Mike 71

[Mike71]

I am new to the site, this being my first question, I have had COPD for about 20 years & my breathing is really bad, I cannot do anything even slightly strenuous or I am gasping, i find I am forced to lean on something ie (a worktop or anything) I even get breathless standing up unaided I always have to lean on something, I would welcome any constructive advise. Thanks.

[hopetorun]

Dear Mike welcome to the site you will get lots for useful suggestions here.

Firstly though if you are that breathless you need to see your GP urgently. I hope you feel better soon best wishes Irene

[Mike71 in reply to hopetorun]

Thanks for your input Irene, I have seen my GP many times fairly recently but they don't seem to have any answers, thanks anyway, Mike

[hopetorun in reply to Mike71]

Dear Mike next time you go ask to be refereed to a specialist. the thing is things change peoples condition the medicines they use to treat things with so unless your GP is a specialist in lung conditions he may not be up to date with current thinking. any way goodluck

[Louisiana]

It must be sooo difficult for you. I get like this when I have a bad infection, but I am reasonable in between, thankfully. I wish I could offer some advice but I can't - just keep on this site as you might hear of things to help...I have learned a lot from other sufferers on here...and I have had a few good laughs along the way Take care

[Hidden]

Hi Mike nice to meet you and welcome to the site. I presume you are on meds for COPD. It is possible you might need other help such as oxygen now. Please go back and see your doctor and tell them the problems you are having. You might need different meds or up the ones you have but we can't really advise you on here as you need medically qualified opinion. x

[Mike71 in reply to Hidden]

Dear coughalot,thanks for your advise but apparently my blood oxygen levels are ok.I'm allright sitting or lying down , I was offered a rehab course (my third) but any exertion makes me so out of breath . Cheers Mike

[heatherpeewee in reply to Mike71]

hi I am asthma,copd and hypertension(high bp) , I get out of breath just walking from 1 room to the next. I thought it was the copd but I have learnt that hypertension can also make you breathless. You should get bp checked . Just a suggestion .

[Hidden]

I was like that when I had a chest infection, hanging on to the worktop, back of the settee etc - go see your doc or nurse to have a check up please

[Hidden]

Hi Mike and welcome to the site no doubt many will do the same but all I can offer is see your doctor or nurse your meds do not seem to be working and poss you may have to think about going onto O2 therapy best of luck and keep at the doctor until you get some satisfactory results.

[lily26]

Hi mike iam like that if iam not on steroids I have to lean on my walker to get around I even take it to the toilet you need to get back to doc there is difrent things you can try to make your life better good luck x

[casper99]

Hi Mike. Sorry, I have no advice to give you but would like to say welcome to the site.

I can't imagine what your going through but I hope you get the help you need as soon as possible.

Casper x

[kimmy59]

Evening Mike and welcome.

I would go back to your GP and insist on seeing a consultant, your GP saying your oxygen levels are normal means nothing, without further tests how can he know what's going on, sounds like an infection to me. I have 1/2 lt 12 hours over night and 3-4 lt on exertion and it makes all the difference.

Very glad you found us.

Kim

[Hidden]

If this is sudden and unusual level of breathlessness it needs attention ... Could be infection needing antibiotics and steroids or need oxygen assessment and or heart check ...as reduced heart effectiveness can cause breathlessness. If gradual worsening maybe try different medications including inhalers. Be pushy with doc and let know how concerned you are. Ask to see consultant ASAP. Hope you get help you need. X

[thatwelshman]

Hi Mike71, this is just about normal for COPD ppl, I think we all go through this. like you I have been diagnosed with COPD for about 19yrs, cant walk from one room to another without having to have the leaning exercise (that's what I tell my wife it is) I am on 24/7 oxygen too. I tried to carry on with my exercises but found it impossible.So now I say if I am going to do the leaning exercise what does it matter if it helps me in some way. My specialist told me just over 12months ago that there was no more she could do for me, so I take my oxy, take my nebulisers take my tablets, and say thank you god for letting me see another day.Don't worry about leaning Mike most of us with severe COPD do it .take care

[GBSubramanyam]

I'm also new to this site like you ! Well , to my mind ,you must've answers to your problem as you're suffering for about twenty long years. But , however , I suppose , you may be having an infection in your lungs and need immediate consultation with your doctor. Wish you a speedy improvement !!!

