Living with COPD

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Alistair Posted: 02-23-2009 2:52 PM

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How has COPD changed your life? Are you coping with COPD? Discuss these issues and more here.

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replied on 02-24-2009 2:26 PM

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Hi my name is Keith I am 46 years old and I have Alpha-1 Antitrypsin. Deficiency

Alpha-1 is a lack of alpha-1-antitrypsin in your blood. It becomes important only when the concentration in your blood is less than 20 per cent to 30 per cent of what we would normally expect. When alpha-1-antitrypsin levels get this low, your lung struggles to defend itself against destructive enzymes. This means the enzymes can begin to destroy healthy lung tissue. A1AD leads to emphysema – especially in people who smoke. I have had it for 8 years now and I have been lucky to not be on oxygen so far but I am now getting near the limit, I have just come out of hospital this week where I had to spend a week on oxygen which was not nice so I hope I can keep off a lot longer.

Having spent a week on the HD lung ward with people like me, I was surprised how many were on their own never talking to anyone who had the same disease I thought I was the only one who did that I never spoke about it and I never see anyone with my disease just because they may be worse than me I just did not want to look in to my own future how very wrong I was.

At the beginning of last year I was sent on a pulmonary rehabilitation I went with my wife it was one of the best things we have ever done we meet some very nice people that we still keep in touch with.

Rehab

these are individually tailored classes to help you increase your lung fitness I never done any fitness training but at the end of 6 weeks I felt so much better all I ever did was take my drugs and just cope now with the both I feel good about myself I also joined The British Lung Foundation

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Chris replied on 02-24-2009 2:56 PM

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 Hi just a small introduction,my name is Chris aka Wisk@s on the internet,I'm 39 years old and found out I had Emphysema in December 2008.

I don't really know alot about the disease as yet because I'm still trying to come to terms with it.My consultant is being very not forth coming shall we say which is why I've turned to the BLF.

The changes to my life so far have been quite dramatic which has snowballed me some what but onward and upward is what I like to say.

Hello,Alistair and Keith.

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Shibley replied on 02-24-2009 3:10 PM

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Hi Keith. Welcome to the forum and thanks for sharing this.

May I introduce myself as one of the BLF team.

I would be interested to know about your experiences: particularly regarding

1  was it easy to find out more about your underlying condition? 

I only ask because the BLF does a leaflet on alpha-1 antitrypsin deficiency.

2  what particular aspects of the pulmonary rehabilitation course did you find useful?  are there any particular aspects that you would have liked to have done more?

 all best wishes.

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Shibley replied on 02-24-2009 3:22 PM

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HI Chris,

 Thank you very much for posting this. May I introduce myself as a member of the BLF team.

 The BLF publishes some information about emphysema on the BLF website.

http://www.lunguk.org/you-and-your-lungs/conditions-and-diseases/copd.htm

It may be worth contacting the BLF helpline - the phone number is on our home page.

 http://www.lunguk.org/supporting-you/helpline-advice-service/index.htm

I hope this helps.

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Alistair replied on 02-24-2009 4:38 PM

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 Hi Barbara,

Welcome to the forum!

It's clear from your post that you have made some really positive changes in your life, and it's great to hear that you are feeling the benefits of improvements in your diet, and from exercise.

We hope you find the BLF is a useful source of information and support  - via the website, the helpline and hopefully, these chat forums as they develop!

Alistair

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Maureen replied on 02-24-2009 4:48 PM

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 Just to say Hi and introduce myself.  My name is Maureen, I was diagnosed with Emphysema in 2004,after a bout of pneumonia.  When I was told I would need to use oxygen for 15 hours a day, I thought my world had come to an end, what a prospect.  Anyhow, to anyone who might be faced with this in the future, it's not as bad as it sounds, the 9 hours off, gives you a better quality of life.  I was able to come off it after3 years, which just goes to show, that when they say it's for life, it might not be.

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janicenorfolk replied on 02-24-2009 5:07 PM

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Hello everyone, just to introduce myself, I'm Janice I'm 59 years old and I have had copd for 18 years. I was diagnose when I was 42 and told I had 31% lung function. Like Keith I also have the hereditary type so although my GP diagnosed and treated me for asthma it came as no surprise to find I had copd like my mum.

