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Copd

Sandranna1959 profile image
22 Replies

Hello everyone I joined this site about a month ago, I have my condition 13 years now and I dont see any one taking the same amount of meds I take on here. I have spiriva, symbacort 400/12, ventolin inhaler and nebules for nebuliser, montekulast tabs and slo-phyllian capsules. I have no idea what stage im at but my doc said I was mild yet copd nurse said severe. I try to keep myself as active as I can at all times but do suffer depression and arthritis in various parts of my body. Three weeks ago I was with my doctor and when I tokd him I was depressed he said, " what had I to be depressed about when people are losing limbs and dying of cancer?" I left in tears now I dont want to go back to him. I was 56 just a few weeks ago. I don't smoke and have just had a holiday with a friend who does and now I have a chest infection so need antiotics and more than likely prednisolone as well but im afraid to see the doc now. I never was one for going only when I really had to. Is anyobe else on all these meds and have they an inconsiderate doctor as I have.

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Sandranna1959
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22 Replies
hazelmitch profile image
hazelmitch

Hi I take all the medication you are taking so I know how you are feeling plus carbosistene furosemide (swollen ankles) maintenance steroids, 24hr oxygen. I feel like I am rattling sometimes but I think if it is helping then I have to take them, I am very severe and my specialists are going to talk to me about lung transplant at my next appointment, I am 58 and was diagnosed in 2012. I miss being me my lifestyle has had to change I can not go out to often, it is an awful disease, but you have to try and be positive as it is also hard for your loved ones as they feel helpless so I try and put a smile on my face and try and focus onto something else take care I know how your feeling.

Sandranna1959 profile image
Sandranna1959 in reply to hazelmitch

Yes I do miss my life style very much. My mum has this same disease and it has run in our family. She is on oxoygen and in a wheelchair. To be honest I don't think the people who know me really appreciate just how horrible this illness is. Ive always put a brave face on it all. I moved house 6 months ago and put swollen ankles down to standing for long period's but ut can happen any time now and my feet get sore. I do get very tired very easy and I live on my own.

hazelmitch profile image
hazelmitch in reply to Sandranna1959

I know it is a terrible disease I don't think people are aware what its like, I feel im going downhill quite rapid ive only 26% lung function or should I say I had when I had all the tests done a few months ago, so I have little breath for anything as everything tires me out, I have moved into sheltered housing within Belong Village which is fab I have carers I live on my own but never feel alone the village has 54 apartments and then a nursing home too very mod, hairdressers café venue room beauty therapist, they put things on night and day bingo cards singers trips out I attend if I am able but its made a difference to my life. take care Sandranna you are not on your own if you are on this site keep in touch if you want to bye for now x

SquirrelsHolt profile image
SquirrelsHolt in reply to hazelmitch

Hazel mist u sent a great reply to Sandara with positive thoughts for her. I'm very much on the same level as u as far ad COPD,our ages, needing oxygen most of the time which limits us to some extent. I've over the last year found it real hard to stay positive and can find myself spiraling into depression. Having good doctors etc is vital for us and mine struggle to provide the basics.

velvet55 profile image
velvet55

Hi Sandranna

What an ignorant GP you have.....

I would go back...plonk your bum on the chair in his surgery and don't leave until you are happy about your treatment.

When he asks you what is wrong...tell him you don't have cancer, and you don't have a limb missing...but you are depressed and need help, not inconsiderate remarks.....Just do it !!!

My GP is my Arch Enemy, so l try and get an appointment with one of the other doctors at the surgery....after saying that, it's not through fear of him, but fear of what l would say if he upset me !!

I also take all the meds you are on, and many more for other things...my stomach has more Drugs in it than Boots Pharmacy !!

Good luck

Velvet xx

hazelmitch profile image
hazelmitch in reply to velvet55

I really don't think GPs have any idea about COPD well mine don't I have changed doctors because of it and the new doctors is still the same they just tell me to ring 999 if im not well and that's the last thing I want to do is end up in hospital, I try to look after myself if ican and start my emergency anitbiotics when I feel I need to and up my steroids from 4 to 8 a day and use my nebuliser every 2hrs which is what they do when I go in hospital, I am 40mg citalopram which does help with the depression, I wish people could spend 24hrs in our shoes drs included to feel what its like not being able to breath it is horrendous and very frightening, so I wish everyone on here who as lung problems whatever they may be lots of love prayers and hugs x

starveycat profile image
starveycat

Good morning Sandranna 1959. I do not have copd I'm asthmatic so no help at all on the meds. Your doc was very insesative to say what he did. Depression is one of the evils that come with long term incurable illnesses, you just have to look after you and be very kind to yourself, you will find many people on the site are fighting depression . sending you gentle supporting hugs ♥♥♥

