Sunday, March 30, 2014

Man Shall Not Live By Bread Alone...and Neither Shall I

After I saw the Heme/Onc (short for Hematology/Oncology) guy, I walked out the door not expecting to hear from him until my follow-up appointment in 6 months. It was lunchtime, and we were hungry, so my husband and I decided to grab a quick, yummy brunch of deliciousness at our local Waffle House. Their pecan waffles qualify for my select life list of very favorite foods. If I had known this would be my last time to ever have them, I probably would have ordered a dozen and eaten until I couldn't stand up any more.

Remember how I talked about Zebras and Interesting Patients the other day? Remember how I said you don't want to be one, but that I am one? Well...after I left my Heme/Onc appointment, my doctor spent some time researching what could be causing my immune system to shut down. He was unable to find a link between this and my MS, but he did find ONE STUDY being performed at BMS looking at a possible link between my particular immune problem and wheat allergies. Has this research been completed? No. Has this research been published in a reputable, peer-reviewed journal? No. IT'S STILL ONGOING, and there is no way to get me into the actual trial. So what does my hematologist decide? He wants me to try a wheat-free (aka gluten-free) diet. It will be our own, personal experiment. I literally felt Life As I Know It come crashing down around me.

I received this life-altering phone call around 4:30 on a Monday afternoon. I was not pleased. But God has a serious sense of humor. A very dear friend of mine has Celiac Disease, the only absolute medical indication for a gluten-free diet. Gluten-free can completely cure Celiac and eliminate its long term side effects. She has been gluten-free for several years and has been wanting me to experiment with the diet almost since the day she started it. Obviously, since bread is my very favorite food (I have literally lived on bread alone for months at a time while travelling overseas), I do not want to give it up. I like bread. Bread makes me happy. Anyhow, back to God's sense of humor...this friend was sitting next to me at my kitchen table when I got the call from my doctor. I instantly went into mourning. She became almost giddy with excitement.

After my initial shock and despair wore off, I went into my typical OCD, Type A mode. In the last 3 weeks and 4 days since I got this unpleasant news, I have read more books and cookbooks and websites and blogs on gluten-free cooking than I can count. I have dreamed about bread and pizza and fried chicken and yeast rolls and icing cake. I have fixated on finding acceptable substitutes for my favorite foods. So far, I have found a good pancake recipe, a decent oven-fried chicken recipe, and several awful bread recipes...complete with some flammable loaves. I'm a work in progress, and I know God has a plan for this. Right now, the risk of blindness and herniation and a nonexistent immune system are good motivators.

I'm a Zebra...Or...Lightening Struck More Than Twice

On top of everything else going on in the last week, my immune system is shutting down. I had my routine labs drawn at the end of January. One of the tests showed that my IgG4 is almost nonexistent. A repeat of the lab confirmed the results (In medicine, if we get a totally unexpected, weird lab result, we automatically repeat that lab. You never know when the wonky number is the result of a lab error. Better to be safe and recheck than to start chemo or other treatments when it was just a mistake in the lab. And just so you know, this is Good Medicine, not CYA Medicine.)

My PCP/neurologist at BMS set me up to see the local chief of Hematology/Oncology. He reviewed my history then gave me a look I've become way too familiar with over the years. He was confused. Perplexed. Intrigued. Now let me tell you...all the magazine articles and TV segments will tell you that you want a doctor that cares about you and that is interested in you. THAT IS NOT TRUE!!! They are wrong. Yes, having a caring, compassionate physician is a good thing. But you DO NOT want to be an Interesting Patient!!! Interesting Patients do not fit the mold. They are anomalies. They don't fit neatly into the puzzles we are mentally piecing together while we talk to you. They are the square pegs in the round holes. They get us excited to do research and look things up. They are not easy to diagnose and treat.

Interesting Patients are also called Zebras. There's a saying we are taught early in med school. It's actually one of my computer geek-husband's favorite factoids and quotes. No idea why. He just likes it. "When you hear hoofbeats, look for horses, not zebras" - the implication being that horses are common (like colds, ear infections, the flu), and zebras are not (like Ebola virus, West Nile, and rare, unnamed platelet aggregation disorders). When you find a Zebra, it is safe to assume that they will have only that one diagnosis. Zebras are rare. Multiple Zebras are extremely rare (ex. It would be extremely unusual and interesting to find a patient who had Ebola virus, West Nile, AND the rare platelet problem at the same time). Guess who is that Interesting Patient with Multiple Zebras? ME!!! It's so bad, my neurologist at BMS wore her zebra scarf this week at my appointment in my honor. It did make me laugh, because really? Only medical people would get the joke.

Anyhow, my immune system is shutting down. I have MS. And now I have pseudotumor cerebri. All unusual diagnoses that are not fun to live with or treat. Only the pseudotumor was easy to diagnose. The MS took 9 months from symptom onset to diagnosis, and I am considered a 'quick' diagnosis. We are still working on the immune system thing. I'll let you know more about that later. Until then, I have to get to the ballpark to see my Kid play center field. If you have any questions about this post or any others, I'll do my best to answer them from the Doctor or the Patient side, whichever is more appropriate.

