New Friends

Hi vanessalee, I remember posting as a guest before I joined the site and being amazed that people took the time and trouble to answer me, to give me information I could understand (thanks vanessa) and to cheer me up (thanks Tessa). It is amazing how much better you feel by sharing your worries and how good it feels to be able to help others a little. I hope people respond to your invitation.

Jacee

Hello.

I am Richard and I am 53 years old. I have been diagnosed with copd. I smoked roll ups for 30 odd years but I have stopped smoking now. When I had a blow test done the nurse said that the number was 55% and I understand that means that I only have 55% of my lungs left. So not very good. I get puffed out going up hills and steps but I am able to do everything still. I have a blue inhaler but I dont use it because it does not work. I still work. I do get depressed sometimes because I dont know how long I have left to live now, but I pull myself out of it and get on with things. My attitude now is what will be will be. I was due another blowing test last month but I didnt go because I dont want to know. Wish I had never smoked that first fag its too late now so no point crying over spilt milk.

I came accross this site by accident while surfing the world wide web and it looks good so pleased to meet you :?

Hi Richard, I'm so glad you stopped by. I am hoping you will have bookmarked this site so you can easily return to pick up any messages.

First and foremost, do not despair. The end most definitely is not nigh if you arm yourself with the facts and return to your Doc to get sorted. I know things look pretty bleak and scary at first, and for a while you may either dwell on it all the time or do the opposite and pretend nothing is wrong.

Now then, there were two pieces of (relatively) good news in your post. One is that you scored FEV1 55% on your Pulmonary Function Test (PFT). This puts you in the 'mild' stage of copd. At this stage the prognosis is good. Long term survival rates of people with mild copd are only slightly lower than for people without copd!

The second good thing is that you have stopped smoking, so already you have done the hardest and most beneficial thing for your health, well done! Smoking will cause your lungs to deteriorate at three times the speed but now you have stopped your lung function will stabilise so long as you do all the right things. Also, if you only recently stopped then you may see a few percent rise in your lung function once they have had a chance to clear!

Do remember Richard that many people without copd would have an FEV1 of 80%. Lung function has to drop below 80% to be classed as copd.

Please do go back to your Doc when you feel ready to tackle this head on. He may be able to give you another type of inhaler to help improve your breathing. The blue one is always the first one they give you while they wait to confirm diagnosis etc. Some people love them, some don't. When I first had mine I was using it wrongly and either got no joy from it at all, or got palpitations and hot flushes! I found out it was because the spray had been hitting my throat instead of being breathed into my lungs! The drug was being absorbed into my bloodstream and making my heart race. The Doc gave me a 'spacer' to use with it and Hey Presto --- not a huge difference, but a good enough difference that I still use it ten minutes before I go out anywhere. And that is on top of much stronger meds.

Just to demonstrate the difference the right medication can make --- I am FEV1 29% without meds, and FEV1 40% (sometimes more) with it. I was diagnosed last February (2009) at age 54. It was May /June before we found the right drug combination for me, but what a difference!

Do stay positive Richard, and do get back to us and let us know how you are. You can ask any question and we will give you an honest answer where we can and point you in the right direction if we can't. I am off to work out on the treadmill now to keep my lungs as fit as possible for as long as possible ---- it hasn't got me licked yet! lots of love and good wishes, Vanessa

:run:

Hi Richard,

Vanessalee has given very good info and advice. I can add that I also smoked for far too long (45 years out of 56) but stopped last year. My lung function was 22% when I was diagnosed and I also still work full time. I also do not use the blue inhaler. Most of these are for asthmatics and are useless for COPDers. I find the Spiriva inhaler (once a day) works well and this was specifically designed to combat breathlessness in people with COPD. I had to argue to get it as the GP nurse thought it was too expensive!!

It therefore pays to be clued up and vanessalee is a good source of info, so that you can stand up and fight your corner. If you have a respiratory nurse at your local hospital you should find they will also be a good source of support and of information.

Keep trying to fight the depression - you have years left to live and they will be miserable ones if all you do is worry! Your attitude of what will be will be is the best one, though don't forget we CAN make a difference by taking good care of ourselves, eating properly, exercising often. etc. which can not only make us feel better but also live longer.

I am glad you found the site and hope you keep in touch.

Jacee :D

Thankyou both for your positive words, I will try and be more positive from now I think. I think this is the best site I have come across ... I found another one called copd international but they all seem to be American ... this ones better. I live in Somerset by the way. Pleased to meet you.

