My lovely Mum (Opti-flow and Bi-pap help pls)

[wilko74]

Hi All,

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.

Xx

[jimmyg23]

I am very sorry to hear about your mum but I don't know too much about her condition but I hope someone comes along in this forum who will try and give you some very helpful information sorry I could not be more helpful hope your mum gets the best treatment she deserves

[wilko74 in reply to jimmyg23]

Thank you. Xx

[Hidden]

Hi I am so sorry about your mum. If her lung function is only 14% and there is nothing more they can do for her, then she should be offered palliative care. This is usually sorted out by her doctor so make sure to ask about it. A team consisting of a doctor, nurse, consultant etc. would concentrate on making her as comfortable as possible and it is very much patient centered. x

[wilko74 in reply to Hidden]

Thank you, at the moment I feel rather lost at sea! Really appreciate your message. X

[Schatz123]

Wilko74,

As a mum I can only say that she would be very proud of you for trying to do the best for her, it must be so difficult for you right now.

I have major lung problems now and am having chemo to try and stop the progression of the disease, I have a daughter like you who wants to do the best for me and appreciate the effort you are going to to help your mum, I wish you the strength to deal with what ever happens.

[wilko74 in reply to Schatz123]

Thank you for your kind words. I wish you well, and sincerely hope that your gruelling treatment keeps your symptoms at bay. Xx

[Schatz123 in reply to wilko74]

Wilko74,

Thank you so much for your reply, really in your position it is over and above what is expected of anyone.

Please keep us updated as to how things go and rest assured that people are routing for you and are praying that your mum will be OK.

[scorpiolass]

So sorry to hear about your mum, Wilko. I would ask about palliative care, i lost my own mum last year. The team put in a hospital bed, oxygen concentrator and pain control. She hadround the clock vists, supported by St Barnabas, district nurses, home suport, gp,s. She wanted to die at home and her quality of life , considering her illness, wasok. Love to you and your mum, Margaret x

[wilko74 in reply to scorpiolass]

Thank you, that is very helpful. And heartening that so much can be implemented at home. I'll get on the case first thing tomorrow! Xx

[hufferpuffer]

Hello Wilko, I'm so sorry your Mum is so unwell now, I know how strong you have to be to nurse her through these days because I lost my Mum to emphysema, heart failure due to the emphysema I should say, she was only 70 but years of lack of oxygen puts a strain on your heart and it leaves damage that cannot be repaired.

I regret not being with her more but I was at sea working most of the time I didn't realize the gravity of the illness and wish we could have sat together with the sun on our faces many more times before she left..That was 1995 , there have been improvements since then I pray, I am hoping to be able to stay at home if it's possible, perhaps you should try phoning the BLF on Monday I'm sure they'll be a great help to you, they are wonderfully, knowledgeable about these matters, much love and hugs to you and your Mum, huff xxx

[wilko74 in reply to hufferpuffer]

Thank you so much for your message, it is very much appreciated. Xxx

[Lyd12 in reply to hufferpuffer]

Hi Huff,

what you said about your Mum and lack of oxygen really struck a cord with me. My dad died in 1986 he had emphysema for many years, no hospital treatment or oxygen, and died of heart failure age 79. the feeling of sadness that a loved one did not get the help they needed, and guilt that I did not do more, never goes away. this forum helps people understand what they can expect in the way of help, even to the end. iris x

[medow]

What a wonderful daughter you are, and if love could cure you'd be working miracles, I'm sure mum is finding peace with your love and support xxx

[wilko74 in reply to medow]

Thank you, that's a lovely thing to say. Much appreciated. Xx

[jabber]

Hi Wilko, I am so sorry to hear your mum is so poorly. I think it's a good idea to phone the helpline on Monday - they are so knowledgeable and will be able to advise you on what questions to ask your mum’s consultants.

My big question would be what was the justification for taking her off the Bipap when she was doing so well on it? The helpline nurses might be able to make sense of this for you, but as a bipap user myself for the last 6 years, I know what a difference it made to my life and health when they first put me on it. I don’t understand why she can’t have a bipap at home. Mine is on permanent loan from Southampton Hospital’s respiratory unit. I don’t know anything about opti-flow so I can’t really comment on that, but again the helpline nurses would be able to advise.