[gallmoe]

Hi Mike, You should be under a doctor or seeing Resporary Rehab., Cronic Nurses. I m not sure where you live and if you have access to them, I live in Australia and have wonderful support from Doctors and Nurses in Cronic Rehab., I also have a great consultant. May I also suggest a walker is great to use, and also you can use a walking stick as well where you cannot have access with the walker. Best of luck.

Gallmoe.

[peterbarlow01]

Sorry cant comment as I'm still getting my head around this. As I was told of my copd and that I was a carrier of the alpha 1 gene at roughly the same time in Febuary of this year..so I'm still learning about it and how to live with as well , I wish you luck .

[firework]

Hi mike you don't say if you are on oxygen, because that will make a huge difference to you, I agree you must ask to be refereed to a specialist I wish you luck xx

[winebuff]

Hi Mike. I think a lot of people will recognise your condition, my wife calls my leaning, hanging about. The best advice I can give is '' exercise '' the medical profession has convinced me the the stronger you are the better you are able to manage your condition. I know how hard it is,I am 70 my fev is 19% and I am on oxygen 24/7 . You can do it!

[Hidden]

Good Morning - My husband has had COPD for about 12 years. He gets very breathless but you sound more than usual breathless - if that makes sense.

It might be worth a call to the BLF helpline to ask their advise with regards to what your doctor should be offering you. He doesnt sound very helpful! My husband uses Spriva in the morning (which opens his airways for 24 hours); symbicort - 4 puffs a day and ventolin as an emergency.

We were told by the respiratory nurses that if two of the following increased it was time to take antibiotics and steroids:

more breathless than usual

more coughing

more sputum or change in colour of sputum

Wondering if this applies to you?

We were also told that exacerbations (worsening of symptoms) can happen without there necessarily been an infection. There are lots of medications available so I would advise you go back to the Doctor and explain that you need some help and need to see a consultant. I know this can be difficult when you are not feeling well especially so breathless but you need to get it sorted and I have found over the years that sometimes you have to be proactive!

The best of luck and hoping you feel much better very soon. Take good care, TAD xx

[nannyb]

Hi Mike, Welcome to the site, sorry i cannot offer any other advice than what you have been given. Take care nannyb xxx

[Offcut]

All of the previous post are right, you need to see a lung specialist. I wish you well

[Mummywummy]

Hi Mike welcome. Sorry to hear your problems. I am much the same. I use a rollator or shopping trolley out and this lets me exercise. I have chairs dotted around the garden at strategic point. Everything has to be planned in advance. I have oxygen 24/7 and it has improved slightly. I really think you ought to put pressure on your GP because I thought there was nothing more they could do but then I refused to be written off and now I fight for my health. All the best to you, know just how you feel, bloody awful.

[FarmerD]

Hello Mike,I have severe emphysema,FEV 19%.Like you every few steps I need to lean,on a surface,my stick or even holding my knees.My consultant reckons it,s down to deterioration and we,re running out of options.My sats are not bad enough for oxygen.He has referred me to the Royal Compton for assessment so just waiting for that.I got some elbow protecters,the ones skate boarders use,because my elbows get really sore.Sounds like you need to see your consultant,get yourself checked out! Good luck.D.

[FarmerD in reply to FarmerD]

Sorry that,s the Royal Brompton hospital,London.

