It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my old family home was hard. Last week, I relived this experience when my son Cullen switched clinics and transitioned from pediatric to adult care.
Since Cullen was 8, Lucile Packard Children’s Hospital Stanford (LPCH) in California has provided him with six years of specialty care for pulmonary hypertension, saved his life with a heart and double-lung transplant, and followed up with almost six years of post-transplant care. When at home in Washington state, Mary Bridge Children’s Hospital and Seattle Children’s Hospital have collaborated with LPCH to help monitor his health and treat him through many of his emergencies. They have been his home away from home, and the residents — both medical staff and fellow patients — are like an extended family to us.
It is difficult to walk away from the security of a familiar setting and those we trust. Now we must find our way through halls we have never walked and have faith in people we have only just met. But just like in the games that Cullen likes to play, he has leveled up. He has survived enormous challenges, eluded death, and can move forward with confidence. Even if the setting and the characters have changed, the game has not. We know how to play it and have been instructed well on how to help Cullen beat the odds and keep winning.
Instead of transitioning to the adult side of Stanford, with the support and understanding of his pediatric team, we transferred all of his care to the University of Washington Medical Center. His health over the past few years has been complicated by kidney disease caused by immunosuppressants. It seemed prudent to choose a facility close to home, where he can be treated under one roof by all of his various specialty doctors. Maybe condensing his care to one facility instead of three will finally stop my nightmares about accidentally taking him to the wrong medical facility for an appointment or procedure.
I know how fortunate we are that Cullen is still with us to experience transitioning to adult care, but my nerves prior to his first appointment with the UW lung transplant clinic would not settle. I feared that all he had been through and the medical decisions made that brought him this far would go forgotten and never learned. It was important to me that his new team know his history from at least transplant to now. I painstakingly compiled an eight-page outline of events.
I placed them in a binder with copies for the doctor, and added other concerns, including four pages detailing current medications and allergies, pictures of his most recent bronchoscopy, an outline of his last yearly post-transplant visit to LPCH, and questions we didn’t want to forget to ask.
We felt prepared and left the house early to give us time to acquaint ourselves with the new hospital. It calmed our nerves not feeling rushed as we navigated from the lab to radiology, then on to the pulmonary function center, and finally the lung transplant clinic. But it was a big relief not to feel rushed by his new doctor. She was very thorough, already knew his history well, and answered questions before we had to ask them.
The doctor ended the appointment by encouraging Cullen to speak up about any concerning changes to his care. She wants this process to go smoothly as much as we do. Already she has exemplified many of the important qualities we want in a doctor. Referrals to other specialists, especially cardiology and nephrology, have been sent, and we are optimistic that those first appointments will go well, too.
My words of advice when tackling a medical move:
- Maintain a binder. It is better to feel well-prepared than not for appointments.
- Arrive early. Don’t add to your stress by being just on time or late.
- Ask questions, listen well, and take notes. Apply what you learned in the past to help you tackle challenges and change.
- Make certain every doctor is communicating with others to ensure whole-person care.
- Give your new home a chance to make you feel safe and secure.
Cullen was forced at a young age to journey a long and difficult path that offered little hope of it leading to adulthood. The fact that he has made it this far is a cause for celebration, and we look forward to this next phase in his life.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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