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Help please lost and confused over asthma and copd.

loveletter profile image
18 Replies

Hi.

I am a 51 year old lady and have smoked about 11 cigarettes for almost 40 years.

2 years ago I become quite ill out of the blue.

Every day and night since then is almost the same. Being breathless, not breathing well and coughing so much mucus up all the time with a cough that has been with me every day and night a cough that people tell me they have never heard anything like it with someone coughing all the time so bad.

Doctors not been too good.

Was put on a blue inhaler and serevent and clenil modulite 200.

Had a chest xray last year all clear.

As time has gone on I have struggled more and the last few months has been dreadful for me calling a ambulance out 3 times, twice I was put on a nebuliser and once on oxygen.

The last couple of months become very breathless hardly able to get up my stairs anymore.

A average day is wake about 3.30am have to cough up mucus for about a hour and struggling to breath. Oxygen levels for that hour between 90 to 92.

Wake again about 6.30am with another hour coughing to get mucus up with oxygen levels again between 90 to 92.

Peck flow if I can blow into it at this time of morning is usually 150.

Throughout the day I am always having to cough mucus up with peck flow 300 after ventolin but after about a hour dropping down to 250 again.

The last 4 months have been taking between 24 to 26 puffs of ventolin a day.

A new gp has joined the surgery and he at least has took me seriously.

2 months ago went for a chest xray all clear again.

Last years spirometry June 2013 was as follows

fev 1.7l-1.70 normal

fvc 2.35l-2.35 normal.

fev1/fvcpercent 72.3%-72.30 normal

I was told by the asthma nurse that done this test there was nothing wrong with me and sent home to get on with it although I knew there was something wrong with me.

4 weeks ago had reverse spirometry and told they where very low results.

Doctor then put me on symbicort 200/6 and took me off the serevent and clenil modulite.

Went back last week for a spirometry and results as follows

best spirometry result

fev1 base 1.16 %54 min 1.49 pred 2.11 max 2.73

fvc base 1.96 % 78 min 1.78 pred 2.49 max 3.24

pef base 203 %59 min 252 pred 340 max 429

fev1/fvc base 59.2 %73 min 69.5 pred 80.2 max 90.9

Interpretations ats moderate obstruction

lung age 85.

I have asked is this copd been told I have a bit of asthma and a bit of copd.

To me I have more then a bit of copd but I am not a doctor.

The last 2 weeks doctor has given me saline 6% to use through nebuliser to help me with the none stop coughing up of mucus.

It seems to me at least every 2 hours have to take a puff on a inhaler or really really struggle.

I am so lost and have no idea what is happening to me but I do know my life is not the same any more.

I am so tired so lost and struggle to do even simple things around the house now.

Could some one please help me with what is going on with me

Thank you

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loveletter
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18 Replies

Hi Loveletter I am afraid I don't really understand the readings but I think you are saying your lung function is 54%. If that is the case you are in the moderate COPD range. I am 66% and take spiriva once a day, symbicort (200) 4 puffs a day as well as the ventolin. Symbicort opens your airways so you should be on that as well. If not ask for it please. Also a chest x-ray doesn't always show problems so ask for a CAT scan as well. Needless to say you need to pack the fags in if you haven't already. Others will be in soon to help further. x

loveletter profile image
loveletter

Thank you cough a lot for replying so quickly.

I think I have moderate copd but wondered if asthma could make the lung function so low.

I have brought the System 4 stop smoking and have gone from 11 a day down to 2.4 a day so am very close to giving up all together.

Eve3066 profile image
Eve3066

It sounds like you really need a drug overhaul. You do not seem to be taking what everyone else is talking about but your symptoms seem worse. Get some advice either from this site or demand more answers from your gp

huggs profile image
huggs

Hi Loveletter,

I too have copd and asthma. I have no idea yet what stage my copd is at. I am hoping mild but fear it may be moderate. The big thing that made a huge difference to me, ( and I realise everyone is different, and what works for one may not work for the other) is that I got Spiriva inhaler and I was already on seretide and ventolin, and I also got mucodyne which loosens and thins down the mucous which makes it easier to cough up. The mucodyne took a while to take effect but it works a treat now. I agree with eve that it sounds like you need a review of your medication. I don't know about all the numbers of your test results, but get someone like a GP or a respiratory nurse to

explain them to you. You could also click on the red balloon and talk to one of the nurses at BLF. Good luck and take care. Hope you get this sorted out quickly because it just gets worse. I should know. hugs xxx ps I agree with the others that you need a respiratory consultant and a ct scan as it can show up a lot more than an x-ray.

helingmic profile image
helingmic

loveletter, I agree that another look at what sort of drug you take would be beneficial. When you say my doctor, do you mean, GP or consultant. If you haven't a consultant, have yourself referred to one..

One thing that you probably could use is learning ACBT Active Cycle of Breathing Technique. Use this before going to bed and when you gt up - stagnation build up during the night.

here's a YouTube video: youtube.com/watch?v=7hw0BUn...

Here's an explanation of it all: srft.nhs.uk/EasysiteWeb/get...

If at first, it's not such a terrible help, put more cushion, so you sleep with your head higher. This should prevent the mucus from coming up while you sleep (I sleep with a frame which was given when I went to hospital, as they sat me up in their hospital bed. I said I had no hospital bed at home; so they provided this.)

