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new diagnosis please help

paco19613•

hi all

i’m 62 and just been diagnosed with severe copd/ emphysema with only 30% lung function ……

what a shock ! i expected emphysema but not to be that bad surely !

i’m devastated ! feel broken & can’t think of anything else and don’t no we’re to turn for even a bit of reassurance of am i still going to be here in 6 months ????????

my mum smoked suffered with copd & had a nebuliser to help her breath and she was never as bad as me and lived till she was 90 yet died with dementia .

gave up smoking 2 yrs ago due to my breathing deteriorating but only recently plucked up the courage to persue along awaited spirometry test & chest x-ray .

i don’t seem to have any other symptoms other than getting out of breath , i sleep ok ive not lost weight if anythink i’m a bit overweight .

i’ve suffered with asthma from a child & have been on ventolin , fostair and then trimbow of late which all worked for a while .

can’t think of anything worse than attending a pulmonary rehabilitation course just the thought is sending my anxiety issues through the roof !!! i’m happy to go for a leisurely stroll everyday with my dear husband but is that enough ????

i’ve now been started on trixeo this week so have any of you had any experience if this ?

any further advice , information or encouragement that will help me will be so appreciated !!!!

thankyou in advance

k xxx

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mylungshateme24 days ago

I'm so sorry of the shock you're in following your recent diagnosis. I don't have your diagnosis but I get how overwhelming things can get after seeing consultants. Take a deep breath, write down your questions, worries etc for next appointment or call the respiratory team. You will get lots of support on here from people with more experience of your conditions. But giving you a gentle hug.

paco19613 in reply to mylungshateme24 days ago

thanks yea i’m going to do that

Troilus24 days ago

Hi paco. It’s all quite daunting isn’t it? And medics are happy to land us with a diagnosis (mine came by post!) without considering the effect. You’d think that they would have a list of frequently asked questions and just share the answers with us, in anticipation.

However, if you are not in the right frame of mind to do pulmonary rehab just yet, then yes a daily walk is good. Any exercise that increases your heart rate to get your respiratory system”moving” will suffice. Any exercise at all.

I down loaded an nhs pulmonary rehabilitation booklet. I will supply the link when I find it. These are basically exercises you can do at home, seated or standing.

How was your asthma doing when you had your pulmonary function test? Did you respond well to the salbutomol given during the test?

I am asking because you have a long history of asthma. With asthma you tend to go off your post medication readings to assess your lung function - the idea being treat the asthma and what is left is copd.

Found it:

uhdb.nhs.uk/download.cfm?do...

paco19613 in reply to Troilus24 days ago

i would appreciate that thankyou , i wasn’t given any inhalers during the test , my asthma has not been that bad to be honest

teddyd24 days ago

I think everyone gets a shocked when they get a diagnosis. Its now trying to maintain the level of health or possibly improve it. I have never been put forward for pulmonary rehabilitation classes , however friends that have done it talk very highly of them .It has spurred them on to improve their energy levels and general well-being. It has provided them an opportunity to chat to others in a similar situation .Also I find the respiratory nurse at our GP surgery very helful and also others on this forum.

paco19613 in reply to teddyd24 days ago

thankyou

Gladys2724 days ago

Its a shock but speaking from personal experience I would say go to the pulmonary rehab not only to learn lots of things to help you but to be part of a group of people who also feel like you do . Very best wishes and try to keep as active as possible . xx

paco19613 in reply to Gladys2724 days ago

thankyou i’ll think about it

CDPO1624 days ago

Hi, my fev1 has been 24% for 5 years and I'm not dead yet. Naturally my breathing has deteriorated over the years and my physical abilities become more limited. I didn't find pulmonary rehab helpful at all but others found it very helpful. I think your daily walk is great especially if you can push yourself a bit without overdoing it.I hope joining our friendly forum will help you. We chat about all things lung but lots of general stuff too so it isn't gloomy. There is a wealth of knowledge too if you have any questions again. Best wishes to you.

paco19613 in reply to CDPO1623 days ago

omg thank you so much!!!! you’ve no idea ! that’s the only positive comment i have today which makes me feel a whole lot better x you also suffer with anxiety like me which has been made worse with this diagnosis ?

i’ve got dr appt tuesday to discuss findings of spirometry with respiratory nurse

please stay in touch

k xxxxxxxxx

Troilus in reply to paco1961323 days ago

Sorry to but in Paco, but when you are at your appointment on Tuesday ask how much your asthma may have effected the results and why they did not do reversibility testing.

paco19613 in reply to Troilus23 days ago

ok thanks i will do that

paco19613 in reply to Troilus23 days ago

what is reversibility testing ?

