Thursday, August 31, 2017

Hospital Admissions With Mast Cell Disease - Part 1

Nothing says "good morning" like the 7AM shift change at the hospital. The new nurse prances in, with the previous nurse in tow, reciting the happenings of the last twelve hours. You inhale, feeling the cold sensation of the stethoscope on your back. The velcro of the blood pressure cuff tears and you swear you hear that sound in your sleep. Oh wait, that's because you do. Vitals are checked intermittently throughout the night.

Like the name of my blog suggests, the hospital was once my second home. Actually, it is more accurate to say that the hospital was my first home, as I spent eight months out of the year inpatient because of a Mast Cell Disease flare. Five of those months were consecutive. Between implementing treatments, drug shortages, and nutritional crises, I was not home more than a couple of weeks at a time that entire year. It was difficult to cope.

The hospital is scary when Mast Cell Disease is involved, particularly with the diagnosis of Mast Cell Activation Syndrome. The idea of an admission is to get well, but how does one heal when triggers and skeptics of the diagnosis are at every turn?

A fancy degree does not guarantee knowledge about Mast Cell Disease. The majority of medical professionals have only skimmed the Mastocytosis heading of a textbook years ago. They do not recognize the various types of Mast Cell Diseases and what the diagnosis entails, especially Mast Cell Activation Syndrome.

Knowledgeable or not, the doctors in an inpatient hospital setting differ from the team of doctors established outpatient. There is an appropriate and inappropriate manner of approaching the situation.

Educating Medical Professionals

It is not common to find medical professionals with a background in Mast Cell Disease. Honorable doctors and nurses will admit that patients and their families know more about a diagnosis than they do, but others are not as humble. The first step is to ensure they have correct facts.

 When informing them of the diagnosis, do not have a demeaning attitude. Present enough information for them to safely treat emergent issues as they arise and to clear up preconceived discrepancies regarding triggers (discussed in a section below).


Print Outs

Printouts are the most convenient for educating. They are brief, yet factual.

  • What Are Mast Cell Disorders [ x ]

This is my go to printout. It provides an overview of Mastocytosis and Mast Cell Activation Syndrome (MCAS). It lists common triggers, explains anaphylaxis with its varying stages, and considers Kounis Syndrome in treatment.

  • Mastocytosis Society Emergency Room Protocol [ x

TMS offers the above 15 page customizable printout. Fill out pertinent medical information in the blanks for emergencies, medication lists, and a signature from your primary provider.  

There is no explanation about the disease. However, it gives a list of medications that are naturally mast cell degranulators, as well as a pre-med plan, emergency protocol, and useful facts about lab tests to run.

  • Masto Kids Degranular List [ x ]

Triggers are vast and vary patient to patient. This gives an excellent overview of how triggers are not limited to food, chemicals, and drugs. It incorporates pain, temperature, exertion, and other triggers that are rarely considered.


  • Meet 'Bubble Girl' Allergic To Life [ x ]

Medical professionals are busy. That is a given. They do not, or will not, invest the time it takes to watch lengthy videos while also seeing patients. However, many nurses and doctors I have encountered have been willing to view the 'Bubble Girl' video.

The video is short at just over four minutes long and is hands down the best resource of Mast Cell Activation Syndrome. It adequately depicts the seriousness of the condition with an overview of the disease in simple terms. Plus, the video incorporates visuals of swelling, seizures, and a multitude of symptoms.

What is most helpful is that it explains how reactions are triggered by food, scents, smoke, and temperature, while conveying that reaction symptoms can exceed a headache or itching regardless of the trigger.

I literally showed this video to any new nurse or doctor on my case during my inpatient stays.


  • Dr. Afrin's Never Bet Against Occam [ x

Dr. Afrin is a hematologist oncologist that specializes in Mast Cell Diseases. His book is brimming with information. Similar to how doctors avoid lengthy educational videos about Mast Cell Disease, most are not keen on reading entire books about the subject either. It is beneficial to highlight areas of importance to show to the doctors. Dedicated medical professionals will find it fascinating.

Read Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity REVIEW

Communicate Your Case

Nurses change twice a day. Pharmacists are on a rotation. Hospitalists and practitioners barely last a week. And trying to keep track of the attending doctors, residents, and interns would drive even a sane man mad. There is little consistency. With many medical professionals involved, care is not always organized. That is frightening with a rarer diagnosis, as it increases the chance of misunderstandings.

Tips To Keeping Care Organized

  • Clearly state your diagnoses. 

