My husband has severe Bullous Emphysema and Pneumothorax. He is really struggling.He is 39 years old

He was diagnosed 4 months ago when he had a partial collapse in his left lung. The CT showed that his lungs were in a terrible state with giant bulla occupying most of his left lung and a smaller bulla in his right. He has been discharged by his consultant as there is nothing they can do until he is so bad that surgery may be his only option. He isnt on oxygen at present as at rest he has good stats. He has been prescribed Co codamol and tramadol for he pain which only help a little. The consultant suggested he try to live his life as normal but if he exerts himself slightly at all he becomes lightheaded and has collapsed previously. He knows he needs to exercise but even a short walk means he needs to go to his bed. He isnt well enough for them to check his stats whilst exercising so I suspect he isnt getting enough oxygen then. When he is in bed trying to sleep his breathing is worse and he feels like he cant exhale fully. He is a terrible grey colour and this morning said that he cant feel his fingers properly. We were are the COPD clinic last week and the nurse again stated that there is nothing they can do but if he has another Pneumothorax then he should go straight to A&E.

He is trying to stay positive but it is really difficult and is all consuming. I am sorry for such a long first post but I am so worried for him. Is this as good a quality of life as we can expect?

19 Replies

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  • It is very worrying but there seems to be people here who can tell you what to do for the best

    kind regards Ethel

  • Dear Redfraggle

    So sorry to hear the news about your husband. I feel you need more professional advice concerning this situation. I would be a little concerned about the grey colour and tingling in fingers, I think I would telephone NHS direct about the symptoms he is experiencing:

    Here is the website: nhsdirect.nhs.uk/

    Their phone line open 24/7, 365 days a year 0845 4647 for health advice and reassurance.

    The website also has a symptoms checker you can use.

    I'm not sure if your husband is well enough at this point but, little walks at home, as and when he can, resting as he needs to, not to overdo it, but just repeating these throughout the day.

    Its awful the feeling not being able to breathe out fully, is he taking his medication regularly as prescribed. The reliever med and preventer med?

    Being newly diagnosed is the most difficult time, I found it was over 6 months before my medicines started to work for me, it was trial and error to begin. But do go back if the medicines are not helping at all.

    Is your husband clear of a chest infection now? Chest infections always exacerbate symptoms. If you have a walk in clinic near you, you may want to consider going there today and just getting his lungs checked for infection.

    Also please don't hesitate to call the BLF helpline on Tuesday or any time in the future for advice and support. The BLF helpline is open normal working week days 10am to 6pm, its a free phone number 03000 030 555.

    I hope things settle down a little for your husband, please keep in touch and let us know how things are.

    Good wishes to you both.

    Tru

  • PS things can improve once things become more stable for him, ask his doc about pulmonary rehabilitation, how long the wait list is, you may want to be referred now. Take medicine as prescribed, drink plenty of water, eat well, rest well and when required, do the little walks each day trying to improve on stamina, duration.

  • Dear Redfraggle,

    How very upsetting and sad for your husband, you have my total sympathy. Tru has provided you with a fantastic response and i hope that helps you.

    I think i would be concerned that the consultant has discharged his care at this present time. I would have thought now knowing his diagnosis and how serious it is, would be the time you both need the extra support, knowledge and monitoring that a consultant provides together with regular checkups to see progression.

    You may wish to seek a second opinion, as is your right to do. Your Gp can refer you upon request to a hospital of choice, maybe you should consider a more specialist hospital. Going to a specialist hospital was the best thing I ever did, although i do not have what your husband has you have nothing to lose.

    Wishing you the very best of luck.

  • Thanks for the advice. We are going to go to the GP tomorrow again just to be sure. We seem to be running to them on a weekly basis. They seem to say that because he is able to get enough oxygen even though he is working hard for it that he doesnt need any medication other than painkillers and Diazepam for his anxiety . His quality of life is poor. He can potter around the house but whenever he does this he needs to go to rest. He seems terribly fatigued all the time. The consultant will see him anytime the GP refers him back so I suppose that is something.

    He doesnt appear to have any chest infection although he has been experiencing sharp pains which we think may be further pneumothorax but again unless his lung completely deflates there is no treatment.

    We know he cant recover but he seems to be getting much worse every week.