Troilus in reply to paco1961323 days ago

reversibility testing is where you do spirometry without meds, take 4? Puffs of your blue inhaler and redo one of the tests.

Copd and asthma are both obstructive conditions. They way to differentiate them is by this test. In asthma you get a bigger response to the blue inhaler than in copd. A rise of 12% or 200ml? indicates that it is asthma. The plan then is to optimise asthma treatment and review.

I mention this because I was told I had severe copd but reversibility testing showed it was asthma.

paco19613 in reply to Troilus23 days ago

i wasnt asked to take any inhalers with me , the first test i did 5 of as the machine wasn’t working properly so only 1 registered but nurse said that one doesn’t really matter ! it’s the 2 nd part that gives the correct reading which i blew into 3 times & i was shattered by then ! that’s were she gave me a 30% read from x thanks for your reply x

Troilus in reply to paco1961323 days ago

worth mentioning at your meeting.

CDPO16 in reply to paco1961323 days ago

Make a list of questions to take with you on Tuesday. Best wishes.

paco19613 in reply to CDPO1623 days ago

thankyou i’m in the process of doing that now

Karenanne6123 days ago

Hi and welcome to this friendly, funny anf information forum. I was diagnosed seven years ago, following respiratory failure, coma etc. We were told my lungs, at that point, would only last five! Still here🤣 I was dragged kicking and screaming to pulmonary rehab and am convinced it's one of the reasons I'm still here. (You will learn so much that is helpful about managing the condition and what you are capable of.) That and very good consultants. It can be a dreadful , scary shock and some of us have had to make life changes but mostly I'm happy and you will be too. Take time to talk to your consultant. Sometimes writing questions down helps . Find out about respiratory teams, physios etc in your area. There are always wise, funny people here to talk to, not just about our lungs either. Good luck!

paco19613 in reply to Karenanne6123 days ago

thankyou so much for your feed back it means so much i’ll take everything on board your all telling me …….. we’ve both been in such a state this last few days just didn’t know we’re to turn or what to say to each other !!! !!

7 years ago thou at what state are you at ? or what is your lung capacity ?

karen x

Karenanne61 in reply to paco1961323 days ago

I feel ok even though my % is in the low 30s. I am under the transplant clinic at Harefield and their palliative team help with meds etc. I also have a full mot with them every six months, at the moment I'm not unwell enough to go on the live list, which I'm jolly pleased about. Like you , I was horrified that 'they' thought the gym was a good place for me to be. I'd bunked off games and pe at school and had had to learn to walk again after the coma! After pr I discovered yoya, pilates and seated zumba which I love and teach you so much about breathing. Being a member of the leisure centre has also brought me a whole new set of friends. Being seriously ill teaches you who your friends are, sadly. I am so lucky my husband and daughter are amazing. Even my grandson chose as his half term trip West Midlands Safari Park as there would be " no walking for Nan". We are all ready to listen, to chat, to share and help where we can.

paco19613 in reply to Karenanne6123 days ago

awe i’m so with you x good family means everything x

Alberta5623 days ago

Welcome to the forum. I'm sorry you had such a shock with your diagnosis. Not all doctors are good at reassuring patients. There is no reason why you should not be here in 6 months, so please try not to worry. When you are ready think about pulmonary rehab. I found it very helpful. The physio and nurses running my course were all so friendly and helpful that I felt I would be able to contact them at any time I needed help. Good luck.

