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!

ListTravel 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.

Helpers List

We had also prepared extensive lists for those who would care for our children in our absence. Knowing I had written down as much as possible ahead of time brought a measure of peace as we traveled to the hospital. I was also relieved in the days following surgery because it would have been difficult to concentrate on any of that information as we recovered in the CTICU, running on such little sleep. The lists we left for the kids included things like:

  • Contact information for the kids’ doctors, teachers, counselors and coaches.
  • People who had volunteered to help with childcare, transportation to events, meals, etc.
  • Our kids’ schedules of activities, bus routes, concerts, sports, etc.

All the teachers and staff at the schools were aware of our situation. Our children were fortunate to be recipients of wonderful care and nurturing, love and kind understanding while we were gone. The more you can do ahead of time to prepare not only your kids, but also those who will be with them, will be so helpful for everyone involved!

Hospital List

On transplant day, we drove directly from home to the hospital, but we had everything we needed for a few days at a hotel in case of a dry run (see Travel List above). We developed a shorter list so we took as little into the hospital as possible and we didn’t have to carry a lot of stuff around! My husband needed very little – the hospital gave him whatever he needed (and they had a list on their website that we had consulted in advance). So, here’s a small list of what we brought into the hospital before surgery:

  • ID and insurance cards
  • Cash and credit cards for parking garage, snacks, etc.
  • Oxygen
  • Phones and chargers
  • The Book
  • Backpack to keep our hands free while toting these supplies

While my husband was in the cardio-thoracic ICU, he was “out of it” and didn’t need anything from me in terms of physical items. Very little was allowed in the ICU and his diet was restricted. (He didn’t have much of an appetite anyway!) Once my husband was moved to the transplant floor days after surgery, he began to request a few of his personal items for comfort. We found that the things I would typically bring him for a CF exacerbation local hospital stay were not the things he really needed or wanted post-transplant. Although the hospital provided almost everything he needed, there were some special requests, such as:

  • He was thirsty, so he requested fruit cups (no fresh fruit allowed that early!)
  • He requested his own shoes/sandals because he was walking for physical therapy and his feet were too swollen for sneakers
  • His own comfy shorts with a pocket for his insulin pump
  • Phone charger (of course)

Doctor Appointment List

Because doctor appointments can involve extended waits, we prepare for them like mini-trips. The hotel we stayed at for transplant center appointments was 30 minutes from the hospital, so we just packed for those office visits as if we were going to a local appointment. We take:

  • The Book
  • Money for parking garage and possible meal
  • Drinks and snacks for low blood sugar, just in case
  • Backpack to make it easier to manage the supplies