.  I'll be fine."

Based on her office assessment, I wasn't fine and she took me to the ER where I proceeded to sit, with her in the room the whole time, for 5 hours.  We even talked about this very topic as the parade of ER people came through, did their exams, ordered their tests, and each interacted with me in a different way.  By hour 4, I looked at her and said "this is the point where I start to feel crazy."

I had bled enough to make my clothes look like a crime scene, yet I questioned my whole reality and perception of just how bad it really was.  My gastroenterologist of 7 years, who I trust implicitly, made the ER decision after her own assessment, yet I questioned my whole reality and perception of just how bad it really was.

The tests didn't identify the source of the bleeding (as I predicted), but a couple of things were ruled out, which was good.  I have to see another doctor to check things out, but I like him and he won't gaslight me so I've got that going for me.

For a while I thought I was wrong about this phenomenon, like my reality about medical gaslighting was wrong (I think that opens up a wormhole with Morgan Freeman on the other side).  A few months ago I took a good friend to the same ER who ended up being admitted for a few days, but not before she went through a similar experience.

The nurse that night was really phenomenal and he kept us informed of the test results, plan, etc. There was a shift change during our time there so she saw 2 different attending physicians.  The first one reported that she had a normal CT scan.  Unbeknownst to him, the nurse had read us the preliminary report verbatim about 15 minutes prior which did show some things related to her Crohn's disease, but nothing super serious.  She looked at me like "did that just happen?"  The second ER physician was worse than the first; I think he discussed her gut microbiome at some point but it was probably 2 in the morning by then and we were getting kinda delirious.

To me, it was obvious what was going on with her and it was serious.  Her gastroenterologist wanted her admitted and called the ER with her instructions after she spoke with my friend about the plan.  Yet this was essentially ignored and she was put through the same maddening process that left her feeling, well, insane.  It was somewhat validating to witness this first hand with another person.  Which sounds shitty, but it was.

Seeing her experience was my own gas lights to remind me that this isn't normal.

I'm not sure what the answer is other than being aware when it's happening and doing our best to remind ourselves that we're not delusional, that our symptoms are real, that our distress is real, and we deserve good medical care.

I want to end with a genuine acknowledgement that being a physician, especially an ER physician, is a really tough job.  There are people who abuse the ER, who are seeking narcotics because of an ongoing addiction, who lie about their situation.  I don't know what the actual percentage of ER visits is that fall into these categories, and I appreciate that this reality, and the reality of the whole damn system, can foster cynicism.  I would guess until some major changes happen in our medical system, gaslighting will continue to be something we, as patients, struggle with.


Friday, May 12, 2017

Yes, Insurance Covers Seeing a Therapist for Your Medical Illness

Well hey there boys and girls!  Long time, no blog.  I could get into the reasons why I fell off the wagon, but there are many and it'd be a long, drawn out story that isn't very interesting.  So instead of rehashing the past, I'd like to jump right into this post on a dry but critical topic.

Health insurance.

In the news a lot the past few months, isn't it?  That's not why I'm here.  I'm here for more pressing things like CPT codes.

I've been to a couple of conferences in the past few weeks and this has come up more than once, from both my physician peers and patient advocates:

Will insurance cover visits to a mental health clinician for issues dealing with a chronic medical illness?

The answer, Virginia, is yes.

Who the hell is Virginia?

In case you missed it, I'm a licensed clinical psychologist.  One of several types of clinicians qualified to do psychotherapy.  I hold a doctorate in clinical psychology (PsyD) which means I did 5 years of graduate school and at least 1 year of post-doctoral training before I took the licensing exam and actually passed it.  Clinicians with a PhD (doctor of philosophy in clinical psychology or counseling psychology) after their name have the same training.  The PsyD is a newer degree and has been around since the 1970s or so while the PhD has been around since forever (rough estimate).

Factoid:  By the time someone graduates with a PhD or PsyD in clinical psychology, they've completed around 5000 hours of clinical work.  Over half of it is done for free.

There are also people with a Master's degree who can get a license and will have the letters LCPC (licensed clinical professional counselor), LPC (licensed professional counselor), LMFT (licensed marriage and family therapist), LCSW (licensed clinical social worker), or LMSW (licensed medical social worker) after their name.

