Does anyone else have COPD as bad as me ? If I walk to my bathroom I am SOB , I can no longer bend down to tie laces etc. Drying myself after a shower almost kills me ! I rarely manage to get outside and when I do I can only manage 10 yards before stopping to lean on something or to sit down . Sometimes on a bad day I am short of breath just eating or talking . I have had 13 admissions to RD&E Hospital in Exeter since being diagnosed in May this year ! 11 in the Respiratory Ward (Culm West) and two admissions in the cardiac ward (Avon) my admissions have ranged from 6 days to 21 days the average stay for me is 10 days , its getting ridiculous , the longest Ive managed to stay at home is 3 weeks and 2 days , I virtually spent the whole summer in hospital apart from the odd 5 days or so I managed to stay home for, Does anyone else go through this ??
Thanks for listening Andy
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andyglass
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Hi Andy have you been to pulimonary rehab ? it really helped me i use to get really breathless and wouldn,t have believed how exercising helps . Also i use to have a sneaky couple of puffs on a ciarette but hava,nt done that in about 8 mnths and its made a big difference, have you to ld your doctor ? i kept having my meds changed untile it improved. hope you feel better soon xx
No Ive never been to pulimonary rehab , as for my meds they have been changed and tweaked continually since May 2012.
My symptoms are like yours but I have managed to avoid hospitalisation. Bock is right in saying pulmonary rehab helps, as do the right meds, which can take time to be just right. I hope you feel a little better soon.
I have no choice , when the paramedics come I`m usually collapsed in a heap and gasping for breath , last time they came my SATS were 81% and my ankles and shins were very swollen and jelly-like. , I`m a hospital case everytime they come
I was like you i really thought that is how life was gonna be after i was diognosed i was ill from last november until june this year ,my meds were increased and i was given a long term antibiotics ,i take one a day .I hava,nt had one in 5 months and feel the best i have in a year,talk to your doctor x
Hi Andy i did use to get that breathless ,getting ready for work was a nightmare . i use to get so breathless doing housework etc that i let my daughter do most of it she even took over doing the cooking .After a while i felt totally useless and did,nt want to live like that anymore .I was told that getting out of breath would,nt hurt me and that if i avoided doing things i would get more and more breathless. i started taking back control doing a little more everyday and it really paid off im back to doing most things only slower..Some days i just relax and do nothing . I think the fear of living like that pushed me; it does get easier i just hope i stay like this x Sharon
If you get the chance to go to pulmonary rehab then take it. Many of us are in a similar condition, unable to walk far or do much, until we learn that exercise is not to be avoided because it makes us able to do so much more. You also learn how to manage your condition better. Try having a chat with your respiratory nurse or consultant and see what they think.
All these fans of PR! And I am one of them too, it's a bit of a hobbyhorse with me. If you can't be referred talk to your asthma nurse about what goes on in PR. Sounds as it it would be pretty hard for you to 'push' yourself, but in PR that's what you do! The simple arm and leg exercises might even help you. In this boat we NEED to build us the core strength in order to fight this debilitating disease. Good luck.
I'm a big fan of exercise too. I haven't done PR as my GP doesn't think I need it as I go to the gym several times a week and luckily, I don't get panicky.
Since increasing exercise, I feel so much better. I do half an hour on the treadmill, 10 minutes on the bike and 10 minutes on the rowing machine. I couldn't do a fraction of that when I started.
You don't say whether you still smoke. If you do, that is going to have a big impact too.
Lynne xx
Hi Andy, I am the wife of a COPD/Bronchiectasis sufferer. He has been in hospital quite a few times since June, High dependency unit, cardiac assessment unit etc. He nearly died one day whilst he was there. He is on oxygen, nebulisers,all the medication under the sun. He can't walk to the toilet without being SOB, oxygen only helps prevent the vital organs from becoming distressed and does make the recovery time better, but does not stop the breathlessness on exertion. I have bought him a massive long towelling dressing gown with a hood for when he gets out of the shower to save him messing about with a towel and bought hand grabs and a bathroom seat so he can get straight out and sit down and let the dressing gown do the drying for him. I get everything ready for him on a pile so he has not to go searching for things. He then puts his oxygen back on and sits down until his oxygen sats and breathing are back to normal then he starts getting dressed. It is all about taking his time and making sure he does not leave things until the last minute.
