Hi Andy, I am the wife of a COPD/Bronchiectasis sufferer. He has been in hospital quite a few times since June, High dependency unit, cardiac assessment unit etc. He nearly died one day whilst he was there. He is on oxygen, nebulisers,all the medication under the sun. He can't walk to the toilet without being SOB, oxygen only helps prevent the vital organs from becoming distressed and does make the recovery time better, but does not stop the breathlessness on exertion. I have bought him a massive long towelling dressing gown with a hood for when he gets out of the shower to save him messing about with a towel and bought hand grabs and a bathroom seat so he can get straight out and sit down and let the dressing gown do the drying for him. I get everything ready for him on a pile so he has not to go searching for things. He then puts his oxygen back on and sits down until his oxygen sats and breathing are back to normal then he starts getting dressed. It is all about taking his time and making sure he does not leave things until the last minute.
You do not say whether you are on oxygen or not, but when my husband started being really ill in January this year our doctors were absolutely hopeless. All they did was increase or change his inhalers, we asked for a referral to the lung specialist and after 12 weeks we had not heard anything and then found out they had forgot to do it so another 12 weeks went by so for six months he was struggling with chest infections. I had not been out since January 2012 as I could not leave him as when his breathing got bad he was also on his hands and knees and I had to call an ambulance, he had pneumonia and they put him on oxygen and antibiotics and he rapidly improved. They sent him home saying he does not need oxygen and within three weeks he was back in again with pneumonia, and again and again.
The biggest problem I have now got with him is that because he has everything in the house to help him, there is no excuse for him not to try and exercise but he won't, he says he can't. He has been told by the Pulmonary Rehab team that breathlessness won't do him any harm it is just a bit frightening and as long as his organs are protected with the oxygen he can start building up his exercise routing as his muscles are wasting away due to lack of use and that is making him worse.
You also do not say what kind of help you are getting, we found out things changed when I discovered the Community Matron who works for the GP, they didn't tell us, I went online just looking for things in general. I rang the GP and asked for he to contact us and we have never looked back, we have wheelchairs, walking sticks, urinals, emergency antibiotics on standby etc. she contacted the physio who arranged oxygen for when he is walking about.
If you do not have any help then get some and do what I did pester them until they are sick of the sound of your voice. I cannot believe the hospitals, my husband, when he was in hospital all those times, was never, ever told about the Matron and she is the god-send for all the people that are almost virtually housebound and have chronic illnesses.
We went to see the specialist the other day as my husband was getting chest infections every two weeks, the GP would only give him one weeks supply of antibiotics and we told them that one week was not enough, he can tell that he is not quite well enough when he stops taking them so in three days time he is back to being ill and on antibiotics again,
The specialist said that it was ridiculous, he needs two weeks at least to kick the infection into touch and he would write to the GP's. Well you know how long that takes, it would have been well over Christmas and into the new year before they got the letter. I asked the specialist to give me a note to take with us and he did, he signed it with all the instructions and I gave it to the matron who organised the increase in tablets,, and we are now okay until the middle of the new year.
Do you have anyone to help you, my husband could have never done all this on his own, I was the one on the 'phone all the time pestering for things, if you haven't then speak to a friend and see if they can help you out. Your main stop is the Community Matron at your GP's or local clinic, once you get her you can sit back as she will sort things out for you.
Good luck and I hope you really have a lovely Christmas because if you do what I suggest then 2013 will certainly pick up for you.
se in tablets and is is now covered until the middle of the new year.