The Gaucher medication is administered by infusion, so 15 years ago I had a Port-a-Cath surgically inserted under the skin in my chest; a one way valve for patients receiving frequent infusions. At the time, the optimum dosage of enzyme replacement therapy for Gaucher patients was given once a week, and to save the veins, a Port-a-Cath was recommended. To enable "home treatment" my husband was taught in the hospital how to insert the special needle into a 2 mm diameter circle of silicon, by merely feeling with his forefinger and thumb. This required not only guts to stick a needle into me, but great dexterity, for 2 mm is a pretty small area. A fair amount of pressure is required to puncture the skin and the silicon, until the needle touches the back of the titanium vessel. A 25 cm long tube is attached from this vessel, winding around the collar bone and down to one of the main arteries leading to the heart, which ensures the medication is pumped efficiently and quickly throughout the system. The Port-a-Cath was implanted under full anaesthetic, but 15 years later when it had come to the end of it's "shelf life", it was removed in the Day Clinic under local anaesthetic. My husband, who is not in the least bit squeamish wanted to watch the procedure, but the doctor refused and made him stand behind a curtain, whist the surgeon and nurse struggled to extricate this device which had embedded itself into my chest muscles over the years. After quite a struggle, the Port-a-Cath was dislodged and removed. My husband had stood for 40 minutes behind the curtain, watching the entire procedure in the reflection of a shiny cabinet that was positioned just right! My husband doesn't miss a thing! Today I have an infusion for Gaucher once every two weeks and a nurse is sent to our house to insert a regular i.v. needle into my arm.
I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.