paco19613 in reply to Alberta5623 days ago

thankyou all this means so much x

Patk123 days ago

Having a diagnosis is a positive = now u can educate yrself about it+ access treatments for it.pulmonary rehab is good - teaches u + u get fitter+ learn how to b more active.imo you only get out of it What effort u put in.youll be with others with respiratory conditions.some will b in better shape than you, some worse + a variety of ages.

paco19613 in reply to Patk123 days ago

i am thinking about it thanks

jackdup23 days ago

it is certainly not a diagnosis anyone ever wants to get but it can be managed and as many have already pointed out you can live for years with a low lung function. Pulmonary Rehab should be beneficial, both in teaching you exercises that can help you maintain your strength but can help you learn breathing techniques and nutrition. A respiratory tech told me years ago that many people can plateau and stay stable for years. COPD is a progressive disease but can stay stable and exercise can help you either stay stable or slow the progression. Best of luck and keep walking everyday and seriously consider a Pulmonary Rehab corse

paco19613 in reply to jackdup23 days ago

thanks i am , is there anything else i could do to help improve that 30% ?

jackdup in reply to paco1961323 days ago

It can vary at times for no specific reason. My respirologist told me it can even vary throughout the day. About a year and a half ago I believe I was at 52% and had a Pulmonary Function Test a couple of weeks ago and was at 57%, so it can improve. Three or four years ago I tested at 48%. Sometimes even how hard your initial blow is when taking the test can make a difference in the results. Of course there is no guarantee your next one will be better but with a bit of exercise and healthy eating hopefully you can keep it from getting worse or at least slowing the progression.

paco19613 in reply to jackdup23 days ago

thanks yea hopefully , i do eat healthy anyway although i’m struggling with my weight coz of lack of excersise

jackdup in reply to paco1961323 days ago

people who lose some weight say their breathing is better but don’t know if it would make any difference to the actual lung function numbers on a spirometry. I assume a person would have to be a fair amount overweight and not just a few pounds to see an improvement.

garshe23 days ago

My Lung function was 30% 4 yrs ago. Dont know what it is now as I don't dwell on numbers. It is the way you deal with it that counts. A Positive attitude is the way forward. Pulmonary Rehab is great and you will learn a lot and meet others with the same condition.

.COPD is not terminal but is progressive. You control how fast it progresses and can slow it down by excercise and the way you live your life. There are far worse diagnosis so count your blessings .

xxSheila 💕⚘

paco19613 in reply to garshe23 days ago

awe sheila thankyou you have made me feel better , xx

garshe in reply to paco1961323 days ago

We all felt like you when diagnosed. I was diagnosed 13yrs ago and was really scared With correct treatment and excercise you can even increase your lung function.

I am 79yrs young this year and still very ,Positive . Keep moving and enjoying life dont give in, theres a lot of living to do out there.

You are still young abs have many years ahead of you

Good luck and good health. xxSheila 💕⚘

We are always here whenever you need to talk or require advice. We are not medically trained but know everything there is to know about COPD .👍👍

paco19613 in reply to garshe23 days ago

thankyou sheila that’s lovely to hear x

jacic6423 days ago

My lung function is about 19 %, I have asthma, chronic bronchitis & emphysema it's really scary when you first get that diagnosis! I finished video link PR course last week & I fully recommend it.You will get lots of good advice here & I learned a lot from the PR course too. The first part of the PR session is exercise, second part is a talk on various aspects of managing your condition.

paco19613 in reply to jacic6423 days ago

thankyou i am seriously thinking about it , think i’m just trying to get my head around the results at the moment .

can i ask how long have you been at 19% for ?

kaz x

muns23 days ago

I did the Pulmonary Rehab course at the end of last year. Honestly, I found it fabulous and would highly recommend it. I learnt a lot about asthma/COPD and doing exercises that work alongside the condition and it gave me confidence that I could manage my condition. Also it was good to share with like minded people what works for them. At some point I hope you feel able to go and check it out as they are all extremely welcoming. We also had a bit of a laugh and I looked forward to my sessions with them all. 10/10 from me.

paco19613 in reply to muns23 days ago

thanks is there a waiting list do you know ?

muns in reply to paco1961323 days ago

Depends on area about the waiting list I would imagine. In my area I waited for about 4 months which isn’t too bad. I went for an induction session before starting the course so they could measure my fitness levels which were very poor, but there were many different levels of fitness on the course and everyone worked to their own plan.

