Breathe in, breathe out, repeat….sounds so simple, so easy doesn’t it? Unfortunately not for those with breathing problems such as Asthma, COPD and Cystic Fibrosis. We often take ‘life’ for granted and although I’ve always known that my husband has Cystic Fibrosis, the severity of his condition didn’t become a reality until the 5th May 2012 ~ the day that changed our lives forever. From when I first met him in 2009 until May of 2012, he had kept fairly well and at times it was easy to push his illness to the back of my mind. However, that all changed on our return journey home from Florida when a sputum plug burst in his lung, leaving him gasping for breath, turning a dusky blue colour and sending his body soaring into septic shock!
He was soon taken into hospital where he began receiving two different types of intravenous antibiotics directly into his bloodstream to try and fight the infection and widespread pneumonia. He was barely conscious, confused and on oxygen 24 hours a day. It was heartbreaking to see someone I love so dearly fighting for every single breath. It was all so sudden and I was absolutely terrified. He began receiving intensive chest physiotherapy four times a day with the physiotherapist literally shaking his rib cage in order to get the sputum to vibrate and dislodge. It turns out that he doesn’t remember any of this.
I always kept hope, but when the Consultant told me and his parents that my wonderful husband was not responding to treatment and that things would need to drastically change for him to make it home, it was the worst moment of all. I just couldn’t believe it; those two words, ‘not responding’ were my worst nightmare coming true. The doctors decided in a last ditch attempt to start him on a third intravenous drug in the hope it would work in combination with the other two and start to make a change in his condition, but when I was also told to prepare for the worst, I knew that they were not too confident that he would pull through.
‘Died’, ‘widow’, ‘ funeral’ – words that were spinning around in my head threatening me, confusing me, taunting me! The thought of becoming a widow at just 28 and the fact that I didn’t know what he wanted in the way of a funeral made me feel even more distraught. I couldn’t face thinking about any of it. I could only hope and wait for a miracle to happen. We were both so scared. It was the first time I had ever seen fear like that in his eyes. He wept as he looked at himself in the mirror, terrified at the stranger staring back at him.
Quite remarkably, after what seemed like an infinite amount of time, that third drug seemed to be the wonder drug and we started to see improvements… good improvements. Eventually after almost a month, they mentioned that glorious word: HOME! His care was no longer geared towards saving his life, but towards getting his lungs strong enough to make it home.
He left hospital at the beginning of June, but knew that he had a long road of recovery ahead of him. He weighed just 52kg with a BMI of 17 and had a lung function of only 23%. He began a gruelling rehabilitation of physiotherapy, medication and exercise to try to rebuild his strength and lung function and slowly, but surely, improvements were made. I helped as much as I could but the hard work could only come from him.
Watching him rebuild his life was what inspired me to start fund raising. I needed to do something to help raise awareness and funds for this heart-breaking condition. I found that this really helped me too, as talking about what had happened and how people with Cystic Fibrosis fight and struggle every day for every breath meant that I felt I was doing something for not only my husband, but the thousands of other people who suffer from this debilitating condition. Despite the events in 2012 and all the heartache he has endured in his life, he is the most positive person I have ever met ~ an absolute inspiration, not just to me but to everyone around him. My husband is truly amazing!
We were warned that although he was able to get home, this may well be the beginning of the slippery slope of Cystic Fibrosis. He would have to go onto regular intravenous antibiotics to treat the inevitable chest infections that were going to cripple him, damage his lungs even further and eventually lead to him being assessed for a double lung transplant. It would probably take him years to put the weight back on that he had lost so quickly and would be lucky if he got his lung function up by another few percent. He was home, alive and breathing but the future looked bleak…..that was until he decided to show CF who was boss!
It has been just over two years since he was discharged from hospital…
Chest infections since discharge…NIL
Course of intravenous antibiotics…NIL
Admissions to hospital…NIL
Weight…72kg ~ an increase of 20kg within 6 months of discharge!!!
Lung function…46% ~ an increase of 22% since discharge!!!
I will say it again…my Husband is truly amazing! xxxxx