I have COPD and I feel like the doctor’s are not listening!

[Catherine1978]

My names Catherine I’m 42 I was told about 2 1/2 years ago I have COPD /Emphysema. I’ve really struggled since been told. The last few months I have had a couple of flare ups when phoning the doctors on one occasion I was told by the doctor I was bringing it on myself due to having panic attacks which made question if I was doing it to myself. A few days later had another one phoned the doctors again was given antibiotics and steroids. Seemed to be ok up until last few days I have a lot of problems with my sinuses as-well does anybody else? Ive not had a review or breathing test due to Covid and I’m feeling like I’m just being left to it. I don’t sleep to good have low moods which the doctors have told me speak to a councillor. I have 2 inhalers Ventolin, one which I use once a day plus steroids nasal spray.

[vwtopaz]

Hi Catherine sorry I cannot offer any advice on your conditions, this is a great forum with very caring and compassionate people who can share experiences, I suggest you write to your GP expressing how you feel your health needs are not being met, they have a duty of care, wishing you well.

[Spacecat1 in reply to vwtopaz]

Make sure you keep emergency pack of antibiotics and steroid tablets so if you do have a flare up you can get straight on to them. Have you got a consultant maybe ring his receptionist and arrange for him to call you. See if you can speak to another gp.. I have copd and my breathing can play up if I get worked up about things.my go put me a tablet to help me stay calm. And orimorph as an extra which I so.etimes have to tKe before we go out.take care

[Catherine1978 in reply to Spacecat1]

Thank you for your advice I have never been given a emergency pack the only time I’ve been given antibiotic and steroids are if I’ve phoned if I have flare up and once when I went into hospital not long after finding out about my copd. My doctors have not being doing face to face apps since the beginning of Covid . I’ve always suffered with Anxiety and stress. Just feel like I’ve been told here you are you have copd then just left to it. And Covid as made it worse because test I probably should be having aren’t happening Xx

[MELNEL]

Hi Catherine, I am sorry to hear that none of the doctors offer better treatment for you. I might suggest that you arrange an appointment to see a doctor in person and not speak over the phone. On a call is always rush rush and you have even less the time to actually ask something.I would speak to the GP that you struggling and express your concern and if it is possible that to get in touch with an resperatoriy consultant as well when the lockdown is lifted to get into pulmonary rehabilitation when you struggling.

As well it might be helpful to get in touch with one of the nurses here on the forum, they have a helpline and they are very helpful to offer support and put you in the right direction what to do. You can find the numbers on the link About.

I hope that you get some answers and help for your problems.

I totally understand your situation, special in this time where it is even harder to speak to someone. Please don't give up 😘🌹🌹🌹 hope you will get better again and get the support you need.

[Catherine1978 in reply to MELNEL]

Thank you for your advice but for the last 12 months my doctors have only been doing phone calls or FaceTime

[MELNEL in reply to Catherine1978]

What? No face to face visit....last 12 month. That's unbelievable that the GP surgery don't want that you come in when you struggling this much.I mean I am shielding as well over a year and was able to get an appointment a couple of times to see a doctor at the surgery when I was struggling or had something else I had problems with. How they take care of patients....I feel very sorry for you, I am actually speechless that you only have appointments per phone....I definitely would call the helpline here in the forum.

I really hope that you get the help you actually need. 🌹🌹🌹

[Albertdog in reply to MELNEL]

Lucky you...haven't had a face to face with GP for some 15 months now - despite having to call paramedic due to bad turn . First thing they asked for was my rescue pack - told them I hadn't been supplied one. Said I should have one and told me to ring GP. Paramedics did their job with oxygen and a nebuliser- they wanted to take me to hospital - but I eventually recovered.Phoned GP next day but could only speak to a nurse - who told me they didn't supply rescue packs...!!!!

So like you - what do I do if it happens again...???go to hospital!!!?? at 84 don't want this experience again ... but !!!

can only hope things get better when lockdown is removed.

Hope things improve for you - take care...