If you are like me, Mast Cell Disease is not the sole diagnosis. Doctors tend to overlook the comorbidities. Primary and secondary diagnoses are pertinent information that impact the treatment of the Mast Cell Disease.

  • Contact the pharmacist!!!! 

Doctors write for endless prescriptions for medications designed to be helpful in the average population. Medication is pointless if not mixed and administered in a mast cell friendly fashion. Fillers and preservatives in medications, both IV and oral, cause reactions in sensitive patients with Mast Cell Disease. Sensitivities to that extreme are not the average, so request a meeting with the hospital pharmacist to explain the situation. They can explain to the pharmacy team how imperative it is that medications be made in a formulation that you tolerate.

In the past, I have saved old IV medication labels to show an example of how my medications are mixed.

  • Make sure medical professionals are accurately passing on your information. 

Hospital admissions are comparable to the game of telephone. Nurses pass along information to the next nurse at the start of each shift change.  

As an alternative to speaking with the patient, doctors pick up information based on verbal orders and written documentation. The "story" changes as it transfers person to person. Slight variations are expected. Patients have no control of charting, but be sure to correct any wrong information. Give the hospitalists contact information for your outpatient specialists. Access to the entirety of your records provides a better understanding than the hospitalist seeing you for ten minutes during rounds.


A Mast Cell Disease patient's needs are not the norm. It is not what medical professionals are used to. You cannot let them forget your needs. Continually remind them. Question them. DO NOT fear seeming annoying, as it is your life and you must advocate for yourself.

No two Mast Cell Disease cases are identical. Patients can share the same disease, yet have different presentations. Just because a doctor has treated a Mast Cell Disease patient with success previously, it does not render them an expert in the disease from that point forward. It is crucial for them to understand that what works for one patient may not work for another.

Address Your Allergies 

The purpose of allergy listings in the hospital system are to avoid triggers that are fatal for emergency situations. A Mast Cell Disease patient has an allergy list a mile long—so long that it requires two or three allergy bracelets.

  • Determine what triggers to list. 

A large portion of patients with mast cell disease, myself included, do not have true allergies. The disease is cellular in origin. Testing a specific trigger does not show as a positive IgE when tested via bloodwork. For example, eggs were my first ambulance ride. My allergy testing for “eggs” are negative. That is confusing to medical professionals, but it does not discount the severity of reactions from a trigger.

While addressing allergies for the hospital computer system, I list consistent triggers—meaning, when a medication causes symptoms EVERY administration, then it is listed as an allergy. I also list the drugs that have been administered once with a severe enough reaction that it is dangerous to attempt a second administration. The triggers that are based on timing or a specific severity of a flare are not listed in the hospital’s system under allergies (i.e. reacting to IV fluids when already triggered).

Note: A measly stomach ache is not worthy of an allergy listing in the hospital system. The nurse and I would be there for 20 years if I mentioned every trigger with an unfavorable reaction.

  • Anaphylaxis is the outcome. 

Mast Cell Disease reactions are not always “obviously allergic” in presentation. A reaction might present as a stroke-like episode or ventricular tachycardia—not the classic hives and throat swelling type of anaphylactic reaction expected.

Nurses question the outcome of the allergies listed. If the trigger is worthy of an allergy listing, then state that it causes anaphylaxis. Lesser explanations are deemed as a sensitivity and therefore not as carefully avoided in the system. Save further explanations for the doctor.

  • Keep a list. 

One typo in the computer or an oversight of an “allergy” can be lethal.  Keep multiple lists of your allergies. Have them on hand for doctors and nurses on your case to reference. That way, they are not having to rely on previous medical professionals or on your own memory. Because let's be real...crazy mast cells and high doses of Benadryl do not constitute clear cognitive skills.

Although there are literally HUNDREDS of triggers for my anaphylactic reactions, below is an example of my allergy list:

- NSAIDs/Asprin
- Proton Pump Inhibitors
- Vancomycin Analogues
- Nitrous Oxide
- Heparin Analogues
- Morphine
- Preservatives/DEHP in IV Bags
- Dye, Red Dye, Contrast Dye

There is an additional note reading:

If unstable enough to go to the hospital, chances are that chemicals like perfumes cause severe reactions. Scent triggers have an immense impact on the life of a patient with Mast Cell Disease. They are triggers that run rampant in a hospital setting. 

Hospital admissions with Mast Cell Disease is a learning process for the patients and the medical professionals involved. Fortunately, there are ways of navigating confrontations that bring healing and knowledge to all! 

Be on the lookout for part two of this post, Hospital Admissions With Mast Cell Disease - Part 2