with all the negative things that is being said on here today really has me shook up-have been counting the days to see my pulmonologist march 5th so maybe I can find out what to do and maybe what stage I am how ever reading one where he was at a stage 5 is scary because of the way my stats keep droping (no breathing problems)!
statement : with all the negative... - Lung Conditions C...
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les4560
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Generally people are not negative Les, just telling it like it is. Many have breathing problems, some severe but we all support each other so don’t be scared, keep communicating. You’re not alone. Xxxxx
thank you sweets!
No we just tell the truth on here based on our own journeys and experience. We all live with lung disease and it's not all roses, so there is no point in sugaring the pill.
What we do give is hope that things will improve and often your state of mind is the deciding factor. If we are determined to live our lives positively we will and try and forget the negatives.
Never let your disease define you - you are still you but with a disease. x
Great reply Bev. Xxx😘
Thank you my dear. How are you and Pete? And the rest of the family? xx
Not too bad thank you Bev but Pete sadly lost his mum to dementia on Saturday. Very sad but she gave up in the end.
Hope you’re doing well. Take care dear friend. Xxxx
Yes it is isn't it? I find death very hard to deal with but I guess I console myself with that they have lived a long and hopefully good life, and everything comes to an end one day.
When the last of the parents and elderly relatives passed on my sisters and I turned to each other and said - Oh dear we are the older generation now and it's our turn next! Cheerful little soul aren't I? 
xx
That made me smile Bev. Sad but true.....lol. Xxx 😂😘💖
I really know what you mean I got up at 11-00am this morning and went into a blind panic when my hubby reminded me my hairdresser who is a friend was calling at 1-00pm to cut my hair . Really panicking because I had forgotten how crazy. Is that . Your breath is so precious and when you have to get ready for a certain time even though it’s 2 hours away it’s an awful feeling. Maybe it’s just me . Hope you feel better
Les, there is no stage 5, just 1 to 4. For what it is worth, I scored a FEV1 31% last March, Stage 4 starts at a FEV1 of 30%. I know that I have lost a little since then. So I am more than likely at stage four now (very severe).
I can still do a hell of a lot, I work full-time on my feet all day as a production engineer with no plans to retire. I live up three flights of stairs and can carry a 30kg loaded shopping trolley up them too. The last week of May will see me sailing a ten ton cruising yacht on the rivers of the Norfolk Broads and I will be 69 this year. How do I manage all this? Exercise is my secret, I have a rowing machine and a static cycle that I use daily for at least 30 to 45 mins.
I was not diagnosed until I was stage 3 (severe) with a FEV1 37% almost 3 years ago. since then I have also had lung cancer as well (now in remission), which knocked me down a bit as well. But it is what it is, with no going back only forward. Keep thinking positive and what you can still do and forget about anything you can't do, it is just not worth getting stressed about.
hi there-wow I am almost speechless at how much you do, but sad you have been through so much I just cant imagine how hard this is on you! I know a lot of this is about attitude and other than being scared I do have a good attitude and then I think of my sister (lung cancer died age 37)-another sister (lung cancer died age 49) another sister (lung cancer) had surgery .5 lung removed doing ok so far -that's when I start getting scared,you can understand that right?
in reply to 2greys
That’s darn impressive. It will be a yr come April since my last pulmonary function test. I’m sure I’ve went down some. Last year I was Fev1 at 25%. I still work full time as an engineer in the food industry. I can walk at my own pace but if I had to hustle like my co workers no way. My guys cover for me . There is no way I could climb more than a few stairs. I’m not overweight and I’m walking busy daily. This may I will be 58. I’m alpha 1 ZZ. It intrigues me this disease affects all different even when they may have close to the same fev1%.
2greys in reply to
It is very weird in the way it affects people so differently. Perhaps it could be something to do with engineers, with many complex problems to solve keeping our minds fully occupied. I do not know the reason. I think my FEV1% is probably a little higher than yours is but I cannot really say.
Keep on working for as long as you can, it gives us a reason to get up out of bed, keeps us active and of course better finances. Thank you for letting me know that I am not the only one who can still work, not the only weirdo that does not conform to the mean average sufferer.
in reply to 2greys
I can’t afford not to. I need the insurance. Also I’d be bored to death.
2greys in reply to
Boredom and cabin fever, a recipe to start overthinking about breathing. Not a good place to be.
Couldn't agree more.I'm also a ZZ Alpha with a most recent Fev-1of 18. Still work full time. Without work I would be bored and overthink as well. Not good.
Work,exercise,and my supportive family is critical to me .
Can't do the lifting or stairs you can 2greys -- good for you -- keep up the good fight!
Regards,
JCL
Bravo, keep going yourself, I definatly feel less alone and a freak because I still work. I hope Emily sees this thread. Thank you for your reply there are more of us stage 4 workers than I thought. Now I need to find someone older, so I can sit in the middle.
2 grays, you are an inspiration to us all, I couldnt do the things you are doing now at 50 and you give us all hope, providing plenty of information that is encouraging and still maintaining a postitive attitude. If I could get up all those stairs to you flat I would be over the moon, just shows how fit you are. Keep your post coming, it makes me realise I have got it pretty easy and helps me to oull my socks up. Irene x
You totally inspire and motivate me. Thanks 🐞
Hi with so many close relatives having lung problems I wonder if you have ever been tested for a genetic link? If not I think you should ask for this. x
I will ask about that-thank you so much!
