A woman waiting on vital neurosurgery has said she she doesn't want to be an activist for her health, but she has to be.
Jac Sinnott - a mother of two from Waterford - is currently on a waiting list at Dublin's Beaumont Hospital, after been diagnosed with a condition last July.
Cavernous angioma is a cluster of abnormal blood vessels in the brain, which means blood doesn't travel in the correct way.
This is what is causing me all the hassle. The size of it still shocks me. Cavernous angioma indeed. Cavernoma. A cluster of malformed blood vessels. It. Is. Huge. pic.twitter.com/Q8LYUqUyYz
— Jac Sinnott (@JacSinnott) September 15, 2022
She told Lunchtime Live the pandemic has pushed things back.
"I had a few months of figuring out how they were going to treat it, and then I had another episode in November.
"I was hospitalised for 10 or 12 days...in my local hospital in Waterford.
"And during that time I was waiting to be transferred by ambulance to Beaumont - to potentially have surgery, but to definitely meet my consultant there.
"It was during COVID times and there was a huge outbreak in Beaumont, so I was waiting in the hospital for those 10 days just to be transferred.
"While there was COVID on the ward that I was in, so I signed myself out of the hospital - I discharged myself against medical advice - in order to just be at home and be safter.
"Since then, I've been told that I do need the surgery, but my consultant has said that he has patients who are on his list for up to two years.
"And I'm not classed as urgent, so I don't know what I'm looking at".
'No joining up the dots'
She said her condition has deteriorated in recent months.
"In March he said to me 'We are going to put you on the super-fast track and hopefully we'll see you back here in a couple of months'.
"I had a temporary loss of consciousness in July and I crashed my car, which resulted in me being in hospital again.
"I then had to go to my GP, who then wrote to my consultant to advise him of the loss of consciousness.
"There is no joining up the dots, or continuity - they don't talk to each other, apparently.
"It was then left to me to chase that and to let them know... he has now advised me that I shouldn't drive.
"Obviously I wasn't going to drive again after that - it was hugely traumatising and upsetting".
Jac said she's now waiting for a letter for another MRI.
"I rang radiology the other day, and they said that they hasn't even been ordered - even though my accident and loss of consciousness was almost two months ago now.
"I just feel like I've been forgotten about, and I'm in this for the long haul.
"I don't want to be an activist for my health, but I have to be it seems".
And she said the condition means she doesn't recognise herself anymore.
"I was fit, active, healthy, I have two young kids - they're almost nine and six.
"It feels really dehumanising, demoralising, disorientating to wake up and go 'This doesn't feel like my body'.
"I don't feel like I'm able to doing anything that I was able to do previous to this.
"I don't know this person that I am now - I was just processing that last July, when then I had another bleed in November".
