NO MORE FIERY HOOPS – By Victoria Bartlett




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Life and Disorder – Living with Gastroparesis

And I know I promised myself, I would not go on about treatment but I can’t help myself, I have nowhere else to go. Last week I had a meeting with Dr I, MrD and a lady from the Queen Elizabeth Hospital complaints team. The outcome was they wanted me to see another Gastroparesis (GP) specialist in London, privately, I had originally thought about seeing him six months ago, but trusted (and I still do), I could get the treatment I needed in Birmingham. Perhaps I should had followed my instincts all those months ago.

Thursday afternoon finds, his Lordship (my husband) and me in a car on our way down to Hendon to see the Prof. It was very touch and go as to whether we would be able to keep the appointment. I have been terribly sick all week and thrown up my Nasal Gastric tube (NG) six times and I have to keep re-siting it myself and I am absolutely exhausted. His Lordship had a team meeting that day and had to arrange to leave early, not something I was happy with him doing, work is important. In the end we had to hire a driver and car, two changes on the train and tube were just out of the question for me, and driving the Northern circular with an already tired husband – no way. It cost us more money, the NHS is an expensive freebee!

The Prof was a revelation, he understands Gastroparesis, how it wrecks your life. He confirmed that the treatment plan proposed with the Gastric Pacemaker was the route to go, that I was a good candidate for it. The Prof also recommended I have a Jejunostomy feeding tube in my stomach, this is something I have been against, but I know how much it would help with my nutrition so I am prepared and ready for it. It has been a long wait but I think we got somewhere

Talking of long waits, I am still trying to see if I an entitled to the Department for Work and Pensions new benefit, Personal Independence Payment (PIP), which is replacing Disabled Living Allowance. I put a claim in November 2013, and finally got my CAPITA health assessment last month but heard nothing since. I was informed, by the assessor there should be a decision in three weeks. But DWP say they are waiting for CAPITA, who tell me they haven’t even had the report back from the assessor. An offer of my personal Flying Pigs to pick up the report is declined. So I am currently trying to train a pigeon….

Post London, the Prof’s letter has been sent through and I am going nowhere again except that now I can’t even tolerate the NG tube. Realistically I don’t know how much longer I can hold on, I have refused to go to A&E, event though his Lordship thinks I should be in hospital. But I can’t face more weeks of procrastination, the Prof has agreed the plan and we should be actioning it. I want and need the Jejunostomy now and then in 6-8 weeks when it is healed I would like Gastric Pacemaker. I am tired of jumping through fiery hoops.

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Update! Have just seen Mr D and he was very helpful and patient with me and has my best interest at heart. I still cannot get the Jejunostomy operation at The Queen Elizabeth Hospital, Birmimgham until 1 August. Even though I have health insurance, the surgeon is not happy fort this to be done a private setting due to complications I have. So although I understand there are people on the list before and we are in prime holiday time – and I do not begrudge anyone their holiday, I have witnessed how hard they all work. I wish that someone sometime would cut me a break. After the Jejunostomy there will be a 6-8 weeks for it to heal. But no because it’s me I will always have to wait and fight for things. So it’s more hanging around for me, throwing up a Nasal Gastronomy tube and waiting …..