Long term oxygen therapy

[stumac]

Hi all, I am just 45 and I have just joined the community and would like to know if anyone is or has gone through a similar situation as me, as i am now getting really stressed with it all and am on the point of early retirement for ill health reasons.

I have a veritable plethera (been reading dictionary again) of issues going on including Hepatapulmonary Syndrome, Hole in heart, diabetes 2, liver cirrhosis, portal hypertension, oesophageal varices, Severe obstructive sleep apnoea, sciatica, and a few other minor ones and have just been told I need to go on Long Term Oxygen Therapy for low oxygen levels. I am being told 8 hours of use per day and a sleep trial to decide whether I can go on 8 hours a night as well. Other wise it will be 16 hours per day. Unfortunately the flow rate I will need has not yet been ascertained as the oxygen testing machine broke dring my assessment but I am led to belive it will be around the 2-3 lpm mark. Again I am being told I will be given an oxygen concentrating machine which is non portable.

I am currently still just managing 20 hours a week at work but 8 hours a day would just about kill staying at work unless they guve me a transportable machine and I am not sure about the health and safety situation of taking oxygen in an office not to mention the embarassment factor.

Has anyone gone through this process before and how did they go on?

Stuart

[Toci]

Hi Stuart, you are talking about me here. I was prescribed oxygen for 16 hours a day but managed to use it from 5pm (when I left work and on my drive home) to 8:30 am (when I got out of the car to go into the office) and tucked in half an hour at lunchtime in the car. This meant I could be off during my actual working hours. I later took early retirement on health grounds and I now use oxygen 24/7 but I worked for about 3 or 4 years after being prescribed it.

[stumac in reply to Toci]

Thanks Toci, what type of machine did you have?

[Toci in reply to stumac]

Portable oxygen cylinders in the car and a concentrator at home.

[jjnanna]

Hi Stuart, I was on oxygen no1 for 15/20 hours a day but it was only needed for a few months as I improved enough not to need it which is possible and I would look into what Toci said as I had the big machine indoors and portables for when going out and it worked fine.....

[etch45]

Hi stumac

For the past year I have been on o2 24/7 took a while getting used to it but now it is part of me. I have the large concentrator at home ( will fall over the tubing one day ) lol when people come they just follow the tubing to find me 😀. I also have a small concentrator which I use while shopping, plus the cylinders as a back up, they go in the car with me. I was very much embarrassed at first but now Fred as they are known are part of who I am. ( street cred went out of the window though.

It hasn’t stopped me doing things, I still fly, drive in fact I absailed down a building the other month with a canister on my back.

Life just changes a little the only thing I am not able to do is swim and that I miss.

BE POSITIVE Take care Sheila. Aka etch45 🦋

[warwickstag]

Best thing I can say is to park your dignity and vanity because they belong in a different life. Put on your brave face and dare the world to do its worst, and believe me most people won't give a damn and nor should you. Oxygen is a great liberator to those of us who couldn't leave the house without it, but I don't recommend swimming with a "portable" strapped to your back. Good Luck.