Feel a bit of a fraud

[sukee52]

I was diagnosed over 45 years ago as a Chronic Bronchitic. I had a lobectomy of the left lung aged 18, and have had no medical check ups or treatment since then. Now in my early 60's, my average peak flow (Which I do more from curiosity than anything else) is around 160, I struggle a bit climbing stairs etc, but generally I am very lucky that the disease hasn't impacted on my life too much. Looking on this site I think I am so fortunate and I think you are all so brave, it makes me a bit ashamed that I moan about my condition. Thanks for all the interesting and helpful posts. I have learned a lot. I knew nothing about pursed lip breathing etc, so that has been a great help. Keep posting.

[Hidden]

Hullo, sukee and welcome. Your air flow certainly seems to be low, and with everything else, I think you could ring the BLF helpline to discuss your mobility and future porblems.\tel[phone]. Also to see your respiratory nurse.

You might benefit from pulmonary rehab, which is a course to improve your mobility if needed, also to help you with your breathing. All the best Annieseed

[cofdrop-UK]

Hi Sukee

You don't say what condition you have or why you had the lobectomy. Good advice from Annie to ring the BLF helpline. Sounds like you need to be seeing your doc and arranging for a referral to a resp cons.

love c

[Hidden]

Hi Sukee,& welcome from me too.You have had some good advice from Annie & Cofdrop,so please follow through,good luck with it,

Wendells xx

[sukee52]

Thanks for the welcome. The specialist who diagnosed me thought I had probably been born with chronic bronchitis. My lung had collapsed and despite two years of physiotherapy etc it wouldn't reflate so the lobe was removed. I did go to my doctor two years ago as my family were concerned about my low peak flow readings, but she didn't seem concerned and just said to carry on as I was. I am quite fit and active, I usually walk at least 5 miles a day, and go walking with my family, they do have to wait for me on occasions but generally I am very lucky.

[Hidden]

Hello sukee52, welcome here.

I would agree to chat with the BLF helpline about your peak flow. It may be things are improved somewhat for you with an additional inhaler med, the respiratory nurse on the helpline can likely advise you on this and suggest things you may want to ask your GP about..

The PR course as suggested by Annie is also something you may benefit from, that is from a 'managing your symptoms point of view and prolonging lung health', also to learn the breathing exercises and methods to clear mucus when needed. Your GP or consultant can refer you for this.

I have to say you have done remarkably well to have come this far and achieved such great activity fitness levels, min 5 miles walking a day is really good and to help you keep this up you may benefit greatly from the PR course and perhaps a new inhaler med.

I am wishing you much improvement for your peak flow and ability to climb the stairs.

May your future years continue in good mobility and activity levels.

All good wishes BC

[rick1]

I think a man of your age your peak flow should be 400.

[appyalison]

Hi sukee, good advice as usual from some of our members. Welcome and good luck. Alison

[peege]

Hi there Sukee and welcome to this site. Keep coming on & you will pick up some useful information.

I agree with everything BlakeyC posted.

You have been amazing to get so far with so little support & with a peak flow as low as that.

Keeping fit and active it a huge part of living a good life with lung problems.

I know what you mean by feeling a fraud, I too feel like one when I'm well - and I've been reasonably well since April (yahoo). You're right about people's courage here. I dont know how they do it.

Like you I get chronic bronchitis. Perhaps having measles badly as a child plus undiagnosed asthma took their toll and it's come out in my fifties (just when responsibilities are more or less over and time to live life to the full for oneself at last). Like you, I think my lungs are tough. My peak flow is always very good, consequently I've appearred fitter than I am. I also look really healthy too so two reasons not to be diagnosed yet.

As you've cost the NHS so little I think asking for a thorough check up with a respiratory professional and also ask for Pulmonary Rehab (PR) in order to stay as fit as you are isn't too much to ask. You deserve it.

PR also has a learning element to it too as well as strengthening exercises & cardiovascular.

I wish you all the best. Do call the helpline to find out how you can stay well. peeg

[sukee52]

Thank you all so much for your replies. I have made a new appointment with a different Doctor at the practice, who apparently is a specialist in COPD. All my records have been lost, so to prove that I had actually had the lobectomy I had to show the previous Doctor my scar. He didn't believe that my peak flow was as low as it was as he said I was far too well. He checked it and it was as low as I had said, he told me I was a very lucky person, which I think is true. I just felt that practices seemed to have changed a lot since I was given all the advice on breathing methods etc in the 1960's. I clear my chest every morning, but didn't use the methods of breathing advised on this site. Anyway thanks again for all the helpful advice.

[Nathansgran in reply to sukee52]

Hi, You sound fairly similar to me except that my peak flow is better. I was diagnosed with bilateral bronchiectasis around three years old and am now in my mid -sixties. I frequently coughed up blood from teens onwards and GP put me on long-term antibiotics when I was twenty-five. I had left lobectomy at forty-five (due to constant lung pain) and started on inhalers but I rarely need to see a doctor and hadn't seen a consultant for twenty years. In January I had a hysterectomy for endometrial cancer and contacted pneumonia and lost my voice for seven weeks. Chest X-ray showed lung infection still present so I was referred to a chest consultant. I have had CT scan (for the first time) and am now awaiting referral to a bronchiectasis clinic - I should hear from them in the next few months (quote). I get on with life almost normally. I am breathless on exercise and am more fatigued than "normal" people but am thankful that I feel quite well considering. I think because we have never known good health we long-termers cope better than the newly diagnosed who know how much their life has changed. Hope you continue to feel well but I agree with others that you should look towards getting help to improve your peak flow.

[sukee52 in reply to Nathansgran]

I do agree with you, that there is a distinct advantage to having this problem life long. We have never known anything other than to struggle a bit with every day life. My GP had said that there would be little chance of any improvement in my lung capacity, as the op had left a fair amount of scar tissue as well as my being only 5'3" tall. (To be fair he didn't think my peak flow reading was a problem at all) I will await my appointment with new Doc and go from there

[Nathansgran in reply to sukee52]

I wish you every satisfaction with your new doc.

[KingoftheCocktails]

Keep up your good exercise routine and heed the advice which you are going to get

KOTC

Your daily humour tonic

[sukee52 in reply to KingoftheCocktails]

Thanks I will.

[mdr-syd]

It 's amazing for someone who lives more than 45 years with

When I read your post I felt active and positive because I was worried because all websites say that the life expectancy for someone diagnosed with copd is just five years

and you had copd or emphysema ??