Our Story: Waiting Period

Once you have been accepted to a transplant program, you wait until compatible lungs are found for you. The length of this waiting period will vary widely for each individual. Unfortunately, the ravages of CF can overtake some patients before suitable lungs are available.

In our experience, this was a time wrought with anxiety, physical difficulties, frequent hospitalizations. The hospitalizations were different; instead of the usual “bump” in pft’s that CFers have come to expect from a tune-up, no improvement happened. We learned – and tried somehow to accept – that the tune up was keeping my husband alive and keeping infection at bay, but it was not improving quality of life whatsoever.

Tragically, in some cases, the treatments not only fail to improve quality of life, but they can’t save it either. For this reason, connecting with a transplant team sooner rather than later is key. Of course, this is a very tricky balance to strike because receiving a transplant has to occur at just the right time. The transplant team does not want to perform the surgery too soon due to the toll the post transplant medication regimen takes on the rest of the body. However, you cannot wait too long for the surgery either because the body needs to be strong enough to survive the rigors of the 8-10 hour surgery.

This is a balance that doctors involved with transplant try to find. No one knows the future, so this is one of the single most difficult aspects of Transplant World. In our case, we relied on Divine intervention in this matter.

This waiting period of time, for us, was also when the management of two separate health care teams in different cities began in earnest. In addition to the dramatically increasing physical and mental challenges, the practical aspects of managing scads of medical paperwork, important documents, numerous phone calls and emails and paying bills all made living life dramatically different than it had been for us.

In some ways, preparing for transplant is like looking for a job. We tapped our resources and then networked beyond them. We found that when we described our situation, people were eager to help us in our endeavor, whether it be arranging transportation or lodging or fundraising.

Your transplant center will give you approximate wait times in your situation. Since the length of wait varies, depending on a variety of factors, you need to have key arrangements lined up in preparation for “the call” – the notice that your transplant is being scheduled. The transplant team gave us three important “homework assignments” during the waiting period: lining up short notice transportation, arranging lodging and creating a phone tree.

There’s such a flurry of activity and emotion that the MORE YOU DO AHEAD TO PREPARE, THE BETTER! In case you missed it, check out the Our Story: Getting and Staying Organized pages.