Factoid:  LCSWs have to complete 2000+ hours of supervised clinical work after finishing their degree before they can take the licensing exam.

Last, but not least, are psychiatrists (MDs).  Some psychiatrists still do therapy in addition to prescribing medications, but this seems to be getting more rare.

Stay with me, there's a reason for going into that.

Depending on what level of training the therapist has, they can bill insurance for seeing a person coming in for a medical illness differently.  I don't know who set up the rules, and they may vary by state.  My frame of reference is Illinois.  So please learn from me then investigate the rules in your home state.

When you receive medical care for any type of service the clinician will bill your insurance using Current Procedural Terminology (CPT) codes - 5 digits that magically convey to the insurance company what the clinician did during the visit.  Depending on what you're going in for, several CPT codes can be listed for one trip to the doctor's office.  There are LOTS of CPT codes.

In the mental health world, there are CPT codes specific to counseling/psychotherapy, psychological testing, family therapy, and medication management.  So if someone comes in to see me for just depression or just anxiety or just OCD, or all three at once, I use either 90834 or 90837.  The difference lies solely in how long I spend in the session - 90834 is for around 45 minutes, 90837 is for an hour or so.

In my little world of mental health + medical illness, there are very specific CPT codes called "Health and Behavior Codes." Remember that term.

H&B codes are 96150 for the initial consultation, 96152 for the therapy session, and 96154 if I meet with family members.  So if someone comes in to see me for Crohn's disease or lupus or cancer, whether they're depressed or just need a little help coping, I bill using H&B codes.

There is no session limit for my seeing a patient with H&B codes.  I can see you weekly for 27 years using H&B codes (might reflect poorly on my therapist skills, but that's beside the point of this blog entry).

Side note:  There also is no limit for outpatient therapy and the same 27 year scenario applies thanks to the Mental Health Parity and Addiction Equity Act of 1996 and 2008, as well as the Affordable Care Act.  However, some insurance companies still tend to be difficult about unlimited mental health services.  I rarely run into session limits in my practice, but I also don't bill with mental health codes that often.  Back to H&B.

The other cool part of H&B codes is I bill using your Medical Diagnosis not a new mental health diagnosis.  Whoa.  I'll try to summarize this in a simple example:

Joe was recently diagnosed with Crohn's disease and is feeling overwhelmed.  Joe gets a referral to see me because his gastroenterologist is on her game and recognizes the importance of mental health. He has Blue Cross Blue Shield of Illinois PPO, a plan I am in-network with.  Joe's initial visit is billed using the CPT code 96150 under his Crohn's diagnosis code (yep, more codes:  K5010).  He sees me for 12 sessions, each billed under 96152 and K5010.  Joe has a $20 co-pay for each visit so his out of pocket expense is 20 x 13, or $260.

These are the basics of health insurance and seeing a therapist when you're struggling with a medical illness.  There are differences between insurance carriers and even between plans at the same carrier.  I'll try to summarize some of the main ones but ALWAYS verify with your own insurance carrier that seeing a therapist is covered.
  • Network restrictions to benefits (in-network, out-of-network) also apply to therapists just as they apply to physicians.
  • Co-pays, co-insurance, and deductibles all apply to H&B code services, much like they'd apply to seeing your rheumatologist or gastroenterologist.
  • Therapists with an LCSW or LMSW cannot bill using H&B codes, at least in Illinois.  So my practice partner, Stephanie, uses mental health codes with a benign diagnosis of "adjustment disorder" when seeing the majority of people with medical illness in our practice.
  • Not all insurance companies recognize H&B codes.  Medicare does.  As does Blue Cross Blue Shield.  
  • Some therapists may opt to bill with mental health codes versus H&B codes due to differences in reimbursement.  This isn't illegal or unethical, rather up to the individual clinician or practice policies.
  • Most insurance companies recognize, and pay for, H&B services delivered via tele-mental health (e.g. FaceTime or other HIPAA compliant video chat). This is a whole other blog post, but the therapist must live in the same state as you.  We use it in our practice.

