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Transitioning to Adult Care

Transitioning towards adulthood is a challenge for anyone, add in a huge shift in treatment and care for people living with cystic fibrosis and it can get overwhelming. So whether you are someone living with cystic fibrosis, loving someone with cystic fibrosis, or a CF healthcare provider, we think this article is an important read:

  • “The change is drastic. Suddenly, you are seeing and hearing about people with CF in the rooms surrounding you that are in life and death situations and that can make the disease very real. Be sure to talk to your team long before you actually transition so you and your family can be as mentally prepared as you can be.” – Meaghan MacRury
  • “The first thing I would offer to a transitioning patient is… get to know your team as you make the transfer to adult care. Share about yourself; offer more than what your chart says. Let the team know who you are. Ask questions and be honest about yourself. This is a great opportunity to learn and accept greater responsibility and independence surrounding your health care. You are an adult and will be asked for input; be prepared and excited to contribute to your action plan. Seek to attain a better understanding of your illness and yourself (from reliable sources). Be thankful for the care you receive; show respect and gratitude where it is due.” – Alex McCombes
  • “Congratulations, you are now an adult! Be prepared to manage your own health. Get to know the Adult CF team and what their roles are. They are there to guide and assist you where ever possible. Do not be afraid to ask questions and voice your health concerns as being your own advocate is very important. With all of the new information and testing, you will experience it may be helpful to bring a friend, relative or life partner with you to the first few appointments. The transition may be overwhelming and having a second set of eyes and ears can be most helpful.” – Brenda Chambers-Ivey
  • “Be patient. The transition can take time. Most adult clinics also are continually trying to improve cross contamination so it can change regularly. Bring stuff to do and be ready to wander the hospital finding stuff. In Toronto, the hospital is being updated so different departments move from time to time.” – Rob Burtch
  • “You don’t have to figure it all out at once. Don’t be afraid to ask for advice from your CF team. Whether it’s to gain more CF-specific knowledge, ideas for strategies to make taking your medications more manageable, ways to improve your nutrition or anything at all, don’t be afraid to ask questions and seek out support.” – Megan Parker
  • “Your adult team will be a part of your life longer than your pediatric team has been. Embrace them. Befriend them. It’s always a shock to have a big change in your life, but seeing as there’s no other choice in this situation try looking at it in a positive light!” – Chelsea Gagnon
  • “You don’t have to make the transition all at once! Start a year or so before transitioning – go to clinic appointments on your own, stay on your own in the hospital for at least part of your stay, and keep track of your own care needs. Once you start going to an adult care clinic, it’s okay to have someone come with you if you feel you need it – becoming your own advocate is a process, and it’s good to have help when you’re starting out.” – Terra Stephenson
  • “This is a hard one to answer as everyone’s experience is different. But foremost, remember that you’re an adult now and you deserve to be treated as such. You won’t necessarily be treated with the kid gloves or the over-abundance of kindness that you have been accustomed to. You should be respected as always but you must also prepare to go to the clinic without your parents eventually and to also keep a good track of your treatment. It’s still very important to have someone in your corner to help you keep track of new information and treatment changes as you will be faced with new challenges as you grow older. Even though your doctor keeps records, keep your own as well so you can compare your state of health from time to time as well as the times between clinic visits – but it’s ALL GOOD! You have worked so hard for so long! Be proud you’ve made it out of pediatric care.” – Timothy Vallillee

Have insights you would also like to share? To be quoted in our blog please contact Terra at tgillespie@cysticfibrosis.ca