As the new year begins we have some exciting news we’d like to share. Jody has been accepted into the Cystic Fibrosis Center at Johns Hopkins in Baltimore, MD! What does this mean? It means that all of Jody’s CF care (routine check-ups, as well as hospitalizations), will be done through Johns Hopkins. This was by no means a simple task, and it took much determination and persistence to make happen. You may be wondering why this is so exciting to us, let me explain.
Jody has been a patient of his current CF clinic for seven years. While we have developed a great relationship with his outpatient CF team, we have been less than impressed by his inpatient care (when he is hospitalized with a CF exacerbation). In general, this clinic tends to be a little more laid back in their care, and we desire a clinic that is a bit more aggressive. CF patients (and their families) really get to know the staff at their clinics so this is the hardest part about transferring Jody’s care. For example, when Jody calls his CF nurse he doesn’t need to say whose calling, she knows his voice. We have received birthday phone calls, cards, and his nurse even crocheted a blanket for our youngest daughter when she was born. Needless to say, this move is bittersweet as the staff of this clinic will be dearly missed.
So why Johns Hopkins (JH)? It doesn’t make sense, right? We’re giving up a 30 minute drive to his current clinic for a 90 minute drive to his new one. Here’s why:
- The pulmonary team at JH is ranked #4 in the nation for pulmonary care (and they’re only 90 minutes away from us; we do recognize though that this will be hard when Jody is hospitalized).
- The average lung function of CF patients at JH is better than that of the three other clinics in the surrounding areas. Could this be the result of better care?
- JH performs lung transplants so it will be easier to start that process when the time comes.
- JH came highly recommended to us by a colleague of mine whose husband underwent a lung transplant there. This colleague played a crucial role in getting us accepted into the clinic (M.T. if you are reading this, THANK YOU so much, we couldn’t have done it without you).
We feel so grateful for this opportunity. Over three months ago I made my first phone call to the Johns Hopkins CF Center and was told that because we have a CF clinic closer to us geographically, they couldn’t accept Jody as a patient. The lady explained that they treat over 400 CF patients, and that they just didn’t have room for more (despite the many phone calls they get from people trying to get into their clinic). If you are interested in hearing the rest of the story, and how we actually got Jody in, I’d be happy to share (but feel I need to end this here since it’s getting rather lengthy).
If you think of it, pray for us as we make this transition, and begin building those relationships with the center team members. We are hoping this change brings only positive results!
Here’s to a happy, healthy, new year!