Can we stay out of hospital? After a exacerbation?

Although it's been a life line for me just to get medication. If we already have access to the same medication would we still have to go to hospital.?

[Hidden]

Hi Invisible23, Fingers crossed and touching wood I have been able to keep my husband out of hospital since we were loaned a nebuliser by the hospital. Having said that the respiratory nurse said it was our joint care of his condition that kept him out of hospital last May. It takes a lot of monitoring when he is very ill.

Last May he started with a chest infection and we immediately started the antibiotics and steroids. The cold he had started with got and by the end of the week and the end of the emergency Medications I had to ring the doctor and ask for more. They happily obliged and during the second week he was very ill. I took advise from the respiratory team who advised me when he is so ill he could use the nebuliser as much as six times a day - I remembered that when he had been taken to hospital they had put him on the nebuliser back to back for four sessions. Having said that it does had some horrid side effects and using the nebuliser so often gave him very bad leg cramps coupled with the cold, dreadful cough, laboured breathing and the panic attacks (brought on by the bad coughing). At that point we used the oximeter so that I could monitor his oxygen levels and reported to the respiratory team. They advised me to make sure at rest his SATS were no lower than 88. It was another three days before he turned the corner and could get dressed. I actually called my sister out one night (who is a nurse) and asked her to come and see him. My husband is terrified of hospitals so we had to say she was just passing - at 10pm at night!!! Together with her assessment and my own gut feelings we decided that he was OK. BUT it was touch and go. Complications such as low sats and CO2 retaining can be a problem as well his terrible breathing.

In conclusion actually I was on a knife edge for a few days - it was the right decision and he recovered. He tells me though he could not have coped on his own. I would tend to agree - just setting up the nebuliser when you feel bad is hard work. Remembering what drugs you have taken can be hard; so I adopted a system of writing down each and every drug he took. I personally think you have to know your own body and know when you need help! Good Luck, stay well, TAD xx

[salis]

I wish! the stuff in my er is wonderful. You take it through the mouth and it opens your lungs right away. But it's not anything I can take home. Doesn't make any sense....

[CornishBrian in reply to salis]

It's because there have been some very dangerous complications using nebulisers at home. I bought one and use it when I must but I only have saline water on prescription. That is all I use my neb for. Incidentally, it's not due to costs as the saline water capsules cost more than the neb medication.

[Hidden]

Do you have a rescue pack you can keep at home Invisible? If not ask for one. It normally includes steroids and antibiotics which you can take when needed if you can't get a doctors appointment or it's a weekend or public holiday. This might help you stay out of hospital. xx

[Eve3066]

Totally agree with tadaw I actually live alone but have angered my family in the past by insisting that I can do at home exactly what they would do in hospital. I set up the nebuliser and my CPap machine and used the Oximeter. Had very strict medication times and wrote everything down. The times I have been hospitalised (three times) have been when the exacerbation has come on really fast, which it can do, and I have been unable to cope with it. Other than that I sometimes think the comfort of your home can help. You need to be fairly stoic though to get through it. Well done.

[whit in reply to Eve3066]

i have gone to bed of a night feeling a little breathless ,then through the night my wife has had to phone an ambulance ,an exaberation has come on that quickly, i had to be taken off the ferry to france once, it came on that quick. happend to me 5 times now over the last 4 years,doc cannot understand why it comes on so quickly

[Eve3066 in reply to whit]

I can believe it. I was preparing Sunday lunch for my family and suddenly could not breath. No warnings, no time to take rescue meds, when my daughter arrived she had to call an ambulance and take the roast beef home with her.

[sassy59]

I think it depends really on what you take invisible23. Pete, touch wood, does not have to go into hospital often (last time was Jan 2012) as he does have rescue meds which do seem to work. If the infection is really bad though he has to go to hospital and have antibiotics via an iv line as that is the best way to get them to work quickly. I try and keep him well and on an even keel most of the time. Good luck to you and take care. xxx

[Hidden]

We are actually doing a trial up here of 'Hospital at Home' for patients with COPD.

I am a patient representative attending monthly meetings that have been ongoing for over a year in preparation.

The idea is that a patient would attend A&E, receive whatever initial treatment is required then sent home with all the necessary help in place. This would include visits by Respiratory Nurse three x a day plus physio and whatever equipment would be necessary.

It would be a randomised trial with the Dr's in charge of it not deciding which patient will be 'Hospital at Home' or admitted to actual hospital.

This would only go ahead if the patient was willing to do so. I know I would much prefer to stay at home if I could.

