Hi everyone, I have very severe emphysema and have lived with this for 15 years but I am still working and managing as a lone parent, so I don't get much time to go online!
I am excited to tell you all I have spent 4 years writing a book about living with COPD and it has just been published on Amazon! It is called "Who says I can't? A Guide to Living Well with COPD" (Joe Lodge)
I hope to find more time over the coming months to chat with you all and maybe I can offer advice from my experiences.
Please feel free to chat anytime just expect a delayed response! lol
regards
Joe
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Hi Joe, Id be very interested in buying the book and reading about your experiences and congrats on writing it. It would be nice since you've advertised your book here if you could be available to answer our questions.
I am wondering what your fev1 is. You say in your post that you have lived with "very severe" copd now for 15 years, and yet on the book's blurb it says "severe".
As you'll obviously know, copd takes each of us very differently, and there can be a huge variety of function between all people who share the same fev1. Everyone's ability is dependent on so many variables such as the different conditions they have alongside the copd.
While a book like this is brilliant in showing what can be done and for an overall positive mental attitude, it can feel very problematic for those who are just not able for whatever reason to achieve what you have done. This is where the exceptionalism of one person with copd could feel oppressive to another.
All the negative stereotypes of copd do indeed need countering but i also think any attempt to do so needs to be sensitive to this possibility.
Regards.
Yea 02 has a point there. I am very pleased that you have managed so much with very severe copd, but not everyone could and I would hate anyone to feel inferior or inadequate. I will have a look at your book with interest. Thank you for posting. x
Thank you all for your kind comments and I understand what you are saying, I sincerely hope that my enthusiasm is taken in the right context as it is only my wish to help inspire those who need support. I would really be upset to think I could make anyone feel inferior! My FEV1 is currently 25% predicted which is classed as "very severe".
I manage to continue work as it is a desk job requiring only my brain and mouth, both of which usually function adequately, although I feel they may have lapsed a little today!
Well done for managing so much with such a low FEV1 Joe. I understand what you are saying, thanks for that. x
Yes I agree with o2 every one is different I have bought the book to read it for myself. I was told not any 2 people with COPD are the same by one of my consultants
Well done on writing a book and getting it published. I can't wait to read it. I don't think there's anything more helpful, than someone else's experience. I do hope you will make yourself available to answer questions for us. Looking forward to your book and getting to know you!
Hi joe again.....I guess from your book that you live in South Yorkshire area. I have just seen on my local news an item on Rotherham Breathing Space which is run as a service for people with COPD or other breathing issues. They interviewed an ex miner who had a lung transplant..I wish other areas had a similar service, they said it was in Rotherham as it was a mining area.
I'm really sorry to hear that, I hope you do get the transplant, I know I wouldn't be eligible at my age even if my FEV1 worsens. I find every day a struggle but have had to find ways to manage and it is these experiences and tips that I have tried to pass on in my book. What work did you do before ?
Joe What a great post I look forward to reading your book. I have severe copd and also worked full time until a few years ago, like you I was sitting down all day which made things a bit easier. If I had to do lifting etc then I would not have been able to. During the last three years I have been diagnosed with emphysema and bronchiastias but still refuse to give up doing the things that I enjoy or need to do. Without upsetting anyone I do believe there are a lot of people with copd and various other lung conditions who continue to work either because they enjoy it or needs must. You meet a lot of these people when you go to pulmonary rehab. When talking about our site a few said oh no,not for me yet too depressing. I have found it to be a great help with all the tips that you can pick up, and the humour and story telling can be great fun. I am sure that being a lone parent bringing up a family has been hard, I know my own daughter has found it so but wouldn't change a thing now. Do say hello again Joe.
Yes it is very hard, I have to get up at 5:30 each day just to be able to get ready for work on time! I guess with having no other options I just had to find ways to manage. I do still enjoy work as it keeps my brain ticking over, but I know there will come a time when it's going to become too much......hey ho, I'll deal with that then. Good to hear you remain positive
I have ambulatory oxygen which I use for many activities but I am not on home oxygen .....yet! I'm trying to avoid that as long as possible. My sats at rest these days vary from 90 - 94 since my last pneumonia but I am working on improving that if it is possible. I have explained most of my condition from diagnosis to current in my book and I would hope that you would find many answers to your questions there, however, I am happy to try to answer them in bits if you don't get the book. I am now in a rather impossible situation of wanting to tell everyone about my book but without wanting to sound like I'm just an Amazon salesman! So I have taken my own advice, been bold, and just gone for it!
Wow! I didn't know about Russell Crowe, I guess one of the hazards of my lifestyle is to be too busy to know what's going off around me! I want to try to avoid home oxygen as long as possible. I hope that now I have the book behind me I will have more spare time but not sure if that will happen, there is always so much to do and everything takes so long. Anyway it's lovely to speak with you, I will try to be more regular but mainly weekends as, by the time I get home from work and cook tea I am usually exhausted, so a sneaky glass of wine, then bed and do it all over again the next day! take care xx
Congratulations on getting your book published. You mention you have lived with this for 15 years and just wondered what your FEV1 was 15 years ago and how quickly it progressed? They say that if a person quits smoking their COPD should only progress, or they should only lose as much lung function as what an average person would as they age, so would be interested in knowing what your progression was over that 15 years.
The COPDgene study is trying to identify other possible reasons, aside from AAT which lead to "E" in some folks. I know I have a missing gene, but it is not AAT. I think therein lies the future tx. Meds which target that missing gene(s).
Sounds great. I will definitely check it out on Amazon. I too have severe COPD but am on oxygen and retired last July. At 65, I am probably a lot older than, so the disease had taken its toll on my poor old body!
I don't think it would be practical to upload what has taken me 4 yrs to develop within a reply, I could only share my experiences through writing that book. I do hope you can see that. I would help anyone in any way I could and I have been encouraged by many people to produce this book. I feel you are suggesting my bold approach to announcing it has possibly been a little forward of me and if that is the case then I would offer my apologies.
Not at all. I, for one, can imagine the effort it took and I salute you for being able to produce a book that may help others. I would not expect you to copy it all on here. I worked full-time until I had less than 20% lung function and I know of others that worked whilst very severe. I look forward to chatting with you again. xx
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