The Zebra Among the Horses

Life is full of frustrations. Today I discovered that manually having to save post drafts is one of them. I write what I’m thinking, the minute I’m thinking of it, and saving is the very last thing that’s on my mind. Until my computer crashes or I accidentally hit a very sensitive button on the side of my mouse that sends my browser page backwards. I have lost this post twice today, and it’s driving me bonkers.

Happy Bunny FTW

After I hit the “Save” button on the bottom of the text field, a button I used to never have to press unless I wanted to and a process which now takes far longer than the original, I began to think about how to once again compose my post. And I thought a lot about frustration. Not so much the frustration I’m having with the computer right now, but the frustration associated with how long it took for me to finally get a diagnosis as to why I had spent my entire life getting sick.

The whole reasoning behind this entry came as the result of a piece I read on KevinMD.com by Shirie Leng, MD about the difficulties doctors face in diagnosing and treating patients, and the subsequent malpractice suits that arise when that horse turns out to be a zebra. She talks about a young man who had gone into the ER complaining of cough, fever and chest pain, was told he likely had the flu or a cold, prescribed antibiotics and sent on his way. Unfortunately, it turned out that the patient had a difficult to diagnose and impossible to treat virus, and passed away not long after. The family then sued for malpractice – and won.

Only in America can you sue a doctor for malpractice because he didn’t think to do a battery of tests on someone who was clinically presenting a common illness that millions of people get every day. Doctors are taught to look for horses not zebras, and for the most part it makes sense. Statistically speaking, it’s so rare to get a zebra illness that it just makes no sense to go that extra mile. Dr. Leng brings up an excellent point that hospitals are required to cut costs, and this poor doctor is now facing higher malpractice suit premiums because he didn’t do a whole slew of tests that probably never even occurred to him to do. Since he didn’t perform all kinds of expensive testing for a virtually impossible to diagnose illness that patient likely wouldn’t have had anyway, he did the right thing by sparing the patient the discomfort of going through a heart biopsy that statistically speaking would have resulted in nothing. Given the evidence, I wouldn’t have even thought about the rare virus the patient ended up dying from, and I’m not surprised at all that the doctor treated the patient the way that he did.

This made me think about my own situation a little. I’ve spent the past month or so frustrated that I have been sick my entire life and no one bothered to look for an underlying cause. I’ve been frustrated at having been on round after round after round of antibiotics, and getting told to “get the diabetes under control” and I would stop getting sick so often. I’ve been frustrated that the first person to say “you are way too old to be getting ear infections, let’s have a look at your immune system” didn’t come around until I was pushing 30. But to be honest, after reading that article and seeing it from the doctor’s side of the stethoscope, I have a little more understanding now of why things happened the way that it did. The fact of the matter is, it is very common for type 1 diabetics to have issues with illness and yeast growth. It is also very common for children to have ear infections, and very common for people living in New Jersey to have sinus infections (cause you know, smog). I’m a little upset that my PCP in Jersey brushed off my complaints of the allergy medication, decongestant and nasal spray use didn’t keep the infections away, but given that he had to have been in his 90s at the time, he probably just literally didn’t hear me. I have been quite upset and frustrated that for all this time, the “this shouldn’t be happening” comments were followed by criticisms of my self-management of diabetes or my lack of healthcare (because prior to 2014 it was sooooooo easy for someone with a pre-existing condition to get health insurance, after all). I’ve been frustrated that the “this shouldn’t be happening” comments weren’t followed by a “now, let’s find out why” and a series of tests until the beginning of last month.

Of course, I very likely have the reaction that I do because I’m still alive and I still have a chance. I have no intentions of suing anyone for malpractice despite the possibility of having irreparable damage in my lungs (still waiting for results on that). Had I died, perhaps things would be different. Maybe I would want to sue from beyond the grave.

Zombies

BTW I freaking love that movie

Maybe I would go to the grave angry. But I don’t want to be angry or frustrated. Yes, I have been living with a primary immune deficiency my entire life that no one caught. Yes, I am very well aware that I shouldn’t even be alive. Yes, I know that for my entire life, I have had Ig levels either at or only a hair above 0, I know that I have no mature B cells and it’s “inconclusive” that my body makes Bruton’s tyrosine kinase. I am very well aware at how incredibly rare it is for a female to present like this. Yes, Mayo Clinic, I am also very well aware that I am in fact a female, but thanks for asking just to be sure (yes, that actually did happen).

In the end, I am eternally grateful that I was able to make it this far. I am grateful that I had what I thought was an allergic reaction, which got me into the immunologist’s office. It may have taken almost 30 years for the blood work to happen so that we could find this out, but I don’t blame any of my doctors in the past for missing the underlying cause. I don’t blame any of them for looking at me as a horse instead of a zebra. Instead, I am going to hold my head up high and strut around the savanna in my trendy zebra stripes.

I don’t hold the medical community accountable for looking at me like a horse. All I do is ask that maybe you keep in the back of your mind that the zebras do exist.

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