Congestive Heart Failure/home oxygen?

Anubis_2

Anyone with CFH on home oxygen?

moose1982

I'm not, but I used to work for a company which supplied home oxygen. I did various roles including installations, so if it's something general, I may be able to help?

Anubis_2

Thanks Moose . I just wondered if anyone with CHF had it and at what stage they were prescribed, as its something being considered as I can't lie down and needing a lot of pillow support 24/7 to be able to breathe.

moose1982

Sorry I can't help on the CHF side, but if it's going to be for laying down and just home use, it won't be half as bad as the people who need it going out.

Depending on your prescription rate, you'll either have a concentrator (machine) or a cylinder. If it's for sleeping and a low dose, try for a cylinder because the machines are noisy. The only way to keep a machine would be to have it in another room and tubing put around the place, this could look untidy and maybe even a trip hazard if you have mobility problems (point this out to the installer if this would affect you).

Delivery would be via a mask or cannula (nose pieces in essence) and like any other piece of medical equipment, you'll get used to it. Don't be afraid to ask for more, they do become stiff over time and uncomfortable if you have a cold.

Anubis_2

moose1982 wrote: »

Sorry I can't help on the CHF side, but if it's going to be for laying down and just home use, it won't be half as bad as the people who need it going out.

Depending on your prescription rate, you'll either have a concentrator (machine) or a cylinder. If it's for sleeping and a low dose, try for a cylinder because the machines are noisy. The only way to keep a machine would be to have it in another room and tubing put around the place, this could look untidy and maybe even a trip hazard if you have mobility problems (point this out to the installer if this would affect you).

Delivery would be via a mask or cannula (nose pieces in essence) and like any other piece of medical equipment, you'll get used to it. Don't be afraid to ask for more, they do become stiff over time and uncomfortable if you have a cold.

It would primarily be for home use as I don't go out as such. However if I went out I may need it as breathing is getting difficult.

I can't lie down at all (It feels like I am choking and drowning at the same time) and I am breathless sat up but as I have to be moved around due to pain etc, I get even more breathless but can sustain breathing when still.

I will bookmark this thread as I have to go and see my doc again shortly and your advice will help is he decides to prescribe. Thanks

moose1982

The doctor can only complete a HOOF (Home Oxygen Order Form) and your local company then install the equipment. The HOOF has on the amount of litres per minute and hours per day, the local company will then see what is available (and safe) to fit into your home.

All the oxygen suppliers must have a 24/7 freephone number, so always give them a call if something isn't right and always tell them when the doctor changes the prescription, the word doesn't always get to the supplier which makes them feel like fools I can assure you.

Regarding the masks and nasal cannula, there is no harm in asking for a couple of each on the install, just say that you'd like to see which is most comfortable. They cost pennies to the supplier so keep a supply of the one most comfortable to you. It's the great thing about oxygen actually, it can be tailored quite a bit to suit the user.

I've probably met someone with CHF, just never realised it, I never did ask what was wrong with people, it seemed very wrong to me. Hopefully you'll get a nice person who does your deliveries and installations, chances are you will. But feel free to ask any questions if you would like, I may as well be of some use

Soapn

my ma suffers from this and nearly died from pneumonia in 2010 and spent 4 weeks in critical care. She's been hospitalised a few times since then.
Unfortunately she lives in a block of flats so they won't give her oxygen at home

Anubis_2

Soapn wrote: »

my ma suffers from this and nearly died from pneumonia in 2010 and spent 4 weeks in critical care. She's been hospitalised a few times since then.
Unfortunately she lives in a block of flats so they won't give her oxygen at home

I am sorry to hear about your mother, and even more sorry they won't give her oxygen because she lives in flats.

Was that her Doctor who refused or was it the suppliers?

@Moose - when you speak of installation, do you mean the plugin type? Would portable not be issued in cases such as soapn's mother and perhaps mine too, as my bedroom is an embarrassing 10ft by 5ft, most room taken up by the bed - there certainly wouldn't be room to install a large plugged device. I am in bed 90 percent so it would need to be in the bedroom.

The other bedrooms here are slightly smaller so I can't move bedroom and downstairs is one room and a kitchen.

Are there certain rules? If the equipment could not be fitted due to lack of space or as in case of being in a flat, would the portable options not be allowed?

Thanks for your help so far

moose1982

@ Soapn

I'd suggest there is more to just being in a flat as to the reason for non-supply. It could be your mum cannot operate the equipment safely (I have no idea remember)? That would be the normal reason. For example, the user (or someone else such as spouse or carer) cannot understand how to use the equipment, some people as they get old do get mental health issues and cannot remember something from one day to the next. Or it can be denied if the user smokes. Or it may just not be practical within the home, for example it could be a tiny place with little ventilation, the user has mobility problems and installing would create a health hazard to the user.

VfM4meplse

Soapn wrote: »

my ma suffers from this and nearly died from pneumonia in 2010 and spent 4 weeks in critical care. She's been hospitalised a few times since then.
Unfortunately she lives in a block of flats so they won't give her oxygen at home

Probably because of the fire risk.

Anubis - I don't think your GP will be in a good position to complete a HOOF for you, it should be your cardac consultant that initiates if he thinks you are likely to gain a clinical benefit. Although oxygen seems like an obvious solution, optimising your medicines and increasing your mobility are better first options. I know it's incredibly hard living with severe HF, but do explore these steps first.

If ordered, any oxygen supplier will do a full assessment of your living conditions before installing to ensure that it is safe and easy for you to use, so don't stress about your environment because everything will be taken into account. People living in flats are able to use oxygen, but it depends on the facilities to hand.

moose1982

@Anubis

An installation is the machine or cylinders, I use it as a general term really because it could be machines, cylinders or both. I would probably look to install the machine in the next bedroom if possible (assuming you would need a machine of course) and run the tubing along the skirting board into your bedroom. This would keep it neat, tidy and reduce trip hazards. The machine must be near to a plug as well.

If there is no room like that, cylinders may need installing, but they are heavy and someone would have to lift them upstairs for you and then back down when they are empty. If they do decide on cylinders though, try and get some chains attached around them and hooked onto the walls, the reason being if they fall, they will hurt.

Regarding portables for outside use, they are fairly light and you can get bags for them (supplier must supply these). Some people had an adaption done to their wheelchairs to fit them perfectly, then we went and got different sized portables (3 year wait from manufacturer!) so try and avoid anything like that.

I get the impression that you're slightly worried about it all and I really wouldn't be. It is so simple now compared to equipment which I've removed and thought 'that needs to go on Antiques Roadshow'! The machine is used by just flipping a switch once set up and cylinders are just turning a dial (you can get grip helpers for them too, like you can for kitchen utensils).

Another thing, if you get a machine, ensure you are on the cheapest deal for electric because they do use quite a bit. You will get money back from the supplier for this but, as you can imagine, if someone doesn't change, it won't pay the full bill. They work it out by the number of hours it's been on (they'll be a counter on the front) and then work out the average cost of electricity in your area.

I'll try and find a picture of what seems to be the most common machine.