emphysema

[dardy125]

Hi, my name is Darlene i`m 48 and I was diagnose with emphysema about 6 months ago and scarde, I work in a quarry and I love my job, I was always active loved the gym, and now I have trouble walking to my car and my belly is swollend so much it looks like I`m 8 months pregnant , wath do I have to do.... to get back to my self is it going to get worste the first thing I did was I quite smoking and I`m on spirivia, I`m confused, scared , I want to see my 3 grand children grow up , please someone give me some advise, thank you

[Gold13]

Hi Darlene,My name is Gold13. I have 30% lung capacity.I can still cook and clean.I have my ups and downs. As will you.For bloating I take probiotics.My stomach bloats. also.Try to keep calm.Don't get yourself in a panic.That is no fun.Try to slow down. Get well rested if know you have a big day the next day.Did you just get sick?Are you on oxygen? The best things that help me are no rushing!! Exercise, whatever you think you need to do. Good luck doll. Gold13. Xxx

[dardy125 in reply to Gold13]

thank you Gold 13, i `ve been sick for the past year, and I was diagnose about six months ago, no I`m not on oxygen, I take spirivia and inaler, thank you very much for the advise, xox and yes I will try probiotics

[Gold13 in reply to dardy125]

If your in England, you should go to bed!!!!!! So many good souls are here for you

[punkyb in reply to Gold13]

I am glad you are here and hope that you find comfort within.. I don't know much so cannot offer a lot but my support. It does take awhile to figure this stuff out but it will happen . Hang in there.

[Puffthemagicdragon]

Hello and welcome dardy. I have very severe emphysema. Stage 4. I got diagnosed just over four years ago.

Do you know what Stage you are at ?

Have you been given an appointment with a pulmonary consultant ? They will give you a proper lung function test and prescribe the correct medicines for you.

The other thing to ask for is Pulmonary Rehabilitation.

When I first got diagnosed I could hardly walk ( useless doctor so I changed to my present one ). After seeing my PC I improved massively. I still do the part time job I was doing before getting I'll.

I have 14 steps to get upstairs and I used to have to stop 4 or 5 times to get up them. Now I do it in one.

I recently had lung function test. My one and only other one was 3 years ago. Results say virtually no change. So I'm well pleased.

I've found the best thing for this illness is keep active. I still drive and go shopping, mow the lawn, etc, although it takes longer and a bit of planning.

Some people on here have had the problem for 20 odd years and are still going strong.

Feel free to ask us all any questions and we'll try to answer them.

[Bernardbreather in reply to Puffthemagicdragon]

Good going Puff. How much of illness have you had in that time (flu etc)?

[Puffthemagicdragon in reply to Bernardbreather]

I've had 2 bad ones in that time which required hospitalisation . Which is not bad overall I think.

I have an emergency pack of antibiotics and steroids that I can take if I feel there is an infection starting. It saves appointments, etc.

[punkyb in reply to Puffthemagicdragon]

How can you mow the lawn? I try and it is hard! Being active is a very big key to staying healthy with lung disease.

[Puffthemagicdragon in reply to punkyb]

I got an extension lead and put my mains concentrator in the garden and upped the flow to about 1.5 l/min.

I took a rest about every 10 minutes. Quite a big lawn too.

[punkyb in reply to Puffthemagicdragon]

Very good job Puff.... I do a lot of work outside with my little back pack tanks. Have you ever checked to see what your heart rate is when you are working hard?

[Puffthemagicdragon in reply to punkyb]

About 123 on average. It's about 100 through out the day and about 85 at night.

[punkyb in reply to Puffthemagicdragon]

Nice. That is about how I run.

[dardy125 in reply to Puffthemagicdragon]

ho thank you so much, I still do not now wath stage i'm in , I see my docteur next month I will start asking more questions, I really apreciate you taking the time and writhing, I will not give up and except wath I have and start living a new life still xoxo

[Puffthemagicdragon in reply to dardy125]

You rule it, don't let it rule you !

[2malinka]

I too have severe COPD (14%) lung function) and severe PH and on 1/2 litre oxygen daily 15 hrs min but I do manage to work 3 days a week and exercise all be it slowly. The important thing is to do as much for yourself as you can, and don't give into this illness although at times that it is easier said than done.

Look after yourself.

Malinka

[dardy125 in reply to 2malinka]

thank you malinka

[freefaller]

Welcome. You will find lots of help here. I do not have this so have no advice to offer other than keep as active as you can. You have done well quitting the smoking. If you need to and can lose weight then try to - I know it is hard especially when you are ill and on a cocktail of various medicines but it should help you. Do all the good things you know you should - like eat well, keep active etc but do a little and often if it is too much for you. Take things easy and work up gradually.

Love and hugs to you

Sian

xxx

[dardy125 in reply to freefaller]

thank you for the advice freefaller, and yes I have to change my eating habites, xoxo

[freefaller in reply to dardy125]

Just do your best to keep as healthy as you can despite the emphysema.

[Ray47]

Hi carry. I have severe emphysema, I have had it now for fifteen years. You will find that with good management you will still be able to have a good life. You have done the most important thing by stopping smoking but if you work in a quarry make sure you keep well away from any dust.

