Wednesday, October 4, 2017

Unexpected Prognosis

I am no stranger to death. My biological father passed away prior to my birth. The man I thought was my dad until I was old enough to understand the situation died just before I turned 5-years old. And after losing grandparents, uncles and other loved ones, the hurt is oh so familiar.

The hallow emptiness of loss does not get easier. The feeling always resonates with the emotions of the little girl on her aunt's swing set finding out that daddy was gone, and as she frantically pumped her legs, she could never swing high enough to bring him back. The only difference is that now, with maturity, I have learned how to appropriately grieve.

On Thursday I was at the hospital visiting another patient with Mast Cell Activation Syndrome. She is only ten years old, but has bravely endured the each obstacle presented by her illness. During the visit I received a text informing me that my dear friend, Taylor, had went to Heaven that morning.

My first instinct was to have a crying, blubbering meltdown. As said in my Instagram post:
Most would not have exemplified the faith, strength, and courage that Taylor did throughout her many battles. Taylor and I were in the “same place at the same time” when it came to life. We are exactly the same age and both had to defer our spot at our dream colleges after becoming severely afflicted with MCAS. Sharing in that struggle was the beginning of our friendship.  She never failed to use her circumstances for good. 
Reminiscing transports me back to September 2015. In that month, I was hardly able to sit up due to severe reactions. I had not yet begun the CDI treatment. Taylor texted me almost 24/7 then, ensuring I was not lonely living between doses of medication. Later, I started presenting with scary new symptoms. An EpiPen was in my near future, but I was petrified to use it for the first time! One evening the knot in my throat grew increasingly bothersome. I was on the couch texting T. All night and into the next morning she eased my nerves by walking me through the step-by-step process of using the Epi. She reassured me that it helps so much and recounted her experiences so that I would be less scared.   
Even in the times we were too ill to talk, Taylor was always there. Our connections are strong enough not to require words. I will miss our group skype chats and our laughs and inside jokes.  
While my sad eyes exuded tears, I quickly had to regain composure. I was not alone. I was in the presence of a very young MCAS patient that I did not wish to scare. How was I supposed to explain what had occurred? We are told that our form of the disease is not deadly. Yet, the condition we all share had taken a life. In fact, it has taken many lives this month.

I was tempted to offer reassurance, but I stopped myself. I thought of the numerous rapid response calls, the surgeries gone wrong, sepsis, almost starving. It would be empty justification because it could easily be any of us.

Losing a friend is inevitably difficult. Losing a friend with a shared diagnosis is a completely different experience. It makes it increasingly more real. Why them? Why not me?

The God-given prognosis is not always that of medical doctors. Taylor's legacy is not over. We vow to keep it going. As I prepare for my feeding tube replacement procedure this morning, I know there is a new angel shielding me in this fight.







The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. - Job 1:21

Tuesday, September 26, 2017

STARVING TO DEATH: Abbott Nutrition Petition

Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death
As most are already aware, I am feeding tube dependent. The only formula I have tolerated decently is Elecare Jr. Unflavored. Upon receiving a recent shipment of Elecare Jr. Unflavored, I noticed that the outside packaging was different. I scanned the labeling and noticed four discrepancies in the ingredients.


To receive clarification, I called the company that manufactures Elecare Jr. known as Abbott Nutrition. Abbott stated that they had been directed to change the wording on the labels to simplify the ingredient names for the general population. They assured me that they were no changes in ingredients—strictly the outside packaging.


Later, I trialled one of the newer cans with the updated label and experienced reaction symptoms. I had increased pain, swelling, etc. It worsened with each new can. I accepted it as a fluke, but resorted to using one of the cans with the older label instead. I eventually returned to my baseline. I continued to use the remaining old cans I had left until I had to use the new shipment again. Again, I started reacting.

It is not just me either. Multiple others have even ended up in the hospital from reactions to the new label Elecare Jr. cans. We have all called to report the incidents, but Abbott continues to tell each of us that there are no previous complaints and they refuses to admit to any changes.

