[Stuart RobinsonParticipant]

Hello All,
I thought I’d start off a string.
I would just say I do have permission to discuss my dad’s illness.

I live in Devon, and was wondering if anyone else has an elderly parent suffering with the Wild Type of Amyloidosis?

Dad is a fiercely independent and extremely belligerent man who lives alone and refuses to accept an illness which is affecting his heart and lungs.
He also has Macular Degeneration which has left him extremely vulnerable, and will accept no outside help. He hardly likes me helping with the chores or allows me to do any shopping. (I’m very worried about his rapid weight loss).

It is an uphill struggle to get any support from local services here, including carers groups and the GP Surgery. Consultations at the local hospital have ended as there is nothing to be done, and dad has (rudely) refusd any further help from them.

This leaves me rudderless with no map to navigate a course forward.

As he refuses help and has point-blank refused to go into a home, instead preferring to make cryptic, obtuse comments about making it to his next birthday and then, ‘I’ll see how I am.” He ignores me if I ask him what he means.

He can walk as far as the local pharmacy (just) which has been selling him Bronchostop and Milk of Magnesia, 4 bottles at a time, although he has been told by the specialist Consultants it is a waste of money and dangerous.
These potions cause dehydration, confusion and suppresses his breathing, as well as diarrhoea contributing to further weightloss.
I have told the pharmacy not to sell this stuff to him, as it has been going on for a year, and pointed out (given his high blood pressure) how it could contribute towards a stroke.
Does anyone have any advice for dealing with this situation?
Together with dad, we have a GP phone appointment this week, for what, noone seems to know, despite my having full access to represent my dad with the GP.
If it is to discuss the email the pharmacy sent to the GP in an attempt to shift blame for selling these products, then I expect dad to become very angry with me. He has become dependent on this, but can’t say why he needs it! I’d still rather the GP be aware and get abuse than him keep taking it.
If we move his prescription to another pharmacy, he’ll go crazy, but at least he would have mo need to go to the one selling stuff which frankly is poisoning him.

How Do others deal with this peripheral stuff, particularly when the primary carer (me) has chronic health problems, although I am lucky that my wife is a Dispenser in another pharmacy.

It seems an almost impossible situation, especially as I have no siblings.
I don’t see it as my job to educate professionals about Amyloidosis. They should be actively engaging, rather than causing problems, or leaving it to my wife and I.

ANY suggestions, will be very gratefully received.

Best Wishes to all.
Stuart.

[Steve wellsParticipant]

Stuart don’t beat yourself up about this. It would seem you are doing all you can to support your dad, albeit he doesn’t seem to recognise it. It sounds as if he still has the capacity to speak up and make decisions for himself, some of which you may not agree with! But ultimately the old adage of “you can lead a horse to water, but you can’t make it drink” applies here. He ultimately is responsible for the decisions he makes and that is surely a right that all of us would want? I recognise it is difficult to watch a loved one take decisions that you feel are detrimental to their health, but just continue to give what support he will accept and accept that if particular advice is unwelcome self-determination makes it his right to live as he wishes.

Regards
Steve Wells 75 year old ATTR-CM (wild type) patient

[Stuart RobinsonParticipant]

Hi Steve.
Thanks so much for your reply.
I appreciate your perspective and wise words.
Yes, he will make his own decisions and that’s right that he does, but I do not want him to make poor ones which are detrimental to his health and truly put it at risk.
He’s decided that the NHS cannot fix him, so he needs to do it himself.
This seems to involve disrespecting medical opinion to their faces and those who try to reinforce that message.
My wife who works as a Pharmacy Dispenser spoke to her pharmacist who was “shocked” At the behaviour of the pharmacy which has taken £700 in a year in unnecessary business from my dad. I guess he’s free to throw money away on potions which are detrimental to his health though.
I really do respect his right to be independent, but independence is maintained through having a robust support network.
Today he jeopardised that, and so I’m standing back for awhile. His short term memory (together with his eyesight has gone) and his breathing becomes worse day by day, now.
So, I offered to sit in on a GP call. He told me to “F Off” and the next time he wants to see me is at his funeral.

So, I took myself off to his GP and explained the need for a hiatus from all this. I’m in pretty poor health myself, and apart from my wife I am dad’s only support.
His surgery were extremely understanding and told me that sometimes it’s best to extricate yourself from it.
I love my dad and am extremely conflicted, as I’m sure you can imagine.
It leaves dad vulnerable and I fear he’ll collapse again, and this time he’ll end up in a Care Home. (Mention “Care Home” and he soars higher than an Elon Musk rocket to Mars!!!)
On his head be it, I guess. Perhaps it’s for the best.

May I wish you the very best on your journey with your condition.
Leverage as much support and professional opinion as you can, where you can.

My dad’s opinions towards the NHS are unfounded in my opinion, and I hope you might obtain support from the London suppory centre (which dad refused to go and see). I hear good things!

Best Wishes, Stuart.

[Jonathan BaggsParticipant]

Hi trying to put a post on here but can’t find how to do it so I will posy here, sorry.

My wife Anna had her appointemnt at NACs come through today. There is a problem and they can’t do a SAP Scan but they will do a DPD. Anna has Lymphomaplamcytic Lymphoma IgG with Kappa Free Light Chains. She has had a blood test for ATTR and as suspected it is negative. I understand a DPD is only any good for ATTR? is this correct? She would be better having a Cardiac MRI with Gadoloium and maybe at the same time they could do her Thoracic spine looking at nerve roots, this was suggested at UCLH but never done with Gadolinium. Does anyone know are they short of Serum amyloid P, they say they can’t do it until October. They could also look at the increasing liver cysts, now 5, 2 in April last year and one in 2023.

We are at a loss, they have not been given all the information, I did send them some including the private protein urea test showing high levels and high fluid intake. Anna was told they can only do what is on the referral, This has happened before, Anna is also waiting for some biopsy results Prof Gilmore got some bitch samples from her Hospital to hopefully reexamine.

Any ideas what we do, how can I post this.

Thanks

Jon and Anna

[Author]

Posts