I must admit though, that although I was diagnosed 15yrs ago, I have only had one hospital admission as I have always managed to treat any Exacerbations myself. I always have a supply of rescue medication of antibiotics and steroids.

Thérèse

[Hidden in reply to Hidden]

You can't go home if you can't get yourself food or get to the toilet ,some people really struggle and this would not be an option to go home.

[Hidden in reply to Hidden]

The patient has to agree ( and sign a form) before even being considered for Hospital at Home.

All agencies required for the patient would be arranged so the patient could be at home.

I would imagine that someone living on their own wouldn't be offered this, but I am not 100% sure. This is a question I would need to ask at the next meeting.

Thérèse

[Hidden in reply to Hidden]

Good. To know everything that's available,I'm sure about agencies ,it's all about money,be careful not to be treated in a inhuman way.

[eastridingbigden in reply to Hidden]

The only thing I can say to this trial is that it is all about saving money and doing away with the national health service and keeping the hospitals just for the young and fit when the government bring in its health insurance policy insurance companies do not like to have long term illness clogging up there to pay for beds and the trial is not for the patient but big business me personaly would walk away from being on that forum. Because it starts that the patient as a choice and after a short while its made policy that all copd patients are to be treated at home wether they can cope or not and they and there carers get bullied into staying at home sorry dangirl1 I know where this will end up in the end and its not good

[Hidden in reply to eastridingbigden]

The actual cost involved is exactly the same as if the patient was in hospital. This has all been gone into in the years leading up to this trial.

There may be a very slight difference but nothing to write home about.

I will continue to be active in any meetings I am invited to attend, the reason being is that I thoroughly enjoy them and have gained much through them.

Thérèse

[Hidden in reply to Hidden]

It's good to get lots of people with the illness s view,how they will feel .not conjured up by people that do not have a clue what it is like to experience this disease.

[knitter]

I think it depends how bad your condition is at the time, if you are so breathless that you can't reach the loo or get anything to eat, unless you have a helper at home of course then hospital seems to be the only option. I think it depends also on your lung condition, whether it is asthma or COPD

[Hidden in reply to knitter]

Yea I let myself go down that low that I can't do anything for myself,I have no choice but hospital,then I get the medicine I need to stay out in the future maybe,wait n see.as I like to stear clear of steroids and anti., I keep away from people as much as I can.

[moneal]

As Cornish Brian has said nebulisers if misused could be dangerous, taking inhaled medicines with out supervision, especially after an exacerbation could do more harm than good.

So hospitals tend to keep patients under their watchful eye to ensure there are no side effects. My heart rate rockets with nebulised ventolin, and I am a retainer so have to be careful with oxygen.

The tests done when I have arrived at hospital determine what they can do to help me, so although I don't want to go in, I do rely on their judgement.

[Hidden in reply to moneal]

Oh yes ,I get looked after wonderfully,my food cooked for me ,no complaints,I love it ,just what I need as I am so exhausted by then.

[helingmic]

My white blood cells count drops dramatically nd makes me vulnerable to infections. So I get those and it gets me down rapidly.

In this case, I have to have intravenous antibiotic that can only be prescribed at the hospital. they can (this is a very recent adjustment) put me on "Hospital to home" and they can use a pump-like device to carry the treatment on at home. This I just had for a fortnight when the nurse comes everyday and changes this device.

But I'm followed by tests, questions from the nurse and advice. Thus I am not isolated if anything went wrong.

I need the initial steps to be taken in hospital. I do live on my own and have no support when something goes wrong. so I'm for ever grateful to be able to call the ambulance.

There is a scheme, please enquire from the pulmonary nurse (my GP was not aware of this scheme) which is called IBIS, only available in the South East: here's a video:

youtube.com/watch?v=VByEYMj...(Not working as expected?)

Effectively, they try to treat people in their own home. to tel you the truth, I prefer a hospital environment, because when I am ill, I cannot prepare food or do the necessary daily activities like emptying the bin and put it on the kerb-side.

but it might suit people who are still able to do what I cannot do!

I think it is important to emphasize that you cannot cope on your own to the ambulance men, if that's the case. On ones' own to cope may not be an option.

[frose]

I hate hospitals but the thought of coping at home through an exacerbation is terrifying. I have backup meds and a nebuliser but I don't have a bipap nor can I run an iv line in for potassium calcium and aminophylline and neither could I self-trachy if needed. No thanks I'll stick with hospital! It's difficult enough coping at home for the first week back out of hospital!