Ergendl profile image
Ergendl

Hi, Sandranna, what an awful GP. I'm not on as many drugs and have moderate COPD plus osteoarthritis. I've learnt which doctors to go to at my surgery. The one I usually see because no-one else wants to see him, minimises everything and tries to keep treatments in house as the senior partner. But there is also a very nice young doctor who doesn't know everything about everything, who I see when I think I won't get something past the other one!

Depression is also a serious condition which should be treated properly. Clinical depression doesn't respond to "pull your socks up" approaches and needs meds and/or psychological treatments like cognitive behavioural therapy etc to improve.

Do find a more sympathetic doctor if you can - don't give up going to see all doctors just because of the one.

Hi what a terrible response from your doctor - he was bang out of order saying that to you. He of all people should know that depression is very common in those with chronic health conditions. There are quite a few on here who suffer from depression/anxiety.

I presume your surgery is a group practise so you can see anyone you want so don't see this awful doctor again. If he is your only choice change surgeries. You need to get some ab's asap so please go and get them regardless. Then ask if you can have an emergency supply to keep at home in future. Lots of us have them in case we can't immediately get to the doctor at evenings/weekends etc. x

sassy59 profile image
sassy59

Hi Sandranna, Pete takes lots of meds as he has sarcoidosis and copd so you are not alone there. Your doctor is very silly to be saying such thoughtless throwaway remarks to you and needs to maybe walk in your shoes for a day or two. Go back to him, or another doctor, head held high and ask for help with your chest infection. It is your right and try and get some help for your depression too if you feel it will help. Good luck to you and be strong. Do let us know how things go for you.

Take care xxxxx

ladytelita profile image
ladytelita

Hi there, I'm not often posting on here but read the daily digest and saw your post. I'm on a fair number of the same meds as you although no one has said I have copd. I do have Bronchiectasis and asthma so suspect there is the crossover. The montelukast is a fairly recent addition to mine and the surgery have, without informing me, decided to use an alternative to my Symbicort! To save money apparently. I have not yet ordered the different type and dread to find it is not sufficient for my lungs.

I too dread having to make the call because my chest is undoubtedly suffering yet another infection when it had one only last month. Antibiotics I don't mind but the steroids make my heart race and I feel awful. They used to help but they seem to have stopped working.

I have only one GP at my surgery that I find to my liking. But as I use a small country branch, have only the option of her rarely. The doctor (only one a day) works from 9-11.30 each week day so appointments are few. And since I am still waiting on my new motability car I cannot get to the surgery at all!

I do hope things improve for you in all regards. Depression is not something to be treated lightly. Mine was, much like yours, ignored for a very long time. It was only recently that they finally referred me for an assessment. I scored high on both anxiety and depression. I'm now waiting for counselling.

It is important that your GP takes it seriously for your sake and if they do not, you can report them for it. They are there to help us and we pay for that service.

I can only wish you well and the best of luck in finding the best GP for you.

P.

2malinka profile image
2malinka

Hi Sandranna

I am on oxygen, Spiriva, symibcourt and ventolin. I was also given a nebulizer but stopped using it and the ventolin as it made my pulse race and feet swell. I didn't seem to benefit from either. By the way, on my last lung function test in March, my FEV was only 14%. Hhopeowever, I live alone and manage ok. I do have someone who comes for 1 hour a week to the do change bedding and clean floors. I have a Blue Badge which is great for parking. I do find It difficult to walk a lot. I mostly shop on line but when I go out I rent a mobility scooter from the

joyce74 profile image
joyce74

Seems your doctor was having a bad day, please don't let it get you down. I had a bad time through a doctor misunderstanding way I was there. It was over a year till I saw him again and he sheepishly told me I could go and see him any time. Change surgery's if you feel the need. Wishing you well Joyce

Jaysha profile image
Jaysha

What an insensitive thing to say. Go to another doctor. I up my inhalers if i am poorly. I always have ab's and steroids at home just in case. If your breathing gets worse get a doctor out. Take care and please get help if your breathing gets worse.

