SEVERE COPD

[Cath3rin3]

Hi I've just been diagnosed with severe copd. I am 44.

I was a smoker but I'm on nicotine replacement now. I also work as a fragrance consultant. I was shocked to be told I had it as I always thought it affected older people .

[Batbara]

It is not as common in younger people, but it still happens. Make sure you take your meds, go for pulmonary rehab, and don't smoke. Keep moving. That's important. Also try to stay positive. Don't believe all the horror stories you hear. Stick with this support group.the members on here are very caring and helpful. Good luck.

Barbara

[casper99]

Hi and welcome. It is an awful shock but well done for stopping smoking so quickly. It took me over 2 years. Batbaras post says it all, so I can't add much to it.

There will be more knowledgeable people along soon to welcome you. They will answer many of the questions you will have and welcome you on board.

Stick with this site and you'll soon be taking charge of your health, which will make you feel more in control, supported and less anxious. It did me. x

[Hidden]

As I understand it is usually older though my husband was diagnosed at about 52 and he had had symptoms about for a few years before that.

I hope that you are getting some useful support from your doctors. We didn't and had to become proactive - I found out we had a specialist respiratory team in the area and asked for a referral. The nurses were really good and it is very useful to have this sort of support to advise the Doctors if need be and they are able to fast track to the consultant. From experience I think you do need to be proactive so I would suggest as a starting point you telephone BLF and ask if they can send you some information, they have some very good leaflets etc.

Stopping smoking is essential to slow down the progression of the disease as is Exercise. Try to keep as fit as possible. It is definitely key to slowing it down. Make sure you get a flu jab each year and a pneumonia jab. Keep away from people with colds is possible - it usually ends up with a chest infection. If you think you're breathing is at all compromised go to your Doctor. My husband used to feel that it would be OK - and I am sure that more damage was done with that approach.

The other thing you probably need to question is if your job aggravates your condition?

Finally, my husband has very severe COPD and uses ambulatory oxygen BUT we have a great quality of life we keep going despite COPD just a lot slower!

Take good care, TAD

[Cath3rin3]

Thank you to you all

[daffy654]

I was diagnosed at age 38, having been a smoker since the age of 8 (yes really) I was not that surprised, i'm now 46 and stopped smoking almost 2 years ago. I seem to be entering a more severe stage of my illness in the last few months.

[blondola1 in reply to daffy654]

Hi Daffy654

I have read your comments and I wondered immediately if you have seen a Respirologist - you really should see someone as they can help you. You are far too young to say you are "entering a more severe stage of illness". There has to be a respirologist wherever you are and they never give up on anyone. I am from Canada and I have one and I am under constant supervision at all times. Please do not give up - there is always something you can do - please pick up the phone and find a respirologist immediately and let us know how that goes.

Take care.

blondola

[daffy654 in reply to blondola1]

I live in the UK so have to rely on the NHS for my treatment, unfortunately I was discharged from the chest clinic I attended after they decided there was nothing more they could do for me. I was already on Salbutamol and Seretide inhalers for asthma and they tried another (Spiriva) which made no difference so that was stopped. I was basically told that I should go away and if I have any more problems to see my GP (who is useless). My condition is complicated by the fact I have had two large spontaneous pneumothorax and several smaller ones, I have also had VATS surgery on my right lung Bullectomy and pleurectomy which has left me with a slightly smaller lung than when I started.

I have tried pulmonary rehab but because of pain issues from my surgery it was of limited benefit.

[blondola1 in reply to daffy654]

Hi Daffy654

I live in Canada and if anyone especially a doctor ever told me to go away I would have him or her reported immediately - that is just not done here and I am shocked it is done in England assuming that is where you are from? I am on Spiriva, Advair and Salbutomal - I have never heard of Seretide?? Why didnt the Spiriva help?

I am not aware of "spontaneous pneumothorax and several smaller ones" now am | aware of the other lung issues you mentioned - they do sound very serious though.

I would go back to the treatment centre and tell them they are all you have and that your family doc is useless - they really should take you back and keep on trying other drugs if the ones you told me dont work. Drs dont just give up on patients - they are supposed to help.

Please do that and please tell me how you do. You are very very young to give up - dont do it please.

