Kathryn’s Story

Kathryn's StoryI’m Kathryn, married to Rob with two daughters, Sarah and Rose. I used to be a primary teacher before my illness was diagnosed. My problems started many years ago after the birth of my girls, now aged 21 and 19, with fainting being my main symptom. Unfortunately, even after extensive tests, doctors were unable to find anything wrong with me.

Eventually, when I was 49 and my symptoms had got much worse, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension (or PH for short), which is an incurable and progressive rare disease that damages the lungs and strains and eventually damages the right side of the heart. Unfortunately my disease was classified as severe on diagnosis and my heart was failing.

I was quickly placed on a heavy regime of medication including a twenty-four seven, intravenous drug which was, and still is, administered through a Hickman Line in my chest straight into my heart and lungs. I reacted badly to this intravenous drug initially and my condition was deteriorating when I was referred to the transplant team at Papworth Hospital where I was already being treated for my PH. The outcome of my transplant assessment was that I needed a heart and double lung transplant and I was accepted on the transplant list in September 2011. In the meantime my condition has become more stable with further drug therapy.

I have now been receiving treatment for my Pulmonary Hypertension for two and a half years and I have been on the transplant list for over twenty months. It was all a massive shock when I was diagnosed but gradually over time I have come to terms with my illness and have made many adjustments to my lifestyle so I can manage my health. I have given up my career as a teacher and put myself first for once and I am happy to use a wheelchair when I’m feeling tired to enable me to stay out and about longer.

While I have been waiting we have had a few ups and downs and more admissions to hospital along the way and I do suffer from a number of side effects from the drugs that can be debilitating. I easily get breathless and very tired, but I try not to let these things stop me from enjoying my newly adjusted life. Like everyone, I have bad days and good days, but my family and I try to make the best of each day as we know first hand just how precious life is and how unpredictable it can be.

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