Suggestions PLEASE.

[Ohtwo]

I am on home oxygen. I have 1 concentrator and 3 flasks that I can fill from a liquid oxygen tank. I really struggle with the portable flasks

Difficulty in filling

Heavy to carry

Only lasting one hour

Yesterday I went for my 1st rehab which I was so looking forward to. It was a nightmare,

First it took an age for me to fill the flasks, then I had to put them in a suitcase in order to carry them, they then started to scream until I could get them upright. I ordered a taxi to get me there which was late, i would have to get 2 buses if not. By the time I got there my heart rate was that high I was unable to join in for about 15 mins. Then they only had me down for 6lpm and i am on 8. They phone Air Liquide to check my prescription and they said 6lpm. my respiratory nurse had changed it ti 8 but because no one had been updated i was on 6.By the time I got home I was in tears. I have to do it all again on Friday and although I need to get out of the house I am feeling so put off.

Is there an alternative to these flasks?

Also can I get any help with transport. I don't work and after being made redundant my partner is only working part time plus over time when available. We have no other financial help.

Normally I am a fighter but ........

[phillips1]

Hullo there Ohtwo, I can't help much about the oxygen but I would certainly get in touch with your local council's Welfare Rights department. You could be entitled to a lot more money than you think. I found they knew far more than me about what I could claim. They will even home visit if you wish and do the paperwork for you. Citizens Advice also do something similar but they tend to be very understaffed these days. I hope this helps.

Bobby xx

[Ohtwo in reply to phillips1]

Thank you Bobby, am I allowed to refer to you as Bobby, I am new to all this. I will do as you suggest. I did phone citizens advice but they would not give me an appointment and I could not risk my oxygen running out by going down and waiting. I will try welfare rights. thank you again.

GJ

[phillips1 in reply to Ohtwo]

ohtwo

I get called all sorts of things so Bobby is just fine.

Bobby xx

[Toci]

Can no one offer you a lift to the PR? The first time I attended I picked two others up on my way in the the physios then dropped them off. Or, if it is at a hospital, you can claim bus fares back (not sure about taxi fares). Maybe a medicar can be arranged?

As to the O2, can they not supply it there? They had one of those massive cylinders on wheels and I used that while doing my PR. Talk to your respiratory team and see what they can do to help. xx

[richardcrossroads in reply to Toci]

they often have machines there also

[Ohtwo]

Thank you for your reply. I think is depends which area you are in on how well courses are run. I have talked to my respiratory nurse and he could only come up with giving me an extra flask, which is OK when my partner can carry them for me. As for the bus fares they are not a problem it is the amount of oxygen I would use before I arrive at the sports hall (about 45mins) one flask last an hour and I can only manage the take 2. I hope you don't think I sound to much of a grump, because I am not. I just get very frustrated and finding it hard to adapt. Once I'd had a couple of G&T's last night I was fine until this morning when I woke up sore in places. This did not stop me repeating the exercises today as I know the are doing me good. thanks again, have an enjoyable day.

GJ

[Toci in reply to Ohtwo]

No you don't sound grumpy, just frustrated, as I would be too. I am not clear though on why they cannot transport oxygen to the venue for you to use? It may not be liquid but tanks of gas are used at the hospital so they only have to 'borrow' one, which is what they did for me. And, on my last course, I had an ambulance to transport me. Be pest and keep on at them.

[Ohtwo in reply to Toci]

I have been trying my nurse today to ask this question but I am still awaiting a reply. Again thank you for your replies, people are so helpful on this site, I don't feel quite so alone anymore.

[maggie44 in reply to Ohtwo]

Hi GJ

Like Toci says, I'm surprised the organisers of the course cannot supply you with oxygen to use while you are there - they did so for many people on my course. At least if they did that you would be able to get there and back on your two flasks. It is a health and safety issue I would have thought and after all the clients of the P R course will by its very nature have issues with breathing!

Hope you get it sorted since it can be very worthwhile. ( Well done for doing your homework!)

Maggie

[Ohtwo in reply to maggie44]

I feel encouraged by the replies I have had, My problem is I find it hard to admit I need help. I seem to take " I can manage attitude". I think I have realised I have to accept where I am, readjust and if I need other to accommodate me instead of me accommodating them then so be it. Oh wow you people are putting the fight back into me.

[sadie1951]

You poor thing, I do hope you can put it behind you and not let it put you off trying again. I found social service very helpful (I was referred to them after a hospital stay some years ago but you can approach them yourself) and they can also arrange for someone to help you with applying for DLA (is it PPP now?). That can make a massive difference. I'm afraid I don't know about oxygen. All the best to you, I hope you find a solution to your oxy problems. Sadie xx

[Ohtwo in reply to sadie1951]

thank you for taking the time to reply. All the reply I have had have been really encouraging. It has lifted my day enormously, made me take stock and made me realise I have 2 choices let this control me, or for me to take control. All you lovely people have awaken the fighter in me. Tonight I will raise my glass to you all. Cheers. I hope one day I may be able to return your kindness, with what I don't know you seem all so clued up.

[jabber]

You keep fighting Ohtwo. Sorry to hear of the problems you've been having. Maybe you've thought of it, but have you tried local organisations like the Lions, the Rotary Club or the Masons? (You don't have to be a Mason to be helped). These groups will often have members who are willing to drive people to hospital or doctors' appointments. Also, in my area (West Dorset) there is a Good Neighbour scheme which is run by the local churches, but you don't have to be a church-goer to apply.

I do hope you are able to sort out something which gets you to your PR sessions without all this stress and worry. My best wishes, Jan

[Ohtwo]

Thank you Jan I will look into this as I do need to get out of the house. At the moment I can only do this at weekends when Mark is not working. It was suggested that I try miles for smiles or was it smiles for miles but I got no reply. I was hoping to go to a BE group that meets once a month but again further away than my PR group and that cost me £32 to get to. I always feel rushed by taxis. thank again, you are all so very kind

GJ

[winebuff]

Ohtwo hi. It sounds as if you had the same type of flask as I used to have, but I had occasion to ask for out of area oxygen as I had to go to Kent. I was supplied through British Oxygen by a company called Dolby Vivasol and the flask was a marathon helios the bueaty was it cauld be used in any position without protesting and leakage, but it had a dual port on it which enabled either a constant feed or an on demand feed. I note that you have a high demand rate therefore the flask is never going to give you enough time. Sitting down on a bus for instance with it on the on demand position could give you a much longer time before it runs out. You might need to seek advice on this but you have to get your health professional or your Doctor to change your proscription anyway. Hope this is useful

Dick

[Ohtwo]

Thank you for your reply, it was very helpful. I have spoken to the respiratory nurse and I am unable to use on demand. I have used the Helios flask which were great as they came with a backpack, but because I sometimes need to use a mask the flow rate did not go high enough on the Helios so they were changed.

GJ