The Art of Packing for an Unexpected Hospital Stay

Nothing makes me crankier than walking into the ER any time after 9 p.m. Lying on a stretcher that feels more like cardboard than a mattress, with fluorescent lights burning a headache into my temples, will have me missing my bed at home in an instant.

It’s an experience I’ve recently been reacquainted with. In December, I found myself in the ER twice, both times at the end of the day. My care now involves a lot of equipment — including my home ventilator — when nighttime is involved. These events caught my mom and me off guard and quickly had us reevaluating what needs to be included in my hospital go bag.

I’ve been fortunate to avoid the hospital since my heart and lung transplant in 2018, so this reality check was long overdue.

While I now require some additional equipment, the concept of preparedness has remained the same since I was much younger and living with pulmonary hypertension (PH). The essentials of my hospital survival kit haven’t changed much over the years.

There are the creature comforts, such as a set of pajamas, a pillow, a toothbrush, and toothpaste. Then there are the entertainment additions. This includes things like my phone and charger (with an extra-long cord), a book or my laptop, and always a set of headphones.

But most importantly, there are several things related to my care that we have learned to always pack when heading in for a potential hospital admission.

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Vital medical info

Some of the most important things I pack for the hospital can be found in a folder. This folder has my health history, an up-to-date medications list, and contact information for my care team.

While my care is now always provided at the same hospital, making records easily trackable, it used to be remote. So if I ended up at my home ER in Minneapolis, it was up to me to provide quick access to my records and history in New York, where I had been treated by a specialist.

This has made my parents and me pros at collecting and providing information regarding my health, and we’re always sure to bring it all along with us anytime we head to the hospital.

Essential care items

With PH, we were also always certain to bring my pill tray and a mixing kit for my Remodulin (treprostinil) infusion. While these things are usually managed by hospital staff once a patient is admitted to a floor, Remodulin is a very sensitive medication. As a result, the staff occasionally allows us to manage it ourselves if we are stuck in the ER for a prolonged period.

During my recent admissions, I was brought into direct contact with the overwhelmed nature of the healthcare system in this current climate. The staff was stretched thin and the halls were lined with people waiting for a bed. This seems to be the case in hospitals across the entire country.

When I went into the ER for the first time in early December, I was quickly “admitted,” but due to a lack of beds in the rest of the hospital, I ended up spending three days in the ER, with my care team coming down each day to make their rounds with me.

This is something I had never experienced during my time with PH, but if I had, I know bringing the items that were essential to my care would have been more important than ever. In the case of rare illnesses, it is difficult to be overequipped.

Support

The last thing I recommend for your hospital survival kit is a support person. I wish I could say that my years of experience with complex illness have made me an expert in preparedness, but at the end of the day, it is often my mother who helps me organize the essentials and who is always by my side when I walk through those rotating ER doors.

I’m so fortunate to have such immense support in my life, and I am a witness of the difference it makes to have an extra set of eyes and ears while in the hospital. Caregivers are such wonderful advocates, and while I dread any visit to the hospital, I’m so thankful that in my 24 years of illness, I’ve never been asked to do it alone.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.