[MELNEL in reply to Albertdog]

I am so very sorry 😔 that you are in the same situation.....I am speechless that the service of your GP is so bad. I can't believe that they not prescribed you your rescue pack! Unbelievable. I guess you also have no consultant at the hospital to help you out that you getting your rescue pack prescribed? It must be awful to get treated like this in a way when you are needing help. I hope that things turn out better in the next weeks... hopefully I wishing you all the best from the bottom of my heart that you getting the medication you need.🌹🌹🌹

[Jamesdimitri]

Hi catherine I’m in exactly the same situation as you I’m 42 and I was diagnosed with copd emphysema just over a year ago before covid I was told while standing in the dr s waiting room and that was it no questions no information just simply you have copd now goodbye I’m really starting to struggle now but when I call my dr they don’t really want to know it’s like get on with it. I know there isn’t that much that they can do but there are a few medications that can ease the suffering a little

[hypercat54 in reply to Jamesdimitri]

That's one of the things BLF are trying to do. As they say on their blurb they are the only charity in the UK for lung disease despite this being the 3rd leading cause of death.

The big two - cancer and strokes/heart attacks have recognised procedures ie you see a dr and they automatically refer you to a consultant for your most effective treatment regime. I guess this is understandable in a way as they are more immediately deadly and lung disease isn't usually. Also I think they still have the attitude that lung disease is our fault especially those with copd because we have brought it on ourselves through smoking. It's the blame game.

However not all copders were smokers but they get lumped in with the rest. Those with other types of lung disease are seen as more unusual and treated as a 'rare disease' with little research done.

I was diagnosed with mild copd by a respiratory nurse, not a doctor. My surgery told me doctors are much too busy to deal with this and any questions should be dealt with by the nurse as 'They are more knowledgeable about it anyway'. Crazy.

That's why I joined this site to find out more about my condition and most of what I know I have learnt here.

[Scramy]

Hi Catherine I myself have only just been diognosed I’m only very young like yourself. First of all call British lung foundation it’s a free phone number get it off their website hun. They were great with me. Second get the doctors rang and say you want referred to a specialist ( you are perfectly within your right to ask for this) see we’re that gets you. I’ve been told I’m only 34 and a none smoker why would I have this? ( I don’t know I’ve not been medically trained) lastly I found the people on here amazing.

[maggiewhiteley in reply to Scramy]

Ask to be tested for alpha.1 Deficiency. If sometimes happens that copd can be genetic. Hane you actually been tested for Emphysema, lung function test etc?

[Catherine1978 in reply to maggiewhiteley]

Thank you for your reply my dad has copd. My mums mum had copd passed away 18 years ago and my uncle on my mums side has copd so I do believe there’s some kind of connection. I had a blow test not sure if that what you are referring too when I first got told also I had a chest X-ray I was told nothing was showing up on the X-ray but my reading on the breathing test was what told them I had copd I had been coughing for a while and my partner said my coughing was sounding different.

[maggiewhiteley in reply to Catherine1978]

Considering your reply I would definately insist on the alpha test. Copd is an umbrella name for several lung problems, perhaps you should also ask for a lung function test which is far more detailed than those done at the Dr surgery. A chest eray might show infection but apparently not copd. It might be easier to be referred to a respiratory specialist. Let us know how you get on

[Catherine1978 in reply to maggiewhiteley]

Thank you

[O2Trees in reply to Scramy]

Maggie is right. Alpha-1-antitrypsan can turn out to be the genetic explanation as to why younger people who have often never smoked get copd. Definitely worth asking for the A1A blood test which btw your doctor should have offered you.

[Catherine1978 in reply to O2Trees]

Thank you for your reply I have never been offered any kind of blood test.

[1carus]

hi Catherinesorry to ear about the flare ups - sadly they do happen but it sounds like you should ask for a referral to a specialist as there may be other complications - I have COPD and bronchiectasis and despite many tests the results do not indicate the level of problems with mucous production and breathing issues. My specialist has put me on nebulised saline and an antibiotic colomycin daily which so far has kept recurring infections at bay.