Friday, March 28, 2014

CYA Medicine

As a follow up to my last post, I think I need to explain to y'all what CYA medicine is. Have you heard of it? Do you know what it means? At its core, CYA medicine means 'Cover Your A$$.' Don't do anything that will get yourself sued. Document everything. Make the patient look like the Bad Guy. Don't neglect good care. Be conscientious. Practice good medicine. Don't get caught missing anything.

Often this is as simple as ordering extra tests. Extra blood work. Extra labs. Extra xrays. Anything to make the patient happy. A good Patient Satisfaction Score has nothing to do with the quality of care they received. It has everything to do with their perception. And most patients believe that more tests equals better care. But we know better. We are just covering our butts. We want you happy so you don't sue us. And there lies the baseline problem with America's medical problem. We spend too much money just to keep the lawyers away. Just because you have a snotty nose and a cough, you do not necessarily need a blood test, a flu test, and a chest xray. The End.

Anyhow, how does this relate to my previous post, and why I am I addressing this now? Because that is what the local neurologists did. They were practicing CYA medicine. By not letting me back into the hallowed sanctum of a clinic room to be seen, they were not liable. If they had let me into a room, and if they had laid eyes on me, even accidentally, they would be responsible for whatever happened to me next (according to our wonderful litigious society). By having a nurse serving as a go-between, they officially never saw my face and therefore, have nothing to fear from a lawsuit. Instead, by insisting that I leave after having a chart made, they can write 4 magic letters on my chart: LWBS (Left Without Being Seen). This means, in the eyes of the court, that I came to the clinic, had a chart made, and for whatever reason I DECIDED ON MY OWN to leave.

Note the difference in reality. The reality: I was told to leave, and the doctors refused to see me in their clinic. The chart reality (or the CYA reality): I 'Left Without Being Seen.' A very subtle difference, but one that puts the fault on me if I had emergently gone blind or herniated. I guarantee you that the truth of that encounter was not documented anywhere but here. 'If you didn't write it down, it didn't happen.' Those are the exact words we are taught in med school and residency. Document everything...but only if you want it to show up in court. If it's not documented, it didn't happen. Scary, huh?

Thursday, March 27, 2014

I Much Prefer Being the Doctor Than the Patient

So where was I? Oh yes. I had an appointment with Neuro ophthalmology for Friday morning. Obviously I went to that appointment, and I took my husband with me to be my ears and memory (Remember that part about forgetting things? One of the ways I cope is to make sure other people are with me for important moments so they can be my memory).

My Neuro ophthalmologist is a blunt man. He doesn't pad things just to spare my feelings or to make me feel better. His nurses ran their special tests and used their magic cameras to image my optic disks.  After reviewing the images, my doctor confirmed the papilledema (optic nerve swelling) and said it was worse than we had thought from just looking. He agreed that since I had normal MRI's in January, that I do, indeed, have pseudotumor cerebri. He then proceeded to tell me this isn't an emergency, and that I just needed to see neurology for an LP (lumbar puncture, aka spinal tap, aka tap) within the next week or so.

Now here is where I started to disagree. I am a pediatrician. And not only am I a pediatrician, but I am an ER pediatrician. I did a pediatric residency and an emergency medicine fellowship. In both pediatrics and emergency medicine, papilledema and pseudotumor are considered emergencies. Ear infections? Colds? Rashes? Not emergencies. Risk of blindness or herniation? Definitely emergencies. Emergencies, by definition, do not mean 'wait a week or so.' Emergencies mean 'act NOW.'

So what did I do? I told my doctor that if he didn't know a neurologist who would tap me that day, then I would be leaving his office to go to the ER to get an LP that way. Did I want a spinal tap? No. Who wants a needle stuck into their spine? Did I need a spinal tap? Yes. LP's both diagnose and treat pseudotumor. The sooner they are done, the sooner CSF (cerebral spinal fluid) can be removed to relieve the intracranial pressure.

What did he do? He acknowledged my concerns and stubbornness and said he would make some phone calls. He returned a few minutes later with instructions to go directly to our local neurology clinic.

Now let me preface the rest of this story by telling you that neurology in my town stinks. I live in a city in America. I am in the developed world. Land of the Free and Home of the Brave. We have good medical care here. Except for neurology in my town. It's awful. When I was first diagnosed with MS, a neurologist here told me I had had a stroke. Now I know myself, and I had reviewed my own CTs and MRIs. I had NOT had a stroke. I had no risk factors, and I had zero signs or symptoms. What's the difference between a sign and a symptom you ask? A symptom is a subjective feeling that you tell your doctor that cannot be quantified (ex. runny nose, cough, sore throat). A sign is an objective finding that your doctor is able to see and observe (ex. a red throat with post-nasal drip, your heart rate, or your blood pressure). There was no way I had had a stroke. This is just my personal experience with our local neurology departments, but consistently, patients and doctors here agree: If you really need a GOOD neurologist, you need to go to the BMS (Best Medical School - aka the mega university hospital as referenced in the medical school classic novel House of God and immortalized forever on the TV show Scrubs) that is 4 hours away.