This is a terrifying situation, as many patients are at risk of losing nutrition once the stashes of old label cans are depleted. So, I have started an online petition against Abbott with the goal of convincing them to bring back the old formulation of Elecare, or at the very least to admit their wrongdoing. Visit the petition link for further details.
Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death
It is a great feat to incite change in a major corporation. I get that employees of Abbott have a very stressful and deeply involved occupation. Their days are filled with lengthy business meetings, manufacturing processes, factory maintenance, media inquiries, etc. But afterwards, employees return home to their healthy families. They sit down for a nice dinner afterwards, while Elecare Jr. and anything medical related is pushed out of their minds until work the next morning.

I do not have that luxury of forgetting. Although people like me cannot eat, Elecare Jr. is our way to remain home and enjoy life with our families. Before bed each night, we connect ourselves to a feeding pump and run our formula. And that is not a bad thing. It is what we are willing to do to live. We have a choice.


However, because of the changes made to the Elecare Jr. formulation, we are forced to endure increased pain, we are ripped from our homes due to hospital admissions, and more importantly, Abbott has revoked our right to a choice to live. Using the new Elecare equates to death. Yet, having no formula also has the same futile outcome.

Please help. The victims of this situation could easily be your mom, your dad, your sister, brother, child, or friend. It could easily be you.



Abbott Nutrition: Bring Back Old Elecare Jr.  - Don't Let My Friends and I Starve To Death.

Thursday, September 21, 2017

Milestones

One month, two month, three month, four. It is another year older, walking and eating, and attending school. There is the first goal scored on the children's soccer league, an invincible teenager's awkward first kiss, and then a graduation. Afterwards, an application is placed for a new job that likely began as an internship. Then, perhaps there is a tally to mark the number of days that have passed since some horrible experience—serving as an optimistic "I made it through." These events share a commonality. They are all life milestones and are undoubtedly celebrated.


Milestones are defined differently in the life of someone with a chronic illness. They are not necessarily joyous occasions. To me, they are a reminder that I am so far from where I wish to be. Time is inherently passing and life is inevitably changing. However, it is not always for the positive. I am definitely reaching milestones, but not the right ones.

Two years ago, I should have been moved into my college dorm and attending freshman classes at the private liberal arts college I received a scholarship to. Instead, I was at the hospital using my first EpiPen. I had already not been home more than twenty sleeps that summer due to a series of hospital admissions.

Flushed and swollen, a gurney transported me to a room. I was Florida Hospital's most recent patient of the oncology ward. For that stent, I had made it a whopping eighteen days at home before beginning what would turn into a consecutive five month hospital stay.

A shy, oriental nurse introduced herself. She tried to provide a semblance of comfort for a disease few people understand. That is, until I was whisked into a rebound reaction from a strong laundry detergent.

Unfortunately, the reactions were not of the treat and go on variety. Emergency medications brought stability for about an hour. Despite regular bolus dosing of IV Benadryl, I had lost all foods and was unable to tolerate J tube feedings. TPN was failing too, worse than feeds, and my symptoms progressed throughout the entirety of the infusions. I went over a week subsisting solely on IV fluids (that I also reacted to). The hope was that the break from TPN and gut rest would give my body a reprieve from the reactions.

That plan was unsuccessful, as previous bouts of nutritional crises left little reserve. Starvation was imminent. The acute consequences of reactions were potentially deadly faster, making neither option very palatable. The doctors had to implement a treatment that would allow my body to accept nutrition without immediate anaphylaxis. Two years ago, as a result, I was placed on the Continuous Diphenhydramine Infusion (CDI)—a continuous infusion of IV Benadryl.

Read Diphenhydra-what? - The Continuous Benadryl Infusion.

It was a treatment my medical team did not intend to exceed past three months. After three months, my health would be much improved. I would be better. My body was supposed to have snapped out of it, or I was meant to find a successful concoction of medications to control the disease.

The CDI served (and continues to serve) its purpose: Consuming food remained futile, but J tube feedings stopped causing instant anaphylaxis. I only resort to TPN for brief flares, like when feed reactions become too severe. Even then, the TPN reactions are less in the sense that they slowly build to an ICU situation. It has not solved my weight problem though. My weight decreases regardless of intake if slightly reactive to nutritional. That tends to get me into trouble when running feeds, supplementing with TPN or lipids, and massive steroid doses do not change the number on the scale.

Things are relatively stable on the CDI. Well, as stable as the precarious mast cells of the severely afflicted can be.

