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| ICU life with HypoKPP |
Now, let me say, I love The Pitt. I love the format in which each episode is one hour of a fifteen hour shift. I loved E.R. back in the day as well. Both shows are insanely medically accurate, which is a pleasure to watch. And, funnily enough, both shows have had a patient with hypokalemic periodic paralysis. I'm always thrilled when Digger's disease is named, because it brings attention to his (mostly) invisible disease. When I first saw the episode, I texted Digger that he was going to love it when had a chance to watch it. (For a refresher on Digger's disease, click here and here.)
He did not love it, and with good reason. He said, "look, my disease is already a zebra, they didn't need to paint more stripes."
As his mom, I was just happy to have his disease mentioned, as it's rare (1 in 100,000). I've spent my time educating medical professionals about the disease, and I love to see it mentioned in an arena in which I know other medical professionals are watching.
When I asked him to explain why he hated it so much, he had some well-developed thoughts.
- In the episode, as they're going over the results, they said the patient had a potassium level of 1.2. Digger's lowest ever was 1.6 and they were planning intubation. The lab techs actually visited him in his ICU room, because they couldn't believe that he was awake and talking with a K+ level that low. His body is well accustomed to low potassium level; someone who has never had an attack would be dead with a K+ level of 1.2. Digger did a little bit of digging, and there is a woman with the disease who has survived a K+ level of 0.9.
- The two times his disease has been mentioned (ER and The Pitt), it's always a "drop attack", where the attack came out of nowhere. Those are so exceedingly rare that they're practically non-existent. In our experience (and that of Digger's entire paternal family), attacks are brought on by stress, sleep, hormone disturbances, food choices, etc. Hormones play a huge part in frequency of attacks, so most attacks begin in adolescence, then subside throughout the mid-twenties and thirties, only to come back again with a vengeance in the mid-forties.
- It's been a few years since I checked for any new/updated information on the disease and I was interested to see that there is a thyrotoxic form that effects primarily Asian males. I believe that's what the writers were aiming for, but they blew it. Let me explain: in the episode, as they were talking about the patient, they mentioned it was hereditary. Digger's biggest beef with this, is that unless the patient was adopted, someone in his family had to have had the disease and they would have been aware of it. The doctors go on to mention the thyrotoxic component of the disease. What it feels like to me is that the writers skimmed the overview of the disease, saw 'hereditary' and 'thyrotoxic' and mushed them together. Thyrotoxic hypoKPP and hereditary hypoKPP are two different things. Is the outcome of paralysis the same? Yes, but the etiology is quite different.
After speaking with Digger, I completely understand his frustration. He was very clear, and correct, when he said they treated his disease, which has greatly impacted his life, as a prop, and failed to bring factual representation of it.
I get it, and he's right. Just because the disease was mentioned, does not mean it was represented appropriately, and did not bring awareness to it.
I watched last week's episode, hoping to see a resolution for the patient, but that hour of the shift did not deal with it.
