The Lists

We put together a few lists to help us with our preparations for appointments and hospital visits. The lists not only sped up the process, but also assured that we didn’t leave something behind that was critical to the success of our trip. You’ll see cell phones and chargers on all of the lists. The phone was always going crazy and we didn’t want to lose battery power. In fact, we found out the lungs were a “go” via a cell phone call while sitting in OR holding area!

Travel List

Of course, the trip for the actual transplant involves an extended stay. We were also told that it was likely we would have a “false alarm” where we would get the call that lungs were located but, on further examination, they could be deemed unworthy for transplant. SO, we had to bring enough with us for a night or two stay at the hotel. This was particularly important for oxygen, daily medication supplies (such as inhaled antibiotics) and enough insulin and pump supplies for a few days. We also brought extra clothing and personal items for comfort.

  • The Book
  • The Med Bag
  • Oxygen (concentrator as well as additional tanks)
  • Insulin in a cooler
  • Insulin supply bag including pump supplies, infusion sets, sensors and reservoirs
  • IV and/or PICC line meds and supplies
  • Suitcases packed for the expected length of a motel stay
  • Backpack for toting supplies at the hospital
  • Toiletries, makeup, sunscreen, etc.
  • Pillows
  • Laptop
  • Phone and phone chargers
  • ID and Insurance cards
  • Cash and credit cards
  • EZ Pass for tolls
  • Snacks and water bottles in a cooler

We live six hours from our transplant center, so it’s likely that each visit will involve an overnight stay. We did an appointment in one day once, but that’s not our preferred method! We have continued to use this same list for our follow-up visits to the transplant center.

Waiting for “The Call”

When we were waiting for “the call,” we had as much as possible of the travel list packed and ready to go. We had kept a full tank of gas and stored extra oxygen tanks in the vehicle. We even kept our packed suitcases in the vehicle. But I also made another list of “last-minute” items to pack which included refrigerated items (like insulin) and items we used daily (like phone chargers, hygiene items, jackets, etc.). The “last-minute” list was a wonderful asset in the middle of the night when we had to harness the adrenaline rush that was inevitable upon receiving such news. We received our call at 1am, were in a sound sleep and needed to gather our wits quickly. We had 30 minutes to get on the road, so we were grateful that we had planned our phone tree and packed as much as possible.