Can you please help me understand wha... - British Lung Foun...

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Can you please help me understand what's happening 🤷‍♀️

Breathe-73 profile image

So I've seen my consultant again after the CT scan and he's told me what was going on, a lot of what I was told I've forgotten due to my memory, I'm trying not to Google the things I have wrong but wondering if anyone has a simpler way to explain what is going on with me please. I'm 48, not been able to work for the last 9 months (painter & decorator) and now have laryngitis that just won't go away.

He also mentioned in the letter about me being able to only walk 10 mins before I get breathless, am I ever going to be able to go back to work? It's a huge strain on us financially as now only have fiancé's wage coming in. Would I be able to claim PIP do you know please?

Just want to mention the consultant has referred me to ENT as he believes it will probably be the sinusitis issues causing the laryngitis 🤷‍♀️

Also the dietitian as I keep dropping in weight fluctuating between 7 and 8 stone. (I do eat well).

Also needing a steroid blood test as I had an awful lot of steroids given to me last year whilst they were treating me for Asthma! (Inhalers and oral steroids).

Any info that could possibly help me understand better would be great.

Apologies for the lengthy post.

Ps the stopping smoking is definitely getting there, and I will do it 💪😊

36 Replies
Damon1864 profile image
Damon1864Volunteer

Hello Breath-73 and welcome to the site, ask for an appointment with either your respiratory team or GP, they will be able to explain things to you, at least then you will know what you are dealing with. You can put a claim form in for pip and hopefully you will be granted it. Please let us know how you get on, and keep posting. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Breathe-73 profile image
Breathe-73 in reply to Damon1864

Last time I called my GP because of a flare up (July) I was told 'you have copd that's what happens' had to just get on with it, this has put me off calling them again. I suffer with anxiety so that really wasn't helpful at all. Last year they pumped 4 courses of oral steroids along with the highest dose of steroid inhalers a GP can give. My consultant has stopped the steroids, he believes its been a burden on me and my bones. Just don't know who to turn to. The consultant did explain it as best as he can but with all that's going on my memory is not great. My fiancé was with me and even he's confused with it all.

I'm still constantly coughing trying to bring the phlegm/mucus up, I have Anoro which I take once a day but needing my blue reliever inhaler around 6 times a day.

I'm considering the PIP but even that worries me.

Melissa. X

Patk1 profile image
Patk1 in reply to Breathe-73

U need to stop smoking as it causes copd,and inflammation in lungs and airways.

HI, non of us are qualified to give you a diagnosis based on your consultants report and spirometry and CT results but i think from what we do know there is no cause for any great alarm or undue anxiety from the figures revealed.Your consultant basicaly want's with the aid of the dietician initially to increase your weight so that you might undertake pulmonary rehabilitation and build up your general strength which of course includes the muscles that help you breath.

Your referal to ENT should help to reveal the scourse of this constant Laryngitis which may actualy be contributing to your lung condition?

I think by following his plan you will eventually reach a stage where you are once again fit to return to work.feel a lot healthier and become less breathless and hopefully continue onwards and upwards and enjoy a long and healthy life.

Very best wishes for the future.

Ski's and Scruffy.

🙃😻

Breathe-73 profile image
Breathe-73 in reply to skischool

Thank you, this is very reassuring 😊 I know he also wants me to have a DEXA scan to check my bones, this was supposed to have been done before the visit to him, but with nhs so pushed I guess it's a waiting game.

2 years I've been like this and the real help has only just begun after the diagnosis in June, I've been waiting months for help, the spirometry was in early Feb and results given in June 😕 (was I forgotten or is that how long it takes!)

skischool profile image
skischool in reply to Breathe-73

Unfortunately the pandemic has delayed everything but the fact that you were not bounced up the ladder so to speak is probably indicative that your consultant is not to concerned at the present time but thankfully a system and process is now in place to make you feel a great deal better in the near future.

😊

ninelives profile image
ninelives in reply to Breathe-73

I do sympathize ,I had spirometry done in May and am still awaiting results.If you don't feel comfortable with that GP can you see another one in the same practise?

Best of luck and do let us know how you get on.