You do not say whether you are on oxygen or not, but when my husband started being really ill in January this year our doctors were absolutely hopeless. All they did was increase or change his inhalers, we asked for a referral to the lung specialist and after 12 weeks we had not heard anything and then found out they had forgot to do it so another 12 weeks went by so for six months he was struggling with chest infections. I had not been out since January 2012 as I could not leave him as when his breathing got bad he was also on his hands and knees and I had to call an ambulance, he had pneumonia and they put him on oxygen and antibiotics and he rapidly improved. They sent him home saying he does not need oxygen and within three weeks he was back in again with pneumonia, and again and again.
The biggest problem I have now got with him is that because he has everything in the house to help him, there is no excuse for him not to try and exercise but he won't, he says he can't. He has been told by the Pulmonary Rehab team that breathlessness won't do him any harm it is just a bit frightening and as long as his organs are protected with the oxygen he can start building up his exercise routing as his muscles are wasting away due to lack of use and that is making him worse.
You also do not say what kind of help you are getting, we found out things changed when I discovered the Community Matron who works for the GP, they didn't tell us, I went online just looking for things in general. I rang the GP and asked for he to contact us and we have never looked back, we have wheelchairs, walking sticks, urinals, emergency antibiotics on standby etc. she contacted the physio who arranged oxygen for when he is walking about.
If you do not have any help then get some and do what I did pester them until they are sick of the sound of your voice. I cannot believe the hospitals, my husband, when he was in hospital all those times, was never, ever told about the Matron and she is the god-send for all the people that are almost virtually housebound and have chronic illnesses.
We went to see the specialist the other day as my husband was getting chest infections every two weeks, the GP would only give him one weeks supply of antibiotics and we told them that one week was not enough, he can tell that he is not quite well enough when he stops taking them so in three days time he is back to being ill and on antibiotics again,
The specialist said that it was ridiculous, he needs two weeks at least to kick the infection into touch and he would write to the GP's. Well you know how long that takes, it would have been well over Christmas and into the new year before they got the letter. I asked the specialist to give me a note to take with us and he did, he signed it with all the instructions and I gave it to the matron who organised the increase in tablets,, and we are now okay until the middle of the new year.
Do you have anyone to help you, my husband could have never done all this on his own, I was the one on the 'phone all the time pestering for things, if you haven't then speak to a friend and see if they can help you out. Your main stop is the Community Matron at your GP's or local clinic, once you get her you can sit back as she will sort things out for you.
Good luck and I hope you really have a lovely Christmas because if you do what I suggest then 2013 will certainly pick up for you.
Best wishesxxxx
se in tablets and is is now covered until the middle of the new year.
Hi Andy, I can empathise with your situation as I suffered in the same way until my medication was adjusted to stabilise me. I was constantly in and out of hospital to the extent that I was virtually getting the same bed each time I was admitted. I am now controlled, so the same will happen for you, it may take a while for the medication to be correctly sorted out but you will get there. Try and stay positive even though that is very difficult when you are going through everything at the moment. You could ask for an ambulatory oxygen test to see if portable oxygen may help. Best wishes, and take care, Richard.
I am the same as you Andy but for a lot longer, 3 years. I was on Rehab after I had a second stent in my heart, between the two I developed COPD, I was thown off Rehab because my heart rate excelerated, I came out of hospital 3 weeks ago following a femoral stent, I had spent 4 days in HD after which I could not breath if I got out of bed, what was supposed to be an out patients op kept me in for 7,they tried everything to help my breathing, Nebulizer (the most effective) Oxygen which made no difference. Only my inhalers helped. I have improved but I have to go down 7 steps to get to my scooter either to ride it or to plug in the charger, I have to sit on it 2 or 3 minutes to get my breath back before I can use it. (I use my salbutamol before I start) coming back in it is not a case of SOB, I can't breath, it is painful and distressing. I can only say, take whatever tests they ask you to, and don't expect what works for others will work for you. I think COPD is a generic term that covers a multitude of lung conditions. I try to keep moving all day in short stints, not enough to make me run for the spray.
Oh I`m sorry , you sound as bad as me , I had a breathless attack an hour ago , just from leaning from my chair to pick the TV remote up off the floor next to me
(and the usual medication ,inhalers etc.) for some years and lots of hospital examinations last year to find reason for stomach pains and cramps on walking some 10yds or so, I was only hospitalised with acute loss of breath last January. 20 days later I left ,COPD ,ambulatory Oxygen, Physio support emergency steroids plus antibiotics.
My surgery has provided constant support. .the county also sent a dedicated nurse to see me,(though for me that was overkill). and on last vist to the consultant re stomach, we had both come the conclusion that the stomach pains were caused by the lack of oxygen.
I am now 81 years and always question and get the professionals to write down their conclusions . I insist on copies of letters to your Dr ( often the hospital communications go missing!).