The best thing that happened to me was going to pulmory rehab 5 years ago. At last somebody was offering advice on the correct way to breathe and also practical advice on living with the condition. We were also introduced to Breathe Easy and started a local group. It really helps to meet other people in the same boat, I would suggest getting in touch with the local group even if you can't get to the meetings. I think we are lucky in this area as we do have a very good respiratory service and have pulmory rehab, but I know others are not so lucky.

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Chris replied on 02-24-2009 7:06 PM

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Hi Shibley,

Many thanks for these links.I did however receive these in my welcome pack when I became a member.

As I said its still early days for me,I've only seen my consultant twice and my next visit is in April where I shall spring the question of Pulmonary Rehabilitation on him.

The BLF has been a great help upto now and have even enrolled me on the pilot telephone counselling sessions which will take place next month.

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replied on 02-24-2009 8:18 PM

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Hi my name is val  had copd for over 2 yrs, find it quite hard to cope with lost of chest infections

and medication. ohhhhhhhhhhh and im going to be a grandmother in june

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SusieQ replied on 02-24-2009 8:57 PM

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Hi Everyone,

My name is Sue, which is probably fairly obvious!  I am 64 and retired and have had COPD for around 10 years.  Started as late onset Asthma and then, probably because I continued smoking, developed into Emphysema.  Also have a touch of bronchietasis, which complicates matters a little.  I did the pulmonary rehab course about 3 years ago and that was when they discovered that I might need oxygen.  Was not happy at first and it is restrictive, but it does allow me to have a life.  I live on my own, but do have some very supportive friends, who recognise my limitation and make allowances for them.

I agree with all who say exercise is key ... I do yoga and breathing exercises and also go the a small gym, where a personal trainer keeps me up to scratch.  I exercise on oxygen and have to rest and cannot go very fast, but it makes me feel better and is making me stronger.  Something about increasing muscle which in turn increases oxygen and blood flow around the body ........ not too sure of the technicalities, but it feels sensible.

Like others I watch what I eat (although in denial about chocolate!) and avoid certain foods.  I also make sure I have regular back massages to give my lungs more room for movement.

Finally - feel very lucky to live in Bristol as we have (in my view) a fantastic respiratory dept at Southmead Hospital and I have a brilliant GP, who is very lung aware.

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replied on 02-24-2009 10:19 PM

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Hi my name is Hazel and I was diagnosed just this pas 6 months with copd.  i started with serious chest infections which hospitalised me twice in one month.  I now hace asthma and recently have had 2 months of bronchitis.   I have had a total of 22 courses of  antibiotics and 4 courses of steroid tablets in the past 13 months.  At the moment I am feeling better than I have for a very long time.  There is no history of respitory problems in my family.  I am a non smoker and have never smoked.

My doctors are not forthcoming with information and I really dont think my treatment it was 7 months before I saw  a specialist. was actioned quickly enough when I first developed the problems

Hazel

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Chris replied on 02-25-2009 12:15 AM

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 Hi Hazel,

Your not by any chance under the same PCT as myself are you?

Just wondered because you seem to have had the same response as I did.

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neilkelly replied on 02-25-2009 10:42 AM

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Has anyone tried Buteyko as a breathing exercise?  My teacher assures me he has helped many COPD sufferers.

Regards

 Neil Kelly

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SusieQ replied on 02-25-2009 10:46 AM

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Neil - that is very interesting.  I have been told that Buteyko is brilliant for asthma sufferers, but no good for emphysemics!

Having said that met a chap at a yoga breathing course (fantastic place called Ickwell Bury, sadly not longer functioning) who said that Buteyko had helped him no end, but could not be sure whether it was his asthmatic bit that had been helped or emphysemic. 

Wonder where the truth lies - did have it explained to me once and it made sense, but have forgotten it now.  Anyone care to explain how and why it might help?