Calling insurance?  Here's what to say:  Hi, I'd like to see if I have coverage for specific CPT codes under my plan. When asked which ones, list these: 96150, 96152 (H&B) or 90791, 90834, 90837 (mental health)

I hope this was helpful.  Insurance is insanely complicated and can feel overwhelming.  The good news is it is very highly likely that you have access to mental health care for coping with chronic medical illness under your insurance plan.  I don't know what the changes happening in Washington DC will do to impact this, if anything.  If something shifts, I'll be sure to update ya.


Wednesday, December 7, 2016

13 Reflections on 2016

4:54 AM Posted by Tiffany Taft , ,
2016, what a year eh?  The Cubs won the world series (!!!).  Donald Trump was elected president (???). We lost Prince and David Bowie and Mrs. Brady :( :( :(. People are saying it's the worst year yet.  But people say that every year, probably since the inception of calendars.

I'm going to go out on a limb that 1665 or 1863 or 1942 were worse years than 2016.  By a hair.

I don't like to bitch about an entire year because I know that we humans are programmed to filter out the positive and focus on the negative.  It's supposed to be protective, keeping us in tune with our environment so we don't get eaten by a predator. But in our non-predator based world this mechanism often just turns us into a bunch of Negative Nancys.  Nancies?  Whatever.  Nancy has a bad rap, anyway.

Today is the last day of IBD Awareness week, 2016.  I've enjoyed following all of the stories from people living with Crohn's disease or ulcerative colitis via social media, including inspirational stories and raw, post-surgical stories complete with pictures to show us just how awful these diseases can be.  I think we need these polar opposite stories, and everything in between, to not only lift us up with hope but also let the world know just exactly what this f-ing disease can do to a human being.

I'm excited to get to meet several of these IBD patient advocates on Saturday at the Advances in Inflammatory Bowel Disease conference in sunny Orlando Florida.  I'll be moderating a panel discussion on patient empowerment.  And I get to see my mentor of the last 12 years who moved to New York in 2016 to run the IBD psychosocial program at Mount Sinai in NYC.  AND it's not going to be 25 degrees with snow on the ground.

Plus, room service.

My participation in IBD awareness this year has been less than stellar and certainly lower than in previous years.  I did make a poster via Crohns and Colitis UK:

I'm not sure why I didn't do as much, but I'll go with it's just part of the natural ebb and flow of living with a chronic disease.  Sometimes you're all in and sometimes you just want to put it on the shelf for a little while and not look at it.  You can see the latter is the case based on my facial expression.

Plus, this past year I've been forced to focus on the upper parts of my digestive tract and figuring out this eosinophilic esophagitis thing.  As of today, I'm still on an elimination diet with a PPI medication.  I'll have my 4th upper endoscopy in the next month or so to make sure all the eosinophils are gone and the ol' esophagus is as smooth as a baby's ass. With no diaper rash.

That's such a poor visual. I'm sorry.

So if 2016 is a dumpster fire of a year, then I'd like to look at both the negative and positive that I've experienced this year.  The bags of trash and the marshmallows, if you will. You can decide which is which.

1) We got a puppy.  Her name is Annabelle and she's a Plott Hound mix who showed up in the local humane society from down state Illinois.  Evidently the Plott Hound, a breed of German descent, is the official dog of North Carolina.  Who knew?  She's better at not peeing on the floor but yesterday she chewed on a chair leg for about half an hour before anyone noticed.

2) First inpatient hospital stay is under my belt.  A truly eye-opening experience that showed me how helpless you can feel while at the same time showed me I have an amazing gastroenterologist who truly has my back.  That provides a sense of ease that I can't really put to words.

3) I lost 15 pounds from my symptoms and subsequent elimination diet.  Screw Slim Fast or Atkins.  Want to lose weight? Eliminate soy, wheat, barley, peanuts, almonds, tuna, sesame, celery, and apricots from your diet for 2 months.  Then take out dairy, eggs, all tree nuts, all fish and shellfish for another 2 months.  You're welcome.

4) I discovered I have a secret admirer.