[Catherine1978 in reply to 1carus]

Thank you for your reply I tend to have a lot of problems sinus wise where I always feel like I’m stuffed up and need blow my nose a lot but it’s like think mucus I do have a steroid nasal spray which does help some. But I have said I think that’s what’s causing my flare up because my nose is constant but I’m no doctor I could be wrong

[1carus in reply to Catherine1978]

dear Catherine - you could be wrong but we do tend to know our own bodies. I have an awful mucous problem which means I am coughing to clear it up to 5 hours a day with a variety of nasal and steroid puffers and nothing seems to reduce it . I fill 5 or 6 handkerchiefs each day and my allergy tests are all negative so it is still a mystery after many years. I keep trying new meds suggested by my specialist and have in the past had surgery to improve airways and clean out sinuses to no avail - I will keep trying but so far I am told it is the chronic bronchitis and the bronchiectasis that are the main culprits for increased mucous production generally

[Zelene]

I’ve had emphysema for 10 years but it’s only in the last 6 months I’ve struggled, I now have panic attacks which makes breathing even harder, doctors and copd response have told me I’m making things worse by panicking, I agree but when your struggling to get breathe then anyone would panick, I am on medication to help me relax more, I also get depressed every day, being stuck in at home doesn’t help, but do exercises as best you can every day, do everything slow and ask doctor about joining pulmonary rehab, it will help you

[Catherine1978 in reply to Zelene]

Thank you for your reply I know exactly how you feel like you say nothing worse than feeling like you can’t breathe and yes you are going panic like anyone would it’s not that easy not too. I’ve never been offered any kind of pulmonary rehab.

[Zelene in reply to Catherine1978]

Ask at doctors or if you have copd response team, the exercises actually help

[Ergendl]

Sometimes, I wish some of our doctors who "care" for us were forced to wear a mask with only a straw to breathe through for one full day including all activities. It might help them rethink what it means to have COPD and other lung issues, and be less judgemental about anxiety and panic.

[MELNEL in reply to Ergendl]

I totally agree with your comment. It is definitely not easy to breathe with a mask on. I do really struggle when wearing it, even for a short period it's so hard that I just rip it off as soon I leave the store or office.

[Zelene in reply to Ergendl]

I agree with you

[sassy59]

Hi Catherine, maybe give the BLF helpline a ring on 03000 030 555 and have a chat with them. Doctors really need to do more to help those newly diagnosed with COPD as anxiety and panic attacks often happen.

I do wish you well. Xxx

[Catherine1978 in reply to sassy59]

Thank you for you reply and your well wishes. I will give them a ring thank you for the number.

[Dizzart]

I can totally understand your worry as I was in a similar situation with no caring doctor available so I turned to health Unlocked and found I wasn’t alone and learned from other people what medication etc they found successful. Having done that I also did my own research on meds through sites such as Very well health and British Lung Foundation then I rang and asked for what I wanted to try. Luckily now I have been allocated a nurse who deals with asthma etc and she’s nice but I still make it quite clear what I need. And I havnt needed any of them now for over a year Whew! Good luck you will soon be your own best medic , it’s not rocket science 👍🏻👍🏻

[Catherine1978 in reply to Dizzart]

Thank you

[Dizzart in reply to Catherine1978]

Do hope you find help on here as I was so upset at first just like you so never feel alone XX

[Catherine1978 in reply to Dizzart]

Thank you I was crying earlier couldn’t believe how many people have reached out Thank you to all of you 💕💕

[Alberta56]

i feel angry that you and heaven knows how many other people are being short changed. You need a more thorough diagnosis to get you on the best medications for you plus the other aids available. There is plenty of good advice available on this forum, but we are not medics, so you need to see a respiratory specialist. Grrr! to your doc's remarks on panic attacks- no evidence that they are the cause, and, if they are, that is perfectly understandable and nothing to be judgemental about. Best wishes and good luck.

[Catherine1978 in reply to Alberta56]

Thank you for your reply and concern The doctor did make me feel like I was wasting his time and I was bringing it on myself that was the last thing I wanted to hear. But then after having another flare up a few days later was given antibiotics and steroids. I feel like we all know when there’s something wrong with are own bodies and should be listened to more.

[Alberta56 in reply to Catherine1978]

Well done for standing up to the doctor .I hope he is now somewhat better educated about Copd and will be more responsive to his lung patients' needs.

[garshe]

Hi Catherine COPD is not terminal it is a progressive disease. You can control how fast it progresses by your lifestyle.

As regards to your sinuses I use Steremar congestion relief every morning. Works for me and helps my breathing by clearing stuffy nose..

Panic attacks are often associated to COPD. I control these with my breathing.

I was diagnosed 11yrs ago with severe COPD, panicked when first diagnosed but soon learned there are other diseases worse than mine.