Breathe-73 profile image
Breathe-73 in reply to ninelives

I had the spirometry at the hospital, I thought not hearing from them meant everything was ok. I did call the hospital but was told I'd receive an appointment in the post. I know how pushed the NHS right now but 4 months to be told I have copd and an extra 4 months of steroid burden. I have a flare-up at the mo, I spoke to GP yesterday he said I'll give you some antibiotics and steroids, I asked if it's ok for me to take the steroids as my consultant doesn't want me having them, he's told me to take the antibiotics but if I'm still struggling come Monday that I should start the steroids. So confusing what's best to do. Gp says take them consultant says not to 🤷‍♀️

Breathe-73 profile image
Breathe-73 in reply to ninelives

I've never seen/spoke to same Dr at my GP surgery. And I guess all Dr's have a different opinion. When I had a flare-up in July one Dr said you have copd that's what happens and was left to get on with it, was awful recovering, and totally put me off calling doctors for help until yesterday when I had no choice, luckily had a friendly Dr who understood 😊

ninelives profile image
ninelives in reply to Breathe-73

I am so sorry to hear of your struggles with different doctors and different advice from them.If you feel unwell ,or struggle to breathe please don't wait until Monday to seek medical advice.

I do hope that the antibiotics start to work soon and that you feel better

I think the problem with interpreting CT scans is it’s a bit black and white. It’s there or it’s not, that’s the scary part. It doesn’t account for the fact that all your other metrics like FEV1 / FVC etc are extremely normal bar a mildy reduced DLCO. Most with a diagnosis of COPD will have abnormalities on a CT, in fact in research studies smokers without symptoms have evidence of Emphysema on CT. There are new inhalers now designed to treat the small airways. It’s seems you have caught this early, maybe give the BLF helpline a call to run through the report.

Hi, I had chronic sinusitis for many years. Horrendous headaches (treated for migraine but of course it wasn't that). Had a head scan for an unrelated jaw problem and the consultant took it straight through to ENT. Long story short all sinus cavities were choka block with solid infected matter. When there's bacteria in your upper airways it can transfer downwards to throat & lungs (as can stomach acid particles transfer to airways as they're fairly close). I'm not a medic, this was explained to me by consultants.

I too have small airways disease. It's annoying however, with the correct medication/ inhalers that suit me plus greatly improving my immune system im so very much better than I was. At one time I believed my life as I knew it was over. It wasn't.

Fact: smoking is bad for you in so many ways - including lowering immune systems.

Fact: we gave to be proactive in getting attention from the NHS. There are ways to be insistant without being rude or aggressive - not suggesting that you are for one moment, I learnt the hard way of just waiting which took years while my lungs got more damaged.

Now thank heavens you're in the system. Good luck to plus with quitting smoking. P

I can’t help with your scan results etc I’m not a medic and others have given good advise

However can help with PIP, this is one of the few non means tested benefits for working age people

PIP is not dependent on any diagnosis but how your illness effects your daily life. Can you wash and dress yourself independently

Breathe-73 profile image
Breathe-73 in reply to judes

I can but even that gets me breathless, seems silly if I only have this mild! Some days it takes it right out of me just to do one flight of stairs in my house. My heart rate goes as high as 161 just going from bedroom to kitchen (it's only a small 2 bed house).

I'd try getting another job but still don't think I'd earn as much as I did in the trade I was doing, so we'd still struggle, and then there's the question of who'd take me on, I only have to speak and you'd know there's something wrong with me and then there's the constant coughing, and only sleep around 3/4 hours a night some nights then 11/12 hours other nights.

I feel like a right old winger, sorry 😄

Thank you. X

Digger0 profile image
Digger0 in reply to Breathe-73

Hi. When you fill in the PIP forms - do it as your worst day as that is what they want to know about. Also if they ask about cooking, they mean peel spuds, clean veg, carry pans of boiing water etc no t using a microwave.

B0xermad profile image
B0xermad in reply to Breathe-73

Hi I would try for the PIP ,I get it even if its standard amount as time goes on you may be able to get a better rate

Oops pressed send before I’d finished the cat is crawling over me!

Anyway as I was saying PIP is about day to day living, communication, getting about and mental health.

The PIP form is long, very long and it would be a good idea to get help filling it in such as the citizen advise bureau. There is also a web site called benefits and work costs about £20 a year but is very good and there’s and active forum where you can ask questions.