It's called the Alpha deficiency Gene and just a simple blood test. Your nurse should be able to do it for you. x
ok I will ask about that,i do remeber they took a lot of blood work that came out good,when I told her my fear of family members getting cancer an x-ray was taken came out good,ordered a ct-scan with red dye no cancer but the radiologist said a trace of emphy. showed up and that is all I know at this time except my stats still drop really low some times and wont know anything on that until march5th
Well they won't test automatically for the gene as it has to be a specific one. x
you already have been tested, that's what alpha 1 zz is.
Hi there , it can be quite difficult sometimes to be positive when putting over very negative facts about our illness. We do try to support but all get off days so to speak, hope you will continue to post so you will see the vast array of subjects we talk about plus the main one our illnesses.
Yes we all get our "off days" and every now and again we all get them together. I suppose it is a little like being in a crowded and noisy pub, then all of a sudden a deadly hush descends that only lasts a couple of seconds, just a coincidence.
2grey it seems like I only have a bad time when im alone and no one calls on the phone my mind goes all over the place but other than those times I am very positive! Thank you so much you have been of great help!
Don't take this wrong, I do have your best interest at heart, but I do feel that you are having a fair amount of anxiety going on when you are alone and it is this that is causing a lot of your breathlessness, then panic sets in which really makes it worse. Nothing to be ashamed or worried about to have anxiety. I think that if you see your GP and explain what has been happening to you then there is help available. Try reading a book or doing a jigsaw, anything that will distract you from thinking about it.
Anyone who receives a diagnosis, whether mild or severe, is prone to be anxious and scared. I promise you that you are not going to die any time soon. Sure, it is a nasty, horrible disease but you can learn to live with it and cope, it does take a little time. If you can't open up to your GP then show him this reply, he will understand. You have it mild, just treat it as a wake up call to modify your lifestyle and you really will be fine.
Many here, like me, were diagnosed at the severe stage and are still living with a decent quality of life. As you have seen, some of us even work full-time.
Hi les4560, Finding out what stage you’re at isn’t going to make any difference other than possibly depress you. You are how you feel, keep mobile, eat well and try to be positive. Stages and numbers don’t help at all. What stage am I at? I’ve no idea, oxygen 24/7 so pretty high I’d think but I keep going, look after myself, do all I used to do but at a slower pace. Get fed up? Of course I do but that’s life. Joy.
I think many of us understand that breathing results can go up and down for many reasons. Which can include anxiety. The fact that you have no breathing problems would be very encouraging to most in this group. At times some posts can be negative. However we all at time need to vent to some degree and need support to overcome or deal with situations.
Please remember that we are all different and what symptoms appear for one person may not necessarily appear for another. And as Sassy 59 says, you are not alone and there is so much support out there!!
Hi everyone my moto is never give up I have severe copd spondylosis of the spine need new left hip and operation on right shoulder to repair torn musle still at full time work driving lorries 3 years ago walked the Camino in Spain which is a 550 mile pilgrimage I know it is scary but only if you think to hard about it
Hi Les , perhaps you missed my comments on this " Stage " business a couple of weeks ago ... when I asked " who cooked up this "stage " . business , also by whose " Authority " ?, - when many Doctors can't even agree amongst themselves ...! ...and that telling a Patient he is at a certain " stage " in his illness , is just a fancy way of telling him / her = their time " is running out !! .=.. CHARMING !! , AND WORRYING THE LIFE OUT OF THEM !. I also gave examples of friends who were supposedly at their " LAST STAGE " , - THAT WAS ELEVEN YEARS AGO ! - AND THER'E STILL GOING STRONG ! , and ONE recently asked me = " WHEN AM I SUPPOSED TO DIE THEN ? " - with a smile on his face ! , = SEVEN YEARS AFTER BEING DIAGNOSED WITH EMPHYSEMIA AND ASTHMA ! and, finally , a neighbour of mine was told he was on his " last stage " of CANCER eight years ago , it went into remission , and is running round the park most mornings ! , so what price this utter " Stage " nonsense? - apart from being ON THE STAGE at the " London Palladium " !!....by the way , I did ask my Doctor , about this " stage " tripe - he just replied with a smile = HOW LONG IS A PIECE OF STRING ? ! I AIN'T GOT A CLUE !!! .......... NEXT PATIENT PLEASE !! .. -GOOD LUCK LES ......
thank you for that post its just that im so new at this and so scared that I really don't know what I would do with out people like you and 2gray! like I said in my post I am positive about this until I get to thinking about my beautiful sisters and how young they were when they died and I am not THAT old my self---but being on this site with such wonderful people I have already learned a lot and for that I thank each and everyone of you,all of you people are awesome!
Some incredible posts here today. Fab-u-Los people.
How low has your stats dropped,and good luck today
I found that its best not to join these groups if you get in a state perhaps wait until you have more understanding of this disease we cant lie and say its plain sailing for us all its a horrid condition but can be managed x
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