5) I met with clients living with cancer, IBD, IBS, MS, mast cell disorder, EoE, congenital heart defects, obesity, post-traumatic stress disorder, fibromyalgia, vulvodynia, bipolar disorder, cyclical vomiting, GERD, major depression, people hoping to undergo bariatric surgery, people who had bariatric surgery and it failed, and others, over 1,000 times. 

6)  I published a few research articles.

7) We have 2 post-doctoral fellows training with our practice.  One just filed her licensing paperwork and one is 3 months in.  More health psychologists!

8) Got my first iron infusion.  It worked in that it reversed the iron deficiency anemia.  It failed in that I did not become Wolverine.

9) Managed to stay compliant with Cimzia for a year, which for me is a victory because I sometimes like to go off my Crohn's medications.  Bad news is it's wearing off (probably because I've gone off and on the drug for the past 6 years because of pregnancies and being stubborn). I had to switch to 1 shot every 2 weeks rather than 2 shots once a month.  So far that strategy is working and maybe I'll get another year out of it.  Nobody knows and I'm not asking.

10)  I did not win the lottery.  I didn't play, either.  Suppose those 2 things are related.

11) The Cubs won the world-fucking-series!!!!!!!!!!!!!!!!!!!!!!!!

12) A close friend of mine with Crohn's had her 4th fistula surgery.  It worked but then at her follow up appointment with the surgeon they found another one.  Demonstrating just how cruel IBD can be.

13) In 23 days I'll have completed my 41st trip around the sun.  I'm alive.  The rest is secondary.

Happy 2017!

Monday, November 7, 2016

Oh, Hey!

1:10 PM Posted by Tiffany Taft , ,
Greetings, blog readers.

You may or may not have noticed, but our blog has been deactivated for the last few weeks.  I'd like to say it was because we were overwhelmed by the simultaneous anxiety and ecstasy of the Cubs playoff run and World Series victory.  Sorry if you're in Cleveland and are reading this.  Maybe next year?

Alas, it was for a different reason.

I don't want to get into it too much, but let's just say being a semi-public figure while being a patient is a weird, weird place to live sometimes.  Don't get me wrong, I'm not even implying I have any sort of celebrity status.  But I'm out there enough to show up on many Google search hits (that must count for something, right?)  When I put personal information out on this blog, as I have the past year with my experiences with EoE, it creates a vulnerability.

Some people in the world have difficulties with maintaining boundaries. Combine this fact with the aforementioned vulnerability and it can cause one to take a step back to evaluate their online presence, blog included.  But, after some reflection, I decided not to recoil from this weird, weird world I live in and continue to bridge these two identities as well as I can.

It felt wrong to run away.

We have an orchid in our office that has been consistently blooming for 2 years.  I'm no botanist, but my previous orchid experience tells me this is an anomaly.  Hell, other orchids in other rooms in our office suite have come and gone, sometimes rather quickly.  Not this plant.  I've aptly named it "The Highlander" because a) I'm old and like to reference movies from the 1980s and b) anything that refuses to die in my life is named this.  I once had a plecostomus who jumped from a fish tank multiple times, survived a tank water heater mishap when all the other fish died, and went on to live for years.  Highlander fish.

This orchid has sprouted a new stem even though the current stem has 3 blooms open and another coming to life.  This is the most resilient damn orchid I've ever seen.

If this plant can keep going, so can I.  But if any of you decide it's a good plan to call me at 5 in the morning to wish me good health, don't.  Boundaries.

Highlander Orchid

Saturday, October 1, 2016

The Most Amazing Breakfast

6:19 AM Posted by Tiffany Taft , , ,
My posts have been all negative Nancy lately and that's not how I am usually. I swear. Maybe you've seen that thing going around social media to sum up your persona via 3 fictional characters.  Mine looked like this:

Pippi Lucille Gibbons. So let's shake things up; how about some good news on this fine autumn Saturday?

2016 has been an interesting year for health.  I was looking at my MyChart account the other day and noticed I'm coming up on 1 year since my first upper endoscopy that put me on this EoE with IBD path. 365 days. Time flies when you're having fun! 

If I took the time to add it all up I'm pretty sure I've amassed between $7 and $7 million in medical expenses since then across 8,456 doctor's appointments, tests, medications, and one very enlightening inpatient stay.  Managing my health has literally been a part-time job; except I don't get paid. 