I came out of the course fitter than when I started. Having health issues at the moment but better informed to deal with them once the new inhaler kicks in (I hope).

paco19613 in reply to muns23 days ago

yea completely understand that my fitness level isn’t great either , i shall my go tomorrow about the course thanks x

gingermusic23 days ago

Sorry you have had such a shock but firstly forget about you being here in 6 months time as I am quite confident you will. I have suffered with emphysema for the past 33 years and am still here. I take Trixeo and find it ok to use it is not much different to Trimbo. As for being scared of a Pulmonary group please don't be as if given the chance to attend one please be brave and go (you can have your husband go with you if it helps) as honestly it will give you so much help you will be amazed, I really wish you well keep up the walking your doing. Best wishes Ruth

paco19613 in reply to gingermusic23 days ago

thanks ruth that’s very comforting , im just feeling very sorry for myself at the moment x

gingermusic in reply to paco1961323 days ago

I can fully understand that, and hope in a day or two you will start to feel happier about things. I really do wish you well honestly you have nothing to worry about. Best wishes Ruth

busygardener23 days ago

I attended pulmonary rehab course last year ,best thing i ever did ,would love to do it again ,i even improved .Its usually 1 hr of lectures which are interesting and 1 hr exercises at a level that suits you.The staff are very supportive as well and there is usually a DRAS nurse there as well who will help with any questions that you have .

paco19613 in reply to busygardener23 days ago

yea thanks i’m thinking about it , i think when i’ve got my head around the results and maybe settle down a bit i probably will x

Biker8823 days ago

As others are saying it’s not the end of the world, my lung function has been ar 30% for the last 5 years. It’s worth doing a pulmonary rehab course just to attend the lectures on how to mange your condition, correct breathing techniques etc. start looking at what you can physically do now don’t dwell on what you used to do

paco19613 in reply to Biker8823 days ago

that’s really good advice thanks , wow 5 years ago !!!!! that’s comforting to hear as well ! x

GD5323 days ago

Morning and welcome paco 😊 My diagnosis was 13 years ago, starting after a cruise which I felt unwell on. Getting back to blighty my breathing on walking was chronic! Antibiotics/steroids later and usual tests 🙄 told I had copd.It's helpful if you have the support of your gp/respiratory nurse at practice, they will guide you BUT you must be proactive and honestly find out what works for you.

The forum is great, a friendly bunch, although not professionals we will help with queries and answers only from our experiences and journey 😀

Life is for living, be positive and yes, selfish at times. YOU will get there.

Best wishes. Dawn.xx 🥰

paco19613 in reply to GD5323 days ago

thanks dawn these replies have really helped me already x

Sgt_Pepper23 days ago

It's not the end of the world, as you will discover if you take advantage of the Pulmonary Rehab course where you will learn loads about the actual condition and be taught whole range of techniques to deal with it. I well remember how foolish i felt when I turned up for my first PR session to discover that despite my almost 80 years I was probably the fittest person there as I was one of the few who was not carrying an oxygen bottle and was able to cope with the physical exercises with ease. Go for the PR course and keep reading this forum! Good luck.

paco19613 in reply to Sgt_Pepper23 days ago

thankyou i am going to i think , not everyone can be wrong ! it’s inspiring to hear everyone’s recommendations for it x

Bingo8823 days ago

Good morning paco 19613. Yes it does come as a shock to be diagnosed. To me it was because there is no cure. But we can live for years with this condition. If you don't want to go to Pulmonary rehabilitation. Look on you tube for Pulmonary rehab exercises. You can do this just using a chair to sit and stand. Take care. Brian

paco19613 in reply to Bingo8823 days ago

yes i’m going to do that anyway brian thankyou x

Usedtodance23 days ago

Best things to do is stay off the cigs or vape ,keep mobile. Don’t sit down all the time and sulk ( death by sofa!) I keep as active as I want to, don’t do major exercise but just keep moving.I managed to get my Fev1 % up into the 50s as I was at one point 40%. I took a job in a charity shop a few hours twice a week which helped keeping me fitter a lot. Also steer clear of people with colds or chest infections.I was diagnosed over 10 years.

paco19613 in reply to Usedtodance23 days ago

that’s really comforting to hear , yea 2 yrs free from cigs & vapes ! feel like i am sulking around at the moment can’t concentrate on anything else other than this … but you guys are bringing me out of it i think as now i feel there is hope listening to so many of your stories ! love to hear more about how you got it up to 50% thou !!!