Talk to your Respiratory team and they will give you advice on managing your condition. Pulmonary rehab is a course run by them but unfortunately could be on hold with the Pandemic situation

Just remember it is not Terminal but progressive and there are some on here diagnosed 20 to 30 yrs ago .xxSheila 💕💕

[Catherine1978 in reply to garshe]

Thanks for your reply I never been told about any respiratory team or pulmonary rehab. I can’t even get a face to face app with my doctors in the first place to get the yearly checks done. I do have a nasal steroid spray that helps some with my nose but I still have a lot of congestion always blowing my nose. I have to use it once a day if I don’t use it I’m constantly sneezing and nose running.

[garshe in reply to Catherine1978]

I never see my doctor. I have a Respiratory team whom I can contact anytime for advice or if I need them to call. They work with my Consultant and arrange visits if needed. Just been for my oxygen check at the hospital with Katrina who is one of the team. Needed blood taken from vein in wrist for accurate reading. I feel safe with having their direct phone number and can call any time.They also sort my medication and any problems they get it all sorted. The Pulmonary rehab course is on hold at present but once it starts up again book to go on it and then you will meet the Respiratory team for your area .good luck.xxSheila.😘💕

[Biker88]

I have COPD and Aspergillosis, have you been given any advice on breathing techniques and breathlessness. I have been fortunate to go on a pulmonary rehab course as well as talks on managing breathlessness and a bonus one-to-one with a physio. If you haven’t had any advice COVID permitting ask for a referral to a pulmonary rehab course and possibly a physio. The BLF website has info on breathing which is worth a read. Controlling your breathing goes a long way with managing panic attacks

[Catherine1978 in reply to Biker88]

Hi thanks for your reply no I’ve never been given any advice on breathing only what I’ve researched myself on the internet

[CDPO16]

Hi and welcome Catherine. Some good advice above. Best wishes.

[Catherine1978 in reply to CDPO16]

Thank you for your wishes.

[Hidden]

Hello Catherine 1978 I'm new to this site and have the same condition as you just a suggestion because a nurse told me to get a nebuliser to use when one has a flare up and believe me it really does help as I was told when I was 50 and I'm now 71 but you will need to ask your doctor for the ventalin for it. I hope this helps.

[Catherine1978 in reply to Hidden]

Thank you for your reply

[Thepainterswife]

So sorry to hear you’re struggling, it seems to be quite a common complaint that you need to fight for attention with this disease. My husband was just like you when he was diagnosed 16 years ago , he often panicked, understandably when you suddenly find yourself unable to breathe! As a family we learned to stay with him , encouraged him to breathe deeply until he calmed down but obviously it was frightening for us too as we weren’t used to dealing with the condition. These days he knows exactly how to handle flare ups and we do have all the rescue packs ( although we still have to fight to get antibiotics) , tests and everything we need in place . Things have been much easier since he was referred to the respiratory team five years ago but we had to fight to get the referral. My daughter complained in person to the Gp and the following week I did the same . Hubby doesn’t have problems with sinus but I do ( I don’t have copd ) and whenever I start with a head cold hubby has an exacerbation 🙈 so that would tie in with your flare ups Good luck xx

[Catherine1978 in reply to Thepainterswife]

Thank you for your reply I’ve never been offered a rescue pack I ring the doctors every time I have a flare up so that they have it on record they don’t like giving antibiotics but I feel that I know my own body. I do believe my flare up have got a lot to do with my sinuses I might be wrong as I’m not a doctor but my sinuses are constantly having congestion.

[Lol1944]

Yet another example on this forum of people not receiving the proper care from their gp. I am sorry to hear this and can only advise you to put in writing to your gp your request to see a respiratory specialist. If this request is ignored then again in writing make an official complaint to the gp. For starters you must have a rescue pack at home at all times. Every single exacerbation must be jumped upon rapid because of the lung damage caused which sets back lung function. Again any gp refusal must be complained about as such refusal is contrary to n.ic.e quite lines. Respiratory consultants and also special respiratory practitioners are needed, as are respiratory studies. Whilst I wish you the best of luck for the future may I stress that luck is not in it with regard to your care. Your correct medical care is your entitlement.

