Emphysema. My husband (82) has this condition and a tumour on his lung that might be cancerous. He has no cough, no phlegm, no pain and eats and sleeps better than I do. His only symptom is breathlessness. He has had one chest infection in the last ten years and has never had a hospital admission. He will not walk anywhere for fear of becoming breathless so I push him in a wheelchair. He does suffer with anxiety and every few weeks he has an 'episode' where he fights for breath and is very distressed, these last from a few minutes to a few hours, never longer. He sometimes appears frozen to the spot. Blood oxygen levels always 96. I really don't know if this is an anxiety attack or emphysema. These episodes can be triggered by silly little things like the thought of going out to meet people. How can I tell what is going on? He will not admit to anxiety and insists this is a physical reaction. I am not able to live my life as I would wish for fear of him having one of these 'incidents' in the early hours. He has stopped me from going out or going on holiday. Does anyone know if emphysema can have this effect? Many thanks.
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Hi, your husband's episodes do sound very much like anxiety particularly those linked to the thought of going out and given his good blood oxygen levels. I have emphysema and also rarely cough and have no phlegm. Anxiety definitely makes my breathlessness worse, often to a severe degree. Him not walking anywhere will not help at all as the less you do with this lung disease the worse breathlessness can be but it is a case of finding a balance.
I understand the impact this is having on your life but given that he seems to be in a very well established pattern of behaviour, I really don't have any suggestions as to how you deal with it. It does seem, however, that if he sleeps well it is unlikely to happen during the early hours unless he has a flare up or infection and it may be that you would be able to tell the difference then.
Breathlessness causes anxiety and anxiety causes breathlessness so it is a chicken and egg situation. It is almost impossible to not feel anxious if you are struggling to breathe. Does your Husband have a Respiratory Consultant that could assess his lung function and ambulatory oxygen levels if these are both good then you you would both be reassured. Being a carer .is very hard and living with a lung disease is difficult too so it is not easy for either of you. He is lucky to have you to care for him. x
Hello there 🌺 I am no doctor but I have to agree with the comments, this sounds like pure anxiety. Like Tia mentioned Breathlessness causes anxiety and anxiety causes breathlessness. And I can totally understand that you feeling helpless, because he is not leaving the house.
I would have a chat with your GP about his anxiety, that he might get some medication for this. There should be something available for him to get this sorted. Because it is clear that it has a big impact on your life as well.
I hope you can get some help to get this sorted when speaking to your GP about it. I wish you well and best wishes, keep us posted.
That is not Emphysema and I would say definitely anxiety. With oxygen at 96 he should not be out of breath on walking to the extent he needs a wheelchair, I would talk to his GP and get a serious explanation which would put your mind at rest
It could be anxiety for sure but from what I have read on here people can have quite low lung function and be in the very severe stage but still have good oxygen readings. It seems the two don’t always correlate to each other.
I am certainly no expert either and you have many years experience. You are always kind and helpful to newcomers too. I didn’t mean to undermine what you had written. xx
Oh bless you, you certainly didn't undermine what I had written at all, Just wish I could be more helpful to you but think only a GO can get to the bottom of whether he actually has Emphysema or not. I remember when I was first diagnosed my first symptom was being breathless and suddenly realizing I was really struggling to walk up a hill or incline. Now I walk as much as I can by using a mobility walker but when we go on holiday later this year I have asked my partner if we can also take my wheelchair in case its needed just think I may feel more secure knowing I have the option if I am struggling. He says he does not mind as he can get round the shops quicker. Lol x
You are amazing! I know you have been diagnosed for many years and yet you stay so positive and are doing brilliantly. Don’t blame you for wanting to take your wheelchair when you go in holiday I am sure at times it will be helpful to both your hubby and yourself. ❤️
Yes I have suffered for some31 years now and worse since they added the Bronchiectasis to the Emphysema. I am not to bad during the day but trying to sleep at night is a nightmare as I keep waking either coughing or full of wheeziness which takes time to settle. We bought an adjustable bed which helps a bit but I am just starting to think that best to accept things as they are and make the most of it. Being thankful that inspite of all the restless nights I am still here to enjoy my grand children and what I can get out of life. I am just so very lucky that my other half does so much of all the things I can no longer do. He does most of the laundry and all the hoovering for me and a kind neighbour has taken over any ironing I want done. Shopping we do on line at the moment which helps. Easy to feel panicky at times though. I suppose many are just as bad if not worse than I am so I try not to grumble
helo, im sorry you both going through this, i have empherseyma and do get very short of breath, my wife of 50 years does most of sorting out, i was in same boat as your husband after i came out of hospital nearly 5 years ago im afraid ikept and still do get pannick attacks,, and didnt like my wife being out too long, but now my wife has her own time, she goes to visit her sisters and goes on holiday with her friends we have good neighbers and also daughter who lives close, my poor wife calls it restbite and it has become a bit of a family joke, we both in our 70s, i can go if i want but mostly stay home, this works for us and i know it wouldnt siute everyone but sometimes best to be able to walk away for a while i hoe you can both get it sorted
I have emphysema and aspergillosis my oxy sats are anywhere between 90 and 99 my lung function is down to 28%. I am unable to walk more than a few paces without getting terribly breathless, so I use a mobility scooter or a rollator. I do have a wheelchair but don’t expect my partner to push me about, she has her own health problems. Has he been on a pulmonary rehab course? if not ask his GP for a referral to a course or see a physio and get info on breathlessness management. If he can learn to control his breathing this may help with anxiety.