Hi Richard, I am in Yorkshire and vanessalee is in Cornwall, so we are spread out a little but I also think this site is better than the mainly American one - feels more like family somehow. Hope you feel you can keep in touch - you may be able to offer help, encouragement or share an experience with someone else dropping in. Keep smiling

jacee

:lol:

Hi Everyone,

I have been reading all the COPD forum for quite some time & thought it was time to join in!

My name is Knitty & I live in Mid Wales, am 51 years old & eventually stopped smoking May 2009.

I have Emphysema & Alpha-1 antitrypsin deficiency & other minor ailments!

My Fev1 is 33%, I am on Spiriva, Symbicort & Ventolin.

I would love to chat to other sufferers & share news.

Hi Knitty - So happy that you decided to join us! Well done on giving up the smoking - a few of us seem to have managed it last spring, so by now our lungs should be a lot 'cleaner' than they were!

So glad to hear from another Alpha - I was diagnosed copd over a year ago but only got the Alpha diagnosis last Friday. Started getting a bit pessimistic and sorry for myself yesterday - went on a bit of a binge -which just made me feel guilty rather than comforted

When were you first diagnosed with copd / Alpha1 and how are you coping? Do stay won't you - love that name by the way - we've had some lovely names lately - Flossie / Knitty, I'm seriously thinking of changing mine or getting a nickname at least! Lots of love, Vanessa x

Hi Vanessa,

Many Thanks for the welcome!

I suppose my lungs are cleaner as my Spirometry nurse said my cough would get worse for a while when I 1st stopped smoking, but I was the opposite as I almost instantly lost it.

I cant say that it has slowed things down much through……………

My FEV1 was 37% 0.99 litre in June 2009 & it was down to 33% 0.87 litre in March 2010.

My father had Emphysema, I don’t know if he had Alpha-1, but I was tested back in1978 & I was told then that I had the Alpha-1 Anti-trypsin deficiency.

I am ashamed to say that I chose to smoke, the problem is you think you are going to live forever when you are 19, at the time I was very fit & cycled a lot. Where I worked they did a fitness test on any staff that wanted it & believe it or not I came out the fittest in the whole office -even beating a guy who was in the territorial army!

I thought that by the time I got poorly they would have found a cure!

My mother only recently told me that her father also died of COPD so I am sure it is hereditary if there is copd on both sides of the family.

I do understand what you mean about being a bit pessimistic and sorry for myself !

I had a phase a few weeks ago where all I kept doing was crying, but after a long chat with the BLF nurse I felt better!

I do take Lofepramine which is for depression so I guess that helps!

I haven’t been given any info about Alpha-1, but have recently changed hospital consultants so I am hoping the new one will be more helpful & I plan on asking her for a long term prognosis at my next visit!

I am glad you like the user name……….

My 2nd passion in life is my cats & my 3rd is knitting hence the name!!

I will have to go as the girls want feeding!!

Would it be OK to PM you? x Knitty

Hi Knitty

Yes feel free to PM me anytime. I know alpha is hereditary but as my mum died young of Leukemia and my dad died young of heart attack, I don't think the Alpha 1 ever got a chance to reveal itself - hence the shock. Mind you, I guess that puts it in perspective a bit .... even if my parents had it, it didn't matter as they died of other things!

When the Doc told me I had tested positive I immediately asked about my daughter, aged 16, and son, 34. I wanted to get them tested but he said he was arranging for genetic counseling for us all, so I guess they will be given the option of tests then after it is all explained to us. Perhaps you should enquire about something similar for yourself too? Mind you I'm not holding my breath, I realize I will probably have to wait 6 months or more for an appointment! They seem to take it pretty serious down here though, the 'counselor' he wrote to is head of Genetics at Cornwall Peninsula. Thankfully neither of my children smoke.

Will talk to you again soon, hope this finds you feeling good, love Vanx

Welcome Knitty,

lovely to hear from you. I am also a cat lover :blackcat: (though I do not have one at present) and used to knit a lot and I appreciate your play on words. I also stopped smoking last Spring (March 09) after starting smoking in 1963, when I was eleven!. I had been warned from my early twenties to stop but you are so right - we do not just think we are immortal, we KNOW so. When I was told I may have chest troubles in my 40s I could not even imagine living to be so old!! And anyway, when you chose to smoke you can always justify it to yourself. I'm glad you kicked the habit and that you have come along and posted - Van will appreciate another Alpha 1 person I think, we do find comfort in numbers don't we? Again, lovely to hear from you, hope it's the first of many messages you post.

