A mother's perspective- Living with Cystic Fibrosis and Diabetes..
As if living with Cystic Fibrosis wasn't enough, when Gabby received the shock news that she also has diabetes...
WRITTEN BY- LEANN TREMuL
Our whole world fell apart 14 years ago when our 3rd child, our gorgeous daughter Gabby was diagnosed at just 4 weeks of age with Cystic Fibrosis. The future was and still is a terrifying prospect for our whole family.
Leann and Gabby at there recent trip to Royal Children's Hospital.
The very next day we embarked on a steep learning curve on how to best treat and manage her condition. Gabby takes 12 tablets for breakfast and another 40 throughout the day. She has chest physio every day and uses a nebuliser once, sometimes several times a day. We travel for over an hour and a half to the Royal Children's Hospital for clinic visits every 12 weeks (or much more if she's unwell.) Every time she gets a cold we worry and start her on antibiotics as she is at high risk of having a chest infection which could mean 2 weeks in hospital on IV antibiotics. Every birthday she has an annual review consisting of Blood tests, lung function tests, chest x-rays, Ct scans, ultrasounds to check for Liver disease, a bone densitometry to check for osteoporosis and a Glucose tolerance test to check for Cystic Fibrosis Related Diabetes.
Sadly, last year on her 13th birthday, we were absolutely devastated to get the news that Gabby now had Diabetes (CFRD ) and they had booked a bed at the RCH for her diabetes education. Gabby took this news really hard, the unfairness of this new diagnosis left her sobbing in my arms. It was absolutely heartbreaking for us all.
CFRD is different to Type 1 and type 2. It is caused by scarring in the pancreas due to long term inflammation caused by thick mucous blocking the ducts. It is irreversible. It is also expected to increase the severity of her Cystic Fibrosis.
Gabby visiting the shopping centre at Christmas time..
At this in point in time Gabby still has some residual insulin production so is on one injection of Lantus a day. She finger pricks 4 times a day before meals and before bed. It is further complicated by having to sustain a Cystic Fibrosis diet of high fat and salt. She needs one and a half times as many calories as her peers.
Eventually the amount of residual insulin production is expected to decrease, and she will need an insulin pump.
CFRD has increased an already relentless treatment regime for Gabby. As she has CFRD and not Type 1 she is not eligible for the funding of all Diabetes equipment and we are grateful to the Type 1 Foundation for their support and providing Gabby with a Freestyle Libre which has at least given her some relief from finger pricking for weeks at a time.
Something many don't realise about people living with CF, is that they cannot socialise with each other, as they are at risk of cross infection. This is the cruel reality of this disease and many people living with CF have not had that much needed connection and support of others who understand.
As with most kids with Cystic Fibrosis, after the initial shock, Gabby has displayed resilience and has just got on with it – it is just another amazing part of who she is and life goes on as we manage her chronic condition day to day.
We are so proud of her....
AUTHOR-Leann Tremul
Leann is an inspirational mother of 4 children living in Geelong. Leann is the Founder and President of Cystic Fibrosis Geelong Inc. She has worked tirelessly and campaigned for awareness of Cystic Fibrosis and raised funds for a cure since Gabby was diagnosed. Leann works behind the scenes to create a better future for all those living with CF.
On May 21st 2018 Leann will host over 400 guests to the annual Cystic Fibrosis Dinner at the Pier Geelong to raise much needed funds to find a cure for CF.
To book tickets follow the link.. Trybooking.com/346066
