My surgery with mast cell disease pro-tips

Surgery with mast cell disease is a bit of a logistical circus. I am fortunate to be able to have my surgeries at a major teaching hospital where my mast cell specialists are also located and mast cell disease is understood to some degree by most people. Even still, there are a lot of things that must be organized in order to ensure the safest procedure possible.

Surgery is an inherently triggering process. It’s stressful. Even if you know it’s coming and feel fine about it, it’s still stressful. It is mechanically triggering to the body due to manipulation of the skin and tissue damage and remodeling. Operating rooms (and hospitals generally) can be hard for mast cell patients, with chemicals everywhere, poor control over temperature and the use of things like blood pressure cuffs and masks. Please assume that surgery will trigger you and plan ahead. Do not expect to be able to undergo surgery without mast cell precautions.

The first thing to do is make sure all of your (relevant) doctors are on the same page. Schedule appointments with all of them. Do it face to face.

Schedule any testing with enough time to have conversations with all of these doctors. This is frustrating but necessary. You do not want to find out later that another option would have been better, or that there was a precaution that wasn’t taken.

Meet with the anesthesia team in person. If you are in the hospital/seen by hospital providers frequently, they will sometimes say that you don’t need a face to face pre-op because you have recent blood work/they already have your anesthesia protocol/whatever. Do not listen to them. When you meet with the anesthesia team, open with the fact that you have a rare, life threatening blood disorder that causes severe non-IgE mediated reactions. Say it like you mean it. Then ask them to go through their entire procedure with medications they will use. Tell them what medications cannot be used for you. Do not be shy. I bring a list of meds contraindicated in mast cell disease, as well as a list of meds that I personally react to. Give them this list.

If you have reason to believe that these doctors are not familiar with mast cell disease, bring them a review article.

After pre-op, I also prefer to meet with the surgeon again face to face to go over in excruciating detail what they will do and what materials will be used to do it. Give appropriate substitutions (betadine for chlorhexidine, or whatever). If you are unclear on this, please consult your mast cell specialist ahead of time. Ask them if the hospital stocks all of your meds and if they don’t, find out what alternative they use. Try these alternatives ahead of time whenever possible.

Discuss your dietary needs with your surgeon ahead of time.  Bring a list of foods and meals you can eat.  If they cannot make you food safely, you may have to have someone bring you food, but you do not want this to be a surprise.

If you need an interpreter, make sure this is very clear to everyone involved as early as possible.

Make sure your pain management plan is rock solid. If you need to trial pain meds in order to find a safe one before surgery, do it. Do NOT have surgery without a pain management plan. It delays healing and is very triggering for mast cell patients. Also, that just sucks.

Same for anti-nausea meds. You will get nauseous.

If your surgery requires prep of some kind, I strongly advise you to trial it before you need to use it. As an example, the typical bowel preps they use for colonoscopies and GI surgeries just do not work for me. You do not want to find that out two days before surgery.

If you are having bowel surgery, expect to react to the prep. It is physically stressful. Discussion adding medication during this period with your mast cell specialist. I take extra Benadryl and oral steroids during this period. If you are adrenally insufficient, please consult with your endocrinologist regarding the need for additional steroids.

Pick a date when your doctors do not have imminent out of town time coming up. (For me, I want my mast cell GI specialist, immunologist and surgeon to be available.) And make sure that whoever is covering their service during out of office hours understands mast cell disease! This is so important. Sometimes you have one doctor in a group who treats mast cell disease, you do not want to be talking to someone who specializes in food allergy when you are having trouble.

I often see that people have not followed the premedication protocol recommended for mast cell patients. Let me be very clear. You are going to react to surgery in some way. Premedication is not a suggestion. It is a requirement. This protocol is designed to suppress anaphylaxis and to allow your body to behave during the procedure and the 24 hours or so following. If you have a hard contraindication to one or part of the premedication protocol, ask your mast cell specialist what you should take instead. STEROIDS AND ANTIHISTAMINES SHOULD BE TAKEN AS PREMEDS FOR SURGERY 12 HOURS BEFORE THE PROCEDURE AND ONE HOUR BEFORE THE PROCEDURE. THIS IS NOT NEGOTIABLE.

The day of the surgery, bring your medications with you to the hospital in case they don’t have your brand/med/whatever. BRING YOUR EPIPENS.  If you use special dressings/have a central line/ostomy/G-tube/something, bring all your stuff for that.  They will probably not need it, but you never know.  Also bring a copy of your health care proxy/ advanced directive and your “greatest hits” (current meds, health conditions, allergies, etc). Try to get scheduled for the first surgery of the day, but remember that you will need to be there about two hours before they operate in order to get settled and get IV meds an hour before the procedure. Even if you schedule this ahead of time and no matter how many notes are written, someone is still going to give you a hard time about one or all of your premeds. Do not be dissuaded. These are compulsory.

If you have a bad feeling about what is happening, feel your necessary precautions are not being respected, or generally feel like you are being pushed into something you do not want to do, reschedule your surgery. I do not care if you are in your fancy hospital gown with your IV started. If you feel that you are not in the hands of providers who will take care of you, leave. Your safety is more important than convenience for these people. Your health is not a democracy.

If you are a mast cell patient, you are likely going to need some babysitting after surgery. I was not allowed to be alone for three weeks after my 2013 surgery. Schedule this ahead of time. Do not worry about entertaining people. Type up a list of your meds, what they do, how to take them, etc, for your babysitters.   Also type up a list of signs to watch for. MAKE SURE THAT ANYONE WHO IS TAKING CARE OF YOU KNOWS HOW TO USE AN EPIPEN.

Relax. Surgery is a bummer but with precautions, it is still very safe for mast cell patients.

 

3 Responses

  1. Mark Beckwith March 26, 2015 / 6:04 am

    Phew. Tell us how you really feel, Lisa. Nice post. I’m probably preaching to the converted, but since I started having to watch out for the healthcare of people who have rare conditions, I have learned a lot more about how much doctors may not know and how to handle it. One of my best pals, our lead pathologist on our team, recently mentioned The Patient Will See You Now was a great read. I can’t stress enough that the patient has every right and reason to take more control over steering their own ship when it comes to their own care.

  2. Judie March 26, 2015 / 7:08 am

    Thank you so much for this important post. I will save it and I hope others will also. It is imperative that we do everything within our power to protect ourselves.
    Last year I did most of what you stated for a knee replacement and did well. A follow short surgery a month later to redo the incision led me afterwards into a spiraling degranulation which almost took my life. It took 1 month for me to feel like I would survive the attack and 2 more months to get back to where I was prior to the attack. It woke me up (and I am an RN). To what this disease can do to us and I will NEVER take that chance again!!
    I slacked off with some of the prep on the second surgery bc it was the same doctor, hospital etc, it was a very bad decision on my part. I did so well with the first surgery (due to prep DUH!) I thought I didn’t have such a bad case of this disease, WRONG!
    This disease will sneak up on you when you least expect it and you don’t want it to be during surgery! Everyone please prepare if you have surgery,
    I am what is considered a leaker mostly with few ANA reactions, it doesn’t matter and it’s important to realize this. Your immune system is dysfunctional and it WILL be stressed during surgery. This is part of your immune systems job.. Since our immune system IS dysfunctional it will react dysfunction ally. Prepare for it!
    Judie

  3. Kim February 1, 2016 / 5:26 am

    I recent had surgery. One thing they did right was schedule it later in the day. For me, my blood pressure is usually so low in the morning, and more irratic. By scheduling the surgery in the afternoon, I was able to follow my usual am routine and take my meds, get my blood pressure up, and drink adequate liquids for me.

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