COPD

[San15]

hiya, i have recently been diagnosed with the condition after having asthma for several years. I spent about 2 or 3 years virtually constantly on antibiotics and steroids and was never tested for COPD until March this year. I have Pulmonary rehab starting next month, i am hoping that i will get to learn more about my condition and learn how to deal with it better. I havent really been told alot COPD, i have had to look it up on the internet to know more about it, all i was told is that i am young to have it as no one else had it in my family, my blood tested negative for the alpha whatever it is and i am only 42.

[Puffthemagicdragon]

I had to look it up on the web to get more information, so I know how you feel. No one has spoken to me about Pulmonary rehab. I assume that's some sort of exercise routine ? I'm 62 by the way with no previous lung problems as such.

[San15 in reply to Puffthemagicdragon]

I was lucky that my doctor immediately told me about the rehab and said that he was putting me forward for it. I was sent a leaflet about the rehab it is in the physio department. They assess your condition, give you exercises there and to do at home, teach you how to cope with shortness of breath, sputum production and lack of fitness, teach you how your lungs work and what changes have happened, let you know about other people and services which will improve your quality of life including pacing and diet, teach you how your medication works and how to control your symptoms at home, gives you opportunites to ask questions about your chest problems and continue to make improvements after the programme has finished. It could be worth asking your doctor about referring you too.

[blancheallen65 in reply to San15]

Thanks so very much

[FarmerD in reply to Puffthemagicdragon]

Hi Puff,surprised nobody has talked to you about pulmonary rehab,I found it really helpful.Not only the exercise part but the information side of it was invaluable.It was my consultant who initially mentioned it to me .My Copd nurse. Is,nt very good and I had to make my own enquiries but got on a course.I now go to a permanent gym class as a follow on.Your gp should be able to point you in the right direction.Good luck.D.

[Puffthemagicdragon in reply to FarmerD]

I appreciate your advice FarmerD but my post about PR was made 2 years ago. Since then I have been on a PR course and found it very helpful.

[FarmerD in reply to Puffthemagicdragon]

Hi Puff I did feel a bit daft after realising it was so long ago I think insanity is creeping up quicker than I thought.lol

[Puffthemagicdragon in reply to FarmerD]

You and me both !

[Hidden in reply to Puffthemagicdragon]

I had only heard of Rehab on this site. I have not been told anything by my GP so it looks like a lottery situation it could depend on your post code and if there is rehab in your area.

[blancheallen65 in reply to Puffthemagicdragon]

I'm 65 and would like to know more about pulmonary rehabilitation

[Shazzy01 in reply to Puffthemagicdragon]

I am 46 and until now, I thought I was quite healthy until I was struggling to exhale when walking and going upstairs. If anyone has any advice it would be greatly appreciated, thx very much xx

[Shazzy01 in reply to Shazzy01]

BTW I was diagnosed with COPD just this monday gone and am quite distraught. I stopped smoking 3 yrs ago so why am I now suffering with COPD. I dnt understand, Can anyone help plz, I feel so alone, thx xx

[Hidden in reply to Shazzy01]

Start a new post Shazzy otherwise people wont see this one and you wont get any replies. Loads of people here who can help you. Robin

[Puffthemagicdragon]

Maybe the Alpha test is to do with genetic susceptibility and yours is negative.

alpha1.org/

[San15]

i think it is

[jojam]

Hi San15,

I'm sure you will find Pulmonary Rehab to be benificial it will help you take more control & manage your condition. It is important to continue with exercises at home & after the course. I'm sure you will enjoy the course.

Best wishes

Jo

[San15 in reply to jojam]

Hi Jo. have you been through the rehab? I will definately do the exercises at home as i can do so little at the moment.

San

[jojam in reply to San15]

Hi San,

Yes I have been very fortunate in that I have done it twice, The second time was following a very severe exacebation where I was in hospital for seven weeks and my lung condition had changed & i had become very weak & had to have long term oxygen therapy. When I returned to Rehb I could not walk down the hospital corridor to the gym even with my oxygen canister! had to go in a wheelchair. After three weeks I was able to walk the corridor slowly pushing my wheelchair, by the end of the course I had regained my strength and mor importantly my confidence. I am very fortunate that my physio do regular 'matinence' sessions whereby we get called in for a once a week session lasting six weeks. It depends on demand how often we get offered this. I am due to return to 'matinence' at the end of the month. I don't thing all areas do this so we are very lucky

I'm sure you will find it helps, don't expect instant results though, you have to work at it.

