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DaiTheDragon
17th November 2014, 11:33
I have been using a BiPap machine since I was diagnosed, at night first then sometimes during the day. Day by day I have had to start using it more often. Over the last couple of weeks I can't be of the machine for more than a few minutes. Can't even go the bathroom without my machine, even brushing my teeth leaves me gasping for air. I am still able to walk around the house but have to use the stairlift to go upstairs.This seems like the end to me.
How do you other people manage when your on BiPap 24/7

David

Terry
17th November 2014, 15:15
Sorry to hear that David, I've yet to have the pleasures of a breathing machine but I can't walk, I just slide my feet behind my walker.

Regards Terry

Jan
17th November 2014, 16:00
I have an assessment for the BiPap in December, whilst like you I can still manage to walk it is becoming a struggle to breathe at times, perhaps you can talk to your MND nurse? mine has said that they don't want us on it 24/7 but if thats what it takes to be able to breathe then what other alternative is there? Hope you can get it sorted David

Springtime
17th November 2014, 16:38
Jim has been to see the Oxygen Nurse this afternoon and that was to check his blood gases. He is going into Liverpool hospital as an inpatient on Thursday and this will be to see if he needs BiPap at nightime. Ultimately if he does, the decision lies with him and I suppose that will depend on how he feels with the mask on. They suggested at the hospital today that we write a list of questions for when we go to Liverpool.

willsandco
17th November 2014, 17:13
I have the BIPAP machine coming over to us for a demonstration and a trial on 25th. The respiratory nurse will deliver it which is really kind of her. I have to be comfortable using it if I decide on a PIG year in New Year. I am hoping I never have to be totally dependent on it but nobody knows with this disease, do they David? I am sure we all recognise your anxieties about all this. We are all rooting for you Hugs Joycie.

willsandco
17th November 2014, 17:15
Spring, at least things are moving forward, aren't they? That is good news. Have they said how long he has to stay in hospital? Hope you both are well Hugs Joycie xx

Alig2014
17th November 2014, 17:35
I have no clue where Jean is with her breathing. She went to respiratory clinic while I was holiday and GP said he received a letter to say she had been but gave no indication of where she is at.

I know she is breathless after coughing and can only take small sips of drink with straw. When she blows her nose there is barely anything there. Also struggles when sitting upright. Really hoping she gets to go to hospice this week so we can have some idea where we are.

David I really feel for you. Wish there was something I could say that would help.

Will you consider full ventilator?

Best wishes Alison xx

DaiTheDragon
17th November 2014, 20:51
Spoke to my nuroligist and respitory nurse this afternoon and it seems my lung muscles are knackered. Basically the machine is keeping me alive.
I will be discussing tomorrow about my plans to come of the machine. I will wait till after my 25th wedding anniversary on the 21 Dec and get Christmas out the way then it will be time to go I think.
David

Alig2014
17th November 2014, 21:03
So sorry David, this has to be the worst outcome. I don't know if you have seen I Am Still Breathing but this was what happened and said in hindsight maybe he should not have started it. To have to make a decision like this is diabolical.

Hate this bloody disease your buggered from start to finish.


Lots of love and hugs to you xxxxx

Alison x

Alig2014
17th November 2014, 21:09
David have you not looked into a different mask that might be more pleasant to wear.

You can still have a good quality of life if your still mobile and able to talk. For Jean it's different if she got to this stage because she is paralysed from the neck down and has lost her speech so really can't do anything.

Don't rush into any decisions x


Alison x

Springtime
17th November 2014, 22:40
Oh David, what can I or anyone say to you. Thoughts and Hugs to you and your family. xx

Jan
17th November 2014, 23:06
Feel so sad for you, so sorry for the decision you have to make

caz
17th November 2014, 23:35
David I really feel for you and your family.rob was on nippy machine 24 hours a day for last 3 months and he fell asleep peacefully one night with the machine on .it was simply his time to go.hope that doesn't sound alarming.he didn't make any decisions it was simply nature I guess.there are options like an op where they attach wires to your lungs to keep them working.I'm not sure what it's called but he was offered the chance to look into it even before he started on the nippy machine.but he firmly believed in fate and didn't want any interventions.he saw our sons birthday then just a week later without any warning he passed in his sleep.it was a huge shock for me finding him and very hard on the children but it was so peaceful.please look at the other option of maybe an operation and discuss your feelings with your family.it will be very hard for them.love as always.caroline xx

Lycanthrope
17th November 2014, 23:39
Hi David x I can't imagine how you must be feeling, but it broke my heart reading this. Hugs and best wishes to you and your family whatever you decide tc Becky x

willsandco
17th November 2014, 23:49
David, the decision lies with you. It is something so many of us may have to face. At the moment I don't feel I want any interventions but time may change that. We are all with you all the way, whatever happens. God bless and hugs Joycie xx

john
18th November 2014, 00:03
David,
There is the option of a tracheotomy presumably. Sounds like a lot of support needed afterwards but it does take on the task of breathing for you. In Japan and the USA it seems like the norm but here rarely used.
If the progress with stem cells is maintained then it may not be so very long before a treatment is available. Would be a shame to miss out. If you are thinking about your family I am sure they would sooner have you in any state of consciousness than not have you at all.
On the patients like me website in America there were people who had been on the tracheotomies for 30 years or more.
The diaphragm pacer system is only available in the early stages of respiratory failure. I believe 50% lung function is needed when the surgical procedure is carried out. I am not sure if it approved for use in the UK. It is in the USA but I seem to recollect UK trials were ongoing.

