Copd - care after hospitalisation

Forgot to mention one other thing- I have got an appointment for "Nurse led oxygen assessment ". What is that?

Febuary 20012 I too had a serious exacerbation and was hospitalised I only just survived but since then have had the support of respitary nurses have been on a pulmanary rehabilitation course and whilst I have to. have oxygen for a few hours a day I am coping.One nurse told me that the trick was to stay as active as possible for as long as possible and whilst it isnt aways easy i exercise 3 times a day someti mes sitting but I know this has helped.Also at the risk of you thinking I am completely mad I have recently started to take a completely natural medicine for horses with copd.The advertising said if it doesnt work you get your money back! I can honestly say it has helped amazingly.The difference between getting up the stairs or not,walking the dog or not,lots of things.I am scared to tell you what its called on this sight in case it isnt appropriate. I would like every one to try it.How can we communicate. Virginias

you need to get in touch with your GP and ask for a visit from a nurse to assess your needs and find Age Concern ( who have changed their name I think) they can help you with all kind of aids to help, I got my bathroom refitted, a bannister on the stairs, a wheelchair and eventually an oxygen machine. All kinds of stuff, including more money but I had to ask for help initially. i was told in hospital that they could do nothing for me and sent home, where i lay and expected to die for a few days, eventually I got bored with that and got up. Once you get the ball rolling all sorts of home visitors should arrive, the aim is to keep you in your own home with a manageable life style. My son is my carer and he is good to me but I live on my own next door to him. After the barage of visitors have gone things should be a lot more pleasant and you will get used to doing what you can for yourself. best of luck

Thank you for your advice. I was unaware that Age Concern could help. I will make enquiries.

I now feel able to give my feedback on the telehealth monitor.

In the main, it is positive but I find it a bit disturbing that the nurse can prescribe antibiotics and steroids based solely on my responses to the limited questions asked by the programme.

This makes me feel as if I am self-diagnosing which was not how I understand that it would work.

It is comforting to know that someone is looking at the readings which I submit on a 5 days a week basis - not weekends because there is no doctor to prescribe!!

The last time I had antibiotics and steroids, I reacted badly. I was so itchy that I was clawing my skin raw without any relief. I had to use surgical spirit to cool the heat.

This was reported to the nurses but it was not passed on to the GP so I am more than a little wary of using the same medicine should I have another exacerbation.

I had a lung function test to see if I had copd . After being diagnosed 4 years ago I thought it was a bit late. I was told by phone when I chased up the results that I have copd with "gas trapping ". I do not know what that means.

My GP has now told me that I have copd with asthma. Is that the same thing ?

I just wish that I could get all this explained to me so that I knew what was going on or what to expect.

The beautiful summer which we have just had was somewhat wasted on me as I get out breath just making a coffee & I get sooo frustrated because I see so much that needs to be done & I cannot do it.

The house is a mess and I am so ashamed. It takes me 3 hours just to wash the floor using a mop.

Sorry for going on so much but I had to get all of this out.

Hi Sheep Ali, I know how you feel about self medicating, you will get used to the caring profession as time goes by. My nurse is very nice but to me she goes over the top with her medication so I usually half it but that doesn't mean that they are all like that so don't do anything radical. You will find your way and what works best for you. Now never mind the house, learn to wear blinkers nobody is going to keep it the way you did when you were well, I find if it gets cleaned this month next month it will just want doing again.

Don't know about the gas trapping thing, never heard of it. Have you got a stand-by pack of medication so you can start to take it if you get a chest infection? It lasts a few days while you make an appointment to see a doctor. If you nip it in the bud early it is easier to control. I find I can taste a chest infection as soon as I wake up

Age concern did a lot for me but they have a list of what they can do so when I wanted a chair in my bath so I could sit instead of kneeling in it, they said they could give me a stool which was about a foot high. Well imagine how that worked out. However they could supply me with a shower, two hand rails, new air vent, nonslip lino, new light fitting (which they later took out and put a more sensible one in) handrail for the stairs and probably things I have forgotten. So I bought my own shower chair and all was well.

