Mrs

I am 64 years old and have COPD and advanced emphysema. Until 3 months ago I was coping very well, however after a chest infection last September I can now hardly walk any distance (a few feet) without gasping for breath. I have been told by two doctors that "This is as good as it gets/ we can't do any more for you" Needless to say this has depressed me, but I have since heard of endobronchial valve implants and am hoping to see a consultant in the near future. In the meantime does anyone know if this can be carried out privately and roughly how much it would cost?

I have also heard of a nebuliser type machine call AIRNERGY and wondered if anyone knows how effective this would be for me as my oxygen levels are really high - typically 98%

30 Replies

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  • Hello, Gilly 1551. I'm sorry but I can't help you with your questions myself as I have COPD rather than emphysema. But I do know there are lots of people who use this site who do have your condition, so I'm sure one will be along soon who will be able to share their experience with you. I hope you will be feeling a bit better really soon.

  • Thanks for your reply, any little encouragement helps immensely. Thank you.

  • Hi eregendal COPD is the umbrella term for both Emphysema and Chronic Bronchitis, and most copders have mainly one with some of the other. Do you know whether yours is mainly E or CB? x

  • It's mainly emphysema

  • I have no idea, Coughalot - the practice nurse diagnosed me as having moderate COPD with some reactivity, but has never been able to define it further. I don't cough and I don't generate a lot of mucus. I just struggle to breathe at times, usually on exertion and when it's really wet.

  • Me too eregendal. I don't know whether it is primarily E or CB and they consistently refuse to tell me. I think they don't know and don't care. I did push the last nurse very hard and she said she thinks it is CB and told me I was lucky coz E is worse! x

  • Hi Gilly, It's true that you can lose lung function permanently after chest infections but that's pretty alarming to go from "coping very well" to only being able to walk a few feet without gasping for breath. That's a major deterioration, no wonder you are depressed.

    Where I live, we have a programme run by the respiratory physios to get people going again after severe infections - Kickstart its called - and its run because the physios know just how hard it can be to get fit again after being ill. I know nothing about your situation so have no idea whether exercise is appropriate for you, but i do know that there is at least one person here waiting for a lung transplant who regularly walks in the hills where he lives.

    Im afraid i know nothing about valves so can't answer your question, or about the nebuliser you mention. Maybe someone will be along who can. But what Im wondering is whether every possible avenue has been explored by your two doctors. You don't say what medication you are on but I hope all possibilities are being explored. Sometimes doctors can be very fatalistic about emphysema when in fact more could be done. I don't want to be offering false hope but just thinking maybe you should call the BLF helpline and talk it through with them.

    That's 03000 030 555, office hours.

    Ive just reread your post and see that your O2 levels are 98%. That's phenomenal. I don't know enough about why your oxygen could be so high and yet you are so disabled. It just seems crazy to me to think nothing more can be done. Please do call the helpline and discuss this - at the very least they will be able to suggest questions you can ask your consultant when you see him. Good luck :)

  • its not unusual I have sever emphysema my sats are normally round 97 /98 unless I have any infection then they drop a bit when I done the rehab and the walk tests I had to keep stopping to get breath back but when they measured my oxygen it was 99/ 100 I couldn't believe it either I said is your machine faulty so they tried anotherer one and it was the same

  • Yes, of course, me too. And I agree about the air trapping. But a while after the illness it has always improved. Im hoping this might be so for gilly.

  • oh yes I was just talking about the sats rather that the infection , I think the infections that's been going round this year been particularly bad I just finished 20 days on antibiotics it was one where after a few days you though it was going next day it was back just as bad , I do hope its just time that gilly needs and will improve for her ,

  • I will call and ask their opinion. I think the oxygen can't get through because my lungs are in such a state. Thanks very much for your help.

  • There must be some obstruction and yet some must be getting through for you to have such a good O2 reading. You don't say what the O2 reading is when you are moving around. Hopefully the helpline will be able to suggest what might be causing this.

  • Your O2 level is dependant on your bodies ability to uptake oxygen. You can still be SOB with high O2 levels.

  • Of course.

  • hi I too have emphysema my oxygen levels are also high normally 97 /98 when I don't have an infection, I think with us its more a problem of air being trapped in the lung than lack of oxygen ,

  • Yes, I agree with you there. There was a time when the ambulance refused to take me to hospital as my oxygen was 98%. The respiratory nurse was livid and I ended up in hospital for a couple of weeks after that.

  • that's bad they must have seen your breathing was bad ,there is a lot of medical people who don't seen to understand too much about it ,

  • Hi another option is that your sats drop a lot when you are moving round? Have you checked this? x

  • I haven't checked this specifically but any time they're taken its always high

  • One possibility might be that your muscles have wasted while being sick gilly. That would mean they don't use the O2 anything like as efficiently. I had pneumonia in March and it took me more than 6 months to build up the muscles again, and my ambulatory O2 sats.

  • Hello, I suffered from copd/emphysema. Your oxygen levels surprise me. I was fortunate to get a lung transplant 2 years ago. I am now 65 and enjoying life. I suggest you ask your consultant about a transplant but meantime go to some pulmonary rehab classes. I wish you all the luck in the world, I know what you are going through. Sue x

  • Hi Sue thanks for your reply. I've been to pulmonary rehab 3 times. The last time I was unable to do anything and they referred me to a local hospital as an outpatient where I do VERY gentle exercise and in general meet with other patients with similar problems. The physiotherapist also gives me individual attention, but I'm still really struggling. Any time before when I had a chest infection I bounced back. I've had this condition now for 14 years and I'm beginning to lose hope as both the physio and nurses who work there had never heard of endobronchial valves.

