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Adulting with CF

The transition from pediatric care to adult care is a big moment in the cystic fibrosis community, which involves shifts of responsibility, advocating for one’s own needs, and lots of organization. The experience of transitioning from pediatric to adult care can be overwhelming, empowering, lonely, and costly all at the same time! We asked our community of blog contributors to share their experience with us:

“Transitioning to adult care began when I was a teenager, as my parents gradually released responsibility for my care into my own hands. I began monitoring my own physio/medication routines, and attending appointments alone. I also spent nights alone at the hospital when I was there for treatments, and this went a long way to helping me to become my own advocate! I think the only big shock for me when I switched from the children’s clinic to the adult one at St. Paul’s was the difference in the hospital atmosphere for inpatients. Whereas the children’s hospital was colourful, had lots of options for things to stay occupied, and had plenty of people who could visit you and help to normalize the hospital stay as much as possible, the adult clinic was dreary in comparison, with no colour, minimal things to do for entertainment (not even a proper TV in each room), and few people, besides doctors/nurses to visit with. It was certainly an adjustment, and I have come up with creative ways to make hospital stays more tolerable since then. With that being said, a huge positive of being in the adult clinic is how much the team takes your input into account when making decisions about your health, especially when you put the effort in to educate yourself and make yourself a partner in your care.” – Terra Stephenson

“My transfer to the CF adult clinic was a few decades ago. It was somewhat easier at the time because Dr. Tullis had begun a vitamin study at SickKids that I was a part of. I was able to be introduced to many of the team members prior to moving to the Adult Clinic at the former Wellesley Hospital. Becoming responsible for my own care was also something that my parents had started to let me do myself with oversight for any forgetfulness. Before I finished high school I was admitted to the hospital and spent three months there for complications from a septic intestinal problem that resulted in emergency removal of my colon. Over the next year, I dealt with a ileostomy, however by the fall I was in college and my care was again in my hands. Over the next few years I moved away from home, got married and had a family of my own by 23. My family has still been very supportive in every way needed. It is my belief that parents need to begin allowing their children to co-manage their care early. Let them be involved in ordering medication, replenishing supplies and cooking healthy meals. The more prepared you can allow them to become the better they will handle the changes that come with transitioning to adults clinics.” – Rob Burtch

“I thank my parents for having the foresight to prepare me for the transition from the pediatric to adult clinic. When I was 14 years old, my parents started assigning me small tasks and gradually handed over the bulk of my health care management by the time I turned 18 years old. They were always there to help if needed, but they highly encouraged me to make my own appointments, be my own advocate with medical personnel, keep track of all medications and refills, clean my own equipment, etc. I really feel that all parents should begin to prepare their young CF adults to make the transition easier and less stressful for all involved. Even after a lifetime of preparation, managing CF is a full time job. The most challenging aspect of transition for me was dealing with the financial aspect of having CF. Managing costs of travelling to appointments, paying for drugs not covered by insurance or provincial coverage can be very stressful. Not to mention the cost of eating a high calorie healthy diet. This comes with time but can be overwhelming. It is never too early to start taking charge when it comes to your own care.” – Brenda Chambers-Ivey

“When I transitioned from the pediatric clinic to the adult clinic, I was so ready for complete independence and ready to take on the world and see where life was going to take me. From an early age, my parents encouraged me to do things related to my health care independently, so when I transitioned to the adult clinic, I already had the skills to take care of myself. What changed though for me is taking on the organizational piece of staying on top of my health like ordering medications before running out, booking follow-up doctors’ appointments, making sure I had refills on medications, looking at extended health benefits and which meds were covered by who. CF is a lot to take on by yourself, so having support from friends and family has always been crucial for me and in my opinion, is one of the most important aspects of living with CF. Also, I think it’s essential to take advantage of any sort of organizational tool that will help you keep track of everything related to your CF. Whether it’s an app, using your calendar or day timer, using a seven-day pill organizer, whatever is going to help you stay organized will make things so much easier. And lastly, as an adult, I think it’s so important to speak up for yourself and not rely on your parents to do so for you. Advocating for yourself is a skill that is vital when living with a chronic illness as an adult.” – Kim Wood

“The transition from child to adult care was very difficult for me. It was very quick, and there was a drastic difference; the doctors, nurses, and all other staff were great but the environment was noticeably different. My transition also seemed to line up perfectly with when my CF decided to begin declining. I went from two or three hospital admissions over 15 years to 7-8 hospital admissions a year. It was an overwhelming point in my life and I struggled for several years after, still trying to adjust to the huge shift in my life. From the time I was very young, my mom always let me take care of my own medications. She knew what I needed to take, and when I needed to take them but always let me do it on my own so I would be independent. That was always our system, so when I ‘took over’ all the adult responsibilities of CF it wasn’t difficult. I was grateful for the way I was brought up, as I never needed to rely on anyone to go through my medication list with the doctors, the dosing, the names…it always my responsibility. I was shocked to hear from doctors and nurses that many people my age (at that point) did not maintain their care or know their own information offhand. In my mind, CF affects so much and it takes away our ability to control a lot of our future so I think that anything we can do within our control is very important!” – Meaghan McRury

“The biggest change was getting used to a completely different feel. I was one of the first few CFers to go to the new adult clinic about 30 years ago. The happy feeling of the children’s clinic was gone. It felt more clinical than caring at the time. The new environment was very dull as compared to the children’s hospital. But the care was still at an excellent level. Becoming an adult when you have CF also means success! Even though the responsibility was now my own, and still a little scary, I always took in the new milestone in my life with pride because I was beating all the odds that were constantly thrown in my face. Now at 51 years old, I continue to beat the odds and am proud that I have been diligent in my own care. I certainly have a support system to keep me in track as well. If it wasn’t for my family I may not be as successful because living with CF is definitely a team effort and can’t be beat alone.” – Tim Vallillee

“I transitioned from child care to adult care almost 30 years ago. As I recall, it was a time of newfound responsibility and accountability. This was a particularly positive time in my life. By that point, I was already invested in learning more about cystic fibrosis and how I could properly and proactively care for myself. It further evoked me to educate myself on more diverse components of self-care. Furthermore, it prompted me mold a lifestyle that would give me the best chance to remain healthy for a long time moving forward (understanding my progressive and degenerative condition). As I transitioned to adult care, my thirst for understanding and knowledge continued to grow. I became even more motivated and driven to combat CF. As my comprehension matured, I learned to properly self-advocate and actively listen. With that, I was able to better engage the advice and capacity I was given. Knowledge became enhanced fuel for me to act and react – it deepened my motivation to achieve goals in all facets of my life.” – Alex McCombes

“[The hardest part was] saying goodbye to my pediatric CF clinic at Sick Kids. I found the timing of everything to be tough. Being a 17/18 year old isn’t easy for anyone. It’s a time in your life when your independence and accountability are challenged. I was graduating high school and in so many ways, beginning a new chapter in life. Saying goodbye to the CF family that I had had for 17 years to transition to the adult clinic felt like an additional sense of responsibility. All of this at once felt like a stiff push into adulthood. I felt overwhelmed. I handled that by avoiding clinic, letting school takeover my priorities and negatively changing my relationship with my CF team. This resulted in some tough love from my Adult CF team and some long, life-changing conversations. It was a turning point and was the best thing that could have happened to me. I grew to trust and rely on my new team and they became like family. When you’re fighting CF, you need all of the support you can get. These CF docs help you understand that you are not fighting alone. Thank you, team!” – Stephanie Stavros

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