Hugs

J

Breathe-73 profile image
Breathe-73 in reply to judes

😄😄 I know what it's like my dog loves to interrupt the moment I get on my mobile 😄 Is that a uk site?

It is I have used it in the past there’s a lot of downloads about PIP and other disability benefits

Always make sure you fill it in with your worst day, it’s not the time to say yes I can do that when you have a good day.

J

Breathe-73 profile image
Breathe-73 in reply to judes

Bless you 🙏 thank you so much, my other half is taking me for dinner tonight 😁 so I will get onto this tomorrow. Why can't they just believe what the doctors and consultants say, don't understand why they need to check themselves, it's like they think doctors are doing us a favour, lying for us and giving us a made up diagnosis! I'd much rather be back out there working and enjoying life as it was 😏

Melissa. X

Bevvy profile image
Bevvy in reply to Breathe-73

What you need to remember is PIP is NOT given due to a diagnosis or medical condition. It is about how the disability/condition affects you.I strongly advise you (as others have said) to get help completing the forms. CAB can be very helpful. As can benefitsandwork.co.uk. Their guides are excellent.

Receiving PIP depends very much on how form is completed plus information given on assessment. You need to consider worse days. If you talk about good days you will be declined!

Finally many people are declined initially and have to appeal so don’t be disheartened if this should happen.

Kgmj profile image
Kgmj in reply to Breathe-73

When I first claimed pip they told me they don't even get in touch with gp or consultants. Just go by how u are on day. Totally ridiculous.

Melissa, Can I just jump in with all this discussion of PIP etc. With your lung function and good numbers Rehab, an excercise program, breathing techniques and the right medication you will have no problems working for a long time. I appreciate painting requires you to be active but there will be other alternatives to consider. Lots here and over on the COPD Foundation website still working with FEV1’s of 25% and DLCO’s of not much higher. One woman with an FEV1 of 25 or so was a senior manager of a company and was flying all over the US up to the age of 71. There really are some inspiring stories. Our good friend 2Greys is in the severe category and is out sailing his boat. Your lungs will outlive you with your numbers, give up smoking though to be certain of it. You have a wedding to look forward to don’t let this get in the way of life!

Breathe-73 profile image
Breathe-73 in reply to ck101

Oh thank you so much, I love how you're all so reassuring. 2Greys has told me there story, I was amazed how they do it. I feel so exhausted all the time and the constant coughing really tires me out, so hopefully after the p.rehab and a few other tests they need to do I can get back to work, I guess I won't be like I was but it's great to hear I will 😊

I've been considering a career change because of all of this happening, I'd like to work as a carer for the older people but I'm worried I wouldn't be allowed if I'm like this.

I'm literally tiny now, no meat on me, see my bones in some places and this worries me.

I just want the old me back!

Yes 12 weeks till the wedding, at least this organising is kind of keep my mind of my health.

Thank you again.

Melissa. X

Bevvy profile image
Bevvy in reply to Breathe-73

Great that you are considering a new career however having been involved with carers both professionally and personally with neighbours I want to warn you. As well as being known to be low paid the work is extremely physically demanding. Would hate for you to jump from the frying pan…….

Bevvy profile image
Bevvy in reply to ck101

Whilst inspiring stories have their place it is important to remember that other people may not be able to reach those lofty heights! I struggled working for a number of years and receiving first DLA and then PIP ensured I was able to remain in the work place. This was because by virtue of the money I was able to work part time. Having said this it was incredibly difficult. Physically and mentally as well as financially. I was medically retired last winter at the relatively young age of 52 and this was supported by several doctors. I had just gone as far as I could in work. I would hate to think I was viewed as a lessor person because I couldn’t work anymore.

Hanne62 profile image
Hanne62 in reply to Bevvy

I also worked part-time only, and for 3yrs, when I couldn’t work at all, I received ESA. There’s no shame in not being superwoman!

The coughing will calm down when you stop smoking, it will take a bit of time though, promise!

Hi, Melissa. Firstly, why not phone the BLF helpline, if you haven’t done so. It’s 03000 555 030. One of the specialist nurses can help you understand that report and also chat about how to cope with your condition. I think they have a Benefits Advisor too.

