Visitors when you get “The Call”

We moved to Pittsburgh so that Jens could have the transplant at UPMC. Jens’s closest family members were over three hours away. When he was officially listed, we talked about who we would want to come right away and who we would want there with us in that critical time (while he was recovering in ICU and the first few days). We had a game plan going into the waiting process, and he made his requests known to me. I also had family and friends offer to come to be with me when the time came.

Things aren’t cut and dry in this situation. Here are just a few things we had to consider:

• Sometimes you’re called as the “back up” and go home without getting a transplant (and this could happen multiple times).
• The expense of “last minute” flights for family/friends
• Who I (the caregiver) would want with me and feel comfortable around in a very emotional, stressful situation at the hospital that day/night while waiting for him to come out of surgery
• Who would follow hospital protocol as far as germs, visiting hours, etc.
• Who we would feel comfortable staying in our apartment
• Who was self-sufficient to take care of their own meals and get themselves around town (so that I wasn’t having to play “hostess” or “chauffer”)
• The medical needs of visitors (Are they sick? Do they have issues/medical needs that make it harder on the caregiver?)
• Family dynamics and relationships (this isn’t the time for drama or to meet extended family for the first time)
• The patient will be in a messed up state afterwards- who does he feel comfortable seeing him like that without being embarrassed
• Who will provide an encouraging and positive environment for the patient and caregiver

When we got the call, we were informed that we were the back-up to two cases. When we called his family, we let them know that we didn’t want them to get in their cars or on a plane right away. We knew that, most likely, they weren’t going to get to Pittsburgh in time to see him before surgery, so we wanted to make sure Jens was going to be chosen to get lungs before they started their trek. Technology is a great thing, and we were able to talk with them on the phone and FaceTime with them while waiting. I will warn you that those calls are emotionally charged things.  I don’t know that you can prepare for those kinds of phone calls.

 

Jens passing the time before surgery with baseball and his phone

One other thing to consider is how to share the news with your team of supporters. We had a website/blog, Facebook page, and Twitter to help us get the news out. We purposefully did not post anything the minute when we got “the call.” We knew that there was a chance we would go to the hospital and go home without new lungs. We knew that would be an emotional time, and we didn’t want to spread news that he was getting a transplant without being sure he actually was. While it was hard to keep this news to close family members for the first few hours, we eventually were told, “Yes, the lungs are for you.” This worked out well for us as we had a few hours after the “yes” to receive texts, posts, calls, and well wishes from our team of supporters around the country to give us a boost going into the surgery. We read them all, and I held off on responding to anything until he was in surgery. This gave me some purpose and something to do in the waiting room, as well as helping me to feel the presence of so many cheering us on.