[ashmere4 in reply to Ray47]

hi the dust is a danger ware a nask it might daft but that is not important, it was dust that gave me emphysema ,in my youth i worked in a wood machine shop without dust extraction .what i have found usefull is the oxemeter i got from Amazon thats the gadet the medics put on your finger to show your stats that way you can check your own stats try to keep above 88per cent if lower REST good luckxx

[Timberman]

Hi - As a fellow sufferer, albeit a fair bit older, I feel for you. Giving advice is difficult since we out here cannot know you well enough to get it right. And simply something like 'hang in there' is frankly not much value if you are up against your own fears.

A few thoughts may help - make sure you know as much as possible about the disease, your version of it, how it is affecting you, what can be done, what cannot be done (just as important sometimes), REALLY talk to your GP, specialist and go on-line. You can seek a support group too - sometimes meeting fellow sufferers can be a huge help.

And you say you work in a quarry - that could mean your version is industrially related. You should find out and talk to anyone who can advise you on industrial sickness and the legal position. You will have to fight the disease - sometimes fighting on another front as well can be a help. But if it scares you then don't go there.

And whatever else, see as much of your grandchildren as you can. And say everything you want to say to them and their parents now.

And do everything you have ever done but prepare for it, do it slowly and do it in small chunks. Getting a job done will reward your effort and the exer cise really does help. The lungs may be crap but the diaphragm and chest muscles are still working.

[freefaller in reply to Timberman]

Well said Timberman

[punkyb in reply to Timberman]

Timberman "Hang in there " is a term of endearment not advice.... your tips however are very helpful. I wish I were as well versed ...I need you in my life to help me with all of my woes..I sure seem to have a lot of them...

[Timberman in reply to punkyb]

Er... for the record 'hang in there' is about encouraging people not to give up. Happy if any words can help... woes do pile up and it seems very unfair (if inevitable) that they mount in inverse proportion to our ability to deal with them. But think on - we've walked on the moon, landed on a comet and got pretty close to Pluto - and we've been around to see all that.

[punkyb in reply to Timberman]

So true.

[doublecee]

HI, never give in.

You must live with Emphysema not despite it.

I was diagnosed 26 years ago. Ironically a year after I'd stopped smoking. (Sod's Law).

Always make sure that you have and Emergency Pack. (antibiotics and steroids, at least.

Ask your G.P. to refer you for Pulmonary Rehab. This consists of a few exercises and a period of education on thee problems wit the condition. This usually lasts in total twice weekly for 6 weeks. You'll be surprised at the difference this makes to your breathing problems.

Never give up. You'll see your Grandchldren grow up, as I have mine.

Take Care,

Cyril.

[dardy125 in reply to doublecee]

thank you so much for the support doublecee, I guest that's wath i neaded, just a fiew word of incouragement, and I will not give up thank you again xox

[casper99]

Hi Dardy and welcome to the board. We're all scared when we're told we have COPD and packed off home with an inhaler and little information. The fear comes from not knowing anything about COPD in the first place.

I was scared for well over a year, until I found this site. Now, I know I understand what it is and how to keep as well as I can, I'm no longer terrified.

You don't know much about your own COPD yet , such as, what level you are, but when you do, you can start getting on top of it. The fear can actually make you feel more breathless and much worse than you actually are.

Type 'Just diagnosed' or simply 'Scared' into the search bar and read a few post from people like you when they first came on here and you will soon see, it isn't as bad as you imagine.

Yes, there are some very sick people on here, but there are a lot who have had it for 20/30 years and are still here and enjoying life, so you see, worrying about not seeing your grandchildren grow up could be pointless.

Well done for stopping smoking. That's the most important thing to do and the hardest.

Your job could be a problem, unless you can get some sort of mask, you need to discuss it with your doctor.

Any questions at all, ask on here because the people on here are very knowledgeable.

You'll soon feel on top of things and in no time, you will be helping other newbies to learn they can get on top of it too.

[Nikilet]

I wish I could tell you that I have a sure cure for you. I can't do that but I do identify with you, although I'm considerably older. I have COPD, which is both emphysema and chronic bronchitis. I've always been what they call a "workin' fool" and have always kept a spotless house.

I also take Spiriva and I am on oxygen, 2.0 L, 24/7. I went to the doctor about a month ago because I was having a hard time walking from my bedroom to the bathroom. My doctor put me on an inhaled steroid called Flovent HFA 110 mcg (there are different strengths) and I take 2 puffs twice a day. I use a spacer with the inhaler, which was highly recommended.

The Flovent has made a big difference for me. I'm not running any races. My lungs are pretty bad, but this has helped a lot. Since neither Spiriva or Flovent or maintenance medications, I take Albuterol by nebulizer when I have a bad spell. I purchased a hand-held, battery operated nebulizer by Omron several years ago and it has been a real life saver for me. It's called Micro Air. Because of it's size and convenience I opted to use it like a rescue inhaler. I put an ampoule of Albuterol in it and have it with me all the time.

I have 2 grandsons and a granddaughter to arrive the end of Sept. I also would like to be able to babysit for them, play with them and see them grow. It's very hard for me, even with the addition of the Flovent. But I don't give up because I know God loves me and is there for me. I could never continue on without Him.

[lKeith]

dardy125

Hi Your post of 2years ago referred to obtaining a bit of a belly once you had emphysema, I have the same complaint in that my belly has swollen to enormous proportions. How did you get rid of yours please tell?

IKeith

[LEXUSLADY3]

How are you? How have you been?