Author Topic: Mum 89 diagnosed with amalyoidosis with heart involvement last week  (Read 376 times)

Wendy Yates

  • *
  • Posts: 3
  • Reason for joining: My mum has just been diagnosed
  • Diagnosed: 27/11/21
Hi there, I’m new to the forum. Thanks for accepting me. My elderly mum was diagnosed last week after suffering with oedema in her feet and legs and breathlessness for the last 6months or so. She is under a local consultant in Shropshire. Due to her age I don’t think she is going to be referred to Royal Free for further investigation or treatment. She is not keen to seek out detailed information herself on the condition or know the type. We as her family respect this but feel uncomfortable about being in the dark about how advanced the condition already is and what to expect in terms of development of more symptoms and the duration. She lives alone and is very independent and we are worried about how to support and care for as we all live serveral hours from her. We would like to gather more information on her condition and what to expect without her having to hear things she doesn’t want to. I’m wondering if there is a service for family members to discuss the condition and it’s likely trajectory. Many thanks

Miriam Vered

  • Administrator
  • *****
  • Posts: 558
Re: Mum 89 diagnosed with amalyoidosis with heart involvement last week
« Reply #1 on: November 02, 2021, 09:13:47 am »
Hi Wendy,
Welcome to the forum. I'm sorry to hear about your Mum's illness. You can ask her doctors to contact the NAC doctors at the Royal Free and consult with them regarding her case, and perhaps check whether it's possible to refer her for a telephone consultation if she doesn't feel able to attend the NAC.
If she agrees to you being present at the phone consultation, then you could ask the doctors your questions about the likely trajectory.

The NAC doctors' contact information is available here:
https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre
Information for referring physicians is available here:
https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians



For general information on amyloidosis, you can take a look at the NAC patient information site - https://www.amyloidosis.org.uk/

You haven't mentioned which type of amyloidosis your mother has, please bear in mind that the different types of amyloidosis are very different diseases, with different treatments and different courses, and outlook for different patients is very individual, so a lot of the information you may read about amyloidosis may not be relevant for her specific case.
« Last Edit: November 02, 2021, 09:20:13 am by Miriam Vered »

Wendy Yates

  • *
  • Posts: 3
  • Reason for joining: My mum has just been diagnosed
  • Diagnosed: 27/11/21
Re: Mum 89 diagnosed with amalyoidosis with heart involvement last week
« Reply #2 on: November 03, 2021, 11:22:26 am »
Many thanks for your reply.

I'm not really sure where to go with this. I've read the general information about amyloidosis on the website but can see as you say that without knowing which type she has, its hard to see what information  on likely outcomes and trajectory applies to her particular case. I guess our problem is that my mum does not really want to pursue further investigations at this point and is not herself wanting to look ahead. We, as her children have different needs for information. We understand fully our mum's desire not to know more and let the illness take its natural course as she is 89. However, we are anxious to plan for looking after her and have questions in particular does it make her more likely to have a stroke or heart attack or is slow heart failure more the likely outcome? We have a copy of her Eco-cardiogram report, equipped with this, is there anyone we could discuss her diagnosis with, with her not present? at least to get some information on maybe the most likely type of amyloidosis she is suffering from and hence the most likely pattern of development. Many thanks again for your help.

Miriam Vered

  • Administrator
  • *****
  • Posts: 558
Re: Mum 89 diagnosed with amalyoidosis with heart involvement last week
« Reply #3 on: November 08, 2021, 07:25:33 am »

I'm afraid that without knowing the type of amyloidosis it isn't really possible to give much information. In very general terms, slow heart failure is more likely than a stroke or heart attack, but sudden events such as abnormal heart rhythms may occur in cardiac amyloidosis. It isn't likely to be possible to identify the type of amyloidosis based just on the echocardiogram and you would need your mother's informed consent to discuss her medical details with doctors with her not present.
Sorry I can't be more helpful.


Wendy Yates

  • *
  • Posts: 3
  • Reason for joining: My mum has just been diagnosed
  • Diagnosed: 27/11/21
Re: Mum 89 diagnosed with amalyoidosis with heart involvement last week
« Reply #4 on: November 08, 2021, 08:05:57 am »
Many thanks. Knowing that in itself is useful. I’ll discuss your reply with other family members. Best wishes