  • gilly you should research COPD and 'retainer'. It sounds like you might be a true retainer seeing you have great sats but are very sob upon exercise.

    Also research Pulmonx valves. This will lead you to info about the valves you speak of. I was offered this procedure some time ago but here in Oz there appeared to be a lack of respiratory physicians who had any experience with the procedure.

    As for the cost of the valve procedure, in Oz about 12 months ago it was estimated to be around the AU$17,000.00 mark. This was for the surgery alone so there would be a number of other costs involved. It would be a private procedure if I understand you correctly, so the consultant sets his fees.

    There would also be imaging and other testing to establish whether or not your lungs are suitable for valves. The procedure is not suitable for everyone.

    Dr Google will open up a world of up to date (hopefully) information.

    ***eregendel. Emphysema is COPD.

  • I have heard about these valves, they are still almost at the experimental stage and are not suitable for everyone and there have been cases where people are worse after they have been implanted or have become infected in their chests or the valves have moved. There are also coils that can be inserted by a keyhole technique to reduce lung size by isolating the bad parts of the lung, also not suitable for everybody and probably still at an experimental stage. Not sure at what point these things as classed as being mainstream. I have also heard of a foam that is injected into the bad parts of the lungs to isolate those areas. It's a while since I read about these things so a bit hazy about it now.

    I read a lot on the internet, it is a wealth of knowledge really. Google recent copd breakthroughs or anything you like, it will keep you busy. Don't listen to people telling you not to look there. Don't believe everything you read there though.

    Some of these things are being tested in the USA or Europe. There used to be an excellent web site coming from Canada where people could email a Q&A section and a respiratory nurse would answer questions on copd etc once a week but it is no longer updated but is still there and may have things of interest to you. I always found it better than anything the UK had to offer. copdcanada.ca

    Questions link is down the left hand side of the page. You could also take a look at this chaps blog who I have exchanged a few ideas with over the years. bitz-and-bobz.co.uk/copd/

    Let me know if you have any trouble with these links.

    I suffer from copd, severe emphysema/chronic bronchitis and know how you feel after a chest infection. My advice is to eat plenty of good nutritious food, try to be as active as possible and maybe invest in something for the home like a rowing machine or home gym equipment so you can push yourself a bit and build up your strength gradually giving yourself a cardiovascular workout. I think we tend to sit around far to much as it feels good to do that really but our hearts get weaker and weaker making it even harder to walk anywhere. People with heart disease also get out of breath. We need to try and keep ourselves as strong as we can eating protien foods like eggs, lentils and pulses, fish, fruit and veg not fried or ready meals though! Homemade soups are good :-)

    All the best and good luck

    JoHarr

  • I had the valves fitted three years ago. I have severe COPD. The results were amazing. My energy and walking improved and I felt normal again. Unfortunately it only lasted about 18 months and I started to deteriorate, eventually feeling worse than pre valve. I was told it was an experimental trial, but was devastated as my condition worsened. I had several tests and the upshot was my lungs and valves were clogged with mucus. Lung volume reduction surgery was then given as an option or to go on the waiting list fora transplant. My surgeon said I should have a good outcome, similar to having the valves initially. He intended to remove a third of my right lung via keyhole. I had a CT scan and a nuclear scan prior to his prediction. My surgery was carried out in June 2015. I woke to be to be told two thirds of my lung had been removed and not by keyhole. So I was left with a huge scar from under my arm up to the centre of my back. His registrar told me this was due to my lungs being 'full of gunk'. That well known medical term. Six months on I have continued to lose mobility and am more breathless and have neuropathic nerve damage, which I am told may or may not get better. I now have regrets about what I had done. Doctors don't always get it right

  • Hello Gilly, so sorry to read you are feeling so poorly. Whether COPD or Emphysema and Chronic Bronchitis ( I think it is the same thing ) . I wonder if the doctors who have to,d you "this is as good as it gets" are GP's or Consultants? If they not consultants then surely you can ask for a referral to your local respiratory health dept. Are you in the UK ? Because I guess that will determine your future medical path.

    Everyone is such an individual with roughly the same physiology although which may work differently. Some folk have good 02 SATS but have some difficulty with their level of function, and some folk like me have borderline ( close to needing 02 at times, but function fairly well.

    I would agree with others, if you are able to speak to the BLF helpline or email them perhaps? They are really wonderful and so supportive.

    Do keep in touch and let us know how you get on.

    Polly xxx

  • You may like to read an article I wrote a little while ago about what you have experienced gilly. It can be seen at copd.net/living/the-bump/

  • Copd is the same as Emphysema. Copd is the umbrella that includes copd and chronic bronchitis. Jo-Michigan

  • Hi Gilly,I have very severe emphysema my Fev1 is 20% .Walking is difficult for me too but I find if I force myself I do benefit from it.Don,t give up.Last year I was told I was not well enough for a transplant or any intervention yet I have managed,through pushing myself,that at the end of this month I see my surgeon to discuss Lung Volume Reduction surgery.This is basically cutting away the diseased parts to allow the good parts to work more efficiently.Even the consultant was surprised at my improvement.So try and stay positive.I wish you the best of luck.Regards D. 💐 🌷 💐

  • I am 69 and have COPD severe and mild Emphysema. Be guided by your consultant with regard to the valves. My chap is unsure about their long term effects. Its more complicated than at first seen. The Airenergy thing has very little positive feed back on the internet and its a lot of money for something not clinically proven. They made in S Wales and I had from then a huge catalog but remain unconvinced.

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