I would like as many replies as possible about having oxygen in the home when suffering from a sickle cell crisis. Thankyou in advance

[cazzera]

I would like as many replies about having Oxygen in the home.....

[shankei]

Hi Cazzera,

I have never used oxygen at home for SC crisis, but sounds like a good idea, any idea how you would go about getting it in the home?

[cazzera in reply to shankei]

Hello,

I work in Education and do alot of research. I hopefully will make a difference in the future. I have had correspondance with sickle cell experts and I am now trying to set up a project that will enable Sickle Cell sufferers to have some form of Oxygen at home, as well as educating others, but I need alot of responses as doctors are telling me that SS patients have never asked for this....I know for a fact it helps, maybe not fully but it helps, and I will do everything to help SS sufferers receive this at home, it will also save the NHS money as they may not be alot of admissions in hospitals. If I get replies then it will make a difference. Thank you for your reply

[cazzera in reply to shankei]

Hello Shankei,

Oxygen is always supplied when hospitalised and in an ambulance, so was just wondering if any S.C sufferer would find this useful at home.

[shankei in reply to cazzera]

Your right, that is standard procedure when hospitalised and I've also used oxygen whilst flying, so I'm sure it would be useful at home too, but I do agree with Stef1 lous, it would probably only be prescribed for particular circumstances.

[cazzera in reply to shankei]

Hey Guys,

Well would you not agree that have Sickle Cell Disease is a serious and particular circumstance. Thank you for all your replies. Keep them coming please.

[Stef1lous]

I have oxygen at home and I find it helps me a lot when I can feel a mild crises coming on. I originally got oxygen prescribed due to sickle lung disease and saturation levels dropping extremely low at night time. I don't believe it is something that can be given without good reason. Hope this helps.

[Maramobritt in reply to Stef1lous]

This is exactly my situation. I was prescribed oxygen at night for the same reason, I also have asthma. I have been very well since.

[cazzera in reply to Maramobritt]

Excellent. more replies like that will help. Cheers

[cazzera]

Helps Greatly. Thankyou

[NIKASH1]

I think oxygen would help a lot but try also drinking plenty of fluids as they tend to help

[Stephsteph92]

I had the conversation with my dr as I will often only go to hospital as last resort when I know I need oxygen in my system. I had asked Drs if I could get oxygen at home but following discussion it was felt if you're in bad crisis and needing oxygen you most likely need to be admitted and monitored by healthcare team. Following this conclusion personally I don't think it's the best thing unless in extreme circumstances considering the risks also

[cazzera in reply to Stephsteph92]

Thank you Steph. Cannot read the rest. In response to that I understand, however if you feel a crisis coming on then I believe having oxygen before it gets any worse, or if you feel any twinches then a little oxygen will help, if not then be admitted into hospital. Dont think any health professionals understand how much money the NHS would save if this can be controlled with a little oxygen before the pain gets any worse.