Jacee

x

Good Morning Vanessa & Jacee!

My mother has said in the past that I Love my cats more than my sons!

The thing is the cats don’t answer back, come home drunk or bring strangers home at all hours etc etc!!

I have 2 sons, aged almost 21 & 22 ½ - there is 18 months between them!

Luke used to smoke & has thankfully given up, Matthew has never smoked & I doubt if he ever will. What worries me is that they drink too much at weekends & with the Alpha -1 that can also cause liver problems, so I will have to look into this.

My GP has talked to me about them being tested but Luke says he doesn’t want to know & Matthew is thinking about it!

Nothing has been said about Genetic counselling - it might have something to do with the lack of funding in Wales - I guess they have to save money in some areas to compensate for free prescriptions!

I have to admit I did smoke for 35 years, I had thought about giving up many times & when I eventually did it last May I found it very easy & get annoyed with myself for not doing it sooner!

I had tried stopping several times before, I had tried all the nicotine replacement aids without any luck, I was highly allergic to patches & didn’t like any of the other things. The councillor had suggested Champix, but I have problems sleeping & she said that could cause problems so I brought myself the Allen Carr stop smoking for women book & it worked! I had read some of his other books years ago so I guess the time was right last year.

My husband still smokes & leaves ciggies around & I have never once been tempted!

You should try knitting again Jacee - I find it very therapeutic!

I only knit small things though like gloves, hats, scarves, toilet roll & tissue box covers & my favourite is Tea Cosies!!

I would never have the patience to knit anything big like a jumper, I did start a cardi years ago, did the sleeves & the back & gave up! I unpicked it eventually & used the wool for something else!

Well Ladies the sun is shinning, I hope it is where you are & have a nice day! Knitty x

Hi All,

I also love cats, I lost my burmese boy last Oct aged nearly 19 :sadface: Am soooo tempted to get a new one, I work / commute full time in London so not sure I will have the time to settle a new fur baby in..

Van - something you said the other day about this being a life limiting and progessive desease which should be taken seriously really struck a chord with me. I suppose in some ways I have ignored my symptoms, however, I think maybe I should re-evaluate my life to ensure I get the most from it.

Knitty - my son is 27 and I definitely prefer living with cats than young men (or is it just sons??!!) Mind you , grandchildren more than make up for it all, I have a 6 year old grandson who loves his nanny :love: And that makes life just great for me :-)

Still loving the sunshine - catch up soon xx

PS - MY doctors appt not until May 8th but I am getting ready for it!!

Hi Flossie,

You commented about Van striking a chord when she said COPD should be taken seriously. Don't make the mistake I did - whilst ever I could ignore it I did, then I couldn't because it was so bad I had to have 5 months off work and go onto oxygen. It was then too late to try and slow it down. So please, do take it seriously, think about your options and then maximise your health. Or ignore this advice - I did! :wink:

Jacee

xx

Hi Flossie,

You commented about Van striking a chord when she said COPD should be taken seriously. Don't make the mistake I did - whilst ever I could ignore it I did, then I couldn't because it was so bad I had to have 5 months off work and go onto oxygen. It was then too late to try and slow it down. So please, do take it seriously, think about your options and then maximise your health. Or ignore this advice - I did!

Jacee

xx

Hi Jacee,

Thanks for sharing this advice. I gave up smoking the day I was told I had COPD last year in Feb..I know I have emphesema. I try to eat healthy. Exercise is my let down as I cant seem to will myself to go to gym although I know I must (and have paid for it!). I just felt that maybe changing my life slowly to a more relaxed pace? I am not sure the stressful job helps or the commute. These are thngs I want to think about. And get the doctors to take me seriously - they do say there are services availabale but not for me as I work away! Most classes and sessions are in the daytime - Mon-fri . It is just lately my breathig has getting worse and I am noticing painful SOB even after walking on the flat. Anytime I rush I am breathless. I get stressed and brealthless! and so on..I dont want to ignore it but I need to carry on making a living and it is a difficult balance sometimes. Heyho, the sun will be out this weekend and I have some nice things planned ...one more day 8) xx