With PIP, it doesn’t matter what illness you have, how good your lung function tests are, what drugs you take, or anything like that. All that counts is how it affects YOU. Your mental health is taken account of now, also, and rightly so. Don’t even attempt to fill in the form yourself! It’s a nightmare, & designed to put you off claiming. Also, there are things you must say in reply to questions which you might not think relevant but if you miss them out you’ll lose points towards your claim. Look at Benefits & Work, or Turn2Us, and also try to find a local organisation which handles these forms on a regular basis & knows all about disability legislation. If you could go there in person and go through the form face to face, so much the better, but I don’t know whether disability charities offer this service now.

From what you say, it definitely sounds to me as if you would qualify for PIP, provided you get help with the application. You might be granted it for, say, one year, which would take the pressure off financially whilst you work on stopping smoking and improving your physical and mental health.

I wish you well in getting your life back 😘

I was always under the impression, along with the GOLD standard that a diagnosis of COPD was only reached when the FEV1/FVC ratio was less than 0.7. Yours is 0.73 so......?

ck101 profile image
ck101 in reply to Hoobs

And so was I Hoobs! This whole area is being redefined as time marches on. They are still learning.

Here are two more useful websites

advicelocal.uk

disabilityrightsuk.org

If it’s all too much for you, don’t forget MIND too

mind.org.uk

Welcome to the forum, Melissa. I'm no medic, but it's good that you're getting there on the smoking front. I had to help my autistic daughter claim PIP- we had a real tussle and only succeeded with the help of a lady from Mencap. It really is essential to have a knowledgeable person help fill in the forms. The others have given you some excellent advice. The Cab would have helped us if Mencap hadn't.I have a gadget called an AeroBika prescribed when I was really bad which made bringing up sputum much easier. Talk to your doc about that or a similar device if you can bear to. Good luck- hope and trust things will start to improve from now on.

As a smoker i sat on my settee coughing extremely hard for 15-20 mins at a time making me extremely breathless , over heating due to the effort until i could finally cough up a lump of phlegm.Eventually i couldn't deny the link between my smoking and coughing phlegm up , so i gave up with help from my surgery and a hypnotist.

Within a short time i had almost stopped coughing up phlegm , which was an encouragement to keep giving up , but also i was amazed how much energy coughing up phlegm takes.

I started to gain weight again and the symptoms of the COPD were much easier to manage without the coughing , although i still cant walk much more than 15 metres without a rest.

I have to take all chores and physical activity very slowly but its fairly predictable.

Just a few comments on your other points :-

1) Emergency meds - i have steroids and antibiotics at home in case of infection

2) PIP do try and claim it focus hard on your worst days

3) Pulmonary Rehab - great course but im not sure they are running them atm

4) COPD cant be cured atm

Good luck with your condition

Thank you for this, the smoking is getting there, I have been referred to the stop smoking team and they sound like they are going to get me stopped, I know this is not helping me in the slightest and I must stop, I'm determined.

I've had a letter to start the pulmonary rehab, I was actually amazed I was put on it so early on with the disease, but fantastic that I have and looking forward to starting.

I've always been very slim, fast metabolism I'm guessing, but lately I just can't seem to get weight on and stay on, which I guess why he's having me see a dietitian, hopefully this will help, he told me they may give me supplements, fingers crossed I'll be moaning about being to big soon 😄

I'm going to look into the pip today, my anxiety and severe laryngitis don't help me when it comes to making phone calls. I called GP surgery this morning and so embarrassed with my voice, but it did get me an appointment so in some ways it's helpful!

The constant coughing drives me insane and gives me so many disturbed nights, it'll be tough if and when I am able to get back to work.

I'm a very house proud person, but obviously being like I am the housework has got so slack, my other half helps as much as he can but I feel so guilty that he's out at work all day then has to come home to this. I know he doesn't mind and will do anything to help me, but it doesn't stop the feeling of being useless.

Thank you so much for your help 🙏

Melissa. X

Bevvy profile image
Bevvy in reply to Breathe-73

If you are successful with PIP claim you will be able to pay for a cleaner! Well worth the money. Sadly at the moment I can’t find a cleaner anywhere ☹️

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