mcas

Fifty Shades of Mast Cell Activation Disease (MCAD/MCAS)

Notes from September 24, 2016:

Doctor: I’d like to collect a bone marrow sample ...

*Al runs out of the hospital in a hospital gown, screaming like a little girl*


(later, after they caught me)

Doctor: The next time you break out in a rash, hives, or blisters, I want you to have those biopsied.

Me: Is there going to be any part of our relationship that doesn’t involve a lot of pain on my part?

Doc: Yes, pee in this cup, and we’ll look at it under a fluorescent light to see if you have the same disease that King George III had.

Me: The crazy one?

Doc: Yes.

Me: Cool.

Making an “If I’m dead” video

A humbling thing about this MCAS disease is that I just took the time to make an, “If I’m dead, here’s everything you need to know about how to update this Drupal 8 website” video.

Hopefully I’ll still be around for Drupal 9 — or my own replacement for Drupal — but when I get sick I always wish I had done this, so now I have.

This week in mast cell disease (MCAS)

This week in mast cell disease (MCAS) included temporary kidney shutdown on Wednesday (swollen feet and ankles), insane migraine Thursday, fake heart attack Friday, and hives on Saturday. I used to think it was going to kill me, but now I think it’s just here to torture me.

Feeling like I was poisoned (or toxic shock syndrome, anaphylactic shock, or sepsis)

As a brief note today, when I got really sick in the years 2014-2017, I used to tell my doctors that I feel like I’ve been poisoned. As I learned more, I’d tell them that it felt like toxic shock syndrome, anaphylactic shock (anaphylaxis), or sepsis, because it felt like I was about to go unconscious (pass out, also known as syncope). Indeed, I did lose consciousness seven times.

They all looked at me like I was crazy when I told them these things, but it turns out I was right: I have a rare blood disease named Mast Cell Activation Syndrome, or MCAS. It’s a disease of your body’s mast cells, which are a type of white blood cell. If you have MCAS you essentially have been poisoned, because your body’s white blood cells are reacting to something in the environment — something you ate, drank, smelled, touched, breathed.

If you feel like you have symptoms like these I encourage you to learn more about MCAS, either by following the first link to Wikipedia, or by following this link to my blog posts about MCAS.

I’m still in here

Sometimes when I get really sick with the MCAS symptoms it becomes very hard for me to communicate. If I’m with someone else during those episodes and they look at me struggling I think, “I’m still Al, I’m still in here ... I just can’t get the words out.”

I think sometimes that’s the way it is for people when they get older and slow down, or have dementia, I imagine they have those thoughts as well.

MCAS/MCAD: What an activated mast cell looks like

At some point somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”

The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.

That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.

(Image from this nih.org research paper.)

Doctor: I’ve only seen that once before in my life

A funny thing about mast cell disease is when a 60+ year old doctor who is considered one of the best in his profession says to you, “I’ve only seen that once before in my life.” With MCAS, you get used to statements like that.

(This happened in 2016, but I was reminded of it again today.)

Happy Rare Disease Day

From 2015-17 I spent most of my time in hospitals and in bed, and went unconscious seven times. Today I can bench 210 (all the weight on the machine), work the elliptical thirty minutes, and practice yoga every night. Never give up.

Happy Rare Disease Day!

(If you’d like to donate to people working to cure my disease, please visit The Mastocytosis Society website.)

The long road back

I’m glad to say that I’ll be going back to regular consulting work again very soon. If you’re interested in the gory medical details that led me to quit consulting work (and write five computer programming books and a couple thousand blog posts), here you go:

Wake up, throw up, have the shakes (MCAS)

I had it in my mind that the worst of the mast cell disease (MCAS) side effects didn’t kick in until later in 2015, but I just saw this memory on Facebook from January 3, 2015:

“The day started off with a bad dream, after which I woke up, threw up, and had the shakes for long time. Fortunately it got much better as the day went on, and I eventually enjoyed a belated Christmas celebration with friends and family.”

I remember the vomiting and shakes started long before this – I learned to keep a trash can by the bedside – so those symptoms would have been well back into 2014.