UPDATED Emergency and Surgery Protocol for MCAS and ME

I am reposting this post because I’ve updated my protocol to include some info from my doctor, David Kaufman. There will be another version once I finish my EDS addendum (although there is some EDS info in this protocol, like cervical spine precautions during intubation and bleeding risks, I wanted to separate the bulk of EDS info because it is not something that weighs heavily in my particular case).

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I started writing an emergency protocol back in 2015 when my mast cell reactions were scaring me with their unpredictability. I wanted something comprehensive, in writing, for anesthesia teams in the case of a planned surgery, but also something that my husband could hand to paramedics or emergency room doctors, if I couldn’t speak for myself. It was a massive undertaking because I tracked down every link and reference I could find about medication and surgery precautions for patients with mast cell diseases and ME. I wanted to gather all the information that was pertinent to me — my particular case — and edit it down to something manageable. I put together something passable and then moved it to the back burner for the last 4 years.

Last week I saw a new GI doctor who was emphatic that I get a colonoscopy and endoscopy at the same time and with anesthesia. I have been completely enema-dependent for years and, honestly, it’s exhausting. My previous GI doctor told me it was due to anatomical abnormalities (an MRI found pelvic floor dysfunction with cystocele, rectocele, sigmoidocele) and that I’d likely need enemas for the rest of my life, but it feels like the issues are getting worse and the new doctor didn’t want to throw medications at the problem without knowing exactly what she’s dealing with.

I cannot imagine voluntarily going under anesthesia. All of my worst reactions in the past 7 years have been to medications and my fear of trying new ones — especially intravenous medications — is so pronounced that I vowed only to agree to anesthesia if I was in a life-threatening situation (or couldn’t speak for myself). How could I be lying on a gurney with a peripheral IV, knowing they are about to inject multiple anesthetic drugs and not jump up and run out of the room? I wouldn’t be able to advocate for myself… I could die for a colonoscopy! So, I left the appointment with a sense of doom that only deepened when I started to feel a new ache in my lower abdomen. It got progressively worse over 3 days, the ache turned to pain and, what I thought of as run-of-the-mill bowel inflammation started to seem like something else. Gallstones? Bladder infection? I got out my emergency protocol notes and spent about 20 hours over the next few days rewriting everything, feeling like I might be working against the clock if this was something like appendicitis. Then I woke up last Sunday to such severe lower abdominal pain that I couldn’t move, could barely breathe or speak. I was shaking all over, in a cold sweat, nauseous and felt like I was on the brink of passing out. My husband wanted to call an ambulance, but I said no, hoping it was some sort of spasm that would pass. And it did… but not entirely. The ache and twinging remained for a few more days. It’s gone now and I think it was my dastardly bowels, after all, but it was bad and it scared me. It’s like the gods heard me say, “no way am I getting a colonoscopy” and decided to stab and twist their Elizabeth voodoo doll to make sure I got the point that there’s a problem I can’t continue to ignore.

The upshot of all this is, I finished the emergency protocol and I wanted to share it here, in case it could be useful to anyone else. There are a few important points about it, though:

  1. When I started, it was for personal use and I didn’t keep track of references. I will go back and gather all the links and add them to this article, but I have no idea how long it will take me and I wanted to share this sooner, rather than later. If you see your own information here without credit, please understand I will add a link to your article/blog/website! If you want me to do it asap, feel free to leave a comment.
  2. This protocol concentrates heavily on mast cell precautions because MCAS has caused my life-threatening reactions such as anaphylaxis and profound hypotension. It does not mention ME or CFS, although I researched and included ME resources, such as Dr. Lapp’s recommendations (Appendix E of the Primer for Clinical Practicioners).
  3. I have an EDS diagnosis (Ehlers-Danlos Syndrome — a connective tissue disorder), which can cause serious surgical complications. There are a lot of guidelines out there for EDS patients and, as yet, I have not researched any of them. It wasn’t until recently that I started to take this diagnosis more seriously and I still haven’t had the gumption to jump down the research rabbit hole, but, once I do, I will be updating my surgery protocol with any additional EDS precautions that are pertinent to my situation.
  4. It bears repeating: This is not medical advice of any kind. This is my personal protocol, for my personal situation. You may be more or less reactive than I am, you may have normal or high blood pressure or you may be far more disabled and need many more accommodations… But, I hope it can be of use as a jumping-off point. Please consult with your doctor.
  5. The link below is a printable pdf file, which is formatted properly, but if you need it in a different format so that you can copy and paste certain parts into your own protocol, don’t hesitate to leave a comment or email me at akaemilo@gmail.com, and I will send you a Word doc or Google doc version.

