I cannot wait – we are nearly ready to drop off our first iteration of Support Kits to lung transplant recipients! After someone receives a lung transplant, they will receive the support kit which contains comfort items and a communication tool binder.

Bag contents

• Super cozy fleece blanket
• Eye mask
• Face wipes
• Lotion (travel size)
• Kleenex (travel size)
• Mini nail file
• Communication Tools (mini)Binder (8.5″ x 5.5″)
  • Magnetic “do not disturb” / “please disturb” sign for naps
  • Pen, larger grip area to help with writing
  • Blank and lined paper
  • Pocket folder
  • Sheet protected cards to visually express symptoms/needs:
    • Headache
    • Pain
    • Thirsty
    • Bathroom
    • Sit
    • Anxious

Why these items

The items in the bag came from my personal experience through two double lung transplants, a mandatory two week stay at the hospital to manage rejection after my first transplant, and trips into the hospital with unexpected overnights prior to lung transplant.

• Super cozy fleece blanket: a friend of mine, who also received a double lung transplant, sent me a “care kit” when I was in the hospital for rejection treatment after my first double lung transplant. In this, she sent a vibrant green fleece throw blanket which added a personal touch to my hospital room – the room that was my limited area for two weeks. It was such a lovely surprise, I wanted to share that feeling of being cared for with everyone who has an extended stay in the hospital. You’re in there to heal, let’s make it cozy.
• Eye mask: it is difficult to get sleep when one is in the hospital. Another friend of mine purchased me eye masks when I’d gone in with acute pneumonia, prior to my first lung transplant. And, the eye mask, made such a difference for me! Eliminating the hospital light that is never truly off. An extra recommendation, that is not included in this first iteration, is ear plugs to really zone out and forget where you are for a little bit plus get a rewarding nap.
• Face wipes: during stays prior to my transplants and during both transplants, I was so exhausted at times that I couldn’t physically get myself out of bed but needed to wash my face. Face wipes became a necessity for me and I always pack some – even now when I’m headed off to actual vacation! It is nice to have throughout the day, too, while in the hospital for a quick refresh.
• Lotion (travel size): sometimes, there is lotion included in your hospital room kit, but I found that more often than not I needed to request it which was an extra stress, for me personally, so I kept a travel size lotion packed and ready for my trips to the hospital. The air is carefully managed in the hospital to prevent the spread of germs, which an unfortunate side effect means your skin will get very dried out.
• Kleenex (travel size): I found that the tissue boxes available in the hospital weren’t very “nice” to my nose, so I made sure to always have a little travel pack of soft Kleenex with me. I continue this pattern today! Or I’ll grab a handkerchief for appointments as to avoid rough tissues and save my nose.
• Mini nail file: I absolutely cannot stand it when my nails snag on fabric. Just writing that out made my cringe. For me, this mini nail file reduces my personal stress levels because I know if I break a nail or have a scratchy part of my nail, I can manage it with this tiny tool.
• Communication Tools (mini)Binder (8.5″ x 5.5″): I was intubated and on a ventilator for a few days prior to my first transplant due to acute pneumonia. The medical team needed to keep me intubated in case my carbon dioxide levels escalated quickly, again. During that time, it was incredibly difficult, nearly impossible, to speak. I felt helpless despite the nurses best efforts, so to help anyone else who may experience the inability to communicate, I came up with the communication tools binder. In this, I have the more common needs, as listed prior. I want to share more about why I have the “do not disturb” / “disturb” option. I am one who likes to hear the information and digest it, ask my questions, and assess what it means for me. And, with this, I would be so anxious I’d miss the rounds from my team of specialists during my stays at the hospital. I’d inform my nurse that I would like to be woken up, however – they are busy! And even though they remembered, they often need to tend to other patients and may also miss the doctor or fellow stopping by with test results. I would have loved a sign that said “wake me up!” while I was napping so I could, truly, nap instead of glancing under my drowsy eyelids anytime I heard movement out my door.

An iterative approach

I’ve included in each bag, and various other places, a QR code to get feedback from bag recipients (and their caregivers) on what other items I could include in this package to help tailor it to broader needs.

It is important to learn from the community around us and grow to best serve this population.