Trevor has a very rare genetic condition called Alpha 1 antitrypsin deficiency with COPD, and had no symptoms of his condition until 40. When working as a dog handler at the airport he began having shortness of breath when climbing the baggage conveyors. When the shortness of breath wouldn’t go away a week later he eventually got referred to a renowned genealogist professor at the University of Birmingham.
Having been asked to gather his large extended family for the meeting all were told they carried the rare genetic condition Alpha 1 antitrypsin deficiency gene. The youngest of eight, Trevor and wife Amanda have seen several siblings die from the condition over recent years, the siblings reluctant to discuss their advancement of the disease with each other.
They now count themselves fortunate for two things, that their own children do not carry the gene on with them and that they got referred to St Wilfrid’s. Ferrying back and forward between St Richards and Southampton medical teams it wasn’t until St Wilfrid’s that they felt they were treated as a whole person not just the condition.
It was whilst Trevor was getting online physio at home that Amanda began to talk to James in the Family Services Team, until it got to a point he said quite calmly, 'Amanda it’s not you I think I need to talk to'.
Amanda remembers, “He was right. Shortly after talking to Trevor we came in and there was James with a knowing grin. St Wilfrid’s Hospice has done us both a world of good in just a few short days.”
Trevor agrees, “When they finally came on the first day it was like a hotel, nothing was too much trouble. The Doctor, nurses, Joe from Family Services talking to me about boxing (a shared personal interest) – they all took the time to talk to me like a human being again. Truly tremendous."
Amanda, “It was like I had been blinkered to what we were trying to do and what we thought the Hospice meant, but until you see it for yourself well, I felt a weight off my shoulders for the first time in a long time. We can really enjoy each other’s company as husband and wife again just talking about silly little things you know.”
Trevor, “I needed this place to get my head right. Got to get your head right. It’s the engine room. With the support of Helen in the Living Well Service I’ve being doing online physio sessions and can now use the local gym’s treadmill 1-2 times a week. Slowing it down of course to help with my breathlessness. I can’t walk and talk at the same time for instance. Breathlessness – it can be like running a marathon breathing through a straw whilst your mouth is completely covered. Thanks to the support of St Wilfrid’s however, I now feel more in control.”
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