Painoflosingmyfeistysister
CONTINUED FROM PAGE 8: IN January 2016 my mum, myself, my boyfriend Daniel and Rhys Gg’s boyfriend were all stressed to the limit knowing just how unwell Gráinne was as she had picked up a bug and she needed to be admitted for treatment. We had so many arguments with her to try and coax her to call her medical team in St. Vincent’s for a room so that she could get well again.
February 15th 2016 little did we know, was the day that changed our lives forever. Grainne was admitted to hospital and we were relieved she was safe. But by Thursday February 18th my sister was unresponsive and the CF team advised mum to call me to come up to the hospital.
That day will forever be clear in my memory. When I heard how ill she was my first reaction was to say she was fine, she would make it, she just needed a couple of courses of IV ann tibiotics as usual. That drive up to the hospital in Dublin was almost a blur, I was trying to hide the fact that I was crying my eyes out in the back of the car. I arrived in Dublin and called my mum who had some good news. Gg had woken up and was giving out like she usually would saying she was ‘ starving’ and wanted her dinner. This was music to our ears, and we joked that she must have sensed her big sister was coming up from Sligo to get her butt into gear!
The time I spent in that hospital room for the next four days felt like four years. We didn’t sleep, we barely ate, we put every ounce of our time and energy into helping Gg fight this. She told me she was under no circumstances giving up. We argued, we cried, we hugged and we laughed. Each hour that passed was crucial.
Monday February 23rd came and Gg’s best friend Fr. John Carroll came to visit her all the way from Sligo. Nobody was allowed into Gráinne’s room except for my mum, Rhys, Dan- iel iel and I, the nurses and doc doctors but Fr. Carroll was alwaysalw the exception, especiallycia in Gg’s books! The change in her that eveningev was amazing, Fr. Ca Carroll’s healing hands completely calmed her downd and reassured her that she would be okay no matter what happened and that she was doing just fine improving bit by bit, her angels were by her side protecting her. After Fr. Carroll left us to go home to Sligo, the next few hours were the most traumatic and difficult of my life. It was 11pm and mum and I became extremely anxious by Gráinne’s condition. After some time unsuccessfully trying to comfort Gg, the specialised nurse made the professional decision to call the Doctor in. Our minds were chaotic - What was happening? We couldn’t understand what had changed. She had been improving a few hours ago. Her O2 levels had increased and CO2 decreased, surely that means she’s getting better? Why did the doctor have to be called in so late at night? “Someone please tell us what is going on?” we begged.
The staff then explained that “there is no more that we can do.” I was devastated, in complete shock and infuriated. I thought they were giving up on my sister. I told the doctor: “You do not know my sister, she can get through anything. She always has and I will make sure she will again this time!”.
The professor arrived on the ward. They started speaking almost a different language. End of life care? What is end of life care? What does that mean? Is my sister dying? I was told she needed to be made ‘ Comfortable.’
‘ Comfortable’, the word made me want to vomit. Is there honestly nothing else in this world that we can do? Have we done everything in our power? We were helpless beyond words. How could this be happening? Gráinne is only 21 years old?
There just simply are no words to explain the traumatic pain this time caused us all. However Gráinne would for the last time amaze us all. She pulled off her Bi- pap machine, which is a machine that forces oxygen into the lungs so that she could breathe, and asked us to not give up on the fight for Orkambi, Organ donation and better healthcare for CF because in her own words, she didn’t want anyone to have to “suffer like this”.
Since February 24th 2016 my family has joined all guns blazing with the CF community to have Orkambi, a breakthrough, life- changing medication that has the potential to change the lives of 500 plus Cystic Fibrosis patients in Ireland, approved. Ireland has the highest incidence of CF in the world, and we believe it is our country’s obligation to be leaders in this field.
In clinical trials Orkambi has been proven to; Increase lung function; Improve weight gain; Reduce hospitalisations by up to 40%; Decrease the need for lung transplants by 50%; Decrease long term lung damage by 42% and patients have no build up of intolerance to Orkambi Less time spent in hospital for CF sufferers could translate into real healthcare savings in the long term.
My sister stated on her Facebook page a month before she unexpectedly passed away that ‘ we are loosing too many good people because we don’t have time on our side!’ Thank you for taking the time to read my story with CF. Hopefully with more successful research and life- changing medications being approved by our government CF will one day stand for Cure Found.