Thanks,

Sue 

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replied on 02-25-2009 11:52 AM

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hi hazel

my name is keith and you sound just like me i had no history of respitory problems at all i was a very fit man then one day I got up for work and I had a very bad chest infection I had a lung Disease called Alpha-1 Antitrypsin. Deficiency ,it took them 2 years to test me for it and the test only takes 1 min I will post you a link for apha-1 uk for you to have a look at http://www.alpha1.org.uk/article/alpha-1/what-is-a1ad/  as this may help you.

keith

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replied on 02-25-2009 2:57 PM

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Thanks Keith for the link .  Iam going to have a look.  I just wish the doctors were a bit intune with the patients instead of fobbing us off with prescriptions.

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suefletcher replied on 02-25-2009 7:20 PM

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 Hello all, interesting to read your experiences.  My name is Sue and I live with my two lovely cocker spaniels.  I hope you don't mind me joining in, I don't have COPD, but care for my dad who has it....he's 87 and has always managed well and has been independent. He was diagnosed a couple of years ago and until now has managed on his own.  Unfortunately recently he had pneumonia and spend 3 weeks in hospital and came out on 18hrs of oxygen and can't now live alone and has moved in with me.

It has been quite a shock for both of us to go from independence to needing me to care for him and coping with the oxygen, but we are getting used to things a bit at a time. 

Wishing you all good health...and look forward to chatting with you, take care x 

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suefletcher replied on 02-25-2009 7:39 PM

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Thank you x 

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replied on 02-25-2009 7:43 PM

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Hi everyone, my name is David and I have had Emphysema since 1991 at which time I stopped smoking.I was on 60-80 a day. I have taken numerous inhalers &  tablets and now I'm on Oxygen 12-15 hours a day, I also  have bladder cancer and Atrial Fibrillation all caused by my smoking.  The one good thing I have is my Wife who looks after me night and day I would be completely lost without her. I found carbocisteine capsules very good for anyone who as trouble clearing away the mucus,it thins it down making it easier to cough up.

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suefletcher replied on 02-25-2009 9:32 PM

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malcomselley:

I find that it is very difficult to find out information to a problem or issue.  Information from the GP surgery is scant or they find it difficult to find enough time to answer your questions.  When to seek help for the doctors, do you go when your symptoms change or do you wait to see if it will get better on its own.  It is a huge learning curve for someone who learns they have COPD

We find that too Malcolm, that why I find the net so useful ...and this forum..thank you BLF !

David ...dad has those tablets to they do seem to work.

Wishing you both well x 

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SusieQ replied on 02-25-2009 9:48 PM

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malcomselley:

I find that it is very difficult to find out information to a problem or issue.  Information from the GP surgery is scant or they find it difficult to find enough time to answer your questions.  When to seek help for the doctors, do you go when your symptoms change or do you wait to see if it will get better on its own.  It is a huge learning curve for someone who learns they have COPD

I find it appalling that the care is unequal across the country.  I have a GP, who is very lung aware and if ever I need an emergency appointment, I never have a problem getting one;  the local hospital has a very good respiratory department and I go there once a year for a thorough check on my progress and also have access to a dedicated respiratory nurse, whom I can ring at any time and ask any question.  One thing I have learnt to do (mainly because I got a severe bo***cking from my GP) is to make contact with my GP if I have any concerns whatsoever.  Oh I also have to go and see GP once every 6 months to review my medecines .... they never change but it is a chance for us to talk about what is happening to me.  Reading what Malcom has written, I feel very lucky and wish that others had access to the same excellent support ......... actually some of you probably do, but we should all have that.

Out of curiousity - I believe the BLF fund nurses in the community - what do they do, I wonder?

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jspurling replied on 02-26-2009 3:33 PM

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 hi  let me i. I dont  suffer  from  COPD but my husband does. he was diagnosed with it  4 years ago. His is occupationally linked. working with dudt and straw and hay with animals. He he had to retire 12 monthsago.the last month of work he had a chest infection and the last 2 weks didnt wok as on antibiotics.octor was treating him with asthma drugs.

Moved to east yorkshire where care is great. he was inhospital for 12 days in may and 8 days in october. been on pulmonary rehab which was great.go to breathe easy club each month. in hospital and at club he is the youngest.