[Catherine1978 in reply to Lol1944]

Thank you for your reply I never been given a rescue pack for home always phone the doctors when I’ve had a flare up usually been given steroids and antibiotics or given one then have to phone for the other because one doesn’t work enough on there own. Thank you for your advice

[Dollybow]

Hello Catherine, i also have copd emphasema, and had lung surgery,I have had copd for around 15yrs, In the begining I was like you, I was worried couldent sleep, and had panick attacks, I went to A.E. the Dr that spoke to me told me all about it, after that I felt much better, sinuses dry out because of breathing and can lead to a dry mouth, there should be a allocated respiratory nurse at your local Drs surgery, book an appointment with him or her then that will give you a better understanding of things, they can percribe any new inhalers you may need, put you faward to see specialists, I have sever emphasema, I want to tell you to stop worrying and think positive, drink plenty of water, excersise every day, 2 1/2 years of copd /emphaseama is not a death sentance, you have lots of life to live yet, just want to put your mind at rest, message me if you want to chat 🌻x

[Catherine1978 in reply to Dollybow]

Thank you for your reply I was told by the doctor I was on good inhalers I have ventolin , Anoro Ellipta and a nasal steroid spray. My nose is not dry very often it’s constantly running or got congestion the nasal spray does help compared to not taking it. I’ve not seen a doctor face to face for about 14 months after I ended up in hospital for a couple of hours after a flare up. I was told by the paramedic not to leave it that long again before getting help.

[Wrighty2018]

Hi there I don't have COPD I'm asthmatic what I will say is IF you suffer with your sinuses then your dr should consider providing a nasal spray and use neilmed nasal rinse so that you don't get post nasal drip down the back of your throat that can flare up chest conditions

[Catherine1978 in reply to Wrighty2018]

I hi thanks for your reply I have been given a steroid nasal spray which does help compared to not having it. To be used once a day but I do believe my sinuses are what causes my flare up.

[Beth1949]

I know how you feel. I was in my late 30s when I started having shortness of breath and a lot of coughing, day and night. I was first diagnosed with asthma and the next 3 yrs went in weekly for allergy shots.

Then I was diagnosed with COPD and put on meds. Still suffered with coughing, always tired, short of breath, trips to the hospital and numerous bronchoscopies.

It wasn't until about 15 yrs later, that my specialist sent me to the Mayo Clinic (the best of the best doctors) that I had a CT Scan and was diagnosed with Bronchiectasis with asthma.

It took several years to get the right combination of meds (and a nebulizer and a percussion vest), but for the past few years I have felt better than I had in the past.

There is something to be said about stress, I retired 5 yrs ago from a stressful job and we moved to an area of the county with less air pollution. And into a newly built house (no chance of mold).

So short story long: Look at your lifestyle, where you live, check into lung exercises, any thing in your home that is making things worse. AND talk to your doctor, if he/she is not seeming to help, go to another doctor.

Don't lose hope, Beth

[soulsaver]

Hi Catherine, welcome.Best address this logically if we're to help:

You were 'told' you had COPD/Emphysema?

Who by?

What breathing tests did you have?

What symptoms do you have?

Are you very overweight?

Are you a(n ex) smoker?

[Catherine1978 in reply to soulsaver]

Hi Thanks for you reply Yes I was told by my doctor I had to breath into a machine for as long and hard as I could coughing ,nasal congestion get out of breathe. When I have a flare up I feel like I can’t breathe I wheeze I am over weight at the moment wasn’t at the time of been told what I have. I’m an ex smoker stopped smoking 6 months ago .

[corriena]

I think you need to give the BLF help line a ring. One of thear nurses will be able to talk you through and advise you on meds and how to deal with panick attacks and low mood boath of witch are very common amongst us breathy people

[Catherine1978 in reply to corriena]

Hi Thank you for your reply any help would be good nothing worse than feeling like your struggling.

[trys1976]

A lung condition doesn’t just effect your lungs it also has an impact on your mental health .

[Catherine1978 in reply to trys1976]

Hi thank for your reply I’ve always suffered with some kind of mental health I think my medical condition just brings it more to the top.

[Catherine1978]

Thanks for your reply I’ve never had a CT scan just an X-ray plus had a breathing test. I thought I might have some allergies but when I’ve read up about copd people can suffer with there sinuses as well so that’s why I was asking if anybody else suffers X

[tonygeorge]

do u have oximeter.....if worried call 911...someone will call back and if they think needed out of hours doctor will visit