Just about Coping

[CliveD]

Hi, this is my first post so I'd like to say hi first, Hi!

I had a serious spell of pneumonia and septicaemia a few years back which nearly killed me. after a spell in ITU I eventually and luckily recovered, but was left with being out of breath and a Peak flow of only 450 on a good day and about 380 on my bad day, god knows what it is when I'm really bad cause I can't blow in to the device. lol!

I had loads of outpatient visits to the hospitals respiratory clinic and had loads of test done, which sometimes made me black out. But finally after about a year of these test i was told i have Asthma and was given a blue inhaler and told no more. Then about 2 years ago I got a letter with an appointment date for me to visit a Practice Nurse at my local surgery's Chest Clinic . My first visit was started with by being told by the nurse that i did not have Asthma but instead had "Chronic Obstructive Pulmonary Disease". Not knowing what it was but knowing what chronic and disease meant it was serious had me in a quiet state of shock, no wonder my blood pressure was higher then normal. Anyway, the nurse done a peak flow test on me and said I had the lung capacity of an 80 year old did some other tests gave me a leaflet and told me she would see me again the following year as these were going to become regular check ups. That same appointment I was given a Flu vaccine and told I had to have these once a year when they were available, I later found out from an internet search that I needed to have an anti pneumonia jab too so I had to go back and ask for one of those too, which i did later get.

2011 I got another letter with my appointment date for the respiratory check up. So I attended as requested only to find out that the Practice nurse did not have me down on her appointments list. She went off for about 5 minutes to confirm I was meant to be there and came back and said there had been a mistake as she did not have me listed in her book. She decided that she would still see me but it would "Have to be a quick on" as she had to attend another important appointment. She tested my oxygen levels in my blood, done a peak flow and blood pressure and that was it. I tried to talk to her about the problems I'm having with getting up in the mornings and exercising which she advised to use my blue inhaler more before doing any of these activities. It does help using the inhaler before exercise but is not much good in the mornings. I also mentioned that I kept getting colds which always resulted in a chest infection, not nice. I was told that when I get a bad cough I was to always go and see my GP regardless as I would need medical attention, Sure enough I get a bad cold just before I manage to get my flu jab and is was really bad. I was having to work too which made the whole thing a nightmare. So I called the GP surgery to make an appointment with my GP and explained I was told to do so by my nurse. I got to see my GP who listen to my chest, said it sounded quiet bad, and gave me prescription for "amoxicillin". A month or so later I got another cold and so rang the GP's again but was told about a Flu outbreak and if I suspected I had the flu I was to not visit but send someone to pick up my prescription, so I did not get to see him again.

So this winter, 2012/2013, is becoming a serious worry for me, in fact I'm dreading having to face the chest infections like last years. I don't know when I'm meant to get my flu jabs but even when I get the jab I still catch a cold and always, always get a chest infection. I suffer from Obstructive Sleep Apnea, which I have a CPAP machine for, but it don't work when I'm all congested and trying to cough all the time. I also have an Umbilical Hernia which sometimes feels like it's going to burst everytime I cough, plus my stomach and chest muscle become so tight and painful when I cough. i have trouble breathing cause of the tightness in my chest and have blacked out from a coughing fit. This all together is why I'm really scared of these chest infections, I feel that one day I'm not going to survive one. I've spoken to my doctor but he just says to take antibiotics when I get a bad cold.

To be honest I'm finding it hard to cope, there's no one I can get help from like parents or a partner. I have my son but I can;t tell him how bad I'm getting as I don;t want to worry him. I struggle with working as I'm too fit for ESA or sickness benefits, so when I do get a cold I still have to go out in the cold morning air fighting to breath properly just so I can pay the bills and keep the house warm. I know this year I wont be able to cope as the last bout I had was really bad, which I could not go to work and have only just caught up with the arrears of bill Etc. that's why I don;t think I'm going to do to well over winter, scary stuff.

Thankfully I found this web community, read loads of your blogs and questions and now don;t feel so alone. I am amazed at some of the help members here get, I wish I had good medical help when I get a chest infection like some of you have had.

Can I get help? advice would be a good start, but words don;t tend to help me much when I'm trying to hack a lung up whilst trying to hold my hernia in and fighting to breath.....

Sorry, i do get somewhat emotional about my current state of health, so I call it a day for this blog entry for now and just ask you all a question.

How do you cope, what gives you the strength to carry on? As I'm floundering here and finding if tougher and tougher to continue on this lifes road. Also any tips on avoiding colds and chest infections would be gratefully appreciated.

END NOTE: For some reason I feel better for writing this, it's the first time I told anyone or written down all this and I feel a sense of relief ??? odd but a good feeling. Thanks for listening

[Gordon57]

Clive, welcome!

I guess you stated typing that on Friday morning or something - wow, what an introduction, but a darned good one.