This whole mess keeps evolving and blogging about it has helped me process it all.  Plus, I'm keeping a record of my experiences that I can look back at when I'm 80.  Thank you to anyone who reads these.  I'm sure it's been enthralling for you.  Like the first season of House of Cards.  Or C-SPAN.

Onward! Positivity!

This morning I had the most amazing breakfast:  Udi's gluten free bread, toasted, with REAL cream cheese and some cucumber slices.  Whoa, right?

If I read that sentence a year ago I'd have thought the person writing it was a bit off.  Gluten free bread?  You mean a dried out brick made to look like bread?  Surely you jest.  Now cream cheese is a gift from the gods and cucumber is a staple of my diet.  But even those I wouldn't deem amazing. This breakfast isn't showing up on the menu at Alinea.  Or even Denny's.

Side note:  If you've never heard of Alinea, a restaurant in Chicago, or the story of its chef, Grant Achatz, read this story in the New Yorker.  Or any story about him: a chef that develops tongue cancer and how it propelled him to be one of the best in the world. Truly amazing.

So deprivation is a funny thing, psychologically. 

When someone tells us we can't do something (or have something) we're inclined to want whatever is off limits even more.  Suppressing thoughts or behaviors causes the brain to focus on them quite intensely, resulting in cravings or lying in bed at 3 am endlessly going over that one, possibly snarky comment our boss made in a meeting to us or what a Donald Trump presidency might be like. 

The apocalypse.  It will look like the apocalypse.

Then when we give give up on suppressing our behavior and go back to old ways, we tend to intensify that behavior - something we psychologists call the rebound effect.  This is why the vast majority of diets for weight loss don't work and people often regain the weight plus 10-15 pounds.  The coveted food probably tastes even better than it did before.

Hence my amazing breakfast this morning. 

So the good news is I've put dairy, eggs, fish, and shellfish back into my diet.  Eggs are a big deal because gluten free breads use them, and dairy means cream in my coffee.  And butter, so eating out will be a bit less daunting.  I also realized an error in my allergy testing report where I can, in fact, have buckwheat.  You may be asking "what the hell has buckwheat in it other than buckwheat?"  I'd have asked the same thing before but it's often used as a wheat flour substitute in prepared foods like snack bars or cake mixes.  Pretty much anything made by Enjoy Life foods (which makes truly tasty stuff) contains buckwheat.

Having less on the off-limits list is huge. YUGE! It's truly great. The greatest, folks.  Seriously. Couldn't be happier.

Not eating soy, wheat, peanuts, tree nuts, barley, celery, sesame, and apricots doesn't even seem daunting to me at this point.  Maybe the dairy/egg/fish/shellfish period was a good thing in that now the diet based off my allergy testing seems like cake.  Amazing, gluten free, buckwheat-laden cake. 


Wednesday, September 28, 2016

Side Effects May Include...

4:50 AM Posted by Tiffany Taft , , , ,
I'm old enough to recall the glory days when it was illegal for pharmaceutical companies to directly advertise to consumers on television.  The first drug commercial I remember is the one for Prozac, with the little animated circle-person looking all sad and being followed by a rain cloud.  Then he/she takes a pill and befriends a happy blue bird.

Zoloft (not Prozac) Guy, circa 2003
My Google search informs me that this was, in fact, not an ad for Prozac but for Zoloft.  So much for that, Pfizer.

Now it seems like you can't watch TV without coming across a drug commercial.  In parallel with people driving in convertibles, sitting in bathtubs in flower fields, or Mike Ditka throwing a football through a tire is a voice-over person listing the potential side effects and risks which always seem to go on for days.

People living with chronic illnesses also live with chronic side effects.  And they live with chronic risk for developing another, sometimes more serious, problem from their medications.  My personal favorite is when doctors start treating the side effects with more medication, which also has side effects.  I realize that this is sometimes necessary, but when you step back and look at it, it all seems a little insane.

My most recent, and 3rd, upper endoscopy showed no real improvement over the 2nd one I had in July.  Some things healed, some new things showed up in both my esophagus and stomach, and the eosinophil count remained the same (> 15 per high power field, which is the cutoff for EoE).