hullrlfc profile image
hullrlfc

Hi sandranna I have copd and asthma I amn on uniphylin tablets steriod tablets7.5mlg a day nebules for nebuliser montelukast tablets . Lansaprozole capsules.analdronic acid tablets and anti depressants .you do get down .my doctor wanted to take me off my anti depressants said I shouldant need them .when I explaind how I felt how I had always been active and now am restricted to what I do he relented and said he will review it at a later date .we just have to take what we do .take carehope youkeep well .dave

hallentine47 profile image
hallentine47

I was diagnosed 14 years ago now with severe COPD and mild Emphysema and take the following, Salbutamol,Doxycycline as & when needed, Carbcisteine, Ramipril, Predisolone, Tiotropium Inhaler,Lansoprazole, Simvastatin, Amlodopine, Symbicort, Alendronic Acid, D3 TheiCal, Riveroxaban, Azithromycine, Exetmibe and Lorazepam and I have juts been given a Nebulizer.

There are a few minor items such as creams and gels but this is the main menu.

Don't worry about what or how many. I take anything the Doc recommends and follow the comments on this site.

Mooskie profile image
Mooskie

Ai would fire that Doctor!!!

Sandranna1959 profile image
Sandranna1959

Thank you everyone for all the kind replies. As I said this condition does run in my family my aunt died of it just at the age of 57 ten years ago and my grandfather over 40 years ago. My mum is 74 and has had it for years as well as heart problems. I have prided myself for pushing myself all these years because I was in better condition at my age than all of them. I had to stop work just 4 years ago because I found it was taking me much longer to do a job I'd done for 6 years. I do not leave the house much and my family are all grown up and live away from home. This is the worst time of year for me as I'm certain it is for all of us. I live in a seaside town with the sea all around me so getting out is not easy. I have arthritis in my neck, hands, hips knees and suspect my elbows now too, I also suffer severe migraines as well as the depression so a lot of medication is needed. I'm still fighting to get DLA ( it's not PIP here in Northern Ireland yet, ) That money would come in so handy for taxes to get me out and about but thanks to other advice regarding that I'm going to keep fighting. I raised a family of 5 on my own and worked my butt off all my life never even had sickness benefit, any wonder I feel so bad. You're advice has been very helpful, thank you all once again.

Catnip profile image
Catnip

Good morning Sandra

Well, I can't say that your GP has much of a "bedside manner", especially given that most COPD patients suffer from depression. The first thing to do is see another doctor, explain your situation and see if you can get a prescription for anti-depressants. That was the turning point for me.

I take a bucket load of meds including inhalers and pills (which multiply exponentially when I have an exacerbation!), so you aren't on your own with that. You _do_ need to avoid your smoking friend, though...

Do you see a consultant? It does sound as though you need to have a proper diagnosis from a chest specialist who will give you appropriate advice and meds.

Sandranna1959 profile image
Sandranna1959 in reply to Catnip

I did see a chest specialist about 5 years ago and he was the one who prescribed the slo-phyllo an 250mg. The symbacort 200/6 I'd been on before that. The symbacort has been changed to the higher dosage 400/11 and the motekulast was given at the same time. This was in July after a six week course of steroids. I was still very breathless after that lot and I was certain my go said he was referring me back to the specialists but when no appointment arrived I asked him 3 weeks ago if he'd suggested it and he said no. That was after the 6 weeks on prednisolone and my breathing was still bad. There are a lot of people say he should not be in the surgery he's an ex army doctor. He has taken me off co-codamol 30/500 for my arthritis pain which I've been taking for years and given me Tramadol. I'm of the impression he wants to just drug me up and shut me up. I won't be seeing him again. I do attend my COPD clinic whenever they send for me. My Sats are reading fine and the specialist done all the tests including the oxygen tank yet I still have no more knowledge now than I did 13 years ago. Yet every few years I've known I was getting worse and that's when I saw my GP. I'm also very hard of hearing and listen very hard to everything he has said to me. My smoking friend I don't see too often thankfully, as you all know a little consideration goes a long way.

tomhatha profile image
tomhatha

this might make you feel a little better for thr future.KEEP SMILING

gizmag.com/respite-nebulize...

go to this site

Dedalus profile image
Dedalus

Do change your GP - yours is just an ignorant so and so, and you deserve a lot better. Good luck x

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