DLA

Hi Vanessa, sermon read and agreed with. I heard from one of the suppliers today (Braun, not Smile as yet) via email. They possible misunderstood my query and supplied details of one large and one portable oxygen concentrator. The big one costs £900+ and the portable one £2400+. I have queried if they have got the prices crossed - how can smaller cost more? As you suggest, it may be because the NHS funds the bigger ones and we poor suckers are then left to pay whopping prices if we want to get around better by using a portable one. Maybe you should start a campaign? Organise a petition? Vanessa for President?? Go gettem girl. Jacee :wink:

Great to hear that you are feeling better with the O2 - I'm just so envious and wish I didn't have to wait so long for my ABG tests etc. I seem to start each day gasping as I'm already in the low 80's going from bed to the bathroom which is right next to my room. I also have to sit and recover at the bottom of the stairs again - and all this before I've had a cuppa, think I will search ebay for a Tea'smade!

I'm truly sick with nerves this morning. In a couple of hours my son will pick me up to take me for the \"Employment Support Allowance\" medical, which entails a 50 plus miles round trip. I am absolutely dreading it and terrified that I won't pass. It replaces what was previously incapacity benefit. The annoying thing is that even though I will still look for work, I have to jump through all these hoops just for the privilege of not having to 'sign on' anymore - which involved a 30 plus mile trip! To be put in the group that no longer has to work you have to have less than 6 months to live... nice eh?

To be honest I don't think I can face another 10 years of it on my own. I already feel like some sort of criminal scrounger from having 5 months without work - daft thing is there are fit youngsters and men right across Cornwall who spend every winter on the dole through no fault of there own as the tourism side of things practically shuts down for six months of the year. Why is someone going to give an overweight huffing puffing 55 year old the job? And god knows what they'll think if I turn up for interview with the O2 on my back or trolley! Haven't a clue what work to do either. I wish I was still doing my therapies, I used to love my work so much.

Well, i must go and get ready, I keep trying to tell myself that in a few hours it will all be over and I can forget about it. Just hope that this doesn't have a knock on effect to my application for mobility allowance as that would really upset me. Right then, 'fingers crossed' :cry: Vanessa

Vanessa for President. I like that. Bet she could sort things out.

I do hope your ESA assessment has gone well.

You still have to hear from a few more suppliers. They may be more helpful.

Tessa

Oh Vanessa, you are not on your own you daft lump, you have a lovely daughter and son that I know of, maybe other family or friends. I think it was the nerves talking. I know what you faced because I went with someone else, who does not have COPD (but does have severe other problems) and they felt exactly the same. It is terrible what they put people through. I don't think anyone will ever see you as a scrounger though. Okay, either you will get the benefit or you will not. You should. I'm overweight, older than you (at 55 you seem to be the \"baby\" of our group (I'm 58, just)) and I huff and puff greatly. I visited a man today and parked outside his home.His house is about 10 strides from my car and I had to ask him to let me get my breath back before I could speak to him.

I can't suggest what you might do - do you have typing skills ? (you certainly appear to have). Can you advertise yourself at a local college or University and offer to type up dissertations, essays, projects? Or do you have a nice speaking voice and could answer telephones, make appointments and take messages? Or run a massage parlour? Or run for President? The sky is the limit! Seriously though, what with this ordeal, waiting for your oxygen and having vertigo - I would be amazed if you did feel positive right now.Can you speak to Social Services about sorting out community/home care? Can they offer support with travel or anything else? They have a duty to assess your needs anyway.

Less seriously, maybe it will go really well today, you will come home and drink a bottle of wine to celebrate, wander outside, meet Prince Charming (who I am told is into overweight huffers like us) and live happily ever after. If not, let me know and I will drink the wine for you. Cheer up lovey. Tomorrow is another (lousy) day.

Jacee

I got a reply about the cost of the portable Oxygen Concentrator (POC) after I queried the portable costing over £1500 more than the big one I got the following reply:

\"Yes I can confirm the prices are correct. The portable one is more expensive because it is smaller and more compact.\" Braun

So..............this is one I will not be buying. I will wait for Smile to post out their brochures and hope for better!

Jacee:x

Thanks for the info Jacee. I too wouldn't buy that one.

I hope Vanessa's assessment went well and that she feels a bit better todayl.

I had a tank of oxygen delivered today and asked the girl if they did longer tubes. She said she could cut one to any length I wanted. She came upstairs and measured into the other bedrooms and the bathroom (that's the room I always come out of gasping, even if I have just gone in to open a window) and cut the tube longer than I required. I am so pleased with it.

It is a change to meet helpful people and it is a nice bright day here.

Tessa

Hi girls, Thank you both for being so supportive and optimistic for me!

Well, it seemed to go well, and although it said to allow 2 hours for the medical!!? we were only in there for 20 minutes. I will have to wait for a couple of weeks I think, before I know the outcome. It just doesn't seem relevant to copd though. It was things like bending forward to touch your knees, which I would understand if I had a back problem. Also, she said 'can you do a spirometry for me' and I said yes, no problem, and then she gave me a peak flow meter to do it with. I expressed surprise and explained that spirometers and peak flow meters were two different things, but she insisted I blow 3 times into it and then she recorded the score. My lovely son, Isaac, was with me and he said that should there be any problem then we will query it, but otherwise it should be OK.

