Author Topic: How to eradicate despair  (Read 752 times)

Monica1

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  • Posts: 13
  • Reason for joining: Newly diagnosed, al amyloidosis, kidneys, liver, spleen, early heart, autonomic neuropathy
  • Diagnosed: 23/3/21
How to eradicate despair
« on: May 20, 2021, 01:39:56 pm »
I have been in kings college hospital,for a month and all they have done is prop up my kidney function with iv fluids. My visit to the amyloid centre on 11th May was depressing, amyloid in kidneys, spleen and liver plus heart. They are sending me home today to have all outstanding investigations as an outpatient. Long waits for cardiac mri and whole body mri. I have to say I am pretty disgusted. Told at centre 3.to 4 months left without treatment. I can’t wait t9 get,out if kings but even after all this time no treatment at all. I am going to the national newspapers tomorrow. Absolute despair that no treatment given.

Miriam Vered

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  • Posts: 560
Re: How to eradicate despair
« Reply #1 on: May 20, 2021, 02:14:54 pm »
Hi Monica,
I'm very sorry to hear what a bad time you have been going through.
I suggest contacting Darren Foard, Specialist Research Nurse at the NAC to see if he can help: darren.foard@nhs.net
If you send me a personal message with your full name I can also ask the NAC doctors about your case and check if they can help at all.

Monica1

  • *
  • Posts: 13
  • Reason for joining: Newly diagnosed, al amyloidosis, kidneys, liver, spleen, early heart, autonomic neuropathy
  • Diagnosed: 23/3/21
Re: How to eradicate despair
« Reply #2 on: May 30, 2021, 04:56:14 pm »
I am still in kings and treatment has still not started. Nothing happens at weekends and bank holidays. Today I read the clinic letter from the NAC and just cried.  There have been such major delays in treatment, now the third bank holiday where nothing happens.  My B.p is being propped up with midodrine and I am having horrible side effects from It. There is no one to talk to here. I wish I could talk to someo e who can offer me some hope.