Aortic stenosis

[tillergirl]

My husband has severe aortic stenosis....he's 73 yrs old. Last May the consultant told me he probably had 2 to 3 years left or 'sudden death'. My husband also has dementia which was diagnosed 5 years ago .

Since Christmas he has started to sleep for very long periods ....going to bed at midnight and then not getting up until after 2pm...sometimes sleeping till early evening. He does wake up to go to the bathroom but then goes back to bed as he's 'tired' .

Has anyone else experienced this ? Who should I be talking to about it...our own doctor ( who can't even explain the consultants letters to us ! ) ...his heart consultant ? Is it normal to sleep that length of time with this condition ? Is it a sign of 'the end' ?

He doesn't really have another other symptoms...odd bouts of breathlessness but that's all. He only takes small amounts of aspirin and Sertraline as medication.

Any help would be very gratefully received as I don't really understand what's going on. Many thanks

[Nathan53]

Hello Tillergirl - firstly welcome to the forum it's a great place to find support and information. I think both of your husbands medical conditions can result in extreme tiredness and wanting to sleep a lot. If your husband has lived with dementia for 5 years I think this may be the major factor in him sleeping a lot. It's just a gut reaction from my experience of looking after my Mother who had dementia for 5 years. It's frustrating that you don't seem to get much support from your GP, I was so lucky in having a fantastic relationship with my Mum's GP who was always willing to discuss issues and this was invaluable to me. Is there another GP in the practice that you can express your concerns and fears to. I know you are not looking for a quick fix or false reassurance you just need to know what is likely to be happening and how best to respond. GPs have a responsibility to put together an end of life care plan if requested which takes account of the wishes of the patient for example whether they want to go into hospital in the event of deterioration or stay at home with support. This sort of plan can be drafted by the GP not only where it is thought a person may have only days to live but also where they may live for up to a year. The Alzheimer's Organisation have a helpline where you can talk over any issues as a Carer - you can call them on 0300 222 1122. You could also ask GP for referral to District Nurse as if your husband is spending such a long time in bed he may be at risk of developing pressure sores. District Nurses can also be way into many services and liasion with Gp's. They often have better listening skills than many Gps. During the last few weeks of Mums life I was in contact with Marie Curie Organisation. They were amazing you can call them on 0800 090 2309 they provide emotion support to you and can provide relief carers either paid for by yourself or Social Services / NHS if you qualify. I hope I haven't focussed too much on end of life care as this can only be assessed by a medical professional but I sense this is in your mind and I didn't want to avoid it. Look after yourself and if you have the time it would be great to know how you get on or if you want to say more don't hesitate to post again

[MichaelJH Heart Star]

Nothing much I can add to Nathan's reply. My late mother had severe Parkinson's and in her last few years slept 12 hours a night and another 4 - 5 in the afternoon. I suspect it is a defence mechanism to escape what life has become.

[SuziCutie]

That’s disconcerting about the calcium. I have jut been told I have aortic stenosis and am told I will need more tests. I have to take calcium supplements as I am on prednisone. Had osteoporosis few years ago and was sorted with aldronic acid.

[SuziCutie]

Thank you

[OttoK]

Hi,

I am 73 ands have severe aortic stenosis. I was told it was now essential to have replacement and am waiting now to have major heart surgery to have a new valve. I also get very tired and sleep a lot. Fatigue is a symptom, and breathlessness, and if you are symptomatic then you should have an operation. My feeling is that having an operation should not be dependent on having dementia. I could be wrong ... recovery may be harder. But if that is the doctors' view they should give the reason clearly. Maybe that's what the letters are saying.

Good luck,

Otto