My email is [e-mail] please feel free to write to me.

Take good care my friend,

Jenny :))

blondola1

[jenss in reply to blondola1]

Hi Jenny, thanks this is really nice of you to care so much. xx Pease Daffy654 take the advice!

[John119wards in reply to daffy654]

Hi Daffy,

I'm like you & I've been told there is nothing more the doctors can do for me also. I had tried every type of inhaler & like yourself found they had little or no affect with my asthma. I'm now sixty & on oxygen most of the day, I try to switch my oxygen as much as I can & feel a lot better for it. I used to go to the pain clinic for acupuncture & one day my asthma was really bad & the nurse said would I like to try acupuncture if there's any points given in her book. I agreed & she started putting needles at points in my foot & within minutes I stopped wheezing & fell asleep the whole time the needles were in. I've said to my doctors about it & their saying that in their book there's no proof of this helping. I feel there's nothing to lose by trying it & the fact your not taken more pills. I feel you have to give anything a go if it helps. Try & think positive my friend by not sitting about & watching the tv.

[Hidden]

Definitely consider a careerer change!

Being around atomised fragrances could be exacerbating your condition, as you're constantly breathing in the minuscule droplets of essential oils. This may be causing inflammation of the Alveoli within your lungs thereby making it harder for you to breath. I find from personal experience of having diagnosed COPD for many, many years to use only fragrance free products and try an avoid anyone wafting along on a cloud of sultry perfume.

Stay positive and learn to manage your condition, rather than allow it to manage you.

Good Luck

[Hidden]

i agree that being amongst fragrances can aggravate copd. I have to be very careful what perfumes I use, and try to use roll on ones , because the aerosol sprays can trigger chest probs.

Stopping smoking....the best thing to do by far, also, eating healthily, and drink plenty of plain water. use medications as instructed, and try not to get stressed over anything. Also, be careful what cleaning things you use. I no longer use chemicals, and have a book on natural things to use for cleaning.

I wish you all the best. This site is very good, with lots of nice people and advice, but, we are all different, and must take our doctor's advice, always, and use our own discretion about things.

[Hidden]

Hi Cath nice to meet you and welcome to the site. You have been given some great advice here so am not going to repeat it. One thing though, don't do indiscriminate googling or you will scare yourself silly. Stick to recognised sites like this one and the NHS etc. You need to take your lungs seriously. If you think you have a problem go straight to your doctor. It is better to be on the safe side than sorry! xx

[katieoxo60]

Welcome Cath3rin3, yes you are young to have severe COPD but sad to say it does happen to younger people. Giving up smoking is the best thing you can do but don't worry if you slip back into the habit just try again. It may take a while to establish the best drug regime for yourself, so you do really need the help of a specialist in lung diseases. I get problems with fragrances so as said your job may have to be changed. But remain optimistic I am sure if you manage your illness well you will have a full and active live ahead of you, even if you have to do things slower like many of us on here who have COPD at varying stages.

[Hidden]

nice to meet you, sorry its under these circumstances,copd effects us all not just the older generation, but on hear were all the same no matter of age,why not give the blf nurses a ring in the morning at 9am n chat to a nurse 03000 030 555,wishing you wellx

[helingmic]

Cath3rin3. By stopping smoking, you took charge of yourself, wonderful! Keep as active as can be! If you can introduce some exercises in your life, do it, I recommend Qigong, the 8 pieces of brocade. These are Chinese medical exercises to maintain some health and fitness. Here is the explanation of what they are:

en.wikipedia.org/wiki/Badua...

And here's a demonstration: youtube.com/watch?v=DhsU1qL...(Not working as expected?)

Qi-gong emphasizes breathing during exercises, that's why I like these. I takes me 30 minutes every morning. But if you cannot in the morning, do try it at a convenient time. This helped me a lot. Any Taichi is good too.

Any other breathing exercises are excellent too.

Well done for stopping smoking, this is a brave step which will help you no end.

[barneythebulldog]

Make sure you are tested for Alpha 1 deficiency. COPD is a symptom of it.

[onamission]

I was diagnosed 10 years ago with COPD gave up smoking with the help of champix have my flu jab every year keep away from people with flu.