The great news is I got to put dairy, eggs, and fish back into my diet because taking those out did absolutely nothing.  Huzzah!

The bad news is I'm likely going to have to go back onto a high dose proton pump inhibitor (PPI) to treat this stuff. I'm likely experiencing EoE and Crohn's disease in my stomach, which is a rare place to have Crohn's show up so there isn't a lot of knowledge about it.  

I'm all about being this special snowflake.

You may have seen in the news new research about the risks of chronic PPI use.  When medical findings are picked up by the media, they're usually over-hyped as either "WE FOUND A CURE!" or "ANYONE ON [MEDICATION A] IS GOING TO DIE!"  Slow your roll, media.  It's never that straightforward - which is good and not so good.

PPIs were once assumed to be these incredibly safe, low-risk medications that could eradicate gastroesophageal reflux disease in the vast majority of people who took them.  To say they were considered miracle drugs might not be far fetched.  PPIs were so successful that their use expanded to even those without a definitive GERD diagnosis and eventually they were approved to be over-the-counter.  So literally anyone who experiences heartburn a few times can hop on over to the store and buy an unlimited supply of PPIs.

Side note:  One of my first mentors in GI, Dr. Michael Jones, wrote a nice piece on heartburn and how our lifestyles impact its presence in the Los Angeles Times in 2013.

The PPI party went south when someone pooped in the pool (my 7th grade literature teacher would be so proud of that alliteration) - I mean people started having significant side effects.

Doodie! Image credit: "Caddyshack"
Major risks/side effects of PPIs include:  osteoporosis, pneumonia, C-Diff infection, iron deficiency, and vitamin B12 deficiency.  More recently, long term PPI use was associated with kidney failure and dementia.


The odds of any of these are small, so let's not all have a heart attack about these studies.  However, the consensus among gastroenterologists who know much of anything is that PPI use should be limited and only for people who actually need them.  The days of throwing a PPI at someone who mentions heartburn once are hopefully nearly over.

Turns out I'm one of those people who actually needs them.  The treatment for EoE like mine is 40 mg daily PPI.  The treatment for stomach Crohn's is also a PPI in addition to the anti-TNF medication I'm on, which may not be working so well.

Also turns out Crohn's disease causes bone loss, iron deficiency, and vitamin B12 deficiency and these are all things that I have been diagnosed with.  I've had osteopenia and low B12 since my diagnosis in 2002. My recent hospital stay identified the iron deficiency and I have my first 2 iron infusions starting in early October.  I hope side effects of those include Tony Stark-itis.

I already have a bit of his personality.  Image credit: "Ironman"
My next appointment with my gastroenterologist is in about a week and we'll go over the plan and discuss at length my taking a PPI, which she wants and I don't want.  The results of this endoscopy tell me I'd be foolish to not take the PPI but the side effects that include conditions I already have make me want to run away and hole up on an island like Tom Hanks.

Looking real appealing right now.  Image credit: "Cast Away"
Can I have any more movie references in this post?  Clearly I remember films better than I remember antidepressant commercials.


Saturday, September 10, 2016

8 Things I Learned While Inpatient

3:19 PM Posted by Tiffany Taft , ,
Hi.  This is long.

So I've had Crohn's disease since 2002. Unlike many of my peers, I've never had to go into the hospital. The only surgery I've had was done on an outpatient basis. My symptoms have never gotten to the this-is-super-bad level. Needless to say, I've been pretty fortunate.

Last week I had my first inpatient hospital experience, aside from having my kids. I didn't go in because of Crohn's disease, but because of a complication likely related to my medication. I'd been feeling really run down with a low grade fever for days but had no other symptoms other than some minor Crohn's activity that I barely considered a problem. My medication, Cimzia, has specific instructions not to take if you have an infection and I was due for my shots. I texted my gastroenterologist and she recommended I get blood work to see what was up.

So I went and did and saw what was up, which was that my total white blood cell count and neutrophil (the part of your immune system that fights infection) count were really low (White blood cells were 1.8, minimum of 4 and neutrophils were 670, minimum of 1900). My doctor called me and said "get yo ass to the hospital." Ok, maybe not in those exact words. In my almost 3 days at what I would say is a highly regarded, university based hospital, I learned a few things that I'd like to share with you.  

