“My name is Leigh and I’m an advocate for Cystic Fibrosis Ireland. Cystic Fibrosis is a genetic disorder that mostly affects the lung, pancreas, and digestive system. The body of a person with CF produces thick sticky mucus that clogs the lungs and causes major infections and obstructs the pancreas.
I was only 8 weeks old when my mother knew something was not right. I wasn’t putting weight on (7 pounds, 2 ounces), countless nappy changes, and double pneumonia. Doctors assumed my poor mother was underfeeding me or I had a dairy intolerance. For a first-time mother, it was an extremely emotional and scary time. Several tests later, e.g sweat test, I was officially diagnosed with DDelta F508, a common gene of a Cystic Fibrosis patient.
Soon after my diagnosis on the right medication, my weight went up drastically to 9 pounds, 2 ounces.
Between the ages of 5 and 7 years old, when hospital admissions became more regular, chest infections, lung collapse, and not gaining weight were common occurrences. Gaining weight was a huge struggle for me, even though I was a great grubber. I just needed that bit of extra help. The team decided it was time to insert a peg tube in my tummy to inject extra calories and a food supplement at night time. As the years went on, my poor veins were not holding up with the IV antibiotics. It was time to get a portacath insertion for easier access. This procedure made things a lot easier than having to prick my tiny veins all the time. Believe me, this was a great thing.
Fast forward to my teenage years. Hospital admissions became very regular every 4 to 6 weeks. My stay would last approx 2 to 3 weeks or if I was strong enough to go home I could continue my treatment of IV antibiotics and extra physio in the comfort of my own home. Every hospital admission, I always brought my own pillow and blankets to make it a little more cozy and homely. It’s a very lonely time being sick constantly. Being kept in an isolation room for weeks with many thoughts running through my head was both mentally and physically draining. However, I always tried to keep myself busy during these long days in the hospital by reading, sketching, doing school work, and getting creative with makeup. With this disease, my immune system was getting weaker so I had to keep visitors to a minimum to avoid any other infections coming my way. My little bubble of my two friends, my boyfriend, and my family was sometimes my only connection to the outside world.
At the ages of 16 to 19, my health really started to deteriorate. I became oxygen dependent 24 hours a day, I was diagnosed with CF-related Diabetes. Countless hours a day were taken up by completing airway clearance to get rid of the sticky mucus, Nebulizers, checking my sugars, and exercise all became a great struggle. My health was deteriorating rapidly so the talk of lung transplant was mentioned at one of my hospital admissions. I was so tired, tired of being sick, and tired of doing the little things like taking a shower and being breathless all the time. Coughing up blood was one of the scariest things. My lungs were so irritated and sick. People staring at the sick girl carrying the oxygen tank on her back. I was fed up, I had enough!
The decision about transplant was very straightforward. I needed one soon. There were a lot of tests and investigations to see if I was eligible for a transplant. Extremely worrying time for myself and my family. The fight was getting harder. In the summer of 2015, I was officially registered on the active waiting list for a double lung transplant. I was so excited and nervous, I just couldn’t wait to start my next adventure. Now, all we had to do was wait….
October 2015, on a dull Saturday morning sitting with my BIPAP mask on (a breathing machine to give my lungs a little break from working overtime) and watching ‘Keeping up with the Kardashians,’ that life-changing phone call came. It was such a rush. My emotions were like a rollercoaster. When I accepted their offer, it was all go-go-go. An ambulance was sent shortly after. I live about 40 minutes away from the hospital but it took exactly 20 minutes in an ambulance. Crazy! After a few tests to make sure everything was absolutely perfect, the following morning, I received the wonder gift of life. Two bright pink new lungs. My life has changed completely. No more oxygen tanks to be carried, a huge weight lifted off my shoulders (excuse the pun), fewer hospital admissions, and breathing easy. Life is truly amazing!
My surgery was a groundbreaking surgery, A new type of lung transplant, a first for Ireland. My amazing Cardiothoracic surgeon, Professor Karen Redmond, has international expertise in Ex Vivo lung Perfusion (EVLP). This procedure makes donor lungs previously classed as unsuitable, safe for organ transplantation. My right donor lung was reconditioned outside of my body before transplant to improve the quality of the organs.
Recovery after surgery was very tough but wonderful too. There were many struggles I did not expect to face during my recovery, like, learning how to breathe, eat and walk again. 3 days after transplant, with the help of my mother and sister, I took my first steps around the ICU unit. It was such a thrill! Exercise is the best recovery. My recovery time in the hospital was just 2 weeks.
For the first 2 to 3 months, appointments with the team were quite regular, every week to every 2 weeks just to touch base and make sure everything is going smoothly. Having several blood tests to make sure no infections are setting in and the right dose of immunosuppressants are doing their job correctly. After a while appointments became less frequent. Now I am seeing the team every 4 to 6 months with regular CT, X-Ray, and blood tests to keep on top of everything.
In February, after the groundbreaking surgery the newspapers, radio stations, and conferences wanted to get coverage about this amazing new type of transplant. This was a very scary and nervy experience. I would have never been in the public eye before. However, I got to tell my story and spread awareness in both Cystic Fibrosis and Organ Donation. In the months of March and April, it was National Cystic Fibrosis and Organ Donation Months. So it worked out very well all this came at the appropriate time for spreading awareness and hope to others in the position I was in not too long ago.
Shortly after the craziness of interviews, I was invited to meet the President of Ireland, Mr. Micheal D Higgins, at Aras an Uachtarain. It was such an honor to meet him along with my companion, my mother, and some other organ transplant patients, the Organ donation team, and coordinators. It was a very special day, one to remember for sure.
Just 6 months post-transplant, I walked/ran the annual Remembrance 10KM Walk/Run in aid of those who have passed away due to Cystic Fibrosis. It was very overwhelming to be part of this wonderful event. Not only after surgery but to celebrate those fighters who lost their battle with CF. In previous years, I had to stand on the sidelines and cheer everyone on. It was so amazing to have the energy to take part and spread awareness.
Walking alongside my friends and family it was a triumphant feeling to be able to contribute. The event is always well thought out. Warm-up directed by professional personal trainers, water, and sugar stations every couple of kilometers, BBQ and refreshments after the run/walk, massage tables, and music. When the sun is shining, it adds to a great occasion. A local family who lost their daughter and niece both to CF started this event many years ago and have kept it going. They are very close to my heart, along with the community contributing too. It’s a great day, with great people.
I am now a fully certified makeup artist. I have a high passion for makeup, I love to make someone feel beautiful in their own skin. I am currently studying Pharmaceutical Science and Tech. I cannot wait to see where this takes me. Being cared for by my wonderful mother for so many years, I am delighted to soon be independently moving out and living with my partner, Craig. I can’t wait to begin this other chapter in my rollercoaster journey. I cannot thank my donor family enough for this new life. They are always in my thoughts and prayers.
My name is Leigh and this is my story. ‘A true warrior isn’t immune to fear. She fights in spite of it.'”
This story was submitted to Love What Matters by Leigh Bagnall McDonagh. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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