The very first person I met with Mastocytosis back in 2007 was a lady by the name of Lisa. At the time, neither of us were able to eat food by mouth and we were feeding with alternative methods. We were very sick. Lisa was on a feeding tube with enteral food. She was considering if she would be able to continue doing her job as a respiratory therapist because of her disease. I was on TPN (total parenteral nutrition) through a PICC line and completely house bound. Later, I would switch to a feeding tube and then one day reintroduce food. Lisa would transition over to food and eventually we both were on traditional food 100% of the time. In the long run, we had our feeding tubes removed and together maneuvered the choppy water of expanding our list of foods. In the coming years, Lisa would be able to return to school and become an nurse. We have kept in close contact, visiting often to share what has worked, what has not, and to check in on each other during seasonal flare time. These were the first of our support group meetings. Along the way, many have joined us but Lisa and I continue our calls to one another.

Last month, while out of town on vacation with my family, I saw something on the TV that made me immediately pick up the phone and call Lisa. Hundreds of miles away, I could not escape the news of an F5 tornado demolishing the city of Moore, Oklahoma, Lisa’s hometown. Like many others, Lisa was at work when the devastation occurred. As an emergency room nurse, she was unable to go home to check on her house and pets. Although she knew there were no family members home at the time of touch down, the status of her home was unknown for more than six hours. Busy with the numerous injuries that continued to streamed into the ER and cell service that was unreliable, Lisa and her family were left to wonder about their future. Roads were closed by debris and travel was next to impossible. Late into the night, Lisa’s adult daughter was able to reach their neighborhood. Covered in insulation, debris, and mud her family’s home was still standing. In the coming days Lisa and her family took in others who were less fortunate. While the Moore community pulled together and helped those in need, having a way to feed all the volunteers became a top priority. Lisa served many people in food lines; homeless families, firemen, police, and other workers. She could not help but think how she would be unable to eat the very food she was serving. Although her days of feeding tubes were a distant memory, she knew good and well what would happen to her if she were to eat the pizza, hot dogs, and burgers that were a constant on the menu. Lisa thought the worst was behind them after learning their house had been spared and all loved ones were accounted for. In the weeks following, what many are saying is the worst damage in history, daily life continued to be problematic.  Travel has still not returned to normal. While the families of Moore try to rebuild their lives, extraordinary patience and determination is needed to just keep moving forward. Traveling a meager two miles can take over an hour. The loss of the post office, pharmacy, grocery stores, and other necessities of a normal functioning life, are luxuries that they will have to live without for now.

Days and weeks after our last call, I thought about all the things Lisa and I talked about. I began to think about the stress and other known triggers that mast cell patients would face in emergency situations. One thought came to my mind that inspired me to act. The more limiting your disease, the more effected you will be by out of the ordinary situations. I knew myself and all mast cell patients should have a plan and know what to do when the unexpected strikes. Mast cell diseases run a full range of gray scale. As different as pure white is to pure black, so too can our disease look different from person to person. Some may control their symptoms with simple diet substitutions while others may be bed bound, on TPN, or have a feeding tube. Mast cell diseases may influence you life little or be very debilitating depending on many factors. While there is no one quick answer to a very complicated disease, there are certain things that we know about how mast cells typically react.

Having personally experienced a regression in my symptoms and severity of Systemic Mastocytosis, I rely heavily on avoiding my triggers, eating only my safe foods, being seen by my specialist in mast cell diseases, taking all the medication he prescribes, and deliberately providing myself a mast cell friendly environment. If I did not have every one of those things I would be hurting very quickly. I would experience anything from anaphylaxis, needing to be back on my feeding tube, or a return of any symptoms I previously experienced. As we all know, life is unpredictable. What do we do, as mast cell patients, when something happens out of our control. Being prepared with a plan to keep yourself healthy is paramount to long term success. We need not live in fear of the unknown but rather educate ourselves to our biggest threats and make a plan before it is needed. Although we cannot plan for everything that may come our way we CAN prepare for those things that we may likely face.

• Being away from home longer than expected
• Seasonal changes
• Changes in work or school environment
• Auto accidents
• Emergency situations

You may think an emergency won’t happen to you but here in Oklahoma in the last year alone we have experienced: fires, floods, earthquakes, tornadoes, and in my case surgery.

Designed to be used in a situation where the patient may not be able to speak for themselves, the TMS’s Emergency Room Protocol can be used for so much more than a trip to the ER.  If the first few pages, there is an Emergency Response Plan, which tells physicians how to treat mast cell patients who are currently having a reaction.  About half way down, there is a pre-medication list for major and minor procedures. I recently used this resource when speaking with my anesthesiologist prior to a surgery. I also used the article What you Should know about Anesthesia – It Could Save Your Live  located in the same resource. He was familiar with Mast Cell diseases but had not previously pre-medicated patients.  He encouraged me to follow the pre-medication plan as well as continuing on my normal medication routine. Following those guidelines along with the special care my team took during my surgery allowed me to experience, for the first time, no ill effects following anesthesia.  In the same protocol, there is a list of drugs to avoid along with suggested substitutions. This is great when seeing a new doctor or specialist who is not very familiar with mast cell diseases.

 The Emergency Room Protocol also suggests mast cell patients wear some sort of medical alert jewelry. There are a host of supplies out there, a simple Google search will provide many options. I know many struggle with metal jewelry so here is a company that makes silicone wristbands that can be customized with our specific disease. Note*** TMS recommends that MCAD/MCAS patients list Systemic Mastocytosis or systemic mast cell disorder as your disease as it is more widely known.

http://www.elegantmedicalalert.com/Design_Your_Own_Silicone_Medical_Alert_Wristband_Bracelet.html

 The same company makes a USB bracelet in silicone.

http://www.elegantmedicalalert.com/Care_USB_Medical_History_Bracelet_Black.html

 In addition to The Mastocytosis Society’s resource, I found a publication by The Red Cross very helpful. Preparing for Disaster for People with Disabilities and other Special Needs is available for download on there website at http://www.redcross.org/prepare/location/home-family/disabilities Like it or not, if your mast cell disorder requires medication, special food, or specific water, you have special needs.

 After reading all the information, take stock of your personal situation and that of your family’s needs. Together, make plans for some of the situations that you are most likely to encounter then followed through with implementing those plans. You don’t have to do everything in one day. Know what needs to be done and set deadline for completion. While it sometimes may feel as if it is hard to stay healthy in normal situations, don’t be discouraged at the thought of out of the ordinary situations. Knowledge is power. Knowing how to protect yourself and your family is half the battle, implementing your plan is the other half.

ER_Protocol

To download the ER protocol document you will need adobe acrobat, which can be downloaded for free if needed.

PC or MAC