How I cope

[mbscbpmbscbp]

Hello everybody I introduce myself as the first person in this country to have a double lobotomy(Both parts of my lower lobes of my lungs to be surgicaly removed for the condition Bronciecsasis Bilateral (Excuse the spelling) I had it done in 1954 and was told I would probably live till I was 50 years old but here I am still coping I will reveal how I cope next time but I am interested in how other people cope with severe lung conditions. and have they any tips for me as everything has to be considered in this battle to stay alive because lets face it we have only got a one way ticket with no chance of ever coming back Incidently I have a pension specifically for Bronciecsais so I am not telling you fibs. yours Sincerely cbp

[cofdrop-UK]

Hi cbp, It seemed to be the ‘flavour’ in those days to treat bronchiectasis, even diffuse in both lungs with a lobectomy, in a way it is not today. I feel for you as in those days it was a big operation and not done laprascopically as it is today. I had a lobectomy as the age of 15 in 1963. I don’t know if I would have been better or worse had I not had it done, but I guess we have both done ok from an age point of view living with bronch. You must be doing something right.

Love cx

[mbscbpmbscbp in reply to cofdrop-UK]

Hi cofdrop Thanks for the reply. Yes a lobotomy was a big operation in 1956 or 57 I had them done in the army and it left me unable to function normaly.I gradualy improved in civvy street and just about managed to live a secluded life with my grand-mother.I attended Leeds Chest clinic for years but I dwelled too much on my condition and finished up in a Psychiatric Hospital and was a patient there for approx. two years going in and out of the Hospital as I found it very hard to keep up with other people and was so depressed that I thought about ending it all But then I discovered Meditation Affirmations creative visualisations self hypnosis and sub-liminal messages and I have been using them for over 40 years Even the doctors are astounded at the way I conduct myself and I do not appear to have any thing wrong with me except you can hear my breathing and when I cough people wake up and take notice because it sounds so wheezie

[cofdrop-UK in reply to mbscbpmbscbp]

I live in Leeds. Which clinic do you go to now m?

Cx

[mbscbpmbscbp in reply to cofdrop-UK]

I cofdrop I go to the respiratory unit in St James Hospital. I have been hospitalised twice in the last two years but I have come out fighting for my life(It is the only one I have got.

[cofdrop-UK in reply to mbscbpmbscbp]

We are not allowed to mention consultants names on open site but I hope you have the same proactive, amazing consultants I have - DP and IC. Outpatients Seacroft where I spent most of my childhood.

Cx

[Hidden]

Hi cbp,

In 1953 my mother refused to allow them to do a double lobectomy on me because the bronch was very diffuse through my lungs. The docs put a lot of pressure on her and insisted that I wouldn’t make it to 40. Here I am, nearly 69, had a full life and 2 children and still giving it plenty.

We old bronchs are tough. We have had to be.

The secret is in our lifelong personal daily management and control, together with a good relationship with a bronch expert and kicking the odd GP into touch.

Well done you.

[PosyP in reply to Hidden]

Also to cdp and cofdrop. Congratulations all of you. What a wonderful achievement. I’m sure that SOME people like me that didn’t have any problems when younger don’t realise how it must have affected your lives, we develop a problem later in life and think we’re hard done by, we grizzle and moan, because we haven’t yet learned the secret which you have given, and I quote, i.e. Personal daily management and control, together with a good relationship with a bronch expert and kicking the odd GP into control 🤭..PosyP.

[Dago1 in reply to Hidden]

Well done to you Missyscarlet xxxxx

[Bronchi1]

My mind and living mindfully is my greatest ally. I focus on what I can do and let go of what I can't !

I also take a range of supplements, eat well (low BMI is linked to poor health), and exercise !

I have bronch throughout my lungs so removing bits wont work!

[mbscbpmbscbp in reply to Bronchi1]

Hi Bronchi I am glad you are coping I will tell you how I have coped all my life with my condition Even the doctors are shocked that I appear so well That will be later when I know some members better Cheers

[Hidden in reply to Bronchi1]

Great way to go! It’s the letting go of rubbish that I find hard and it drains our sparce energy. I do struggle to keep weight on even though I take my supplements and make sure that I eat. I have had the first virus fir a year this week and I’m scared to get on the scales!

[Rattle]

I had a lobectomy at 6 weeks of age, middle lobe (right lung) removed. This was not due to bronchiectasis as far as I know but a congrnital issue where air got ”trapped” in my lung & my right lung got increasingly inflated. So not much choice. This was 1961, in Stockholm, Sweden.

After the surgery I immediately had double-side pneumonia, a bit of a blow for someone not yet 2 months old!

Through pre-school age I was then diagnosed with asthma & had pneumonia 3 times, many stays in hospital. After that I somehow recovered and asthma was well controlled, occasional chest infections - until last year when I found out I have bronchiectasis. My guess is I have had it since I was child but this was my first CT scan. I am now 57, work full time, married, have 2 nearly grown daughters, travel, exercise, live a full life - not stopped by my lung conditions so far!

(But finding chronic coughing from bronchs very annoying!)

I think a lot of us who made it through lung issues as children are pretty tough & resilient!

[Hidden in reply to Rattle]

So we are! As I keep saying We Are A Tough Lot and this post is proving how true that is.

[Redrum46]

Hi I had my Lobectomy wen I was 13 my mom was told I would b in a weelchire by the time I was 21 Stil hear 72 had check ups and looked after at hospital for my bronchitis wen I wos 70 hospital discharge Me and said my GP can look after me it’s not nice and I do have bad infection s that’s clatabride hospital

[Hidden in reply to Redrum46]

You need to goback to your GP and explain that bronch does not go away. You need the ongoing care of a bronch specialist who knows its vicissitudes. The most important thing is ongoing management. Your hospital discharged you because they are general respiratory docs and don’t know what to do with you. They are not trained in bronch. Look on the internet for a bronch specialist close to you. They are usually a large teaching hospitals. Take the name to your GP and insist on on a referral. The clinic at your hospital have failed in their duty of care towards you. Your GP should fulfill theirs by referring you to a specialist. I’m afraid that we have to be very proactive in sourcing the right care and vociferous in making sure that we get it.

BTW I also should have been a gonna in my twenties, well like you, here I am nearly 69 and giving it plenty like so many who are revealing themselves on this post.

[Redrum46]

Thank you my doctor did say he would send me back if I get worried I just don’t trust doctor at hospital he WOs new he only seen me twice said I WOs taking my meds and new wot to do and thire was no Change in condition since lLast visit so discharged me I think it’s cutbacks hear in uk and the fact I’m 70 I will look in to a bronch specialist like you said as I have had a scary time this winter x

[mbscbpmbscbp]

Hello Redrum did you win the Grand national twice (Sorry just a joke) I am like you I see my local practitioner (Doctor) when I feel as if I need to The respiratory unit in hospital sees me about every two months and I have tests done =Xrays blood tests etc.If they diagnose any deterioration in my condition they get onto my GP with instructions as to what to do next I have been hospitalised twice in the last two years and have faith in their expertise But there is things you can do to help yourself instead of relying on the drugs and the proffesionals I will elaborate next time.

[Redrum46]

Thank you I am being sent back don’t no yet witch doctor it as to b clatabride hospital I had gone to see a specialist at fazakerly hospital over something else follow up as I use a sleep aponia Machine at night wen he looked at my records he said I should never have been discharged as I am on Azithromycin And is getting in touch with my doctor to have me sent back and all so give me a flutter for my chest