The obvious one is to say call the BLF helpline on Monday and have a chat with them to try and settle your fears a little. They will be able to advise what to do, who to call, and what to say if you need a flu jab and so on.

I'm just about to go and pick my step-daughter up from work, but will pop back and answer a bit more later.

[CliveD in reply to Gordon57]

Hi Gordon57, thanks for the reply and advice, I will try the helpline on Monday. It is easier to talk then write.

Sorry, I did go on a bit in my blog but really it's the first time I've tried to tell it all to someone especially in writing. Trying to address my dread of the colds/flu in a few sentences was hard, that's why I went on so much.

[Gordon57 in reply to CliveD]

OK, settled back in my computer chair with a cuppa now.

A very informative booklet was produced by Sheffield NHS, don't try and read it all in one go, your head will explode.

sheffield.nhs.uk/respirator...

- it is actually for healthcare workers, but I've found it very useful

In your position I would be asking for another appointment with the practise nurse so they can go over your particular circumstances with you. COPD is a strange thing, everyone is different but similar.

You ask how we cope - we just do. After the shock of finding out you have something you've probably never heard of, yet is the 5th/6th biggest cause of death in the UK, depending on who's reports you read. I live in Doncaster, which has one of the highest rates of COPD in Europe.

Flu jabs are usually advertised by your surgery on things like prescriptions, the tear-off part often has dates and info. If not, a notice in the surgery and/or on their website, if they have one.

Like yourself, I had pneumonia, which seems to have been the start of my problems. I lived with reduced lung capacity, cased by scar tissue, for many years, then stopped smoking, and got worse from there

I think that talking to someone at the BLF next week will help you a lot, start there then come back and ask more questions if you need to.

[CliveD in reply to Gordon57]

Thanks Gordon57 for more helpful advice. I will muse the booklet your linked to, I doubt I would be able to read it all in one hit but will heed your advice

I will phone the surgery on Monday too and find out about the dates for the flu jabs, I think i got my last years jab in November so I'm guessing that's when they start doing them.

Coping with a disease that you've never heard of or know anything about in a mind bender, and coping with the results of the physical illness itself is quiet a strain sometimes.

Do you know if there are stages of COPD, like stage one just a cough and stage Five just a coffin. Or is it just from bad to worse? What I mean to say is is it just going to get worse or it's just going to be the same as I already am? I could cope with the latter, but not sure if I can cope if this is going to become far worse.

[Gordon57 in reply to CliveD]

A very cynical view of the illness - "stage Five just a coffin" ?

Wikipedia has a copy of the GOLD scale, which explains the 4 levels of severity, based on FEV1 scores. en.wikipedia.org/wiki/Chron...

- scroll down to just past the x-ray image.

Warning, if you do visit this Wiki entry, the picture near the top of that page is not fruit malt loaf or spotted dick...

[moovin]

Good to get your misdiagnosis of your chest happens to often if you do not get the right test they will not get the right results (looking for copd with peak flow unbelievable)

[CliveD in reply to moovin]

Seems unless you ask they won't say, but I don't know what to ask and when I do I get told things I don;t understand properly. Seems there's no instruction leaflet with my condition.

[amagran]

keep coming here to your copd family, not only will you learn more about your disease, you'll make new friends too.

[amagran in reply to amagran]

its good to vent

[CliveD in reply to amagran]

Thanks amagran, I have already learnt more about copd by coming to this community then I've ever got from the professionals.

I can't really come to terms with my copd at the moment, but I'm glad I've found some people who seem to have manage to, hope this rubs off on to me.

Thanks for making me feel welcome

[Hidden]

Clive, ask for a referral to your local hospital. You should see a respiratory consultant who can arrange to do xrays, etc and check your breathing properly. Peak flow is good for asthma sufferers but not helpful for COPD. Use the BLF helpline and remember, we are all in the same boat and can reach out and help each other. x

[CliveD in reply to Hidden]

My local hospital that's dealing with me is Hereford, about 80 odd miles round journey from where I'm living. Plus I'm petrified of them. ever since my experience with the pneumonia and septicaemia that nearly killed me. I still can;t touch my tracheostomy scar

I will, when armed with enough info from you all and an understanding of the jargon, go and see my GP and get more help if I can. But, I do feel like they don;t have much time for me because I'm overweight and used to be a smoker. I feel like they are implying that I bought this on myself and so must suffer the consequences by myself.

Thanks for the reply auntymary, I'm feeling better knowing there's others like me out there

[Daxiemad]

I agree with Aunty Mary Clive I feel quite strongly that a referral to a respiratory consultant would be most valuable. I have Asthma not COPD, but a confirmed diagnosis from a consultant would be a great starting point. As for taking antiboictics for a cold, well generally whether asthmatic or COPDer I feel this should really be recommended in the first place by someone like a resp/nurse or doctor not practise nurse or GP. What happens if you get a bacterial infection and you have become used to the medication. I say get more qualified advice! As per peak flows well if I had a PF of 380 to 450 would feel marvellous, so as Aunty Mary says maybe not a useful guide for a COPDer.

