I have been really struggling with severe breathlessness for a good few months, I have stage 4 COPD. We just try and get on with it as we know that we are going to struggle more as the disease progresses. I had to ring 111 on Wednesday evening and although everything was good with me, the paramedics did all the checks, but said I needed to go into hospital , obviously there is something wrong somewhere. In a struggling NHS , I could not fault the service that I received, I was taken toHospital , waiting only minutes to go in to emergency unit. All obs were done, sats were low, chest was clear, bp normal, arterial gas test was done . Result. was that my body is holding on to the CO2 and it is that which was causing the problems, with my breathing, anxiety and fatigue,( I knew I was a retainer but I had done all the things that we are supposed to do to try and get rid of it. X ray was done which showed just worsening of my Emphasemia.
My consultant came to see me and said that there is no more medication , different to what I already have that will help, and I was told I needed to be on a home ventilator, which may ease my breathing and possibly a bit better quality of life, she also said talk with family and decide the options and that I had 2 years left before it finished me off. Obviously I was distraught, but I have got my head round it now.
Just wanting to know if any of you are coping with this and how are you managing.
I do have a husband who is amazing and a wonderful, supportive family so I do know how lucky I am.
love to all xx
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bradshead
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Hi bradshead. I have stage 4 emphysema and struggle with worsening breathlessness. I am on oxygen 24/7 and my respiratory nurses come every 3 months or so to check my blood gases. So far my carbon dioxide levels are within acceptable limits. I dread becoming a Co2 retainer and needing cpap.I was discharged by my consultant in 2018 when he said that there was nothing more he could do. I hope that your consultant will keep you on her books though I'm surprised at her giving you a life expectancy. I just know that I am worse each year from the year before.
I'm so sorry for the bad news you've been given- I hope the consultant proves wrong. Now they know about the retaining I hope they can tweak your meds a bit to make you more comfortable. Best wishes, xxxx
Hello bradshead! I was prescribed oxygen in August last year : 2l and 4l on exertion. In the October I was admitted to hospital with a virus and they found I was retainer. Nobody explained the implications of this to me and, unfortunately someone missed putting it on my notes so I was discharged with the same amount of oxygen. Consequently, I was rushed in as an emergency a few weeks later. As being a retainer was not on my notes they had me in A&E on 4l oxygen for 24 hours! During my 14 week stay in hospital I was introduced to a bi pap, and was told that it was my only chance of recovery. It was all a shock and it took me a while to recover, but I am currently on 0.5l of oxygen, down from 0.75 when I left hospital, and feel much better than I did last summer. I have never been given a life expectancy and the fact that you have I feel is questionable.
Sorry about the long reply, I just want you to think of your ventilator as a friend! Mine is called Victor..... Victor the Ventilator! It has really improved (improving) my quality of life and I wish you well with yours😀 Laurie xx
Out of curiosity, when you say that you did all the things we retainers were supposed to do to get rid of the CO2, what are they? I have never been given any pointers in that direction!
Thank you for your replies. I first had my Oxygen in 2016, I was on 4 litres ambulatory. It was put up to 6 then 8lpm after getting co vid, pneumonia and pseudomonas. I then was put on 1 litre over night. Most people with COPD retain carbon dioxide. My gasses were measured periodically and always a little high but nothing to be concerned about. I was told never to alter the amount you use and do breathing exercises for 10 minutes 3 times a day, breathing in deep and exhaling very slowly and forcefully . I do apologise if I mis led you in any way about” (I did every thing I could” )..Aparently my CO2 is just sitting in my lungs and it’s that , that has caused the debilitating breathlessness and anxiety.
Yes it was a shock, but come on, we are all tough Cookies.xx
I hate to think that the hemoglobin in the alveoli and lung tissue can't release its CO2 and take up O2 because of so much CO2. Then it's on its way for another round trip still holding CO2, not O2. I’m with you, Bradshead. Pursed-lip breathing helps a little.
To clear all the stale air from the lungs, use diaphragm breathing and breathe out through pursed lips. The out breath should be twice the length of the in breath. Practise regularly and diaphragm breathing will become the normal method rather than shallow breathing using the upper chest muscles only
Sorry but it really annoys me when doctors give any sort of timescale. They cannot possibly know and there are people on this site who have lived well and past any particular timescale. Keep going as much as you can and you show that doctor that you mean business!
If I’d listened to others I would have died about 10yrs ago! Since I retired my COPD/asthma has stabilised and even catching Covid last December didn’t mean a downturn in that part of my health.