Your mum is so lucky to have you looking after her. I do hope she gets the treatment and care she needs and a happy life at home with you and the family for as long as possible. With love, Jan

[wilko74 in reply to jabber]

Thank you so much, your advice has helped me feel confident enough to challenge these decisions on behalf of my Mum. Fingers crossed..... Xx

[rubyred777]

Hi Wilko

I'm so sorry for what your mom is going through. Not only her, but your whole family. She couldn't ask for a more loving and caring daughter. God Bless You. I'm sure you can get help at home, as Cough says. No one should have to suffer needlessly, when there are things that can be done for them.

Good luck Wilko,

may you have many more sun filled days with your mom.

Rubyxx

[wilko74 in reply to rubyred777]

Thank you. Xx

[Hidden]

Very best wishes to you and your mum, Wilko. As others have said, if palliative care is offered then try to insist on the Bi-pap being part of the package. I know there's no point in raking up old embers but it seems unbelievable to me that her doctor either didn't recognise, or else chose to ignore, her symptoms of lack of oxygen. It seems the medical profession is one of the few, where members can make serious errors of judgement and life threatening mistakes. You must be very angry. But of course your mum's comfort and welfare are your priorities now. Again, very best wishes to you both.

[wilko74 in reply to Hidden]

Thank you so much, I am going to have a bi-pap chat with the consultant tomorrow. Really appreciate your advice. X

[sassy59]

So sorry to hear about your dear mum and you are right to want to give her the very best quality of life for however long she has left. It is often the simple things we think of at this time too isn't it, sun shining, seeing the blue sky but of course medical equipment is also necessary to help her. You could try and make some enquiries at your local Hospice and see what they have in place or even ask the good people at BLF if they can help. They have nurses who may be able to shed some light on things for you to help your lovely mum. Your mum's GP should also be able to help so do ask.

I do wish you the very best and also wish your mum the best care she can possibly have at this time. Love to you all. xxxx

[wilko74 in reply to sassy59]

Thank you for your advice. I believe we have an excellent hospice, though hadn't considered approaching them direct. Great idea! X

[Hidden]

Hi Wilko

[Hidden in reply to Hidden]

Sorry the above sent in error. I would just like to wish you and your Mum all the very best. It must be so hard for you both just now. You have been given much good advice which i can't add to. Will be thinking of you xx

[wilko74 in reply to Hidden]

Thank you, that's very kind. X

[Dedalus]

Bless you (and your mum) - this must be so difficult for you - I can't help directly I'm afraid, but, as mentioned above, you could ring the British Lung Foundation tomorrow on 03000 030 555 and ask them anything you need to know. In the meantime, stay brave for your mum - she is so lucky to have such a loving daughter. All best wishes xx

[wilko74 in reply to Dedalus]

Thank you, I'll phone them first thing. Great advice, thanks. X

[coughleigh]

So sorry about your mum.I wish I could help you.I see the great advice already put up,please take it and phone.You are a wonderful daughter just like ours. Bless you both. mags xx

[wilko74 in reply to coughleigh]

Thank you so much. Xx

[wilko74]

Thank you all so very much for your replies, kind thoughts and good advice.

I'll call BLF first thing tomorrow, and already feel more confident to approach Mum's consultant and ask about using the bi-pap again.

I cannot express just how wonderful it is to know that there are so many kind strangers out there. This is a hugely positive thing to have come out of such an upsetting situation and I am very grateful to you all.

I'll keep you posted on how we get on. Thank you again.

Xx

[wilko74]

Thank you, I'll definitely take a look. Really appreciate your help. X

[wilko74]

I forgot to add, that I wish you all good health. Xx

[Hidden]

This is the first time I have read this about Vitamins and of course I am intrigued to the affects they are having. When I order them do they have to be a certain strength for them to work.

Many Thanks

Val X

[Hidden]

Thank you so much Graham, I am so pleased that your wife is recovering. I will order some. I am moderate COPD and live in Newark just up the road from you it seems. I will let you know what happens or if I don't manage to get the right ones, what brand are they?

Many thanks

Val X

[Hidden]

Thanks for your help.

Val x