Three months turned into two years and counting—two years of Benadryl infusing into my veins every second of every day, two years of treatment trials, buying time, and waiting for life to go back to how it was when I was healthier. Sick nonetheless, yet healthier.

And it has now been two years since my life changed forever—two years of being alive when, considering the circumstances, I should not be. I think that is a milestone. Still, it is difficult to celebrate this particular CDI milestone. So, I won't. I choose to celebrate life. Period.


Saturday, September 16, 2017

God's Cliché

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11, NIV 
In the past, Jeremiah 29:11 conveyed almost a cliché  The verse was just an overused Christian platitude, belonging to the many scriptures indicating trust in God's plan. Now, I have a different perception.


I always expected the plans I had for my life to align with God's. I was certain that I would follow the patterns of a typical Christian. The vision entailed pursuing a higher education where I would later establish a teaching career. I wanted church and mission trips, to be married young, a yellow house with a white picket fence, and four biological children—2 boys and 2 girls...if we are being specific.

Time, however, made it abundantly clear that God has a different outline. I got sick and it changed things. I was left perplexed—confused and scratching my head, questioning God, and kind of angry.

With a stubborn personality, it is almost instinct to initially discount opinions, views, and overall plans that are not unparallel to one's own. They are different and different must mean incorrect or inferior. On occasion though, it can come as a surprise that those once rejected ideas are eventually accepted after deeper contemplation.

But is God ever wrong? His plans are the opposite of the plans I had concocted prior to becoming chronically ill. I am too sick to attend church. Mission trips are out of the question. My college courses are strictly online. Teaching is likely not a practical career with my illness. An "in sickness and in health" marriage will have to be under unfortunate "in sickness and in sickest" conditions. And I am not healthy enough for biological children.

So, it is difficult not to jump to the conclusion that God's obviously contrasting plans are wrong. His divine nature does not render Him free from our humanly projections. However, it does give all the more reason to warm up to His will.

Jeremiah 29:11 is no longer a hackneyed bible verse. It really is brimming with meaning. Lack of experience simply inhibited my understanding. It is a reminder that God has plans to prosper and never to harm, even when I cannot fathom how that can be and when everything possible is going awry.

Yes, God's plans can not compare to my own. They are better.


Friday, September 8, 2017

Damage Control

Hurricane Irma is due to hit my former home. According to the news, my current location might experience some residual tropical storm weather as well. The incoming storm has everyone on high alert. People are stocking up on food, bagging up sand, and boarding up windows. Although my area is not susceptible to the severest of weather, they remain in a frenzy of melodramatics. I even went to an appointment earlier in the week where I was asked if my house had stocked up on bottled water. I just chuckled and responded, "no."


This is what is done for a disaster. Perhaps Florida's response is warranted. South Carolina...not really. Floridians are smart to extensively prepare in advance as they anxiously wait for the storm to come. Once it does, they will hope the devastating effects were reduced by their preparations.

But we do not always have time for such extensive preparations. Often, in my experience, there is little warning before a disaster strikes. It is like the split second of an impending car crash, characterized by the squeal of the brakes and the seatbelt cutting into my flesh. It is also like witnessing a pedestrian's death as she is ran over, her body thudding on the hood of a car about a hundred feet away from my own.

Those two events share a commonality, despite occurring ten years apart. I did what I could. I wore my seatbelt. I carried a cell phone. The drivers drove with caution. Even with preparation, I had no control over either accident. I saw the SUV. I saw the woman in the air. Yet, it did not pause the phoning of 991. It did not stop the minor bruising of the fender bender or the ambulance and the causality of the other accident. I was helpless and anticipating for the chaos to ensue.

In a way, chronic illness is comparable to living in an endless cycle of disasters. My body is inevitably failing. I take my medications. I rely on my feeding tube and central line for nutrition. I undergo numerous tests and labs. I attend scheduled appointments with my doctor. However, all of the preparations cannot prevent my illness. I know another flare is imminent. New symptoms will arise eventually, and old symptoms that disappeared for a duration will return. A central line break, sepsis, or feeding tube malfunction is probably in the future too. Disaster is not if, it is when. I am left waiting for tragedy. For the next shoe to drop.