[scorpiolass]

Welcome Mike, sorry I can't offer any different advice but I do think you need to be seeing a Consultant ; maybe ask to be referred to Pulmonary Rehabilitation and or a respiratory nurse Team. The latter 2 options will consider your Quality of life, probably more than a strictly medical opinion. Best Wishes, M

[mwalker23]

Hi Mike, welcome. You may have an infection and you need an urgent appointment with your doctor. Ask for a referral to the respiratory clinic but on the meantime you may need antibiotics and steroids. Please get help asap and let us know how you get on.Take care.

[caz1988]

Hi Mike , as everyone says' go to your G.P.and explain your symptoms, I have severe COPD Emphysema but oxygen levels are always good I'm not on oxygen at home but, I'm waiting to hear of a lung transplant , I have four different inhalers and numerous pills to take on a daily basis. You obviously need something other than just rehab. Good Luck x

[rmfields]

I have COPD and I'm on oxygen therapy. I got where I could not walk from one room to the other without grasping for air. When I was hospitalist for a heart attack, the doctors found a blood cancer disorder called polycythemia Vera. One of the symptoms is short of breath. combine that with COPD and Heart problems and things can really get sluggish. I had a blood test that found the polycythemia and a bone marrow test to confirm it. I walk on my treadmill for 30 minutes. I walk around the neighborhood for about 30 minutes twice a day. This is a great improvement for me compared to hanging on to the counter when I was getting a drink of water. You might have your blood checked for this.

[nicolajoan]

I understand how you feel, my name is Ann, i am the same i have Asma i am always looking for some thing new but have not found any thing, i put my bathing costume on to go for a swim but get out of breath doing it so i do not go, I take all my tablets to open up my airwaves, so why are they not working. When i am bad Hospital and steroids, shorley some one can help us all with our breathing, thank you if you can , Ann xx

[PollyP]

Hi Mike, I wonder are you feeling any better? I have read through all the replies to your post up until now and can't see anywhere that anyone has advised you to speak to the BLF? Call the BLF helpline, they are very helpful, wishing you well

[onamission]

Hi Mike and welcome I have COPD diagnosed about 10 years ago at the age of 42 I get so breathless I can't even string a sentence together. I went for my yearly lung function test and the nurse I saw teaches COPD she has changed all my medication and sent me for a x-ray which I had today it might be you need the same I hope your feeling better soon.

[Dmactds]

Two years ago, I had an acute pulmonary collapse and since then I've been recovering; COPD is not a simple thing as we all know and it affects us all differently.

It's only been in the last six months that I've begun to feel anywhere near 'normal' but that's a fantasy as that feeling lasts only as long as I don't do anything too strenuous; if I do, then I'm pretty much in your situation and leaning on something..., but still, it's not as bad as it's been.

I find pursed lip breathing and my oxygen therapy along with Spiriva and Symbicort inhalers are helping. My doggedness in forcing myself not to give in to feelings of helplessness is also a great help. As long as I can breathe and move, I can improve and that I've done but it takes effort and bullheadedness.

Finding this group has also given me something to identify with and other folks to occasionally bounce ideas off of...; I, too, am 71 and will be 72 before the year's out. I live in Georgia, USA where, this time of year, the heat and humidity are doing their best to be difficult. I persevere.

As I've said quite often in the forum, "KEEP ON TRUCKIN' "!!!

[deenyweeny in reply to Dmactds]

I live in Roswell, Ga., USA, so can relate to how the humidity can affect you. I never smoked, and didn't get the disease, bronchiectasis, until my 70's and am coping by using a nebulizer. So far, it's working well for me, but it's a nuisance to take the time to use it twice a day; and, as you said, you have to be bull-headed to keep working on it.

[jimmyw123]

like most mike i can identify with you very strongly,,,,but as far as advice... i would say,, be more assertive and demand things, demand to see a specialist, if your g,p is doing nowt,, change him or her, i was always a nicey, nicey chappy, as far as the medics were concerned but learning you have to" push" for things you need. have you had steroids of late?,,,

anyway its the experts you must see,, and not in 2 months ,,,, now,]

im so sorry your like that now, im a wee bitty like that myself at the mo, but ill take big action if no better in a few days,,,, best regards jimmy