Saturday, January 20, 2018

Hospital Admissions With Mast Cell Disease Part 3: Hospital Checklist

Wallet: check. IV medications: check. Change of clothes: check. Tube feeding supplies: double check. I often joke that I bring everything, including the kitchen sink, just to go five minutes down the road to the nearest store. Going to the hospital is no different. In fact, it requires even more planning!

A recent pre-planned hospital admission to begin TPN really got me thinking. Mast Cell Disease presents unique circumstances. I previously wrote a series of blog posts about hospital admissions with Mast Cell Disease. The first post addressed the never ending battle of confronting medical professionals that are not knowledgeable about the condition and its manifestations.

Read Hospital Admissions With Mast Cell Disease: Part 1 

The hospital can easily become a dangerous environment because Mast Cell Disease causes reactions to commonly used chemical cleaners, fragrances on hospital staff, and airborne and ingested foods. So, the second post elaborates on how to navigate those added triggers in an inpatient hospital setting—like alternatives to overcoming scent-laden doctors and nurses, as well as prepping allergy friendly meals with the hospital room as a kitchen when their menu offered is not safe.

Read Hospital Admissions With Mast Cell Disease: Part 2

With trigger exposure significantly increased, the necessary items for a hospital admission are not the straightforward PJs and snacks. It is important to have a hospital checklist to prepare for any potential situation that may arise while out of a home environment.

Medical Supplies

  • Medications (Scheduled and PRN) / Pumps, Pump Batteries, Syringes, Bags to Administer 

Some patients, like myself, are brand specific on medications and bags/syringes in which they are administered. Other medications are not easily obtained because they must be compounded to remove the fillers and preservatives. It is imperative to have ALL medications on hand because there is no guarantee that the hospital will have safe versions of specific medications. The hospital can "check in" home medications for the nurse to administer.

Home health infusion companies are not allowed to deliver if the patient is admitted. Instead, the company should be able to send a currier to the hospital pharmacy with the medications and supplies.  That way, the hospital can prepare medications and supplies identical to the way they are prepared at home.

  • Feeding Tube Formula, Pump, Pump Charger, Bags, and Extensions (if applicable) 

While in the hospital, I am usually on tube feedings or supplementing with tube feedings.  The hospital does not always have my special elemental formula in stock. I bring a few cans of the formula to use until the nutritionists are able to order it. 

Extra extensions for tube feeding and venting are also nice to have. Inevitably I will drop my extension for my mickey GJ button on the hospital floor. As a result, it takes many hours and five nurses to hunt down a replacement extension. 

Hospitals tend to prefer patients use Kangaroo feeding pumps. The pump I typically use from home is the Infinity. I always pack the pump and its compatible bags to use through the entire admitting process—whether it is in the ER or in between Kangaroo pump failures. (Trust me, those do happen)! 

  • Cooler 

Perhaps it seems crazy to tote a cooler through the hospital. It's not like a trip to the beach, requiring an artillery of refreshments, right? The cooler is beneficial to store safe food and water, as well as home IV medications that must be kept refrigerated.

  • Vogmask with Carbon Filter

The hospital is brimming with germs and scent triggers. The yellow masks typically provided are not suitable for a sensitive patient with Mast Cell Disease. They do a poor job at keeping out the strong cleaning chemicals and perfumes and colognes on staff. I prefer the Vogmask with the double carbon filter to ensure my safety because triggers are even encountered when cooped up in the room. 

  • NO Scent Warning Sign

The Vogmask is not entirely effective for scent triggers. I put a hand-made allergy warning sign on the outside of the hospital room door. Examples are in this post. It lessens trigger exposure by warning those wearing scented products not to enter. Unfortunately, there are always some who believe a medical degree exempts the warning from applying to them. So, the mask is backup! 

  • Central Line Dressing Kit / Alcohol + Betadine 

Again, I am very brand specific due to wacky mast cell allergies. If the admission is longer than a week, I pack a dressing change kit and my safe brand of alcohol or betadine in case the particular dressing kit is not available at the hospital. 

  • Tubie Pads / 2x2 Split Gauze

I go through gauze and tube pads like they are going out of style. Psh, I wish. When I forget to bring my own, I am stuck with the bulky 4x4 gauze at the hospital. I quickly learned not to forget! 


  • Unscented Soap/Shampoo

I do not tolerate the soaps offered by the hospital, despite it usually being delicate Baby Shampoo. 

Washing my hair in a puke bucket when unable to get out of bed is less than glamorous. Inevitably, it makes a mess! A friend made me aware of the hair washing trays and/or basins during my most recent admission. Hair washing is simplified with the tray, as a bed or chair can be moved to the sink. 

  • Hair Dryer, Hair Clips / Ties 

  • Toothbrush with Safe Toothpaste

  • Unscented Hand Soap

Nurses and other hospital staff are required to wash their hands and use hand sanitizer upon entering and exiting the room. Depending on the hospital, the hand sanitizer and soap are both scented and occasionally cause reactions. I pack safe hand soap and place it by the sink for all to use. 

  • Safe Cleaners

The products hospital janitors clean with cause me to react. They obviously clean my hospital room prior to my arrival, but any cleaning thereafter must be completed with safe products. I bring large alcohol wipes to clean surfaces if they do not agree to using water only.


  • Card Games
  • Laptop
  • iPod
  • Chargers for electronics 
  • Book / Kindle
  • Clip on Book Light
  • Headphones


  • Specialist Plan 

The average hospitalist is not very informed of Mast Cell Disease. And that is not a bad thing if they are open minded and willing to learn. Still, it is not wise to demand treatments in a confrontational manner. Having a written treatment plan from a physician that specializes in the disease is a great teaching tool and any medical professional is more apt to follow instruction from a fellow doctor than a patient.  

  • Contact Information

With a complicated condition, the more people on our side, the better. A written plan from the specialist is helpful, but a hospitalist might have further questions. Give them the contact information to the offices of other doctors on your medical team.

  • Medical Records 
The majority of admissions are to fix emergent situations and not for investigative purposes. Yet, it is convenient to have a binder full of medical records to reference.


  • PJs / Comfortable clothes 
  • Socks
  • Sheets, Pillows, Blanket

A good night's sleep does not consist of your head sinking a foot into the pillow. While the hospital bed comes compete with linens, I bring linens form home that I know are washed in a familiar detergent to place on top of what is already on the hospital bed. 

  • Slippers
  • Rubber Flip Flops 

Showers in the hospital are what I call grody. The flip flops decrease the "ew" factor just a smidge. 

  • Positive Attitude 

Days in the hospital run together. Looking out of the small window, people as small as ants are participating in the hustle and bustle of life—oblivious to the isolated patient watching from seven stories up. 

Feeling sick makes it difficult to remain optimistic, but a positive mindset going into an admission really is essential. Try to keep from going stir crazy. I made it eight months. You will be home before you know it!