Hi
This is my first post so please bear with me if I ramble, although I will try and keep to the facts
My father in law was diagnosed with wild type ATTR in May last year, following a visit to Royal Free, he was 83. He had been experiencing heart issues as well as having had carpal tunnel surgery the previous year.
Initially he seemed ok about it and was being treated just as you would be if you were in heart failure, which I believe it the standard approach. Water tablets and restricted fluid intake helped to relieve the build up on lungs and breathlessness. he was also offered the opportunity to apply to be part of a drugs trial which he declined based on his age and distance to Royal Free.
All seemed to be going okish and then from September last year its really gone downhill.
SEPT - DEC 2019
He began to imagine his house was infested with bugs because he thought he was being bitten, although his GP said it wasn't bites, it was some form of little blood blisters, possibly from scratching. I now understand that amyloidosis can affect the skin, has anyone else experienced similar?
He's also had problems with kidneys, sodium level which we think were probably due to the water tablets. He had a further minor heart attack and was supposed to be having a stent fitted at some point although that has not happened because of what has transpired since. Mentally he declined massively and although scans revealed he had had a minor bleed on the brain at some point, they weren't concerned about it. He became more and more disorientated mentally and we were getting calls at all times of the day and night both from him and his neighbours with a range of situations to deal with. His main issue was always the infestation and money, I won't go into a lot of detail about money, suffice to say that there is more than enough to cover any form of care he requires.
He became unable to make any form of rational decisions or thought process, even as to what food to buy at the supermarket. His behaviour became increasingly eratic and myself and his children tried to talk to him about support at home.
He probably spent 60% - 70% of this period in hospital.
JAN 2020 to present
In January he tried to kill himself by jumping out of an upstairs window, was sectioned and has been in St George's in Morpeth ever since. He is not responding to any of the antidepressant/anti anxiety medication at all and we were told a couple of weeks ago that they would be discharging him as there is nothing further they can do for his mental state.
He has had another cardiac episode in this period, problems with passing water ie he has had some accidents, he also has had diarrhoea for four weeks and has had dramatic weight loss over the last few months. The consultant there has sent him for some scans as they can't find any infections but we now understand that amyloidosis can also affect the gastro intestinal system too.
We've been trying desperately to get him into a care home as six months in a mental health hospital isn't pleasant for anyone, however the money issue (that doesn't exist) raises its head again and on Saturday, he tried to kill himself again and is back on 24-hour watch.
Its all really distressing and we don't really know where to turn, each department at local hospitals simply treat their bit ie heart, kidney, mind and don't seem to look at him as a whole, many of them simply dismiss amyloidosis as they don't know anything about it, we've even had doctors and nurses say that they've never heard of it.
I guess my question, as in the subject, is this normal? Can anyone relate? Has anyone had experience of amyloidosis starting in one organ and spreading?
Thanks for reading,
Clare