Have a good pulmonary team. Fighting for DLA. going to tribunal in 4 weeks. One doctor wrote to DLA said he could walk 500 yards.that was the day before he was discharged in a wheelchair to live downstairs for 3 weeks.Only has 21 of his lung working and 30% is considered serious..been fighting this for 11 months.

nyone else had any dealngs with DLA. most difficult thing is not being  able  to  plan  morethan a few days in advance.

Help for wives and partners is also nessary

Finally my  BIGGEST gripe is holiday insurance. Not to go  far  away but to go to friends in Southern Ireland the cost is if you can get it, £300 for a week. So doctors tell you to go on holiday but insurnce costs more than holiday.

Here ended my story. look forward to hearing other peoples lows and highs

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geoff gurney replied on 02-26-2009 3:46 PM

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Hi Im Steve I suffer from emphysema due to an anti trypsin deficiency diagnosed about 7 yeasrs or so ago and my lung capacity is reduced to 20%.  I was in a state of shock for several years and believed if I exercised things would improve. They havent of course tho by doing my utmost most days I can cope. As for going for walks, if only. I can manage about 20 paces then need to lean on something. Its slightly better in the summer. I tried pulmonary rehab and altho they worked hard by the time I got myself into the car and driven there and rhen did exercises I was good for nothing else, so now I use my exercise bike and dumbells and Im sure that works for me. Im lucky in as much as ive never had phlegm but it takes little to use all my own oxygen and then Im in the 'out of my depth' syndrome.

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SusieQ replied on 02-26-2009 4:13 PM

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jspurling:

Finally my  BIGGEST gripe is holiday insurance. Not to go  far  away but to go to friends in Southern Ireland the cost is if you can get it, £300 for a week. So doctors tell you to go on holiday but insurnce costs more than holiday.

If you get two copies of this, my apologies.  Did a response and the machine just swallowed it .......... to come out at a later date?

Have you tried http://www.freedominsure.co.uk/.   Have heard that they are good with some serious medical conditions, so might be worth a try.

Good luck,

Sue 

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SusieQ replied on 02-26-2009 4:16 PM

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jspurling:

Have a good pulmonary team. Fighting for DLA. going to tribunal in 4 weeks. One doctor wrote to DLA said he could walk 500 yards.that was the day before he was discharged in a wheelchair to live downstairs for 3 weeks.Only has 21 of his lung working and 30% is considered serious..been fighting this for 11 months.

nyone else had any dealngs with DLA. most difficult thing is not being  able  to  plan  morethan a few days in advance.

Have you challenged the Doctor?  My first application was turned down because the Doc said I could walk 100 metres or yards or something, so phoned up respiratory nurse to ask what was going on.  He had just taken the information from my file - not checking whether it was up to date!  Re-submitted and the nurse filled in the relevant bit and got the consultant to sign and hey presto .... top rate mobility and medium rate personal care (because I am on oxygen).

So challenge and get some fresh evidence.

Good luck,

Sue

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Shibley replied on 02-26-2009 4:18 PM

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Message for "jspurling" (and others)

Anybody is free to join as a member of the British Lung Foundation (by calling 0207 688 5610) or going to: http://www.lunguk.org/getinvolved/membership/Become_a_member_of_the_BLF.htm

You would then receive a welcome pack, which includes all the publications available for your condition (or conditions you’re interested in.) 

You would also get ‘Breathing Space’ magazine 4 times a year, which keeps you up-to-date on lung disease research. This magazine also has useful articles about various lung conditions and about living with a lung condition.

Members also get exclusive access to back issues of the magazine online to read articles about their condition.

 All the best.

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Chris replied on 02-26-2009 7:31 PM

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Shibley - Moderator:

Members also get exclusive access to back issues of the magazine online to read articles about their condition.

 All the best.

Many thanks for this info Shibley didn't realise we had access to the back issue.TBH I've not read all the info in my members pack yet.

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jspurling replied on 02-27-2009 4:35 PM

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  thanks  for  the  suggestion  of  the  insurance  company  will give  them  a  call.