    We do feel that we have been left to deal with it ourselves. I recently gave up full time work as he doesnt have the energy to look after himself nevermind the kids so financially things are horrendous. One thing though- there are always those with heavier burdens so determined to remain positive (most days)

    Thanks again x

  • Dear Redfraggle,

    I'd definitely call BLF helpline on Tuesday to get some more advice about the best ways your husband can be helped.

    Also mentioned to the doc your husband has respiratory difficulty ie the not being able to breathe out, exhaustion of taking a few steps etc. In fact mention all the symptoms he is experiencing.

    I've just had a quick look on the web and I actually don't see any inhaler meds to help the respiratory for Pneumothorax. There are many different inhaler meds for Emphysema though.

    I hope your husband will get some relief real soon and that the lung heals well after the collapse he has already experienced. You need some sort of after care help I think, maybe ask the doc about accessing the community matron service too, to try and get advice on the dos and don'ts to help his recovery.

    It must be so difficult for you have to cope with all this too. Please do ask and accept as much help as you can for yourself and for your husband.

    Every good wish to you, looking toward better days for you both.

    Hugs Tru.

    PS Not sure if you've seen BLF's page on Pneumothorax:

    lunguk.org/you-and-your...

    Do call the helpline Tuesday though.

  • I would ask the consultant what is causing these symptoms, and are they and their severity really to be expected from the diagnoses given. Asking more questions gets more answers.

    Take care

    Julie

  • We had another incident last night which was pretty frightening. He was bringing up blood in his spit( well more blood than spit). He thinks this is just another symptom but then experienced a sharp pain which lasted a few minutes and took his breath away. He has had this before and think he may have had another small collapse. I am waiting on the GP surgery to open for an emergency appointment. I will give the helpline a call later when I have made a wee list of questions.

    Thank again everyone

  • When I used to get the pain it was actually the lung going down! When the pain went my breathing was worse - pnumothorax! That was several years ago and in the end had both lungs operated on to stop them collapsing Val

  • I would go straight to your GP never mind emergency appointment, if he wont see you, got sraight to your A & E Dept. and write down all the symptoms your husband has and what you have beeen told concerning his treatment. I cant believe that he has not been hospitalised and treated as his condition is quite serious, please do something now, and hopefully your husband will receive the treatment he should already be getting, kind regards ljc

  • Hope everything is ok Redfraggle, Thinking of you.

  • Just a quick update on todays events....GP sent us to A&E where he had another x-ray which doesnt look to have changed too much. He has been admitted for observation and will have further tests tomorrow to hopefully find out where the blood is coming from. He seems to be having the sharp pain more frequently so I think they will do a CT scan incase the Bulla has ruptured. Hopefully we will know more tomorrow.

  • Thinking of you hope all goes ok Val

  • Hiya Redfraggle, always go directly to A&E if somebody is experiencing such symptoms as bringing up blood, that's a time to phone 999. I hope your husband recovers soon, 39 is very young, surely something can be done to correct the pneumothorax?? Keyhole surgery or somethin? I had keyhole surgery after a hydro-pneumothorax and a subsequent effusion but i had a fully collapsed lung. Surely they have preventative measures to stop the lung from collapsing fully? Seek a 2nd opinion, phone the BLF helpline and good luck, and Godbless you both. D

  • Thank goodness your GP saw sense and sent your husband to A & E - at least he is in the best place now, whatever happens, which should be a great relief for you, cant believe they left you over the bank holiday with no support, we can all have great oxygen sats, but dosent mean there is nothing seriously wrong with you. Hopefully now your husband will soon be on the road to recovery now that he is being treated properly at last, best wishes to you both, ljc xx

  • Thanks everyone for there very kind words and support. I have just been to collect him from hospital as he was discharged. He spoke to a different consultant who explained that his x-ray showed changes but unfortunately there is nothing that they can do. The only option is surgery but he feels it is just too risky to consider. It will be a last resort. The blood is just another symptom. We have to accept that this is as good as it is going to get. We know he will deteriorate over time but no one can say how quickly. It feels a bit like living with a ticking time bomb.

  • I too am very sorry for you I have just seen these posts , My dad and sister had and I now have .Please Please just keep on asking and pushing for every thing that can be done is done .my sats are 95 while sitting ,but drop to 82/83 if I stand or walk 20 paces ,I use oxygen when I move about . please take care will be praying for you x

  • so sorry to hear this im 40yrs old n have hade 2 fully collapsed right lung twice pluerodisis was performed so far so gd but lung function is still terrible every breath is a prisoner lol.x

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