Childhood ILLness lung problems.
Has any one gone through and still go... - Lung Conditions C...
Has any one gone through and still going through with what I have had and still have would be interested to here.
45 Replies
•
Hi Dawndede. I think to get replies to your post you need to give a bit more detail about what illness you had/have and how it effects you. No one will be able to empathise or share experiences otherwise.
Hello Dawndede I was diagnosed with Bronchiectasis age 15 I am now 77 over the years I have fought against it I must have coughed up or swallowed bucketloads of mucus.
Treatment was penicillin injections first as no oral medication was known. Early years coughing blood hospitalised breathing difficulty lost count of different medication.
Happily married two children decided to join choirs practice yoga made my postural tipping board joined walking groups fighting all the way. Widowed 11. years ago nearly gave up moved to Malvern Hills family reason started fighting again lots of singing and walking.
Now damaged knee gave up walking was still singing 4 times a week, Virus no singing breathing rubbish mucus excessive sleep when I can using 4 pillows trying holistic medication etc. But hopefully still able to fight
Stan
Welcome to you too 2ndtenor! I can see the Malverns from here - on a clear day & sometimes the Black Hills beyond . Is there any hope of getting your knee fixed? A dear member used to borrow an all terrain wheelchair type buggy to continue treks to his beloved Malverns. P
Hello, Whilst trying to be careful and not involving politics the answer ref the knee this is what my GP told me last Monday whilst having a cortisone injection and requesting to be referred to a consultant.
Go private and you can see a consultant immediately cough up not literally £14000
The NHS you have to self register on a website Move To Improve
This involves physio which I had last year. And cortisone injections, opiates etc.
I only now use Turmeric and other herbal remedies
So a two tier system, which to my mind is discrimination
I miss walking and singing but count my blessings for what I am able to do trying hard not to turn into a grumpy old man
Totally of subject apart from the singing, a blast from my past, I can remember going to see Black Sabbath at the Malvern Winter Gardens, does it still exist?
ooh you've reminded me, a good friend in France was told a couple of years ago that she needed a knee op or a new knee. She's very anti medical intervention so decided to go the natural route 1st. She ordered organic curcumin (the relevant ingredient of turmeric) from UK and made 'Golden Paste' (recipe on line or youtube) to eat/add to her daily diet. After a few months no operation needed which is still the case and she walks miles. Its just curcumin and olive oil. Maybe check with your gp that its okay along with any other meds). P
Dawndede, sorry to highjack your post!
Recently had a lovely week in Somerset very near the Black Hills. A beautiful part of the country!
• in reply to2ndtenor
Morning Stan always bring it up know its a pain but as you know its for the best from 6 weeks old been bang on the back steamed kettles lots of opps they did not know what to do spent most of childhood in hospitals and converlesion homes take care Davina x
2ndtenor• in reply to
It’s good to talk definitely not a pain your childhood was difficult annI always think to listen and to listen again is sign of true friendship.
Friendship
Perhaps we are friends
And I know that you care
For the people you meet
The lives that you share
Into this life
With nothing to show
A smile a cry
Then we grow
Kind sometimes to people we meet
Sometimes not
As we find our feet
Happiness at times
Along life’s way
Sadness too
Some of us stray
Tragedy around
Who to turn to
People help listen talk
But to listen once more
I know this is true
It’s special people
Like you
Stan Hubbard 6th Feb 2002
• in reply to2ndtenor
How beautiful thankyou Stan Davina x
Hi Dawndede, you’ve certainly had your fair share of health issues from a very young age. I hope you get more replies soon. Wishing you well. Xxx😘
Hi Dawndede. You have certainly gone through the mill from an early age. There are others like yourself on here you have had health issues since childhood. Take care. X
• in reply towatergazer
Thankyou Dickinson for telling me that will work through that one take care Dawndede x
Hi Dawndede, a warm welcome to you, you're in the right place for what you've been through since childhood - and what a lot that is! I'm full of admiration of you.
There are quite a few in a similar situation as you . If you copy from your profile (click on your photo in the header bar) then edit your post (click on the 'unpsidedown V', on right below yr post then edit) and paste a bit of that history for all to see. I only had a look to check you're new 😉!