I would personally speak to your GP. He needs ambulatory monitoring of his oxygen levels which may fall whilst walking. Whilst sitting in a chair I agree that 96% is good but his saturations need to be checked when he walks. I agree that this could all be due to anxiety but until other causes are medically ruled out it would be unsafe to proceed. If it is anxiety then showing him that his oxygen levels are good whilst walking may give him reassurance that it is safe.
I do not suffer from emphysema however I suffer extreme breathlessness, use a wheelchair if I need to walk more than 10yards, saturation 94/95, commenced non invasive ventilation due to having a neuromuscular disorder retain carbon dioxide. I can empathise with your husband, feel for you as to how demanding as his care giver........ perhaps an email to his GP Practice Manager explaining how this impacts on both your health and well-being, they can sign post to appropriate services determine the exact cause offer treatment/support.
It does sound like anxiety, He should try to keep up his walking as this is good exercise , even if it's not very far , it would probably improve as time went by . You need to talk to your g.p re pulmonry rehab . I feel for you , you should not have to push him around in a wheelchair , personally I try to be as independent as possible , it's easy to let someone else do it for you . Best of luck , I hope things change a little for you 🤗🤗🤗
I agree with Melnel- talk to your doctor. Your own well-being is obviously suffering, having to look after him. If it were me (big if) I would tell him I needed to see a counsellor. My hubby was very puzzled when I went down this route 2 or 3 years ago. ('What have you got to be stressed about?')It was sending a signal that I had needs too. We're not medically qualified on this site, so we can't say definitely whether your husband has emphysema, but it sound as if anxiety plays a big part in his condition. Best wishes- I hope you find a way of improving your life.
The BLF have a helpline , open again on Monday . 03000 030 555.
Could you give them a ring and talk over your difficulty .
The BLF website has also some good information.
Advice on how to manage breathlessness
As has been said , anxiety and breathlessness often go hand in hand , I panicked this morning as my inhaler was upstairs , I was downstairs and struggling . Shattered now !
My blood oxygen levels can be ok , but still have difficulty breathing at the same time .
I would also contact your health professional and discuss how both your lives are being affected .
A friend of mine’s husband had emphysema , she had a respite carer who would come in for an hour or two while she went out . But I guess that service may have been cut now .
I have sever COPD Emphysema and suffered strokes and heart attacks. Breathlessness comes with it and brings on anxiety. I use Lorazepam but never more than 1mg a day. Showers and toilet times are my nightmares and going out in weather that will effect how I am breathing. It is very scary and a Para medic told me once that they are trained what it is like to have emphysema by having to breathe though a straw and run up a flight of stairs. I also get counselling and practice various breathing techniques.
My wife is in a very similar situation. No phlegm or cough. Sats about 94. A trip to the toilet can be a very slow experience with plenty of stops. Any trip out is in a wheelchair. She now has supplementary oxygen, which helps. Her doctor feels the sats are sent plummeting when she moves but covid restrictions have meant we have been unable to verify this. I think the fear does play on the mind and leads to less mobility, which is not ideal. Best wishes.
My blood oxygen can go from its normal 92-93 down to 82-83 with little exertion. Once I sit it pops back to over 90 rather quickly. I do feel very breathless when it is in the low 80’s. Is he wearing the oximeter the whole time? Maybe try to have him do so if not.
Hi I have severe COPD and can fully empathize what you and your partner are going through. I really struggle to breathe and use a wheelchair as walking is a problem. I now suffer from anxiety which I never did before covid and I know it makes my breathing worse. My sat levels are ok which like you is strange. Have you spoken to the doctor about the posibility of having zepha valve op . I am having ct scan in June to see if I am eligible . I understand it can make a big difference to ones quality of life.
Hi. I am so sorry to hear what you are both going through at the moment. As the other members posts have mentioned, you can call us and speak to one of our experienced respiratory nurses about the general management of your husbands emphysema, do give us a call on 03000 030 555. Speak to your GP or health care practitioners about what is happening so they can also support you or signpost you to services who can help if he does have anxiety. I have added some information from our website on breathlessness and COPD for you to read below.
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Richard Briars / Emphysema
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