European Lung Foundation promotes new bronchiectasis book

[asafoetida2020]

Proud and pleased that the European Lung Foundation (ELF) is promoting through Amazon Smile my book 'Bronchiectasis: Taming It & Feeling Better - a sufferer's success story' (ISBN 9798684057328 & Kindle eBook), 0.5% of each sale goes to support the work of the ELF when the book is purchased through Amazon Smile.

[Ergendl]

Congratulations!

[asafoetida2020 in reply to Ergendl]

Thank you so much for your kind comment. In view of my radical approach it is great to have the support of other sufferers.

[Lfcpremier]

Well Done! What an achievement! Thank you. 👏💕

[asafoetida2020 in reply to Lfcpremier]

Thank you for your support, it is gratefully received and appreciated

[Bkin]

Congratulations asafoetida Very well done

[asafoetida2020 in reply to Bkin]

Hi Bkin,Thank you so much for your kind thoughts. In view of my radical approach, hearing as I did from you strengthens me greatly in my efforts to help others.

[cofdrop-UK]

Hi asafoetida 2020, When you say your book is being promoted by ELF, (responsible for the liaising of patients with clinicians at ERS) does this mean it is promoted by ERS clinicians also? I hope you don’t mind me asking but are you part of the Patient Advisory Group. Cx

[asafoetida2020 in reply to cofdrop-UK]

Hi cofdrop,What an interesting question.

It was only yesterday that I was informed that my book would be promoted by the ELF. The question of whether ERS clinicians will also be promoting it will be a hot potato; much of the thrust of my book and symptoms self-help programme is how I have not been using medication or NHS type physiotherapy. Now that you have raised this point I will raise it in turn with my contact at the ELF.

I am an e-PAG member; the PAG group itself was full when I arrived on the scene.

I have submitted a controversial question for the Patient Conference on the 27th February (which I have registered for) about the pressure of Covid and long covid on NHS staff and bronchiectasis patients - it will be interesting if this is answered by any of the speakers.

I have also been communicating with the British Lung Foundation about my approach to bronchiectasis treatment and one of the points I am not happy with is how patients are assessed at pulmonary rehabilitation courses. The form of assessment is based on the MRC breathlessness scale which is questionable to my mind.

I will come back to you when I have heard from the ELF.

[cofdrop-UK in reply to asafoetida2020]

HI,

You must have been thrilled to have heard from ELF yesterday. Well done.

I had a smile as I can see what you mean by ‘hot potato’ with regard to the ERS clinicians, although as you will know from you dealings with ELF/ERS, they are very keen on the views of patients and seeing things from a patient’s perspective.

I was part of the PAG group for about 18 months. I attended the Congress in Docklands in 2016 - the open EMBARC meeting and a smaller meeting to discuss the Bronchiectasis - Patient Priorities. What a shame you were just a bit late or we might have met. I gave it up just before Milan due to other health issues. I was very sad at first but now I am glad. There are quite a few of us here who are part of the wider e-PAG group.

Wow that’s so interesting that you have submitted a question for the Pat Comm on the 27th. I can’t recall offhand if you can register if you haven’t submitted a question. I will have to check the email. It would be really interesting.

I attended a PR course a long time ago now. To my mind it was very copd biased. The exercises were good but the talks at the one I attended were in the main a waste of time.

I am interested on the answers you receive to your questioning and refreshing approach.

Love cx

[Hidden in reply to cofdrop-UK]

I am registered. Did not submit a question.

[cofdrop-UK in reply to Hidden]

Thanks LP. I will register. Xxx

[cofdrop-UK in reply to Hidden]

Just checked the program out properly. 2 of the Prof speakers were in our meetings in London as were two of the PAG speakers. Not sure if I want to stay for all of it. Cx

[asafoetida2020 in reply to cofdrop-UK]

Many thanks for your background information and glad that you have registered for the 27th. Looking at research and general perception of lung conditions it is noticeable that COPD is often mentioned but bronchiectasis seems to be the poor relation.It is excellent that we will be at the conference in spirit if not in body.

I will come back to you as[promised after I have heard from the ELF about physicians views on my book.

