I had a severe flare - up of my copd caused by an infection & ended up in hospital. Since coming home, I have seen no health professional. I appear to have been abandoned. I am unable to get upstairs to have a shower ( need a shower seat anyway as I am not fit to stand for long enough ).
My world seems to have shrunk as I now live in the lounge - sleep on settee & have a coffee table for all my stuff. I was an outdoor person & now I am unable to even go out into the garden. Getting even more depressed as I know that I am a nuisance to my husband who is having to do all the cooking, etc.
Sorry to appear so self-pitying as I know that a lot of you are worse off than I am, I just need a moan.
Hi sheep_ali adjusting into a new world can be rough it normally changes slowly with gradual decline, only when a sharp drop is felt are we able to observe the that which is now out of reach.
A referral from anyone involved in caring for you too Social Services should have an improved quality of life brought back
chin up no sense in moping
Hi sheep-alis, make a telephone appointment with your GP and ask to access the Occupational Health Team and the Community Matron ask if they can call on you soonest. Explain what you have said here, tell your doctor sa,e. I hope things improve for you soon and you will find yourself managing better.
Take good care. Vee
Thank you, huffbluff & Vee. I have just been feeling so isolated & it is good to know that there is someone out there in the world.
I do not know what a Community Matron is so I am assuming that we do not have such a thing but I will try to get access to Occupational Health.
Thanks again
Alison
Hi Alison, your GP should be able to put into action the community matron for you, usually she will be looking after respiratory and cardiac patients in their own home. If you GP looks blank or doesn't come up with the goods, contact the respiratory team at the hospital that recently discharged you. It may already be in the works but worth you checking or following this up.
Wishing you lots of good care and all the support you need at this time.
Vee
Hi, just an update to say that I have been invited on to a tele-health scheme for copd sufferers. Does anyone have any experience of this? It sounds good to me & hopefully will make me feel less isolated & also pick on any potential problems earlier. Had this been in place earlier I do not believe that my problems would have been allowed to go so far as at one point I was running a temperature of 102F & this would have been picked up on the monitoring a week before I was admitted to hospital. At least I assume that that is how it works.
That is great news Alison, I don't have personal experience of it but have read up on it and it also sounded like a good scheme to me. Here's to your better care 
- all good wishes.
I will not assume that we are talking about the same tele health or tele medicine as the contracts are with a lot of companies in each area they will have their own system. It would only cause confusion if trying to relate with the system that is delivered.
keep updating
Hi Sheep-Ali,
Maybe you could share your experience of Tele-Health with us, please, if you are comfortable doing that?
Regards,
Robert.
Hi Vee,
If you would, could you PM me with some of your findings re subject. Had sent you a short message on 25/1/13 dont know if you got it?
Regards,
Robert.
Hi, i am very sorry for this bad situation but i couldn't able to understand in which state you are? like GOLD-I/GOLD-II/GOLD-III/GOLD-IV. Don't give up but fight until you win.
Hi jjeremy, Sorry I do not know what GOLD-1, etc mean as I have never had any of these mentioned to me. This is not really surprising as when I was first diagnosed over 3 years ago I was told that I had COPD & given a couple of inhalers & that was it for information. No one does any checks of any sort. The only time that I see a doctor is when I get an excacerbation. This is one of the reasons why I am so interested in this tele-health programme. At least then, hopefully, someone will be monitoring my condition.
Thanks for your support.
Hi Robert,
I will post updates on my tele-health experiences once the thing is up & running ( hopefully next week ).
Apparently it is lead by the district nurses so we shall see how it goes.
Thanks Sheep-Ali,
It will be good to hear more about how you get on. I have been greatly blessed with the backup of a great team of Respiratory Nurses, Chest Consultant, GP and Pulmonary Maintenance team here in Northern Ireland, with the Respiratory Nurses always easy to contact by telephone if I have any concerns. Hope that Tele-Health will help and reassure you re your condition, a condition that I know myself can be scary, frustrating and, at times, depressing.
Regards,
Robert.
It’s ok sheep_Ali. Those are the different stages of this CopD disease. Nevertheless keep updating us so that will be awareness for us to prevent this kind of disease.
Jeremy
Hi,
Just to give you an update- basically there is no sign of the telehealth monitor despite being told that it would be with me in early February.
I have now bought a stick so that I have something to lean on when I get breathless when I am out. I had to get one of the lightweight foldable ones as I have arthritis in my hands & cannot hold one for any length of time without my hands seizing up - it never rains but it pours
Have had telehealth monitor for a week now & it measures my blood pressure & oxygen levels. It also asks some general questions like how I am & how breathless I am. These results are sent 5 days a week to the local district nurses & if there are any obvious problems, they contact my GP.
The practice nurse visited me the other day with a whole load of questions which she had to record. These included my religion, next of kin, how many pets, etc. I asked what this was for & she said it was to get me into the system. What is that about?
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.