Usedtodance in reply to paco1961323 days ago

just packed up the cigs and vapes. Stopped sulking around and got a job helping at a charity shop 2 days 4 hours per day to keep more active.

Leisurely walk twice weekly in the fresh air. Kept my weight healthy and was mindful about not sitting around too much basically. Oh and avoid being near anyone with a cold. I take Vitamin D which

helps stop infections brewing.

paco19613 in reply to Usedtodance23 days ago

thankyou

paco19613 in reply to Usedtodance23 days ago

i understand getting plenty of fresh air with walking but on the flip side i’ve also read that if the humidity levels rise above 70 that can make your breathing worse which makes some sense to me as some days whilst i’m out is worse than others !

Kristicats23 days ago

Hi there just wanted to say that when I was diagnosed I sent off for the BLF booklet as advised by my local breath easy group which was very informative and has simple exercises at all levels that I still use to this day as I’m not an exercise or gym person . Be positive, take your inhalers, think about avoiding colds and flu, careful around pollutants such as smoke. Don’t sit around moping and keep as mobile as you can. You may actually increase your 30%! Please let us know how you get on. We are all in a similar boat on here and get much support and guidance from each other

paco19613 in reply to Kristicats23 days ago

it just scares me when i am out of breath as i think it’s a strain on my heart …..i will keep you all updated on my journey thankyou to you all 🥰 kaz

Usedtodance in reply to paco1961323 days ago

you could do regular breathing exercise to expand your lungs. Breathe in through the nose into your belly count to I.e 7 ( or whatever you can do) hold for a few seconds then breathe out slowly through your mouth with pursed lips( like blowing a candle out) for double the count that you breathed in. I.E if you breathed in 7 counts, breathe out slowly 14 counts. Worth a try. I do it a few times when I get to bed.

paco19613 in reply to Usedtodance23 days ago

thanks deffo going to try that x

Karenanne61 in reply to paco1961323 days ago

One of the things I was taught on pr is that it's actually ok to get out of breath. I don't mean lips turning blue but a bit breathless, see how puffed athletes get!

paco19613 in reply to Karenanne6123 days ago

even though it causes me to panic & i then worry about strain on the heart 🙈 x

Karenanne61 in reply to paco1961322 days ago

I know! It's very scary!

Bevvy in reply to paco1961322 days ago

Welcome to the group. Going to a pulmonary rehab class would be far more beneficial than doing online. They will assess how you currently are and then at end of course will compare it! Usually it will have improved. You will also learn the difference between “out of breath” and should continue and when you should stop for a rest!! You will also meet a nice group of people who are in a similar situation.

Finally when you discuss results with gp I suggest you query how lung function test was done. I have always part way through had to take blue inhaler to see if any difference, so am surprised you didn’t.

Trishe23 days ago

Hi Paco,I'm sorry you've had an awful shock, you have done the best thing you could have done, by stopping smoking.

