sibling short of breath

[nursek65]

my brother has one alpha trypsin deficiency and is extremely short of breath , fatigued , sleep deprived , miserable sad and lonely. he can still make a joke and tries his best. he is a CO2 retainer and Spo2 around 89%. presently he is staying with me and I'm feeling sad for him wondering if anyone out there understands? wondering if anyone out there has benefitted from home oxygen ?

[Pam1952]

Hello and welcome. So sorry that your brother is having a tough time. It's not something that I'm familiar with I'm afraid, but I'm sure that someone will be along soon who can give you some good advice. Best wishes to you both. 😊

[Ruben123]

Alpha 1 is a hereditary for of COPD .I think the same treatment as others with decease is all they can do ,The best advice would be from a doctor put I think your oxygen has to be low do be able to have oxygen therapy but not sure .Hope ur brother feels better soon there is nothing worse than watching a loved one suffer xx

[nursek65 in reply to Ruben123]

Yep thanks your reply aware of hereditary cause just he had been put off oxygen therapy at home not sure why so I think il investigate more what I can do to help

[Mandy6513]

Oxygen is given to protect the major organs from the lack of oxygen so we benefit by not having damage done to them

[nursek65 in reply to Mandy6513]

Thanks for that I had overlooked it was just concentrating on low lung function il get to the dr for advice

[Mandy6513 in reply to nursek65]

Im on oxygen 24 hours a day and although a lot of people say it helps with breathlessness its not something i have found...... if his sats are low enough that they advise oxygen he should really use it because it will make him feel better ... when your sats drop really low its a terrible feeling and totally exhausting .... home oxygen will help with this and give him some more energy plus it puts a strain on our hearts and brain etc if its needed and we dont use it so if you can chat with him and find out whats going on you may be able to talk him round...Its not nice being on oxygen i know that but you soon get use to it and he will feel the benefit

You may have read this already

nhs.uk/conditions/home-oxyg...

I dont have the same diagnosis as your brother but there are some member on here that do and i know they will have a lot of information they will gladly share with you ........C02 retention is something i suffer from as many of us do and he needs to look out for severe headaches when he wakes on a morning and feeling drowsy as this can be a sign he is retaining a lot so would need his blood gasses checked.......Also make him aware of being careful if he uses anything to help him sleep as it obviously slows down the breathing which can raise to c02 levels..Its dosnt happen with everyone but i personally can not use anything that makes me sleepy or my c02 goes very high

This site would be a great support to you and your brother if he can come on here ...Hope you stick around i know it can feel very lonely.......Your a fab sis to have him with you x

[nursek65 in reply to Mandy6513]

thanks your kind words of support. hadn't thought about sleeping tabs raising co2 but even tho he takes them he can't sleep. have rung his gp today for urgent referral to resp team at hospital and taking it day by day Seems to have plateaued but doing nothing except up for toilet and meals -loves to chat and keep up with world events on radio has a gorgeous dog ego loves him to bits sio things to be thankful for has been living on a marina moored yacht so come off for some respite with me for now