Amy and I wrote an article for the CF Canada magazine for their Summer/Fall 2018 issue. The magazine is aimed at people in the CF community, either people with CF or family members of someone with CF. IWe basically just talked about our lives and what it was like growing up with CF. We tried to stress our independence and how we were raised to live in the moment as much as possible. The writing is a bit weird with us going back and forth between third and first person but I guess that's what happens when there are two people writing an article.
Here is the link to read it, if you want the version with pictures. Or I posted the text below.
https://www.cysticfibrosis.ca/news/publications Go to "Cystic Fibrosis Connections" then "Summer/Fall 2018" and we're on page 12-13.
 |
We were both born and raised in Petitcodiac, NB. Amy is 36 and Allison is 31. We have a younger sibling, David, 29, who does not have CF.
Our family never knew anything about CF until Amy was born. She was diagnosed at birth due to meconiun ileus and had to be rushed to the IWK hospital in Halifax to be operated on. Our parents then received a crash course in aerosols, physiotherapy, and digestive enzymes. Allison was born four years later and our parents went through the entire experience again.
Allison struggled with her weight from day one, and as a result spent much of her first four years in the hospital. She had a feeding tube inserted at 14 months to help with weight gain which was removed (finally!) when she was six and had stopped throwing up everything she ate. She was a feeding tube success story.
Our family did not let CF be the dominating factor in our lives. We had a very active childhood, with camping trips, hikes, and participating in sports. We all went on road trips, including across Canada in a minivan, for a month. Of course we still had our daily CF routine of aerosol masks twice a day, chest percussions, and leaving a trail of enzymes behind us everywhere we went.
We had a few hospitalizations as teenagers but overall were quite healthy and were able to do the things we enjoyed. Our parents always encouraged us to have autonomy over our own health. As such, we were confident going with our friends to sleepovers, overnight school trips, and summer camps. This independence helped when we went to university and were able to advocate for our health.
Mom and dad never hid the fact that we have CF and its implications for the future. As a result of this education, we have always been active participants in our own disease management. This has enabled us to have active and fulfilling lives without letting our disability become a barrier.
We have been able to fulfill our love of travelling to places such as Europe, Egypt, New Zealand and many more. Allison and David were able to cycle across Canada in 2008 as an awareness campaign and fundraiser for CF Canada.
Our family has been active in the local CF Chapter. We have fundraised for the Walk to Make CF History since the Moonwalk days and have talked at various Shinerama and other fundraising events. Dad has been actively promoting awareness of CF since we were born. He did annual talks during elementary school to explain the disease to our classmates which helped them know why we were taking pills and coughing all the time. He was honoured to receive the Breath of Life award at the latest CF Canada Volunteer Leadership Forum.
Once we reached adulthood, the effects of CF had a detrimental impact on our lives. Allison was hospitalized many times for lung infections and had to stop working as a recreational therapist due to health. With her boyfriend, Isaiah, she moved to Toronto where she could be listed for a lung transplant in 2013. During her time in Toronto, Allison felt the need to connect with people in the CF community who had also been through the transplant process.
Neither Allison or Amy were very active in the online CF community because growing up as siblings with CF meant that we always had someone around with a shared lived experience to talk to whenever we need support. We were able to commiserate with each other about hospitalizations, lung failure, and other ordeals.
Throughout Allison’s transplant process, we both have made online CF friends within the community. Allison received a life-saving double lung transplant in the fall of 2014. The recovery from the transplant was the most intense thing she’s ever gone through in her life. It was challenging but worth the effort in the end.
As a side-effect of the transplant, she has CF-related diabetes and was diagnosed with post-transplant lymphoproliferative disorder in 2015. After intensive chemotherapy, she is now two years cancer free and is again physically able to do the things she enjoys.
Amy was a NNICU nurse for over 10 years but has recently had to stop working due to declining health. She hopes to eventually receive a lung transplant but is currently unable to be listed due to the shortage of organ donors. She is working hard to remain stable by being as active as possible and always pushing at the edge of her physical limitations.
During our lifetime, we have seen a dramatic improvement in the quality and care for people living with CF. Having specialized CF clinics with a multi-disciplined team, improvements in medication, and the possibility of a transplant at the end of life have all been beneficial to our lives. This has all been possible through the work of CF Canada and their partners. We appreciate the work that CF Canada and their many volunteers have done in the past and continue to do to help enrich the lives of Canadians with CF.
No comments:
Post a Comment