[Hidden]

Knowledge is power and I think you should bone up on everything (reputable) you can find. The more you know about lung disease and COPD the more control you can take over it.

I have only mild COPD and wish had a PF like yours! Mine is usually aroung 300-350. Was told at my age (58) it should be around the 450 mark.....oh well.

Bev x

[valm]

Hi and welcome x

[Lynne1955]

Hello from me too. Lots of good advice given already. When you ring the BLF helpline, ask them for their pack and DVD about COPD. That will give you useful infomation. Beware of some websites that are inaccurate and will just scare you, stick to reputable one's.

Let us know how you are getting on.

Lynne

[libbygood]

Welcome to the site, you'll get lots of support and good advice.

Libby

[Perce]

Hope we can chip away at your problems bit at a time so things start looking a bit better for you.

[jackie50]

welcome to the site, the first thing I did when I was diagnosed was go to a breath easy group, I learn't a lot from them. The main thing I learn't was life is not over you just have to adjust. I have had to fight with the medical profession for answers and to be treated properly, still do when I see a new doctor. But keep coming in here and it will help.

take care

xx

[nannie63]

Hello Clive, nice to meet you. You do seem to be going through the wars at the moment, however if you take on everyone advise l am sure you will feel able to cope much better and hopefully know you have plenty of support on this site.

Take care Marilyn x

[CliveD]

Thank you all for your helpful advice and kind words of support, it all means a lot to me.

I was not able to see ahead of me as I was in the dark, but now I've found this community of beacons kindly guiding me to the light. Thank you all and I will heed the advice given and will seek proper medical help

I will keep you all up to date on my progress as I've found this BLF blog community rather helpful

I wish you all happiness <3

[sassy59]

Hi Clive, You have and will continue to have, some really great advice on here. We are all here to listen to each other and help where we can. I care for my husband Pete who has COPD amongst other things and he always has the flu jab. I do too being a carer. We use antibacterial sprays, hand gel and tissues and always wash our hands. As has been said, knowledge is a powerful thing so think of cold germs as nasty little critters that need to be got rid of. Try and stay away from anyone with a cold, not easy I know, and take as much care of yourself as possible. Pete also has an antibiotic every other day as a maintenance dose to try and prevent chest infections. I do my best to think and plan ahead but if you live alone you need to do that for yourself. Good luck to you and hope things work out well. Stay well. xxxxx

[lavender1]

Hi Clive Welcome. This site has made me so much less frightened about COPD and having only found this forum recently am so grateful as like you I always dread colds

and also visiting GP. The people on here are very caring and knowledgeable and you

are also to be congratulated on coping so far on your own and probably hiding most of

your fears from your son. Some of us on here are overweight (I was embarassingly underweight had the frightening exrays etc) and some of us smoked but that does not now deter me from asking questions at the the G.P appointments,. my priority is not to be a popular patient who pretends to be fine. I am at the doctor for good reason I am ill and my priority is to stay relatively healthy and cheerful for those around me and particularly for my son who worries although not unduly anymore and nor do I having the people on here to relate to.

[poeticlady]

hI i have been an asthma sufferer since aged 17 i,m now 51,my peak-flows average 200,but got the news of copd eariler this year at stage moderate,have been told they will not go higher now as copd is not reversable like asthma is,if this is of anyhelp to you.

[CliveD]

Hi everyone,

I'm sorry I've not replied to your comments yet. My Pc died and I've had to wait for a new one to arrive from Dell, which seem to take over a week for some reason. Anyhow, got the new PC and it's now all set up, YAY! So I can reply and chat to you all again.

Bad news at the moment though is I've caught a cold off a friends 4 year old boy and it's gone straight to my chest. Last night was really bad but this morning just getting out of bed dressed and down stairs had me fighting to breath properly. Thank Goodness for the Blue inhaler.

I've got to go to work this morning but I think I'll have to take the day off and go visit my GP this afternoon for some help and amoxicillin.

So if I'm home this afternoon I'll get around to updating you all on what I've done to seek help using your advice. It ain't much as being without my PC left me unable to check the comments here for addresses and phone numbers, and visit this website.

After settling down this morning, with the help of my "Areo Chamber" thingy and the blue inhaler, which is easing my breathing a bit. Plus a couple of pain killers for the pain in my head and chest from trying to cough up what ever is bubbling away in my lungs. I opened up my eMails and got and read the update eMail from the "British Lung Foundation on HealthUnlocked" and thought I'd come by again and say hello, HELLO!

[maxer]

Hi Clive. I am knew to this site as well. I too attend Hereford hospital chest clinic where I was diagnosed with bronchiectasis and a small area of fibrosis. I was frightened when I got my diagnosis but am getting used to the lack of breath now.. Its daunting to think that things are never going to get completely better and that we have to live with our conditions.