Best wishes

Jo

[stan5]

diagnosed on the 31/10/10 and told if i did not stop smoking cigars I would be dead !!

I have had 2 blue light exacerbations- in hospital for 4 days each time- but the last was february 2011 nothing since- I am 63 and still at work as a construction manager- sometimes i am so out of breath I panic but I seem to eventually get control again and become embarrassed if it has happenned in front of a client on a building site.

day to day I seem to feel fine then other days I feel terrible- on those days my grandaughter Abby puts her hand on my forehead and says to god please make grandad better - and I am - positive thinking I suppose.

I take lots of medication -tiotropium / sereptide / salbutamol / blood pressure tablets / diabetes night & morning tablets-but please understand me I have COPD and it is a devastating disease that has not been helped in the dusty industry that I have been involved with in the last 30 years.

[stan5]

30 years in the drilling / construction industry -working in tunnels- building sites- drilling concrete and rock upside down / horizontal / vertical holes created so much silica dust - clothes covered in dust continuously breathing in dust- then in 2005 started smoking cigars for relaxation and only contributed to the COPD building and progressively getting worse within my lungs till diagnosed in october 2010 and stopped - full stopped- but the dust had been in my lungs from 1985 onwards-too late- should have been given dust masks and other PPE but employer was not looking after his employees- makes you think if only,if only.

[San15 in reply to stan5]

Hi Stan, i can understand what you mean, by the 'if only'. My grandson who is almost 5 cant understand why i cant do things with him no more and why i cant walk him to school and have to drive there on days that i take him, there again, my daughters dont seem to understand it either. I used to be active, always out digging and mowing my garden in the nice weather, busy with the air cadets as i was an air cadet instructor. I have always suffered with colds easily,. then as i got older my colds seemed to be flu, even when it was hot, then gradually they turned into pleurisey, then pneumonia and from then on, come august time each year, chest infections struck me and constantly on steroids and antibiotics. I am on sybicort, uniphyllin and ventolin at the moment for my COPD.

[Hidden in reply to San15]

San15

Totally understand your comment about your grandchildren/kids.

i used to be very active - in fact during the summer i used to chase the neighbourhood kids half way round town with bucket of water - now i couldnt carry a bucket of water ! like you i get asked to babysit, take the kids to school etc, i have to drive to the school and get scared as my 4 yr old grand daughter will run off when she sees a friend, so i panic and get breathless, then walking to the school is long haul ( its not far but it might as well be 100 miles and my council said i don't fit the criteria for a blue badge) by the time i drop her off i am breathless and tired, the walk back to my car is a killer but i take my time ( no kids so its easier) stopping to get my breath, arrive at my car and sit for a bit to try and get my breatlessness to ease. Usually by now i have the pains in my chest. my son goes from home to school and back in less than an hour - the least time it has taken me is an hour and a half

I love my girls (grandaughters) and we are extremely close but having them overnight can really make me ill and some of the comments made by my kids make me wonder if they believe i have COPD ( my son was with me when i was told !!!!!) by the time they go home i am breathless and exhausted, i also find i need to use my nebuliser more.

My partner is always telling me i must learn to say no! but i can't, they are my pride and joy and i love spending time with them but i think my kids should have more consideration.

the irony is my grandad and dad had emphysema, i have it and i can see it starting in my son ( but he wont listen and see a doctor) and i fear that my son will be like me in 20 years time.

Oh! i feel better for that rant

[Wiggins]

I've found this site brilliant for the advice and information. I've noticed that a lot of people, including myself haven't had a lot of information about COPD from their Dr. I had to look on the internet and a colleague of mine finally found the BLF website for me. Before that I was floundering a bit. You're not the youngest San15, I've come across people in their 30's with it.

