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My Mum is very very ill.
She has a multitude of rare and progressive illnesses.
She has been through so much and I know we have a bumpy road ahead with her recent diagnosis of Wegener's Granulomatosis.
I'm reaching out to see if Globally anyone else shares the same multitude of conditions and can be an ear to listen and a voice to advise.
Here is the story (the short version)
Life has become a fierce storm again and it's a scary time for me and the family.
Mum was diagnosed in 2009/2010 with Acromegaly which she had , had for 10-15 years which had gone undiagnosed. After a frustrating and upsetting 11 months + of waiting for an operation (way over the WAG guidelines for waiting times with UHW) Fighting NHS Wales with over 17 cases of negligence Mum had the pituiatry brain tumour removed. This was 2 weeks before we lost my father to advanced prostate cancer. Mum was his main carer at this time despite being incredibly ill and with little support outside of family. 24 cases of negligence on Dads.
Then mum went downhill again. We couldn't get anywhere with the NHS 7 consultants not communicating or listening left Mum unable to hold her grand kids or dress herself. We pad privately and she was then diagnosed within less than 20 minutes with Parkinsons.
After a timeframe I can't recall she then got diagnosed with osteoarthritis.
Which exasperated her conditions.
The diabetes came via the acromegaly and after the pituatry tumour was removed was under control and nearly negligable.
Just before Christmas 2016 Mum had a bought of flu like symptoms after 5 sets of antibiotics didn't shift it. GPs wee terribly rude AGAIN one minute making my Mum feel like a hypochondriac then telling her not to go to her drs as her conditions are too complex.
Mum then finally saw a good doctor who rushed Mum into UHW for scans. They found a shadow on her lung and told her it was expected lung cancer. My Mum who has never smoked and hates smoking was distraught. They even gave her a by title "lung cancer nurse!!!" who rang and asked my mum whether she was having chemo or radiotherapy to try and treat the lung cancer (THERE ARE NO WORDS)
After Pet scans and a multitude of scans, tests and lots of hospital appointments. She was then given an appointment in Llandough Hospital where we were told it isn't cancer, it isn't lung cancer it's a rare condition called Wegners.
Then.... given a course of prednisone now down to 30mg ontop of all her other meds which has left Mum with mania, insomnia , irrational behaviour and huge upset.
This is where we currently are at.
We get blood test results on the what would have been my Dads birthday next week, then she starts IV treatment 3 days after on her birthday a course of cyclophosphamide (CyP).
She has been through so so much.
We are all supporting her fully.
However I and everyone is very scared of the bumpy road ahead.
Our experience of NHS Wales is less than positive with over 32 complaint emails I have sent to date. Which would appaul most people with the treatment my parents have received.
My Mum will not sue, neither will she go private. She said that her and Dad worked hard all their lives and deserve NHS support. She also said she's been through so much that she could not face another battle. Neither would she ever want to take anything away from the NHS when so many patients need it.
I apologise for venting. Sometimes you start typing and the words flow too quickly. My main priority , my only priority is making Mum better and looking after her now Dad isn't here.
If anyone knows of anyone in the world with all these conditions or can help.
I would be eternally grateful for any advice, support or outreach.
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