So, where should the line be drawn? Is there a happy medium between healthy concern and an incessant state of nervous catastrophe? Unfortunately, chronic illness is more frequent than a yearly hurricane. There is no weather forecast. And I find myself dreading the calm before the storm. There is only so much damage control possible.






"Cast all your anxiety on him, because he cares for you." - 1 Peter 5:7

Sunday, September 3, 2017

Hospital Admissions With Mast Cell Disease - Part 2

"It's not you, it's me." I have had some awkward breakups—the kind that entails burying your head under the covers to contemplate where it all went wrong. Surprisingly, the worst breakups occur at the beginning of hospital shift change. You might wonder what breakups have to do with a hospital. Observe as a patient with Mast Cell Disease catches a whiff of their new nurse's perfume and you have your answer.

As I mentioned, I once spent eight months out of an entire year inpatient at the hospital. Five of those eight months were consecutive. It is only by the grace of God I did not go completely crazy. By day one of the admission, I quickly learned that there are issues in the hospital that are unique to the diagnosis of Mast Cell Disease.

I have had my fair share of breakups, or rather, firing a doctor or nurse after they triggered an allergic reaction by wearing scented products. And, yes, I really did hide beneath to hospital bedding to avoid the waft of strong laundry detergent on a nurse.

The Hospital Admissions With Mast Cell Disease series is meant to reflect such an experience. Hospital admissions are futile if the triggers in the inpatient environment are not handled appropriately.

In case you missed it, read Hospital Admissions With Mast Cell Disease - Part 1.


Scents Are Reaction Triggers 

Mast Cell Disease reactions have many triggers. They range from foods, temperature, stress, chemicals, pain, and scents…

Yes, you read it correctly. Exposure to scents comprise only a portion of the triggers for mast cell reactions. However, it seems to be the trigger that causes the most grief. Those who do not understand the disease hold the belief that scents cannot trigger reactions, and if they do, the symptoms are never severe in nature.  

The concept of reacting to triggers so seemingly harmless and minuscule is not easily understood amongst the medical community or the general population. When explaining scent-related reactions, it is important to emphasize that it is NOT the scent itself causing reactions. Various scented products, like perfume, cologne, lotion, and cleaning supplies are comprised of chemicals. The chemicals are released into the air. Upon inhalation, the chemicals trigger reactions in sensitive individuals.

The resources in the post, Hospital Admissions With Mast Cell Disease – Part 1, are helpful to educate about the possibility of scent triggers. It is also useful in managing non-scent related hindrances in hospital admissions.

Create A Warning Sign

Posting a sign on the door outside of the hospital room serves as a warning to others not to enter if wearing scented products so that they do not inadvertently trigger a reaction.

Below are (2) examples of signs I have used for my hospitalizations:

Sign #1

"I am very sensitive to smells. Please do not enter my room if you are wearing perfume, cologne, lotion, scented soaps, etc. Thank you!"


Sign #1 is simple and to the point. Unfortunately, when encountered by those unaware of the situation, it is easily overlooked because of its size and vague wording. It does not offer an explanation, which can provoke confusion. 

Sign #2

"ALLERGIC: No perfumes, lotions, cleaning chemicals, food trays. Please do not enter room if wearing scents. Please see nurse."


Sign #2 has proven more effective. It is larger and easier to see, so oblivious, trigger laden people do not overlook it as they waltz in the room. The "please see nurse" portion lends an explanation for those not aware of Mast Cell Disease. The nurse can handle the inquiries.   

It is also inclusive of all scent related triggers with the mention of cleaning chemicals and food trays rather than focusing solely on perfumes. 

Scent Triggers From Doctors 

The largest issue in terms of scent triggers are the doctors disregarding the warnings because a) they are as uninformed as the rest of the population and do not believe scents trigger severe reactions and anaphylaxis OR b) they feel the warnings, like the signs on the door, apply to everybody except them. 

Tips 

  • Educate them. 

Continue to educate using the resources in the post, Hospital Admissions With Mast Cell Disease – Part 1

  • Involve patient advocacy.  

The role of a patient advocate is to act as a spokesperson for patients. Healthcare is confusing for patients and medical professionals alike. A patient advocate helps to keep the peace.   