I am in a wheelchair now and oxygen most of the time but before that I bought a wheelie walker, these a wonderful things. A Zimmerframe with wheels, brakes and a seat so you can either rest by leaning on it or sitting down. I used to love getting out on my own with it even if I just walked one bus stop the freedom was wonderful. I don't do the tele thing as we agreed I am much too busy with my computer and it would only annoy me any way, i am an old hand at COPD and will know when I need help. If there is anything I can help you with I will try. Main thing is keep calm, eat right, do some simple exercises. Have you been to group exercises that the physiotherapy nurses do, you might find them useful, usually twice a week for 6 months. June

ps the reason the surgery gave as to why nobody came to visit me when I came out of hospital 6 years ago was that they didn't know I had been in never mind come home again. A little joined up thinking would be a good thing. June

Hi June, you are so right about the joined up thinking. My surgery cannot use the excuse that yours did as they were the ones who sent me to the hospital.

I never see the nurse. They just phone me if any answer I give appears to be strange.

You are right too about the housework but it is so bad that I fear it is a health hazard !!

The physiotherapy is not an option for me as I live 35 miles from the nearest place that might do it.

You sound as if you coping with this condition much better than I am. Mind you, that would not be difficult as I am not coping at all. Alison

so sorry to hear that you feel you are not coping as worry leads to stress. I have accepted that there is nothing I can do about it any way so I don't worry. My son does my shopping, washing, changing my bed, makes my dinner, keeps an eye on my health, sorts things out when I get hysterical because I can't breath. Looks after three dogs a pygmy goat, a peahen who has been deserted by her rat of a mate. Occasionally he will vacuum but he also has his own house to look after. So what do I expect for the money he gets? Wonderman! So we are now offered a machine to prog information into instead of care in the community, I just laughed when they asked if I would like one. What, I don't have enough to do? I don't always cope with things, I am often scared and sometimes terrified if the breath won't come out, but I'm still here. I guess you could find enough exercises online if you wanted anyway, at the moment I am just doing leg ones as it helps to keep the night cramps at bay. I had the physios come to my house twice a week a while back. Have you got an oxymeter? I use mine often during the day and night mostly for my heart. The oxygen we get through the cannula isn't specially for your lungs, after all they are not going to get better. It's to look after all of the organs, specially the heart which needs oxygen rich blood. I'm probably telling you stuff you know but I would never remember who i said what to anyway. PS A doctor came to my house and signed me into hospital, I guess it never occurred to them to wonder if i came out again. June

Can I borrow your son, June? He sounds brilliant. My husband expects things to continue as normal. He appears not to know where the vacuum or duster is kept. I only get the low rate of care so it is not enough to pay for anyone to come and do things properly. I think my husband is in denial in that if he ignores it, it will all be ok. I wish. I am not on oxygen. The respiratory nurse said something about the gas trapping making it difficult to get oxygen therapy - or something like that. It was hard to take in the information over the phone.

An oxymeter and a blood pressure pod are part of the telehealth deal.

Re the doctor. I always have the suspicion that they do not actually care.

PS How is your son with the care of sheep and cats ? I see he could take care of my elderly dog. x

Alison

Hi sheep Ali, maybe I could make a clone for you. Well he looked after my elderly dog until Noggin died and the poor old mutt had two years of spoiling. No good on the dusting side and very sporadic on the hoovering. Keeps the kitchen in usable order but very good with the nurturing side of things. We were always good friends and mostly get on well.

I think you should seek a second opinion about this gas trapping thing, look it up online as well. If you need oxygen it wants sorting. I guess long distance care is what we will all be getting soon but I said no thanks. Maybe getting people signed up for it is one of their quotas. As the health service gets more and more squeezed it will be God help us, or self help. Do you go to the Asthma Clinic? Maybe they can refer you to the hospital's Oxygen Clinic, that's if you really want to be on oxygen which is for a minumum of 15 hours a day if it is to be of any use. I do hope things improve for you and I know it's hard to know where to turn.

My day out today and dry so far, we like to go for lunch once a week just for something to look forward to. i have yet to find anywhere that makes a better lunch than my home made salad sandwich but we live in hopes. June