Hope this helps. I hope you can push to get a referral to a consultant and to a Pulmonary Team Nurse who understand completely what you mean, as GPs are not trained in that sort of ting!

loveletter profile image
loveletter

By doctor I mean gp. I have never been sent to a consultant

I have rung the helpline on here this morning and talked with a very nice nurse.

She told me to get in touch with my gp and demand to be sent to a respiratory.

She said it is not right I have coughed day and night for 2 years and never been sent to a hospital.

She also told me to ask my gp for a flutter device

Hi Huggs gp said he wanted me on saline and not the .. mucodyne. I have also taught myself the huff cough.

Hi helingmic I have not been able to sleep laying down for 2 years now.

I have brought a wedge to raise the bed that I put under the mattress also have brought a full body pillow. I find I can only sleep on my right side if try to sleep on the left side have very big breathing problems. I sleep half sitting up and now really dislike going to bed as so uncomfortable. Can only sleep a couple of hours at a time with out having breathing problems and having to take blue inhealer and clear mucus off chest. Since being on saline for a couple of weeks have noticed mucus seems to be higher up now off the chest and that bit easer to get up but there always seems to be so much of it.

katieoxo60 profile image
katieoxo60

Hello Loveletter, sorry you feel so ill sounds like you need your health and treatment reviewed. X-rays don't always detect all chest & lung illnesses and some of the medics are not always conversant with the respiratory problems caused by asthma & COPD you do need a specialist opinion and possibly a scan ect and definitely review of drugs to get the ones that suit you best this can take some time to sort out. It is often a case of trial and error for many months but persistence should pay off eventually. Best wishes and good luck.

Can I just add that you are entitled to choose where to go to see a specialist. Try to choose one of the best.

loveletter profile image
loveletter

Thank you every one for all your reply s I do not feel quite so lost and alone now.

If you can choose your specialist then I will ask to go to Papworth as I live just down the road from that hospital.

I have my gp phoning me on Wednesday so will be asking him all about this then,

..

Toormore profile image
Toormore

hi i also duffer copd and asthma for over 20 years i used to cough all time, even trying to walk was hard. i have had a few ambulance rides i can tell you even been intensive care on lung machine to breath for me.

i am on spyriva symdcort inhalers. and have a nebuliser also on 20 mg of steroids a day oxygen when needed, and a syringe driver with brcynial and sodium chloride in it over night, now i get xolair injections 1 a month. the injection has changed my life not a lot but keeps me out of hospital coughing not so bad any more still sleep with 4 pillow,

but not waking up as often in night also chest speaclist put me on chom pix tablets to stop smoking and they work wonders i stopped smoking i recommend them to all who smoke and want to give up i smoked for 40 years between 10 - 40 a day now none at all not even craving for them. the steroids caused me to have brittle bone and thin skin, my skin rips even if i scratch it. also my bones break so easily even a cough have broke ribs. i have had 18 breaks doing every day things now my back has spinal stenosis and am suffering real bad with that. go see doc again and tell him about the items i have mentioned to you. i wish you all the best take care. sorry i rabbet on a bit

thomlin profile image
thomlin

Hi loveletter,you sound as if you have copd stage 3 op 4 and I would change your doctor if he or she cant see that .

loveletter profile image
loveletter

Hi thomil coculd I be on stage 3 or 4 with 54% lung function as you got me worried now

coastal1 profile image
coastal1 in reply to loveletter

54% is stage 2 ...moderate .

loveletter profile image
loveletter

Yes that is what I thought and also what doctor said Coastal

thomlin profile image
thomlin

So sorry loveletter I never intended to get you worried ,I have or had stage 3 but have through not smoking ,diet and exersize won back 20% lung capacity ,Every person feels different no matter what stage they are in I think .Just keep taking the meds exersize,dont smoke and you will get results ,once again I am sorry for worrying you .Thomlin

loveletter profile image
loveletter

No worrys Thomlin. So happy to hear you won back 20% lung capacity. I did not know this was possible.It has been a long 9 weeks of giving up smoking but as from yesterday am down to 1. 6 fags a day. After 14days of that will go down to 0.8 a day for a few days then sip totally. I have given up with the system4.co.uk/ it really has worked for me. To be honest am feeling a bit worse with cutting down but doctors have said it is normal to feel worse for a while. To day have dreadful withdrawal. I do not crave to smoke it is the feeling ill thats getting me. Really snappy with everyone so tired I could sleep for weeks. Bit of pain in my lungs and a feeling of ants crawling in my lungs. But have to stay with this.

thomlin profile image
thomlin in reply to loveletter

loveletter I read a book ,sounds crazy but it stopped me smoking 18 months ago and from the last page ,until now I have never had a craving for a fag ,it,s called (Stop smoking the easy way ) by Allen Carr ,it tells you to smoke while you read the book and sort of brainwashes you in a positive way to quit .It really works ,try and get a book or ,it is also on DVD.There are also pills that the Doctor can recomend you get to stop ,they are supposed to be very good ,ask your Doctor for all help thats what he,s there for . Good luck .Thomlin

loveletter profile image
loveletter

Hi Thomlin I am getting on really well with the stop smoking with the system4.co.uk/ it may now work for every one but its really working for me. I am on day 3 of being on 1.6 fags a day so almost there now.Glad to hear you have managed to stop.

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