Re  DLA  The  second  time  my  husband  went  into  hospital  he  had  a  different  doctor. Told  him  what  happened  and  he laughed said  husband couldnt  walk  50  yeards  let  alone  500. He  wrote  a  letter  which  has  been  submitted.Also  pulmonary  nurse  has  written  two  letters  explaining  different  things.

Hopefully we will  be  awarded  something. Tribunal  date is  set for 3 April, the  day  after  his  65th  Birthday. If  we  get  it  there will be a lump of back allowance. Applied in May. He  has  a  Blue  badge. was given that  on  an  interview.

Re  joining  and  getting  bvreathe  easy  magazine  etc. Thank  you  we  are  members  and  have  been  for  a while. Find  infomation  very  interesting.

Did anyone  hear  the  programme  are  you  normal on  Wednesday  4.30  radio 4? I  was  told  about  it  and  listened  to  it  online. A lot  of  infomation  in  it. Very  interesting. A pity  that  pulmonary  care  is  still  a  lottery  as  to  where  you  live.

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SusieQ replied on 02-27-2009 10:28 PM

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Fingers crossed that it works out on the 3rd April - does sound as if it should as it is similar case to mine - and you are right, it will be backdated to date of application ............ should pay for your holiday!!!

One other thing, if he is granted top rate mobility allowance, did you know you could give that up in exchange for a car under the motability scheme?   http://www.motabilitycarscheme.co.uk/main.cfm?type=CS

I had to pay a little extra because of the car I wanted (you can choose what you want, although not sure that Ferrari has signed up yet!) but got mine a year ago.  Although I no longer receive the mobility component, I still receive the personal care bit and the best bit is the car only costs me the petrol I use - everything else is paid for by Motability.  I will get a new car in three years (now two) time and if I give it back in good condition, they will also give me £200. 

Sue

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margaret1 replied on 02-28-2009 2:36 PM

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hya malcolm......i too worked in a FE college until my condition became too severe...nearly 4 years ago...since then i have picked up some ideas ...i hope they help 

*******this should show a simple graph     ******* it will not import from my document sorry

Blue line lung age/condition

green line time

red line death

this is what happens naturally to everyone...of course our heart might stop or get knocked down or whatever at !!! so we would hit the red line

with copd the graph is a little different

***** this should show the same graph but with steps going down instead of a straight line

it steps down towards the red the steps are exacerbations i.e. chest infections etc.....every time one of these happens copd sufferers never recover enough to get back to where they were before and so the red line becomes nearer

I am no medical expert just someone with the condition trying to cope and survive the best way I can.......in 1999 at the age of 54 my lung condition was 30% of what it normally should have been.......in 2005 at the age of 60 it had reduced to 15%.......since then the condition has not changed a great deal.....so how?????

these are just my own thoughts and feelings so here goes

I have not smoked for 5 years......i now very rarely get that horrible green gunge on my chest.....in fact the only time I do is when I pick up a cold

I take my medication at the proper times …... I can recognise when I am not too well and get a course of antibiotics and/or steroids

I have a very good health care team and listen and act on advice given I also ask questions if I am not sure of anything

I have completed a pulmonary rehabilitation course nearly two years ago and it was so good we still meet up and exercise and have a chat an hour a week

I have moved into a little house with no stairs......i pay someone to do the heavy work in my house so I don't get over tired

even though I sometimes get down in the dumps I always try and look on the bright side of life...in fact we have called our exercise group the jokers we are always laughing and having fun

copd is a horrible condition but don't let it colour all of your life …....i have had to give up lots of things in my life I enjoyed but I have filled it with other enjoyable activities.......computing is only one!!!!!

sorry about the missing graphs it took me ages to draw them in colour as well...i always say a picture paints a thousand words but not on this site !!!

i hope this bit of chat has helped ....keep smiling.....margaret

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Chris replied on 02-28-2009 8:39 PM

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 Over the last couple of days my walking distance has decreased by roughly half due to my breathlessness having been more frequent.Its early days for me and Emphysema so I'm a little bit green on the subject.Is this likely to be an  exacerbation or could it possibly be down to the damp weather?

I know in a way its a medical question and I should probably see the doc but I don't want to make a fool out of myself and waste their appointments if that makes any sense.