The success of patient advocacy at resolving conflict is dependent on the hospital. It is likely that the patient advocate does not have the clearest understanding of rare conditions either, but their involvement is a safer route than contacting the higher authorities.

  • Consult a specialist in Mast Cell Disease. 

There are a handful of top specialists in Mast Cell Disease across the globe. In my experience, they are happy to answer questions on the subject when contacted. Encourage problematic doctors to reach out to have their doubts on scent triggers clarified. Not every doctor is receptive to the idea of consulting another doctor, as that entails admitting they do not know all, but the ones who are dedicated will initiate the conversation with a specialist. 

Doctor drama arising from scent related controversy is stressful, as the options for resolution are limited. However, nurses receive the bulk of patient contact. They can become your greatest advocate or your biggest hindrance in a hospital admission. They should be a primary focus. Of course, of the following advice can apply to doctors too. 

Confronting Nurses About Scent Triggers

Nursing school advises that students are scent free in the work place. Perfumes, lotions, strong laundry detergents, and other scented products are infamous for turning the stomachs of sick patients or causing asthma attacks in those with breathing difficulties. Nevertheless, the scent free teaching is not always executed and enforced after they graduate and begin their careers in a medical setting. With Mast Cell Disease, that is detrimental. 

Nurses should possess the desire to go above and beyond for their patients. Having to request a new nurse because the one assigned is wearing perfume is, well, awkward. Even when conveyed politely you'd be surprised that the majority get majorly offended.   

  • Be informative.

Most nurses are initially ignorant to the fact that scented products are perilous to a patient with Mast Cell Disease. They do not realize that the consequences exceed a headache or an uneasy stomach. Resultantly, they do not intend to put your life at risk, or realize that there is a problem. Educating the nurse is key. 

  • Contact nurse administrator. 

It is impossible to directly address an unsafe nurse wearing scent, as that would require a lengthy exposure to a trigger. I have had the nurse administrator send a mass email to the nursing staff through the charge nurse. The email featured literature and a short video clip on Mast Cell Disease. 

  • Be kind. 

Mast Cell Disease is not a diagnosis nurses typically have experience with. The strange requests are seemingly neurotic to anyone not aware of the disease. Rudely expressing specific needs is reciprocated with disrespect and unwillingness to concede. We need to treat nurses with kindness so that they do not mind the inconvenience. 

With the five consecutive months I spent inpatient, I have witnessed numerous interactions between the patients and families and the nurses and medical staff. Nurses talk. Patient confidentiality does not hinder nurses from complaining about their complicated patients with hostile interactions.  

People in general are apt to be accommodating when they are met with courtesy. Genuinely act like you care. Change the topic of conversation to them. Ask about their day. Overall, a kind demeanor gets you far.

  • Do not be demeaning.

Nurses may not understand your diagnosis, but do not resort to belittlement or imply that they are ignorant and lacking in knowledge. 

  • Express your appreciation. 

Verbally tell your nurses how much they are appreciated. Yes, accommodating your health is their job, but don't forget to thank them regardless. Please and thank you goes a long way. 

Give a token of your appreciation if financially able. Once my family bought donuts for all of the nurses on my floor. Cards are a good idea. It can be a small gift that communicates to the nurses that they are thought about and that they are an essential part of your care. Because they really are! 

Plan To Ensure A Safe Nurse 

Depending on the hospital, nurses are assigned in advance. Speak with the charge nurse about assignments, as they have the authority to prepare staff for complications that could potentially arise.

  • Request that the charge nurse pre-informs the nurse(s) assigned to you. 

Charge nurses are in charge of the nursing assignments. They might not be aware of the exact nurse assigned to you before the shift starts, but they are able to identify which nurses are scheduled to work that day.   

Have the them call the nurse assigned to you, or all of the nurses scheduled, and warn them not to show up wearing scented products that could cause a reaction. Knowing well in advance avoids the uncomfortable conversations demanding that the nurse with scent leave.

  • Create a "safe" list. 

If admitted for an extended hospital stay, nurses become very familiar. You will discover which nurses are consistently safe and work best for your needs.   

Requesting a nurse is normally against hospital policy, as favoritism is offensive. Instead, collect a list of safe nurses and their names. Give the list to the charge nurse or whoever is appointed head of assignments for each shift. From then on, they will assign nurses to you based on that list. 