[San15 in reply to Wiggins]

I know you can get it younger. It's time COPD sufferers were given more information than having to need to look it up on the internet, lung cancer is given alot of publication, its time this illness is too

[Wiggins in reply to San15]

You're right. An ex manager of mine had to retire a few years ago because he developed it. I bumped in to him only a few days back and he was saying that he went to Florida on holiday and during every TV interval there was an advert about COPD. He says that in the U.S. a lot of air time is given to it. Contrast that to here, virtually nothing, certainly no air time. It's almost like COPD is Britain's dirty secret.

[welshmama]

i finish my pulmonary rehab next week it has been a life saver and i am now a bit fitter and can walk a bit further my breathing is a bit easyer will be continuing my excesize at my local liesure centre which is starting classes for poeple with chest problems and will deffo keep it up at home all i can say if you are offered it GO FOR IT. xx

[Outhwaite in reply to welshmama]

I asked my doctor about this, as the Chest Clinic said they would send me an appointment for Pulmonary Rehab, which they did NOT. However, he looked on his computer which is connected to all Health Centres etc. in the area, and there isn't one for Pulmonary Rehab and I would find it near impossible to travel to the City of London (London Chest Hospital) from the East End of London. This is where I was taken after a heart attack and to have stents fitted and it is the most user unfriendly hospital for disabled people I have come across, no wheelchair ramps etc.only loads of stairs. I have a London door to door Taxi Service card, but it costs over £50 there and back, so is not viable. Anybody know of a nearer rehab centre? I would love to attend one and think it would benefit me greatly.

[San15]

I have definately gone for it, a friend is coming with me to my first appointment, i get so frustrated not being able to do alot and i already suffer with anxiety and depression, when i am having a good day with those illnesses, i then start again, because of the frustration from the COPD, its like a vicious circle at the moment xx

[Eviex]

Hi chick.. I am 42 and was diagnosed with COPD after having asthma for over 20 yrs.. I personally think you are lucky to get the support from your doc i,e the copd rehab thing and Alpha test.. I've had no help at all, my doc diagnosed it and left it at that and of course blaming me for my smoking which I do take responsibility for and blame..but, is that a reason to leave me untreated when I need help..?

Last xmas I had pneumonia which was left untreated by my doc until he eventually put me on 2 lots of anti-biotics in April which of course did not work. I also had a heart attack in between them 4 mths undiagnosed (it wasn't until I had the stroke before my doc did anything for me) To me the pain was all the same to me..

Up to date I have pneumonia again but this time I went hosp instead only to find the spots my doc found on my lungs way over a yr ago are still there and been bleeding..

I personally think most of ya are lucky to have support of some kind, I have none except from those immediately close to me. I can't even get help from social services for my disabled adult child never mind me as a carer..

Sorry for ranting chick as I don't mean to but it gets upsetting to me knowing other people can get their help and I'm still stuck here struggling but like you I got my info off the net and what to expect.. Thank god for internet..

[Wiggins in reply to Eviex]

Hi eviex

I know this will sound pathetic re what you've been through re your GP but can't you change your Dr. Even the practice if necessary. Failing that I'd complain about him/her, there isn't any excuse for their behavoiur, not even ignorance of the condition.

[San15 in reply to Eviex]

I am so sorry to hear that you havent had any help from your doctor, maybe you should change doctors and see if you can get more help. It's been a battle to get the help that i have got now. I have had too many bad experiences by bad doctors, i lost my cousin, almost lost my daughter when she was a baby and almost lost my dad too due to them. I am still battling to get my ESA at the moment. I have had pains in my chest and still get them and dont know what they are or what is causing them. I have my flu jab each year and have had my pneumonia jab too, though i still got a pneumonia virus in my right lung last sept. I agree, thank god for internet in finding out info on things

[Hidden in reply to Eviex]

Hello Eviex,

My situation is similar to yours, I was told almost nothing and haven't been helped to get into any rehabilitation programmes after being diagnosed in 2006, the only treatment I get is an annual check up.

My doctor's assistant tried to tell me that it did not matter if I was exhausted and had not slept all night and that the lack of sleep and tiredness would not affect my spirometric reading.

I told her I am convinced it would.

I didn't have the energy to explain to her at that moment, I knew I was right though.