Don't be afraid of pulmonary rehab, it is not anything like you are probably thinking of, it's some exercises to help you breathe better open up your airways etc, there will be others in the same position as you, you will be given a talk of various things to, but as a class, it's brilliant, when I attended I came away with the thought 'how brilliant is this' and started up my own group, for theones who wanted to carry on its the comeraderie as much as anything else, we are still going 15 years later, my advice give it a go and see how you get on, let us know how you go x

Trish

paco1961323 days ago

thankyou trish i will do x

Lupino23 days ago

Hello Paco,

You’ve made a good move in joining this friendly and supportive forum where you’ll feel less alone and more confident and informed. Apart from trying to understand spirometry results, looking after yourself on a daily basis such as taking more water to loosen lung secretions, walking exercise as tolerated all will help and empower you. 🤗x

paco1961323 days ago

thankyou i’ve realised that x

PAP4822 days ago

I, too, am so sorry you've had such a shock. A bit further down the road, please reconsider Pulmonary Rehab. I have found it invaluable, not only from the exercise and information point of view but mentally too. Being with people in a similar situation and with the gentle guidance of the physiotherapists is such a safe place to be. Also it gives other lines of communication to ask questions and hear others' experiences. The physios are so kind and encouraging and help every step of the way. Take care.

paco19613 in reply to PAP4822 days ago

thankyou i am considering it x

Skatergirl113 days ago

hi Paco, I’ve just read your post; and want to give you some encouragement. I was diagnosed 5 years ago at age 55. My fev at the time was 43% and I would get breathless walking to the shops. I stopped smoking immediately, and attended the PR classes for 12 weeks, which was very educational and improved my fitness levels, to the extent I took up ice skating again twice a week, something I hadn’t done since a child. I caught covid 2 years ago, which knocked me off my feet, and left me being unable to walk more than 10 feet without getting breathless, so I bought myself a walking treadmill from ideal world and started gently to build up my stamina again, my fev 1 is now 30% but I can walk 5k in an hour (on the flat) hills I struggle with and have to take my time and I have since got a rescue dog to walk daily to make sure I get out and about. I do get tired as the day goes on but have learnt to rest and adjust. There is still plenty of life and activity in me yet and plan to live a good life and die with the condition and not from it. Keep strong and I believe mind over matter goes a long way . Best wishes

paco19613 in reply to Skatergirl113 days ago

thanks that is very encouraging , i assume your not on oxygen then as a lot of people on here are with such low lung function ? i can’t imagine being able to walk half a mile out of breath never mind 5 at this moment in time as i struggle too much ! this damp weather don’t help either !!! i’m just wondering how long i’ll have to wait before i hear about pr …… i am trying to do some steps at home but scared of over doing it coz of the effects it can have on your heart …… can’t win really 🙏🏼🙄x

Skatergirl1 in reply to paco1961310 days ago

hi, no I am not on oxygen at the moment and plan to keep it that way for as long as possible, my heart is also compensating for my lungs, but my mind set is to push myself as I don’t want to be indoors until I have to, which hopefully won’t be for a few years yet xx

Dl9813 days ago

I'd ask about ACOS. My mum has it. Gets marked as just COPD a lot

Dl9813 days ago

ACOS is characterised by persistent airflow limitation with several features usually associated with asthma, and several features usually associated with COPD

paco19613 in reply to Dl9813 days ago

i’ll look into that thanks x

2013mayo6 days ago

I too have been just told this, I had pneumonia recently and as a result had various scans. I’ve been diagnosed with severe emphysema and feel distraught.

I’ve been saying 🙏 Novena and St Jude.

I’ve have started pulmonary rehab, please go as it can help, it’s hard work but does help muscle strength, they also give you loads of advice regarding ways to help you cope with breathing difficulties and life style changes.

I’ve lost a lot of weight, they are going to refer me to a nhs nutritionist to try and build my weight up. They also advice various ways of dealing with exacerbations.

Take care

paco19613 in reply to 2013mayo6 days ago

thanks for your reply also ….. ive just been told there’s a 3/4 month waiting list for me to do pr and feel distraught…….

i feel a bit in limbo as im scared of over doing it and scared of not doing anything and making it worse .

i left the house the other night to go for a walk and only managed to get to the bottom of the road and had to turn back it was just too much for me i got upset and panicky which doesn’t help i know but i can’t stay confined to the house for the next 3/4 months either !!!!

i’m trying to do gently exercises at home but i don’t feel it’s enough but scared to push myself from the fear of getting out of breath either !

can’t win !!!!

2013mayo6 days ago

hi,

Don’t get upset by being out of breath, the idea is to strengthen your lungs, just a short walk helps.

🤞🤞🤞

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