I don't know how you are working with perfume I can't step in that big store begins with D I just end up on the floor coughing. Welcome to the site you will always find support hear.

[Cath3rin3]

Thank you all your replies have been really helpful, like probably most of you i was online straight away but most I read really scared me I'm waiting to join the pulmonary rehab so hopefully that helps, as for my job I think I'l need to reconsider as I'm coughing more I work in a large department store & there can be 20 of us all spraying in one day... Thanks again I'm glad iv found this site.

[peege in reply to Cath3rin3]

Hi Cath3rin3, welcome to this great site. It is scary being diagnosed at any age but 44 is quite young. I would deffo get checked for the alpha 1 deficiency, it's a simple finger prick test I believe. Having this deficiency can be one reason why younger people have emphysema - especially non- smokers.

Some of your replies above might be a little scary, do remember we are all different and react in differing ways & severity of symptoms.

It's so tricky to understand at first but keep coming back on here, you will learn much more than you'll ever get from GPs ( they have 'general' knowledge after all then there are some who have no clue at all and some who don't give you the time of day if you're a smoker).

Don't panic (easier said I know). I was so depressed at first and thought my life was over. Now though, with what I've learned from being on here I've had the best winter for years and am now very optimistic for the future. I'm in charge now, not ill health.

Please do ring the BLF helpline, they will guide you on what to get out of your medics. You have rights to expect good care and support. It sometimes takes a while to get your meds regime exactly right for you.

The fragrances won't be helping at all so I hope you'll be able to be transferred away from them.

I wish you well. It's time now to build and maintain your immune systems. We all have to avoid catching bugs which we're more vulnerable to now. Infections weaken the immune system even more so it becomes a vicious circle.

To try for pulmonary rehab, it's so brilliant to improve strength, stamina of lungs plus they have experts to explain & teach you more. For ie at my PR I found out I'd been taking my inhaler incorrectly for 3 years!!

All the very best to you and don't hesitate to ask anything. Peeg

[Dorris59]

Diet has been strongly linked to COPD. There is a supplement called sulforophane, that has been shown in clinical trials to be beneficial to COPD sufferers. Sulforophane is high in vegetables, such as broccoli, cauliflower, Brussel sprouts and all crucifer veg, but is especially high 3-4 day old Broccoli sprouts, though you can buy it as a supplement. As others have said exersize for the lungs is important too, get your flu and pneumonia jabs and stay away from people who have colds and flu. Washing your hands several times a days reduces the risk of picking up unwanted viruses. Boots do a foam for the hands that kills bacteria and viruses and will protect for up to 6 hours. Worth keeping some by you, especially in the winter during the flu season.

[Dorris59]

Forgot to say that cooking kills sulforophane, but I did read that steaming your veg for 5 mins in a bag is best. Also cooking it with mustard seed powder boosts sulforophane. Try google for more info.

[EmAitch]

Hi Cath

Sorry to hear of your diagnosis.

I have COPD, having been asthmatic for all my 57 year plus having all year round allergies. When I visit my daughter, she turn off those plug-in scents as they aggravate my breathing. When I'm in her car, she puts away those hanging scents. I used roll on deodorant however I do sometime use the aerosol, but facing an open window.

I love perfume, so I will still use them. I am just more careful how!

Being a fragrance consultant, may be aggravating your symptoms.

Stay with the site as others suggests. You may feel you are on your own at time,.... with this site you won't.

Good luck x

[barneythebulldog in reply to EmAitch]

get tested...smells affect me

[barneythebulldog]

Dear all,

I have Alpha Trypsin MZ...the Z is the bad gene and was diagnosed asthmatic in my 20s out of the blue I took an asthma attack...My sister in law was able to get the diagnosis via a consultant in America...no diagnosis thro NHS so if you are asthmatic, cope or any lung diseases and you didn't smoke then you should insist on a test..and then get support throu Alpha 1 support group. It is a genetic disease that begins in the liver if symptoms present in childhood and the lungs more generally as an adult. Alpha 1 has affected me in a variety of ways and guess what the NHS has a few consultant who specialise in UK ...none in Northern Ireland... so we only see an lung specialist.