This website proves my point.

chestmed.com.sg/air-pol...

Preparation for a Pulmonary Function Test

Up to 24 hours before the schedule test:

•

Get a good night's sleep as tiredness can affect the accuracy of the test

[Eviex in reply to Hidden]

San15 I don't think its ignorance I think its becuse I smoked so its my fault whether I have asthma or not but, a close aunt of mine had it yrs and never smoked.

TJohn, I have had the test confirming COPD November 10. 2011 was a bad yr, it took 4 mths and a blood test to prove to my doc I had a chest infection even though I was going everyweek because of it. It took what I thought was a stroke in may to prove to the doc I was having issue enough for him to send me for an ecg which proved I had a hear attack some time in those 4 mth. I went through rapid access who said it was all my breathing so now I don't even know if I did have a heart attack caused by COPD and no one listens to me when I say it was my gps ecg that confirmed it.

I ended up with pneumonia again a few weeks ago and I think these are the same spots that my gp found in nov 10 and just not cleared up.. Now I have high platelettes and it took him a yr to send me to hosp (now being treated)

I have no faith in doc;'s nurses or anything medical because they don't listen to me just my docs records.

Wiggins, I would change gp but I live in a village and would have to travel out but it is a thought on my mind and bugger the extra cost.

Thanks for listening people, I do appreciate it

x

[Hidden in reply to Eviex]

Hello again Eviex,

I understand you on this.

My mother had pain in her stomach, she'd had a fall before, she was really unwell, and the doctor told her it was the ribs,

Mum was in a lot of pain but my sister noticed she really wasn't herself as she is usually like a rabbit darting around doing things

This particular doctor had prescribed her with drugs that were actually constipating her.

My sister realised something was up as my mother was simply sleeping all the time, and so my sister got my mother down to hospital where it tuned out it had nothing to do with her ribs, it was her intestines that were in trouble and as the doctor prescribed her drugs that constipated her, it had caused her intestine to burst, and she was being poisoned from inside; She would have died.

The doctor's fault, he hadn't even sent her for an x-ray, he must have thought he had x-ray eyes.

As it was they had operate immediately at the hospital, she then went into intensive care, could have died, had a large part removed and ended up with a stoma.

I believe you then about your trust in doctors.

This though, with your poor inadequate doctor, is only one, as many are good, you must go and get a different doctor Eviex, you can't go on this way, if it is as bad as that.

You will not start trusting this one and you do need to be able to trust, while always holding onto your own opinions and common sense.

[Hidden in reply to Eviex]

Eviex, I'm also very sorry to hear you had all of that go on without knowing a thing about it, it's shocking to hear, as that is very serious.

Doctors ar still carrying out far too little spirometric tests.

[Eviex in reply to Hidden]

Thankyou both for your kind words. I am changing gp's now.. x

[Outhwaite in reply to Eviex]

Hi Eviex, I would definitely change your GP and/or ask for a referral to a Chest Clinic (as is your right). I also had asthma for 40 years, then COPD after that and was also a smoker. I only gave up 18 months ago after a heart attack, but have always had treatment for my COPD and have had help from Social Services i.e. bath lift, hand rails and ramps for my mobility scooter. Your situation is definitely not right at all. I would change GP's like a flash and get the help you are entitled to. Admittedly I can't find a Pulmonary Rehab unit near me and won't go to the Chest Clinic again, as the so called very young "Consultant" was obnoxious and totally "up herself" and no help whatsoever, but have all the necessary meds and a nebuliser to help me and a good GP who listens and helps where he can.

[tinytears311 in reply to Eviex]

Hi Eviex

I think it is time for you to find another Doctor! He does not sound very professional at all. Is he a reguler Dr or is he a Pulmonary Dr.?

I'm from the USA. I have had copd since 2/2009. I have been in and out of the hospital so much, I almost felt like it was my second home. I have been very lucky for the last 3 monthes. I have had no problems and I truly believe that losing 35 lbs. Has been a very important factor.

Respiratory Rehab is a great choice for anyone suffering from copd or any other respiratory illness. I never used a treadmill, never thought I could do it. Well, in rehab I used it and enjoyed it immensely.