1. There are excellent physicians and really really shitty physicians.
The hospital I was in is a teaching hospital, which means in addition to the attending physicians you see a steady stream of residents, fellows, and medical students. All of whom ask you the same questions and regurgitate relatively the same answers. After about a day I noticed this pattern, or script, that all the doctors I saw seemed to be getting their words from.  Any attempts on my part to push them away from this script were met with condescending corrections. I felt like Phil Connors in Groundhog Day.

Drunk is more fun.
I was admitted by my gastroenterologist, who is a phenomenal doctor. I have a bit of a weird relationship with her as she's my doctor, we collaborate on research together, and we've gotten together as friends on a few occasions. Needless to say, I have her cell phone number. I'm pretty sure I'm not her only patient with this number, but as I said it's a weird mix that means I have access to my doctor in ways most people probably don't. We kept in touch via text or call the entire time I was in the hospital. This was a blessing and a curse.

I saw 3 attending physicians: the hospitalist, or doctor in charge of you as an inpatient; the gastroenterologist on call; the hematologist on call. Before I saw each of them, I saw their resident or fellow because hey people gotta learn, right?

The hospitalist was a good guy and did his best to have a conversation with me versus talk to me via the script, although he did correct me that 100F is technically not a fever. 100.4 is a fever. Get it right.

The hematologist seemed to think my condition was NBD. Like, you can go home right now NBD. I realized that she sees cancer patients and I looked relatively well with the exception of the fever and neutropenia, but her response was essentially the polar opposite of my gastroenterologist and the hospitalist. As you can imagine, this messed with my head.

The gastroenterologist on call was amazingly awful in too many ways to list here. By the 3rd day, I refused to see him because he was doing absolutely nothing to help me, rather he was just pissing me off.

2. Doctors put patients in categories to check boxes rather than consider individual variables.
As I mentioned, when you go inpatient the narrative seems to be pre-written based on labs and other test results. Any attempts on your part as the patient to push them away from the script is met with dismissal or cheap explanations that make you cock your head to the side like a dog hearing a high pitched noise.
Me, 75% of the time.
Example: The main reason I was hospitalized was that I had a low grade fever in addition to the low neutrophils. Nothing off the charts, just around 100. When I got into the hospital they started taking my temperature with an ear thermometer and even though I felt exactly the same, the temperature on the thermometer was normal or even low. That seemed so weird to me but I didn't say anything. The temperature readings were being used to guide my treatment planning so they were, you know, kind of important. Everyone was happy I didn't have a fever yet I was telling them I felt the same.

You start to feel a bit crazy.

Day 2 a nurse takes my temperature and it's 97.5. Correctly, she thought that was wrong so we took my temp orally. It was 99.5. We did an experiment with the ear thermometer, testing both ears, and each said 97.5. So we concluded that the thermometer was measuring my temperature roughly 2 degrees cooler than it was. Which meant that I actually had a fever (100.4 kids, remember!) a few times when my temperature read 99 on the shitty thermometer. I brought this up to the hospitalist and he blew it off since even with the adjustment my temperature wasn't THAT high.

Internally I screamed "Then why the fuck am I in here!" Externally I just stared at him with disbelief.

The script had been written.  One does not simply change the script. Even with what seems like important information.

3. In order to bill a visit, a doctor has to listen to your lungs.
Ok, this one I can't prove but at no time did I report or show signs of any type of upper respiratory infection. Yet 98% of the time a doctor came through he/she had me take 4 deep breaths and listened to my lungs.  I can only assume this has something to do with insurance.

4. If you have a chronic illness, unnecessary focus will be placed on that even if that's not why you're in there.
I didn't go in to the hospital because I was having a Crohn's problem. Yes, I was having some symptoms and my gastroenterologist ordered an MRI to make sure I didn't have an abscess or something that could cause a lot of problems with a weakened immune system. But I was admitted because my immune system was nearly non-existent and that's a bad thing if you catch a bug.

