Chicken in the healights: Hi all, i am... - Lung Conditions C...

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Chicken in the healights

MelAidJack profile image
37 Replies

Hi all, i am new to this group so iam sorry if i am talking nonsense thats because i am confused and dont know what to expect, to be honest I think I have been wrongly diagnosed. Anyway the reason I am writing on here is because i am scared and dont want to talk to my family and worry anyone. I dont even know what I have, my GP told me I have 'lung disease' and will need to speak to a chest specialist. I have been having tests (bloods, xray and CT scan) my visit to the GPs was yesterday, so now iam waiting to have a letter from the hospital. What I dont understand is iam 49 and a non smoker? sorry I dony know what I expect anyone to say to me, I just wanted to introduce myself cause if my GP is right you are going to hear a lot more from me, good bye for now Christine

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MelAidJack
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37 Replies

The use lung dieaees as broad term .. The could of been kinder and said copd SO must reflect leval of disease.

Most doctors would not say anything if your lungs was diseased but you was carrying on ok " mean age " stuff aka acceptable level of disease given age that means.

As to smoking or not smoking.

Am not 100% but did read that if you lined two middle aged people up the none smokers lungs function would be worse WHY well that's the golden question.

Ad not worry to much HAVE to stay positive .. