Happy September! I inadvertently took a two week holiday since I was travelling the last two weekends. But I'm back now!
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.
THE WATSON SISTERS: IN THEIR OWN WORDS
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.