My Physio had given me some indoor standing exercises for when I feel good and sitting for when feeling bad. I pushed for these as I had to abort the PR half way through .
I feel that I have been so fortunate compared to some who write on here ,but the information is available and I have never taken "don't know "for an answer.
It sounds as if I'm aggressive but as I mostly leave my Dr. ,consultants and physios laughing ,and we've all had a good giggle along the way so guess that helps
Do hope you all have better help, as it is out there and I hate to think of anyone missing out
Hope you all have a stress free and happy Christer and New Year
Sats of 81% is bad if you have them for any length of time. So you should ask for an O2 assessment. I was like you and in and out of hospital or infections striking all too often. Then I started to get very ill, and that was because of very low sats that were taking far too long to rise. I was put on ambulatory oxygen. And started to feel better within days. Also I find that I don't tend to get the infections I used to. Yes oxygen does not stop you getting breathless, but it helps a lot as now my vital organs are protected. And even if I do something without oxygen and notice my sats have dropped too far I get them up quick by putting the oxygen on. Like you I get breathless bathing and dressing, and cannot tie my own shoe laces, or even cut my own toe nails. I use the oxygen when I am dressing and bathing, and that really helps a lot. I find I have to really pace myself. Like is in the slow lane. But have found by using the slow lane I lead a much better life in that I do not get so breathless. All the best and hope better days are ahead.
HI PAUL. YES MATE BEEN THERE TWO YEARS OF CRAP LOL, WAS TOLD ALL OVER FOR ME, 8 TO 12 WEEKS TO LIVE THEN MY SURGEON SAID LETS PUT SOME ONE WAY VALVES INTO YOUR LEFT LUNG AS I HAD CANCELLED MY HEALTH FUND CAUSE I DIDNT FIGURE I WOULD NEED IF DEAD LMAO I HAD TO SELF FUND ONLY THE THIRD PERSON IN QUEENSLAND AUSTRALIA OUT OF 78 OPPS TO DO SO AND NOW I AM FIGHTING FIT AND UNLESS HIT BY A TRUCK SHOULD GET ANOTHER 20 YEARS AM ONLY 66 SO THATS PRETTY KOOL AM HAVING THE RIGHT LUNG DONE IN MAY,, GOOD LUCK BUDDY AND JUST REMEMBER THERE IS ALWAYS SOMETHING JUST AROUND THE CORNER THAT MAKES YOU SMILE. HAVE A GREAT CHRISTMAS AND AN EVEN BETTER NEW YEAR, REGARDS ROBIN
get to the doctors if you can.and ask about pulmery re.ab.i was in bed couldnt do anything.untill changed my doctor and he sent me to differant places and i go to rehab twice a week and do exercises at home.and now after 4 months i can do loads more and am loads and loads better so try and get to rehab and exercise..all the best.x
Sweething, I just saw that your husband showers without his oxygen?
My ambulatory instructions cover all washing bathing, showering etc. I leave the cylinder outside the cubicle and run the canular over the drain, with a flannel on top(this avoids water dripping outside towards floor)
Also my feet get a good soaking as the water collects. I also bought a travel micro towel which is highly absorbent so dries feet and hard to reach bits rapidly . That was on a gadgets for men site , I think
I dont chose to go to hospital , usually my doctor calls an ambulance when he comes to see me (as I cant walk 500 yards to the surgery) as for playing safe - last time my SATS were 81 , heart rate 142 , blood pressure 79/39 , i was straight on to oxygen and IV fluids , I dont play safe , I have to be hospitalised as I have a weak right chamber in my heart , a weak muscle on the other side of my heart and I`m AF. I`m also awaiting an Ablation at Brompton Hospital in London , early in the new year , I assure you that Having Heart problems with Advanced COPD isnt fun , so I cant `play safe , My consultant says I`m the worst case he`s seen in an under 50 yr old ! But you are correct in that I was diagnosed late
Reading Andy`s message made me realise how lucky I am although I`ve had severe emphysema and asthma for nearly ten years now. I used to be in hospital with pneumonia two or three times a year. Last year my consultant put me on a long term antibiotic- Clarithromycin daily and I haven`t been in hospital since March. I really feel it`s made a difference. Does anyone else find that it`s helped ? Sheila
hi andy i was excactly the same as you for about 5 years .. i went PR & changed my diet & now i swim 4 times a week .. life is a million times better for me even though i still get SOB but now know how to manage it & not panic.. i hope you feel better within yourself once you have used the services on offer to us ... jedi
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