Good Luck to all of you in your struggle to breath and enjoy life. May God Bless You All.

[marjelill]

I have had asthma for many years, now I have COPD too. scan shows I have a build up of calcium in my lungs. But cant find any information on this. I have not been offered rehab. I see my doc next week I will ask him to refer me. How I find out more about COPD? a nurse said if you have asthma it just changes to COPD as you get older, great help.

[Hidden in reply to marjelill]

I'd say that the nurse is incorrect on that, as it depends to which degree a person suffers with asthma, so if not too much or only periodically I think there's no evidence to prove what the nurse told you.

This person was far too general in her definition of asthma.

It's silly for people to still think, these days, that they can get away with saying any-old-thing, I mean these days we have Internet and can look things up!!!

We don't have to join a library hoping to find perhaps one book that might say something on what we are interested in, no we go online and may end up knowing more about a certain ailment than a doctor does, seeing as no doctor can know everything and it is also often common practice to not keep up-to-date, for reasons of being far too overworked themselves so they have no time to carry out research. They re called general practitioners as they are generally not specialised in anyone field.

Which doctor in the world could conduct research on every single illness?

Nope, not happening, so it is not true that only they can know, if you're ill hen you're going to study up o it especially if you are really ill, like people suffering with lung disorders are.

[Outhwaite in reply to Hidden]

Having asthma turning into COPD - a lot depends on where you live. I live in one of the highest rated pollution areas in London caused by exhaust fumes with no option to move. A friend of mine with COPD managed to leave London and is so much better in health.

[mrsfaz]

I also have COPD i got most of my info from web, my mother and father both died from this horrible disease, i have had pulmonary rehab which i found very useful

[FarmerD]

Just noticed how old this post is haa haa!!!

[Jusmaine]

I have end stage COPD, diagnosed, I am on oxygen All the time, I had a bundle of money and bought a tank early as I am familiar with congestive pulmonary disease. there is no cure and it is progressive. I grew up in a smoke filled home, and started smoking at 42 years old, stopped 19 years later using self hypnosis, it worked. I do albuterol every 4 hours during an asthma attack, I know for a fact that oxygen helps and forstalls the progressive effects of this disease ,

. I use inhalers for shortness of breath in medical is called on chart SOB, I also use albuterol every 6 hours during wake hours. I keep very slim easy to do eating too much abstracts the lungs as weight as well. I stay from public when I can, being around others with respiratory illness of any kind can take years off my life or the quality of life, so measure how important longevity means for you with regards to children. Not east, I said nothing Nd wound up in hospital and more damage to my lungs, the choice is ours. my O2 level runs 97 to 98, no oxeygen plunges to 09 or 88 with walking from bedroom to kitchen. So this site is a blessing for information and sharing, I live in USA, in a small town, namaste A

[Hidden]

Morning San15, The diagnosis is such a shock! I care for my husband who was diagnosed about 13 years ago. You have been very lucky with your doctor recommending pulmonary rehab. - I think it saved my hsubands life! Truly, it gave him the information he needed to look after himself and he was able to get a little fitter and less out of breath. I am sure you will get benefit from it.

It is very dependent on what area you live in as to what support you are given - my husband was given the diagnosis and left to get on with it. It took some time about five years to get referred for the PR course and get the support he needed. Having said all that I can be positive ! - he is now 67 still working full time and we have a great quality of life, just a lot slower than anyone else.

He was prescribed oxygen for walking etc. and that has really helped. He doesn't use it at work but does when we are going to shopping centres. etc. - it has opened the world up again. The very best of luck with your PR course. TAD xxx

[blancheallen65]

I was told for years that i had asthma. Now i have copd, never smoked. Pas couple months i wakeup with a dry mouth. My husband say i sleep with my mouth open. Take lots of pain medication and breathing treatments. Anyone experience these symptoms. No chest pain, can be up for hours. When i sit down i doze off

[Shazzy01]

Hi all, I have just been diagnosed with COPD and received a Salbutamol inhaler. Does anyone know how and when the inhaler should benefit me plz. I am having acute bouts of breathlessness daily and I guess was hoping for a quick fix. If anyone has any advice then plz plz share with me, thx very much all who read this post xx