I've never posted on a website before, but my beloved Mum is really very poorly and I'm hoping that one of you lovely people might be able to shed some light on things for me...
Mum was diagnosed with COPD 15 years ago, but despite going to her GP numerous times about her swollen legs and blackberry-coloured hands over the years was never referred to a consultant, instead being told that "circulation deteriorates as one ages".
At Christmas she suffered a bad chest infection, and a different duty GP took one look at her purple appearance (yep, badly hypoxic) and referred her urgently. Since then we have seen the consultant a couple of times, and fortunately she is wonderful, but it seems it is too late to do anything for my darling Mum. We've been told it's all about quality of life now and palliative care, which is so desperately sad.
Mum has emphysema and is in hospital (2 weeks and counting). Initially she was admitted as her blood sats have been dropping at an alarming rate, meaning that her O2 requirements have increased from 4 litres/min through nasal specs when needed at Christmas, to 9 litres/min on a +40% mask 24hours a day. Whilst in hospital, Mum has been on Opti-flow heated oxygen and on a bi-pap ventilator overnight. Both of which have made her very comfortable.
When she was admitted a fortnight ago, we were told that referrals had been sent to The Brompton, to see if she is suitable candidate off one of their newer surgeries. Sadly the disease is too widespread, and there is not sufficient healthy lung, so it is a "no" from them.
She was also referred to the Lane Fox Unit to be assessed and be fitted with a NIPPV machine to be used overnight at home. She has also now been rejected for this, as her low CO2 levels mean she is not a suitable candidate. This is a real blow, as the nightly ventilation was really helping her during the days.
As a result of these rejections, one of the consultants at the hospital has taken her off the bi-pap at nights, and removed the Opti-flow oxygen in favour of the regular humidified oxygen. I understand that they are getting her ready to be discharged (nothing more can be done) and as neither of these are available for home use she cannot be given them anymore.
The thing is, both machines were really helping! She is far more breathless since the bi-pap was taken away, and is constantly weary now. Plus the 'normal' oxygen she's on is causing inflammation, sharp 'crusting' and swelling inside her nose which is very very painful. Does anyone know if the Opti-flow and/or bi-pap machines can be made available in the home, or even within a hospice?
She is currently waiting for an inpatient referral to Hammersmith for investigations into the disproportionately high pressure in the right chamber if her heart (80-90mm mercury, for those for whom that means anything...) with her lung function being at less than 14%, is there any point her being taken up to London? I am worried that she'll never make it home (and if so that is no quality of life), nobody has ever given us an idea of how long she has left to live. Are the doctors ever able to give you a steer?
What can I do? I know she probably doesn't have very long, and I want to do anything I can for her. We are planning for her to move in with me, so that I can care for her and give her a little normality. She cannot see the sky from her hospital bed, and longs to feel the sun on her face.
I love her beyond words, as do my husband and 3 young children. I just want to make her happy for as long as we are together.
Apologies this is so long.