Just getting over the shock of being ... - British Lung Foun...

British Lung Foundation
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Just getting over the shock of being told I have the beginnings of emphysema.

I am new here - hi everyone. I did the same as everyone else and googled and scared myself silly - until I found this incredibly supportive forum. I am 54 with lupus (diagnosed 15 yrs ago). I smoked for years and years and finally gave up with the help of ecigs 5 months ago. Was really feeling quite proud of myself and my smoking cough went and breathing got much better.

Then my annual rheumy check my doctor asked for an xray as one of my lungs didn't sound right. They thought I had a clot on the lung and rushed me in for a CT. No clot but some fluid on one lung, and background emphysema. Oh, yeah, incidental findings were a haitus hernia and a renal cyst. One has to laugh. Doc did say it was the beginnings of emphysema. I must say that I don't really have any symptoms apart from a bit of breathlessness on that second flight of stairs sometimes. I have not had any spirometry testing done yet or any formal diagnosis. I do have another xray booked for the end of this month which I think is to check if I still have fluid on my lung.

I haven't had any doctor tell me what it all means yet. What does" the beginnings" mean? Does this mean I can still slow down the progress? I am still on ecigs but dropping down the amount of nicotine. Does anyone here smoke ecigs? Or am I the only idiot? Sorry for all the questions.

I have had the big scare before with lupus and am determined to remain positive through all this. I had a very weepy weekend after being told though.

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You are no way an idiot kiwigal for smoking. Many of us here have done that but have packed in now. A lot of us have googled too and scared ourselves silly! Stick with us here and recognised sites like the NHS one for proper information. Well done for stopping smoking, that's not easy is it? Your emphysema is in the very early stages and you are not getting any symptoms which is great. Not great that you have it but great that you have been diagnosed so early. This gives you every chance to drastically slow down the disease by not smoking, plenty of exercise and and good diet. Make sure you take all your meds as well. If you ring BLF (no. under the red balloon) they will send you out an information pack. They are open today so give them a ring. Take care. xx

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Thanks Coughalot1 for the encouragement. I hope BLF doesn't mind sending packs to NZ. I read somewhere that if you can walk 350m in under 6 minutes that this is good. Have found myself out walking the dog and briskly taking 350 strides with the stopwatch on. My dog is having to run to catch up! I think its time to up the pace and stop our gentle ambles.

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I am sorry you have had a weepy weekend - that's a lot to cope with. Well done with the ecigs - great positive step. I care for my husband who suffers with severe COPD and has done for about 12 years - but he still works full time just goes a lot slower than most others! It can be such a frightening diagnosis and so scary especially if you do what we all do - google!

There are definitely lots of positive things you can do to help yourself and slow down the progression of the disease and I have listed a few below. As coughalot1 says - do ring the helpline they have lots of very useful information.

1. Has to be giving up smoking and you are well on your way with that one!

2. Exercise - it is so important to keep fit. I am convinced that if my husband had kept fit he would not have progressed as rapidly! There is a course called pulmonary rehab offered to COPD patients - you have to referred by the Doctor and as we had to fight to be referred - might be worth a question to the Doctor.

3. If you are feeling more breathless than usual - go and see the GP. It is really important that any chest infections are caught early. You might feel like you are pestering the doctor but better that than being ill. My husband was always of the opinion that he didn't need doctors even with chest infections but I am sure he did more damage.

4.There are lots of inhalers available which you may or may not need at a later date - but the point is if you think that you need medication ask the Doctors, there is a lot of medication available.

5. Stay away from people with colds - colds and flu usually mean immediate chest infections for COPD sufferers.

6. Makes sure you get a flu jab and a pneumonia jab

7. Eat well - lots of fresh fruit and veg.

8. ENJOY YOUR LIFE - it will get slower for everyone we are all getting older but enjoy every day.

There is no reason why even with COPD you cannot continue to have a very happy, busy, fulfilled life! Take good care of yourself and take inspiration from the lovely people on this site. With very best wishes TAD xxx

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Wow thank you TADAW I knew you were all going to be really supportive. I went and had my flu jab the very next day and bought Pineapple as someone had said they heard it was good for you. The thing is due to the immune suppresant drugs I'm on for lupus, I am supposedly prone to catch anything anyway but I tend to get less chesty infections than my friends (frantically touching wood) I think my extremely overactive immune system may help fight the nasties as they try and dig in. Also, due to lupus, I am sure my doctor is quite sick of the sight of me. I often feel like a hypochondriac!

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Hi Kiwigal my name is Janet i work for BLF (british lung foundation) we offer specialist advice and also have nurse and adviser on the line. We have leaflet that we could email or send out in the post you call call us on 0300030555. look forward to hearing from you soon.

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Thank you Janet. I think the service you do is amazing. I would love to receive that leaflet by email and will look for your email address to request one.

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Hi Kiwigal,all the people I have known from NZ have been the friendliest and most caring of folks so it,s lovely to have you on board.Going by what you have already done,giving up smoking and walking lots along with a good diet,you,ll be fine.Stick with us here and we,ll keep you on the right road to minimise your symptoms.The best of luck.D. :D

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What a lovely thing to say FarmerD - big hugs to you :). I am pleased I have found such a friendly and positive board and hope I can contribute. I have dear friends who are wonderfully supportive so I am very lucky. They let me mope for a couple of days and then they smothered me with love and support so it was easy to snap myself out of it. In fact, my husband and I are off to catch the ferry to Picton, South island for the weekend today, with a couple of friends. I intend to find a nice long coastal walk to do while I'm there (in amongst an odd winery or two ;)

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