The gastroenterologist on call spent an unnecessary amount of time going over my history, all the way back to 2002. But he did it in such a way that I felt like he was actually questioning my diagnosis. He also asked questions about my most recent flare up and treatment last fall, which was managed by his colleague, in a way that implied she and/or I was wrong.  

Then he decided I needed to go on a low residue diet, because that's something important? I questioned his decision and mentioned I was on the elimination diet for EoE so I was already pretty restricted.  Then this happened:

Dr. Shitty: "You can stop that, it's not necessary right now."
Me:  "But I have an endoscopy on the 20th.  I have to follow it closely until then."
Dr. Shitty:  waving his hand with a smirk "It's not necessary.  You need to be on a low residue diet."
Me:  "If I do that I've wasted the last 3 months of my life.  Have you read my chart?"

Say what?
5. Sleep, essential for recovery, is non-existent.
Anyone who has stayed in the hospital knows some sadist decided that taking vitals at 2 am is a good plan. Or timing your IV medication to finish at 3 am so alarm bells go off that could wake up the dead. I did have a private room, so that helped. I can't even fathom sharing a room with another sick person. You'd never sleep.

6. Some people will flat out lie to you.
I'm pretty sure at least 4 doctors lied to me. Amazingly, my gastroenterologist's pager didn't seem to work at all while I was in the hospital. She asked me to ask the doctors I was seeing to call her so she could coordinate my care. Remember, texting going on. The residents would report back to me that she hadn't answered her page; she told me no page had been received. If I had to bank on it, she's not the one lying to me. If I hadn't been texting with her, I would have thought she didn't care enough to respond. Throwing your colleague under the bus is a shitty thing to do.  Telling a patient that their doctor isn't responding is an even more shitty thing to do.  Especially when it isn't true.

7. Even if it's 2 a.m. someone is getting an MRI or CT scan.
I had an MRI at like 9:30 at night. I was taken to some underbelly of the hospital where people are wheeled in and out all night to get scans. There are people who work 3rd shift having people drink barium and injecting contrast and instructing you when to breathe. I had no idea.  They might be vampires.

8. You have the right to say no. 
By the middle of the 2nd day I'd gone from courteous yet blinking with disbelief to assertive bitch.  I assumed the Condescending Wonka meme pose whenever a doctor other than my gastroenterologist was speaking with me.  I was done. 

On day 2, during my GI consult visit with Dr. Shitty and his equally shitty fellow, said fellow tried to correct me when I let her know I knew the results of my MRI from my gastroenterologist. I interrupted and told her to just stop talking, which surprisingly she did.  I can only imagine my face relayed my disdain for her and the attending.

On day 3 I told the gastroenterology fellow, the cool one, to tell the attending I had no reason to see him and he didn't show up.

I don't like having to behave this way but I learned that being courteous and submissive wasn't working.  I knew better than to get bitchy with my nurses, who were actually quite good.  But I found my voice with the parade of physicians.  And while they seemed taken aback by my change of tone, I felt better challenging them and their script than just sitting there and nodding like a bobble head.  I'm just glad I was well enough to do so. 

All I could think about was people who are really sick or those without the access to my doctor that I had.  I also have a medical background.  All of these moving parts, a mish-mash of good and not-so-good doctors, most of which generally don't listen to you.  I felt pretty helpless, I can only imagine how bad that can get.  One silver lining to all of this is that this experience helped me understand what it's like for my clients who go inpatient.  Before, I could only imagine what it was like.

So what the hell happened to land me in there?  Nobody seems to know, but the theory is I picked up some weird virus that nuked my immune system.  I probably caught the virus because of my immune compromised state from my Crohn's medication.  I have more labs drawn on Monday and hopefully I'll have reached the low end of normal.  As of Tuesday my white blood cells were 3 and neutrophils 1090, up from their lowest of 540 the day I was discharged.  You read that right - I got worse in the hospital and they sent me home because I didn't have a fever any more.  Honestly, I was glad to get out of there.  I felt better taking my chances at home than putting up with any more bullshit.

Wednesday I see that hematologist I saw while inpatient to get cleared to restart the Cimzia.  I doubt I'll ever know what virus it was, which is a bit disconcerting.  I'm going to go with zika since that's en vogue right now.