Usually my daughter in law would accompany me to something like that in case any undressing etc is required. Isaac worries about me a lot and naturally has a stronger emotional attachment, and this was the first time I had described all my symptoms in front of him. Being a tough old boot it hadn't occurred to me how upset he might be and I was shocked when he started crying and I ended up having to hug him and go ''there, there it's OK ' just like when he was a little boy (he's 34)! I felt awful as I suddenly realized what it must be like for him. I always rely on him for help and worry about how Isabel would be affected as she is still young and at home. I have totally overlooked the fact that it might be upsetting for him too. Incidentally, 'Izzy' is sweet 16 today, so we have reached another milestone! I couldn't afford much as we are saving for her 'prom dress', but I got a book I knew she would enjoy, and woke her up with breakfast in bed, so she went off to school with a big smile on her face. She is a good girl, most of the time :wink: Well, sorry if I've rambled on a bit there, once again thank you both so much for your support, I do appreciate having found two like minded people to share with, luv Vanessa

Vanessa, I'm so pleased it went well and I'm sure it will go in your favour.

It's horrid having a lung condition that people can't see and so don't understand what it's like when you can't breathe normally.

When you do a peak flow meter test what number do you get to? Even on my third blow I just can't reach 90.

It is rough on our kids when they realize how we really feel. Fortunately my daughters have been with me from the outset so they know the score.

Hope Isobel had a lovely Birthday.

Tessa

Hi Tessa, pleased you got your oxygen tubing sorted out, hopefully you will use it more often now it actually reaches to where you need to use it. I can't understand why they left you \"short\" in the first place. Good luck with it and do try to persevere. Do you use a nasal cannula or a face mask? I found the mask an irritant and, as I have quite a small face (well, I did then) it did not fit properly and the only two sizes they do are adult and child - one was far too small and the other far too large and kept slipping off. The cannula can make your nostrils a little sore with constant use but I have found that if I use something like Nivea cream whenever I am OFF (making sure to wash it all away before I go back on or it does something dangerous to the tubing) I soon recover and. as you get used to sing it longer term, the irritation stops (mine did anyway). Interestingly, I had to get used to it all over again after my holidays away when I did not use it. Good luck with it.

Jacee

xx

Hi Vanessa, glad the ordeal is over and seemed to go positively (if that is the right word). Try not to worry about the outcome and I think it is torturous to expect people to wait weeks to hear from them. I would view the 20 minutes out of two hours as a good sign - why go on testing when they have realised that you fit the criteria (even if you can touch your knees!!).

I know what you mean about your son - I have had the same problem. My eldest son is 35 and my youngest 19 and I have tried to protect them both from realising the full effects of the COPD and the poor prognosis for me (I saw my specialist yesterday and they have now ruled out any chance of a transplant due to a combination of my age and osteoporosis). However, my daughter (who is 31) knows the full story and is the one I can cry with. Do we protect our boys too much? :?

We are having shenanigans at work as we have recently had the pay and regrading (degrading?) people in - some getting huge rises (new starters - up to £5000) and some nothing - like me. All of the senior staff are the same as me and our vast experience is being ignored as we are all placed on the same rate for the same job description. This means that, after 12 years, I get paid the same as someone with only two years experience who has never carried any complex cases and has not got the experience as yet to do so. The mood is currently quite militant. many are actively seeking employment elsewhere but who will give a job to someone with my sickness record? Maybe I will also need to consider opening a massage parlour and we can be partners? :wink:

Jacee xx

Hi Jacee,

Yes I use a nasal canula. At the moment I'm getting in a bit of a tangle with all the tubing, but am sure I will get it sorted after awhile. She had to use some kind of adhesive which is not nice and a bit smelly, but that should wear off too.

I'm sorry to hear about your work situation. It is not a surprise as this sort of thing seems to be happening everywhere. Where my daughter works, twice people have had to re apply for their own job.

Is there nothing that can be done as it is very unfair.

Hi both - just a quickie to say I think it might be time to start a new thread!

Will catch up a bit more later - was just getting settled at the computer when a neighbour knocked the door to warn me to prepare for extreme gale force winds due to arrive here tonight. Living by the sea it can get really rough - hair raising but exciting too! Not so keen on the lashing rain that usually accompanies it though. Anyhow, must press izzy into service to help me \"batten down the hatches\" outside - weigh down dust bin, check there's nothing left loose that might cause damage or harm to us or others etc

Always wish I still had the strength to stand and watch the sea when its like that, beautiful and tempestuous, but its a bit too risky really. We had half the roof blown off a few years ago - felt like my bed was raising a few inches off the floor when it happened - now that WAS scary! Back later Vanessa

Hi Tessa, no, not much we can do at work as they seem to have covered all angles. However, I am pleased about your oxygen. My technician gave me what he called a \"swizzler\" which turns independently and so helps ease out tangles and twists in the tubing. However, I found it a bit heavy (pulled on my ears) so I disconnected it. Might be worth a try though. Don't worry, smell goes quickly. Keep smiling (and breathing).

Jacee xx

Sorry I'm of no use when it comes to the practicalities of using O2 tessa, not having experienced it yet. Reading your and Jacee's comments does give me some insight though, for which I am grateful.

As regards how our scores rate on a Peak flow meter I have no idea. I couldn't really see what it said and I wasn't allowed to know the results of any of the test components. I did a bit of googling last night. Peak Flow is not considered relevant for copd testing/measuring. Apparently it can give totally false readings when relating the score to copd lung function. I don't know why they didn't trust my medical records FEV1, GP or Consultants' etc

For about £40 -£50 they could invest in a hand held spirometer and check FEV, FVC etc and be given a \"lung age\", furthermore you input your age, sex, height and ethnic origin so it gives a really clear picture. Wish I'd taken mine with me now. Will definitely do so if it goes to tribunal. Then again I'm probably getting neurotic now and jumping the gun a bit. Its just I've read so many 'horror' stories re ESA.:roll: Vanessa

PS. Have you noticed no one but us seems to have used this site lately? I hope we're not putting folks off in any way! Come on visitors, join in!