John

ccinjersey
18th November 2014, 00:25
Follow your heart David, explore all your options and decides what’s best for you.

John’s right where there is life there is hope. Trachs are commonplace here people live years with them. Frank and Mik on this forum have them. Maybe speak with them about it, and see if it’s a right choice for you.

My heart goes out to you, as well as prayers that you find inner peace in whichever way you decide.

CCxox

Night walker
18th November 2014, 09:03
Hi David,
I am also at a loss of what to say. I know my hubby's breathing is compromised, he had 40% lung function at our last Papworth visit, we are going there again on Monday and I am dreading it. I do not know what my hubby will choose to do about having a BIPAP. He may well refuse one. He is still very angry at this disease.
I hope you make the decision for yourself and not for others. I would not want my hubby staying around just for me and the kids. It breaks my heart seeing him struggle so much everyday and losing a little bit more of his strong independent self everyday, whatever decision he makes I will accept,after a cooling off period. So it is good that you give yourself time to think things through.

As John says, there are treatments out there, it's a matter of time now not an if anymore in my mind. I think in another 18 months time we will be writing about the improvements we are seeing from the treatments on this forum.
Sending a big virtual {{HuG}}
Sylvia xx

Springtime
18th November 2014, 09:16
Good Morning David,
Have been thinking of you and hoping you are feeling a little more positive today and not as downhearted. I think all the posts to you on here show that people are respectful, caring and understanding of your feelings. I must say I was impressed with Johns post to you and hope it helps you even in a small way. BTW I was looking at your wonderful photographs on facebook last night they are brilliant, especially the birds (feathered kind of course) You seem to have captured so much beauty with your camera. Hugs and more Hugs Spring xx

DaiTheDragon
18th November 2014, 19:55
My wife and I went to the hospice today to chat about my options with some of the staff. We talked about making my life as comfortable as possible until I decide what to do. As I said I am going to try and stick around till after Christmas.
Passing away in my sleep sounds good to me. In fact I asked my OT to order me a hospital bed. It will be in the same room as my wife but I didn't want her waking up to a corpse beside her.
I know most of the people on hear are strong but I can't keep fighting it.
Thank you all very much for your understanding and compassion.
I will still be on the forum for a while, your not getting rid of this moaning old git that easy.
Spring, if you want to see more of my wildlife photographs have a look at my website.
www.wildlifewales.co.uk
Thank
David

Terry
18th November 2014, 20:25
Regards David;

If you can find a nice peaceful way out then great. Just don't make our lives a misery in the mean time. Seriously dave, we value your input and have helped me understand a few things.

Father Christmas.

PS:- Wot no sheep photo's ???

DaiTheDragon
18th November 2014, 20:33
Thans Terry.
The sheep photos are in my private collection.
David

willsandco
18th November 2014, 21:15
David, I don't know that people on here are necessarily strong. Folk say that to me all the time but, if I were faced with the same quality of life as you, would I still feel positive? All things considered, probably not. We can only deal with what we have to deal with today to the best of our ability and worry about what drastic deterioration brings when it is staring us in the face. This is what is happening to you now, you are staring reality in the face - and we all have to respect your feelings and support your decision. I, for one, am very saddened that you find yourself in this position and hope that things work out as you would wish them to. This Is a vicious, nasty disease that causes devastation in so many families and breaks so many hearts! Hugs Joycie xx

ccinjersey
18th November 2014, 23:16
Beautiful and stunning photography David. You have quite a gift, thanks for sharing it :)

CCxxx

Ellie
19th November 2014, 12:52
Strength of character comes in different forms x

Trevorhb
19th November 2014, 20:21
I hope I understand how David is thinking. Many of us start feeling positive, but when your quality of life is poor and you being kept alive by machines, that is the time to make a decision. Thinking of you David.

Springtime
20th November 2014, 09:05
Hi David,
Won't be on here for a few days so take care and hope your feeling brighter today. Hugs to you and your family Spring xx

mik
21st November 2014, 00:08
hi,
Dave have you thought about a tracheotomy, i can relate about bipap 24/7 i was on it full time for a year and half. i had maxed out the pressures and was probley only a few months from the end. but i wasnt ready for that. so i spoke to my respiratory doc about having a tracheotomy and things moved from there, i wont lie its hard at first, you have a few weeks in hospital, then you have a few adjustments to make when you go home. for me its getting easier day by day and i'm sure i've made the right decision.
any questions just ask.
mik

DaiTheDragon
21st November 2014, 19:06
Thank you for your post Mik. I will definitely give it some thinking.
Ummmmmmmm





Thought about it and no it's not for me. Just between you and me I am a big whimp. I freaked out having the RIG fitted so there is no way I could handle a big op like that.
Thanks
David

mik
21st November 2014, 22:52
hi david,
i understand its not for everyone.
believe me i freaked out big time when i had it done, the hospital was a 2hr drive away,i was due to be admitted on a sunday but 5min from the hospital i made my wife turn around and go home. the next morning my surgeon phoned offering me another crack at it if i went that day and had it done that afternoon. off we went and actually made it to the hospital but every 5min i had to be talked into it,even up to them injecting me with a huge dose of ketamine i was objecting. if you were'nt nervous about a serious op like this then you must be a few sandwiches short of a picnic!
i would imagine your braver than you think.
mik

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