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Today I took a trip back to where it all started. Booth Hall Children's Hospital, high dependency unit (HDU). I went back to see one of the members of staff I've kept in touch with. It was a bit surreal going back. I haven't been onto the unit for about 4yrs. As soon as I turned age 16 and left school I was transferred to adult care. The transition was not an easy one. But at the time my diagnosis was an adult lung disease, I was wrongly diagnosed with Idiopathic Pulmonary Fibrosis which usually affects adults age 50+ and has a very poor outcome. So I moved to an adult hospital not far from Booth Hall and never really went back again. Then recently a couple of the HDU staff added me on facebook and we have been in contact ever since. Being on that unit changed my life forever, whether I liked it or not. Going back today was strange, nothing about the unit has changed, and even the monitor alarms sounded the same. The staff member I went back to see today had been keeping up with my story somewhat but I could tell although he was pleased to see me (I got numerous hugs!) it was as difficult for him as it was for me. I was on the unit for a good 3mths when I was there, he went through the ups and the downs with me and eventually after a horrific open lung biopsy the diagnosis of lung disease with a bleak outlook (although the exact diagnosis was not right I do have another form of ILD and it also has an equally poor outlook). Alot of staff in a situation like that would distance themselves, its something I've found with adult medicine, staff are very reluctant to get emotionally involved (maybe something to do with the fact most of the time the nurses for one run around like headless chickens or at least make themselves look busy…). Children's medicine is nothing like that or at least the staff on that unit weren't. I don't know if the way children are looked after on that unit is unique to that place or it is just the way things are in children's medicine. That HDU because it is a sister hospital to the main hospital, Pendlebury Children's hospital, makes it often quiet, especially in the summertime. Today there were 2 patients, 1 very unwell; the member of staff I went to see was pretty much tied up with that patient so I didn't stay long. But going back to the beginning was, I don't know how to describe it, I had mixed feelings. In a way it was great to look back and see what I've been through and lived through since then, in another way it was sad to think not much had changed and I have infact deteriorated further. But I'm glad I did go back and it was good to see that member of staff and the unit and I will probably go back again.
1 comment:
Hi Rachy
Just wanted to let you know still thinking of you everyday and to wish you Happy Christmas. Despite everything I hope that you and your family have a peaceful and memorable time together.
Much love
Lynne and Kiri xx
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