 

Updated Elizabeth Milo Emergency and Surgery Protocol

 

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Dog Days Are Over

Yesterday, I was finally going to write an exciting update about my strength returning, my one good night’s sleep, and the lovely sunny day, but then this happened: I decided to throw the ball for the dogs for the first time since March. They have been starved for Mama play time, so I reasoned a few throws were my first choice over stretches or walking laps around the garden.

One would think that in my sickly state these throws would be pathetically weak, but I’m using a Chuck-it and an extra large squeaker ball and I’m giving it my all because I know I only have a few throws in me. But this Chuck-it is huge and we don’t have enough space and it is always tricky to get a decent lob. Well, my first attempt, flung with all my effort, drilled directly down in front of me instead of in a nice arch away from me… and bore straight into my big beautiful brown-eyed baby’s eye.

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This dog doesn’t cry or yelp ever. He injured his back and never made a peep, he just shivered and drooled and couldn’t walk. But the tennis ball today made him cry out and then bolt and kind of run around confused, tail tucked, not knowing where to go. When I got close to him, all I saw was red inside his eye orbit. It looked like his eyeball had been driven back into his head or flipped backwards or something. I had the house locked up, his leash on, my shoes on, my car keys in my hand and my husband on the phone in seconds. I said, “I’m going to the vet. My phone is dead. I need you to call and make sure someone can see him now.” My husband said, “Do you have the strength to do that?” I stopped and sat down on the front steps. I hadn’t even thought about whether I could manage. It wasn’t until I then-when I became still- that I felt the adrenalin like a tidal wave through my body. My legs were jelly, my hands were shaking. I glanced at my heart rate monitor: 125. “I’ll find the strength,” I said. But as I looked at my dog, I realised the red I saw in his eye socket was the inner lid – it’d been completely covering the eyeball and the effect was gruesome. Now that it had retracted halfway and I could see his pretty brown iris, I calmed. The vet could wait until my husband got home.

As I write this, the world is spinning. I haven’t had acute emergency-type stress in my life (luckily) in so long and the feeling is alien. I was mowed over by a speeding epinephrine train and I realised four things:

1. I would be able to handle an emergency. I would be able to mine down deep into my cells for the resources necessary to fight off danger or rescue my loved ones or whatever might crop up… The question is what would (will) the physical ramifications be in the days that follow.

2. I lived with a chronic case of that stress response for YEARS in my job. The feeling was all too familiar. I used to never turn off. There was always a crisis, always a problem, always a fire to be put out (figuratively, not actually, thankfully). And, when there wasn’t an immediate concern, I was looking for one that hadn’t been discovered yet, so I wouldn’t be blindsided. It was a constant stomach queaze, the dull adrenal hum of my sympathetic nervous system stuck in hyper-vigilance, anticipating the next restaurant catastrophe.

3. I, myself, created a lot of that intense stress by being a controlling perfectionist who holds herself to unreachable standards and unsustainable responsibilities. And I still do. It takes work to not blame yourself for getting sick and it takes practice to let yourself off the hook for not getting better. It takes restraint to not take care of the house and it takes discipline to not forge ahead with the life you always wanted. And I try every day to forgive myself for not being the employee, friend, sister, daughter, wife I want to be.

4. I miss it. I miss crisis management and learning how to fix a problem and finding out how to do it better in the future. I miss being an honest adviser, without judgment. I miss jumping into action, making mistakes, figuring it out. I miss being the one that doesn’t need help ~ being the rock and the confidant and the reality check for those I love. I’m kind of sick of calm, quiet, peaceful boredom. I thrive on excitement and stress ~ as long as it is a positive atmosphere and a supportive team with a for-the-greater-good outcome. I knew I should have been an emergency room doctor.

Gratitude for the day: no orbital fracture or scratched cornea or dislodged eyeball. Just some pain and spooked tail-tucking. My pup is okay. But the sunny days are over for a while.

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