Its a lovely forum warm and support from patients &/or their carers/loved ones. Bravo for posting - it took me months! Peege
• in reply topeege
Thankyou peege I will take that on take care Davina x
Hello Dawndede,
I’m not quite sure what you wanted to know. As you mentioned childhood I will give you a resume.
I turned seventy in May
I have never known what it is not to live with bronchiectasis.
After several pneumonias in both lungs I was diagnosed at the age of three.
By the age of six my Mother received a letter (which I still have) from the supposed experts telling her that I should not be expected to survive the next pneumonia.
Thanks to a marvellous family friend my Mum found a radical and renegade doctor based at the Groby Road hospital in Leicester. He had turned his attention to the totally neglected condition of bronchiectasis.
In 1956
He started me on what is still basically the treatment today.
Six years of penicillin and alavair, breathed in through oxygen twice per day to open up my lungs and fight the infection.
Oral antibiotics when I had exacerbations. Chloramycetin ( ruined my teeth but I am still here), then ampicillin and then on and on, different ones through life.
Most importantly - ferocious and intensive daily physiotherapy ( this included being put over a wooden frame twice each day and pummelled), daily exercises to teach me to breathe properly. Learning to clear my lungs myself.
My Mother enforced all of this with a rod of iron, threw me into swimming pools, marched me up cliff paths and insisted that I learn the recorder then the flute which was amazing for my breathing but I hated it until I rebelled and gave up when I was seventeen.
All of this was very hard for a child. If I couldn’t keep up they marched off without me and there was never a day off unless I had an exacerbation and needed antibiotics. I just did it, I had no choice.
I went to grammar school, trained as a beauty therapist, was a disc jockey in London, Athens and the Bahamas.
Married and had my first child in Beirut.
Left my home there in a tank during the civil war, pregnant and with a three year old.
I now have five grandchildren and when the world is normal, I have a busy social life and am a volunteer guide at a heritage centre.
There are several of us on here who have a lifelong experience and although they differ I think that we have some things in common.
Nobody understands what it is like to be struggling to do what every body else is doing when you cannot breathe and your legs won’t work or you just can’t concentrate because the condition is just wearing you out.For a child this is worse because you cannot answer back when adults accuse you of being lazy. I spent most of my childhood believing that I really must be lazy. As an adult I have always been reluctant to give in to it, even when ill.
The horror of needing to leave a classroom or find a toilet in a public place when the gob goblin just will out!When I started school my mother told me to run out to the toilet if I needed to cough up. When I first did this I was slapped by the teacher for not asking. The next time I asked. She said ‘no’. It came up all over the desk. I was slapped and of course, shamed, for that. I was five!
I have been dragged in front of the gym class and mocked by teachers because I I had a pain in my chest. ‘Ah didums little girly got a pain’
There is so much more but I don’t want to bore you.
I hope that there is something there which rings a bell with you.
It was a lonely childhood being secretly inside myself ‘the other’ and ‘not as good’, different from my friends. The struggle never ends, it just changes its emphasis.
The one good thing that came out of this is that I have never considered myself to be an invalid. If I had I would have had so much less of a life than I was capable of.
It wasn’t until much much later in life when I found others who experienced the same and to whom I could talk about our struggles in our own private space here on HU.
Oshgosh• in reply to
You’re an inspiration,when I Think you were very lucky to have such an indomitable mother. I had a10 day hospital admission pre diagnosis there were ladies in my bit. They had all had problems since child/baby good.
Although I didn’t know them for long. I learned a lot from them.
Thank you for your post.
• in reply toOshgosh
Thankyou. I do hope that they find something to help you with the pain. I have heard that fentanyl patches can help a lot but it is all so individual isn’t it.x
sassy59• in reply to
You’re an inspiration to many Littlepom and a wonderful lady. Xxx😘❤️
• in reply tosassy59
Thank you sassy, just turn the mirror on yourself and Pete. 😊 We are all just putting one foot in front of another and trying to help others along with us.x
sassy59• in reply to
We certainly are. Stay safe. Hugs to you. Xxx😘
• in reply tosassy59
xxxxx
• in reply to
Oh bless you Littlepom it was like reading about myself so glad you are still fighting have no choice do we, I have always said we are stronger through it take care Littlepom Davina xx
• in reply to
Yes I do think that we are stronger because we have never known different and have had to look after ourselves. Maybe it has made me a little intolerant of the healthy snowflakes and whingers who come up against a thing which is nothing like the difficulties that the folk on here face every day, and just can’t/won’t cope.