As I said just keep going as you were and continue to live and enjoy your life.
Hi chook, sorry that your going through all that, I think I might be holding on to too much c02 aswell. Not really sure. Is there a way you can tell without taking a trip to the doctors. My chest is clear and my blood oxygen is 98 but am so short of breath it doesn't make sense. I did have a cough which used to help me but that has sadly disappeared 😔
Hi Mellywelly, CO2 retention is usually picked up if you have to go into hospital with an exacerbation, one of the tests you have is an Arterial gas test which reads your levels, and A gas test is done regularly for those who use Oxygen. We are all so different with this disease, but don’t hesitate to see a Doctor if you are worried. xx
Hi sorry to hear your Consultant scared the life out of you, very remiss of him. I have the same problem as you in that I am a Co2 retainer. I was put on an NIV machine for use at home and been on it now for some 19 months. My oxygen during the day was set at 2litres but has been reduced during the past couple of months to 1.5ltrs. At night when the oxygen is attached to the NIV it is at 3ltrs. It took some getting use to and even now I cannot get the mask in place and secured without my partners help. I now sleep with it comfortably though it has taken me quite a few masks to finally get one that is comfortable and sees me sleeping through the night without any leaks. I can only wish you well, bear with it and it should help a lot. Best wishes Ruth
Thank you so much for taking the time to reply. I am not afraid of using bi pap ,it’s just that I am so claustrophobic, but if it helps , I will conquer that fear, you have put my mind at rest ,thank you
Hi again, I too am claustrophobic and the B******s at the hospital gave me a full face mask which terrified me. When I saw my consultant at Lane Fox he was very upset that I had been subjected to this and gave me a mask that just covers my nose and mouth. It is fine
They also gave me another which is called a nose pillow (I think!) which just covers my mouth and cushions up to my nose , also fine
I slept 10 hours on it last night and average 8.5 - 9 hours!
Hi Leo, I just hope and pray that I don’t. get the full mask, I could cope with the smaller ones I am sure. So glad that you are coping with it now, let’s hope a better quality of life is ahead of us, not expecting miracles but just to. be able to breathe easier, how good that would be, take care xx
I am exactly the same and a retainer, I am on a Bi-Pap of a night time for 10 x hours and oxygen when active, my respiratory nurses say the best they can do is to keep me stable, but I have never been told I have only so long to live and never thought about it, I think what they said was very wrong.
I am just in the middle of a rehab course that I asked to go on and although I struggle I am making progress.
I have been to see a consultant in London and was told I was a good candidate for valve insertion, which I am now waiting for.
The consultant told me that if successful it should put me back to where I was 5 x years ago, so there is hope out there and through new medical advances you never know what is round the corner.
So sorry to read that you are having a rough time. I am not a retainer (yet) -on 5 lpm ambulatory, but it sounds like you are finding it tough ?
Did the consultant offer you the opportunity to try the medication Roflumilast ? I was offered it last year and it has made a big difference to how I am feeling physically. Did the consultant offer you a PIFU ? Patient Initiated Follow Up ? This means that if you need to you can be seen at outpatients if YOU feel you need to, usually for a period of a year.
If you get to a point where you can be accepted for PR then do take it, it can make a difference to how we feel and the level are able to function at.
Whether we are given a prognosis or not it can be helpful to think about the end of life care. I completed an advanced care plan some years ago and am pleased that I did it, feeling somewhat resassured after I completed it. Appreciate it can be a scary thing to think about the end of our lives but you may like to look at the website ?
Thank you for your reply. I have been on Oxygen for 8 years, so I do see respiratory nurses regularly and I have done Re Hab 3 times. I was diagnosed in 2022 so have had COPD for 21 years, I was also diagnosed with Bronchiectasis 10 years ago and Pulmonary hypertension was diagnosed 2 years ago. The unfair thing is, that I do not feel ill, my bp is perfect, my bloods are good and I don’t have diabetes, I am obese, so have been very lucky to be as I am. I will never give up and have to much to live for .
Now Yr on niv,u shld get followup appointments with ventilation team .gd luck with niv,it can b challenging at times.there r other masks available,if u struggle x
So pleased that you feel so well and enjoy good regular support from Resp nurses that is great !
I am not far behind you ! Diagnosed 20 years ago and 02 for 6 years. Probably just beginning PH ? Exercise classes x 3 a week… live alone just need a bit of help with the garden.
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