Continuing on...My husband drove me directly to the clinic. I had been told to 'come now' for a clinic visit and lab work, and then my LP would be done at 2:00. I arrived in the clinic and checked in. I filled out the paperwork. I turned in my driver's license and insurance information. I had a chart made. And I waited in the waiting room to be called back to see the neurologist. After about 15 minutes a nurse came out and asked if she could speak to me. Thinking she was wanting to do some triage and get some preliminary information, I agreed. She then (very nicely) proceeded to tell me that the neurologist and his partners all refused to see me as a patient. Someone, many years ago, had mistakenly written in my chart that I have von Willebrand's Disease - a platelet disease that keeps your body from properly forming clots. This would be a reason to not do an LP in a clinic setting. It would require being in the controlled setting of the hospital where blood products are available in case of uncontrollable bleeding - a relatively simple thing to do, just something that requires a little preplanning and preparation - which would be fine if I had the disease at all. I DO NOT HAVE VON WILLEBRAND'S DISEASE! I explained that this was an error in my history, and she said she would tell the doctors. Less than 5 minutes later she returned. She again told me that the doctors (yes, there were multiple neurologists involved by now refusing to see me) were not going to see me that day or any other day for an LP. To give her credit, I could tell she was not enjoying being the proverbial messenger and that she was doing her best to be nice. To quote the rest of the conversation:

Me: May I please speak directly with the neurologists and explain this error. I do not have von Willebrand's Disease.
Nurse: I'm sorry. I cannot take you back there. They are busy.
Me: Where are they? Are they here?
Nurse: They are busy seeing patients in clinic.
Me: Ummm. I am a patient, and I am standing in their clinic.
Nurse: I'm so sorry.
Me: Do they know that I'm a doctor and that I actually know what I'm talking about?
Nurse: Yes. They are fully aware that you are a Pediatric ER doctor. They still say they will not see you.
Me: So correct me if I'm wrong here. I'm a physician, standing in their clinic to be seen as a patient, and they refuse to even look me in the face to tell me they won't see me.
Nurse: That is correct.
Me: Then you can let them know that I will never refer another patient to this clinic and that I will let everyone I know what has happened today.
Nurse: I understand.

And there we have it. My fun fun Friday morning. I walked out of that clinic angrier and more scared and frustrated than I have been in years. I called my own personal neurologist at the BMS in tears and told her what was going on. She, appropriately, expressed her appalled feelings that this had happened and said she would take care of it. She called me back 15 minutes later to tell me to go to my local small, community hospital. Radiology there would do my spinal tap that afternoon. I did as instructed, and surprise surprise, I didn't have any bleeding problems and the LP was performed without complications, both confirming and treating my diagnosis of pseudotumor cerebri. Thank You, Jesus, for my neurologist and for that hospital.

Sunday, March 23, 2014

If It's Not One Thing It's Another

I have MS. That is an established fact. I get dizzy. I see double. I fall down. I stumble over words. I forget things. It all comes and goes, but such is my normal. I have Good Days, and I have Bad Days. This is my reality. I've sort of gotten used to it. I don't like it, but it's my life.  At least it was until Thursday.

I went in for my routine eye exam for new glasses. My optometrist, who happens to be a close friend and who happens to be the person who first diagnosed my MS, got 'that look' on her face. You know the look your doctor gets right before the Poker Face kicks in? I know it well. I've mastered it. I'm a pediatrician. I've hidden 'that look.' I saw it immediately. I knew there was something wrong. I was right. There was.

I have bilateral papilledema, otherwise known as swelling of the optic nerve. This is NOT a good thing. As a doctor, the first thing I think when I see papilledema in a patient is 'tumor.' Now before you panic, I don't have a brain tumor...or at least I didn't on my last scans 3 months ago. Anyhow, number 2 on the differential is pseudotumor cerebri or some other cause of elevated intracranial pressure. Risks include blindness and cerebral herniation (when the brain stem comes out through the hole at the base of the skull). In medical school they teach us mnemonics to help us remember diseases and factoids. The mnemonic for pseudotumor cerebri is 'Fat, Fertile, Forty, Female.' Guess what? I'm all four. I'm fat. I'll be 40 in three weeks. I'm not menopausal, and I'm female, putting pseudotumor very high on the list of possibilities.

At this point, my optometrist friend called our town's neighborhood-friendly Neuro ophthalmologist to arrange an appointment for Friday morning. In the meantime, I got to go home and try not to stress over the possibility of going blind. Believe me when I tell you I did everything I could to stay busy and distracted until bedtime, at which time my already-constant prayers kicked into high gear. I truly believe our God is a God of miracles, and right now, I would really appreciate my own personal miracle.