The current situation has accentuated that I think.x
• in reply to
I love to dance only in doors haha my radio is on helps a lot take care Davina xx
2ndtenor• in reply to
Hello this brings back memories Groby Road chest hospital and Groby Road “cleaning “ physio barium meals and looking out of the. window at Gilroes cemetery and hopefully not ending up there.
The doctors and nurses there were absolutely wonderful but of course progress it’s long gone and is now a respite care hospital LOROS
Best wishes
Stan
• in reply to2ndtenor
Wow! Fancy meeting someone else who went there! We had to travel every month from Walsall. I had two stays for observation. When I was six I was in one of the huts that had been used for TB patients. It was a warm summer. I had great fun running up and down the grassy banks with other children. All except me were asthmatics. There was a lady in an iron lung in a room next to me and I was fascinated, especially with the rhythm of the machine. I was disappointed that we didn’t sleep outside.
I hope that you are doing well now. The doctor wasDr Mackenzie. I thought that he was ancient but he was probably about 50 😂
2ndtenor• in reply to
Hello again it would be 1965 when I was in Groby Road the doctor was female and I think Polish but I cannot remember her name.
One thing that springs to mind specialist hospitals, isolation hospitals that seems to me might have been useful if they had not been closed allowing the general hospitals to have been kept open and safe to treat other illness. Just a thought
Best wishes
Stan
• in reply to2ndtenor
Yes I agree with you. I also think that they were a good place for specialisms to thrive and develop. The grouping together in large hospitals has led, in my opinion to generalisation with concentration on conditions which are more common and attract more government money. It is true that research goes on in the big teaching hospitals but the failure to attract money still leaves us bronchs way at the back of the queue.
I was there all through the 1950s from 1956 with a visit in 1961 and again in 1965.
In the 1960s Dr Mackenzie had retired. The doctor I saw there ( whom I remember had a foreign accent) told me that I would not manage grammar school and not to go to hot countries or have children. Lol. So much for that then.
I have just read your profile. Given your age, it is interesting that you developed Pinks Disease when you did. I read some time ago that the first diptheria vacc seemed to have caused pneumonias and lung problems in some of those who had it. I mentioned this to my consultant and said ‘you must think I am crazy”
Her reply was no, she didn’t.
It seems that the substance that the first vacc was floated in resulted in Pink’s Disease in some children, which often leads to bronchiectasis. She said that although experienced bronch experts suspect this to be true, especially because of the prevalence of bronch in a particular age group where the patient did not have whooping cough or measles, no government was ever going to admit it. Worth thinking about.
• in reply to
Hello Littlepom it was a teething powder call Steadmans 1944 got Pink Disease it was taken of the market 1957 ten or more years to late My darling Mother was only 16 when I was born and had a fight on her hands one Dr wanted to lock me away because I was always crying but a little india Dr found out what was wrong his name was Dupenny and he was the police Dr just had to give him a mention never smoked in my life take care Littlepom Davina x.
• in reply to
Yes she did mention the teething powder. It contained the same element that the diptheria was floated in. It was a metallic element which I can’t remember now and of course, my mother may have used the teething powder on me. Isn’t it annoying when new doctors ask you if you have ever smoked. I do wish that they would teach them that bronch is caused by drastic or repeated infections and never by smoking. Other conditions caused by smoking can lead to infections which result in bronch. Ggrrrr.
• in reply to
It is Mercury Poison and the cure was salt spent 6 months in infections diseases hospital ST MARYS in Portsmouth but still here to tell the tale like yourself Davina xx
• in reply to
That is so interesting.
As a child I had pneumonia, chronic bronchitis, whooping cough and asthma.
• in reply toNickcv
Morning Nickcv same here hope you are keeping as well as you can stay strong Davina x.
Welcome to the forum Dawndede!
Goodness, you have been through so much!!! And you Littlepom too!!! It’s shocking how you guys were treated...more mentally back then. You must be strong cookies!!!
Can I ask what is Pinks disease? I have never heard of it!
🌻🌻🌻
Dee x
Bless you to madonbrew Davina x.
Hello and welcome 😊
• in reply toHungryHufflepuff
Thankyou Hungry- Hufflepuff Davina x
Can you tell us what you’ve gone through?
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