You might like to know that I have started a bronchiectasis Facebook group with the title 'Bronchiectasis self help'

Keep well

[cofdrop-UK in reply to asafoetida2020]

I don’t go on facebook.Cx

[shouty in reply to asafoetida2020]

My hospital is following up all patients who contracted Covid as an inpatient which I did ( in for kidney issues not Bronchiectasis) and are doing lung function/bloods/Chest Xrays as part of study into Long Covid. I'm seeing them next month

[asafoetida2020 in reply to shouty]

Hi Shouty,As chest CT scans seem to be the preferred test with bronchiectasis I am surprised that he hospital is just doing x-rays in this group of patients

[shouty in reply to asafoetida2020]

Maybe I'm guessing if anyone shows initial lung changes they may proceed to doing CTs . I was inpatient with Nephrotic Syndrome and my chest xray then showed small pleural effusions because of all the excess fluid I had on board as kidneys were not processing protein correctly. When all ready for discharge and just waiting for transport Dr came back to tell me Covid positive. It was 3 weeks later started with Chest infections having been infection free for over a year prior to this .

I had video call with Bronchiectasis nurse and asked if lots of other people had been reporting bad chest infections after having Covid and unsurprisingly the answer was a definitive "Oh yes"

[cofdrop-UK]

Not sure if you noticed but 2 of the clinicians from ERS (at our meeting) have a book listed on the same page on Amazon as your own. Expensive but it will be comprehensive.

Cx

[asafoetida2020 in reply to cofdrop-UK]

Hi cofdrop,I found the book by Chalmers & Polverino at £99.99 (!) listed on Amazon and also another book co-authored by the same specialists.

I am sure it is accepted as being comprehensive about bronchiectasis in the conventional sense; it will not however mention many of the different methods & techniques of my programme which are contained in my book. These have worked extremely well for me and I would like to it properly trialed to see if they can help other sufferers especially those who like me don't derive any benefit from medication.

a2020

x

[cofdrop-UK in reply to asafoetida2020]

Wishing you good luck with trials.Cx

[asafoetida2020 in reply to cofdrop-UK]

Thank you, I will have to keep all my fingers and toes very, very crossedax

[Hidden in reply to cofdrop-UK]

Obviously academically accepted publications at that price.

[asafoetida2020 in reply to Hidden]

I wrote in the preface to my book that 'hopefully research information about bronchiectasis will become more accessible to bronchiectasis sufferers, and other interested members of the public, at a nominal or no cost (which is often not the current situation)' --£99.99 (plus p & p)??

[cofdrop-UK in reply to asafoetida2020]

That is a bit unfair to the clinicians. James and all the clinicians at ERS have gone out of their way to include and to be informed by And work with patients with ncfbe. The information is very accessible to those with ncfbe and indeed to anyone who has an interest for free online ERS Bronchiectasis Patient Priorities, which is constantly updated.

As LP says the 2 books in question are medical texts.

Whilst I understand your passion for a regime you have found works for you, I believe those of us who have also had it for many years (from babyhood at the start of the NHS in my case) have also found our own methods alongside the lifesaving treatments we have received and have employed self help, indeed had to.

Cx

[Hidden in reply to cofdrop-UK]

Experience and knowledge speaks cof.

[Hidden]

It can be found if you search. Those books are medical texts which poor students are required to buy.I have been with a research consultant and his team since 1981 and he always educated his patients and shared research with us. Sadly not all patients today are so lucky.Being diagnosed in 1953, I was lucky enough to meet a radical doctor in 1956 when aged 6.He started me on experimental treatment which was basically what we have today. He opened up my lungs with inhaled penicillin, taught me to breathe, to empty my lungs and insisted that I get into swimming pools and climb cliff paths.

. Over the following 54 years, my own developments of the methods of self management together with appropriate medical support from my consultants when the bacteria in my lungs had a party gave me an active and good quality of life.

It took the NHS some years to catch up with my method of clearance. They are nearly there and what they suggest is a good starting point for the frightened and confused patient who has been struggling and has suddenly had this long name thrown at them and the advice to clear their lungs.

My way is what we could call bespoke. Designed by me for me.

As many on this forum know, I am deeply frustrated by the ignorance of most GPs and many general respiratory consultants who know almost nothing about it, tend to treat it like copd and pass no information on to their patients because they don't know what it is to live with it.

Also, that when it comes to govt, we are badly discriminated against compared to cf and when Tony Blair initiated a copd programme after he came to power, any research money that had been available to us, plus services, were cut off to put the funds into that.

It is a very complex condition. There is no 'one way fits all' way of living with it. Hopefully you will come to know more people who have been living with it and managing it for many many years and see that we have indeed been employing self help.