When There Is No Safe Nurse

Mishaps happen. Sometimes there are literally no safe nurses to assign. That causes controversy. A patient is in the hospital to get better, not to suffer at the hands of medical staff. 

  • The scented nurse can shower and change into different scrubs provided by the hospital. 

Showering is the proper recourse to rid of strong shampoos, lotions, and perfumes. Changing into hospital scrubs especially solves the dilemma of strong laundry detergents, as hospitals wash their linens with scent free detergents. The surgical floor is generally where they'd have to go to do this before returning to the regular floor.   

Showering is a lot to ask. I have had wonderful nurses offer to shower and change in order to care for me, which is where the idea came from. The goal is to convince the nurses to propose the suggestion themselves, rather than outright commanding them to.   

I might say, "When in this position in the past, another nurse went to the surgical floor to shower and change..." 

  • Gown up. 

My subtlety in trying to convince the unsafe nurse to shower is occasionally missed. However, having the nurse gown up prior to entering the room to administer care is an option. Hospitals have boxes of gowns outside of the room. I have had nurses that might not wear perfume, but are not fond of washing their clothes in scent free detergents. Gowns minimize and cover up traces of the scented laundry detergents.

Nurses choose a profession that exposes the true nature of their character. While some are never compelled to take drastic measures for their patients, others lovingly embark on the wild journey that is learning about and accommodating their Mast Cell Disease patients. Spending half of a 24 hour day with patients, they develop into friends as they share in the laughs and in the tears.

Reactions To Cleaning The Hospital Room

Hospitals are dirty. Janitorial staff must clean to prevent germs from going rampant. Even more predictable than a doctor's rounds is the daily presence of the cleaning bucket. Cleaning chemicals are not conducive to a patient with Mast Cell Disease, and the chances of the janitor being scented is rather high.   

My first stroke like episode reaction was triggered by the cleaning lady's Bath and Body Works lotion. The mask was not sufficient at keeping the strong waft of lotion and cleaners out. 

Accommodations

- Bring safe cleaning products for the janitor to use.
- Mop with water only.
- Leave the cleaning cart outside of the door.
- Have a friend or family member clean the room instead.
- Ask the nurse on shift if they would be willing to take out the trash. 


Airborne Reactions To Food In The Hospital

Instigating hunger for food other than the hardly edible hospital cuisine is not the lone problem caused by breakfast, lunch, and dinner time. Airborne food proteins are another potential hazard. People have to eat. Expect food exposure.

  • Anticipate meal times. 

The air conditioning can bring the scent of food from the kitchen into the hospital room. It is usually around scheduled times. Wear a mask according to that schedule.

  • Avoid tray food locations. 

There are various spots on the floor where the dirty trays are stored following meals. Request a room distanced from that area.

Hospital Diet

Nutrition is important in the management of Mast Cell Disease. Although nutritional interventions like tube feedings and TPN are commonly used, not all patients are in the position to entertain those options. Still, hospital food does not accommodate the extent of dietary restrictions. 

  • Bring safe food. 

If it is a planned admission, pack enough food for your stay. Friends or family can also deliver groceries or food from a safe restaurant. 

In the past, I followed a liquid raw vegan diet. Fresh fruits and vegetables that are all organic are not offered on the hospital menu. 
Groceries Everywhere!!
They permitted the use of both my juicer and blender in my hospital room. It was stored on the counter and washed in the sink. Family purchased the produce and delivered the groceries to the room that I was staying in.


Food Storage Tips

  • Request a fridge. 

Refrigeration might be necessary for your food. There is a fridge on the floor shared amongst the nurses. Since Mast Cell Disease does create extenuating circumstances, ask if they would be so kind as to allow you to use that fridge for a few of the safe food items. 

  • Purchase a cooler. 

Coolers and ice packs are convenient for the remainder of the food. 

It is true that the complexity of Mast Cell Disease leads to unwanted confrontations and issues that deviate from the usual hospital routine. However, with accommodations and support, a hospital admission can be a nice experience. 



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).

Resources 

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.

Videos

  • 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.

Books

  • 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.

  • Be SPECIFIC and REPETITIVE. 

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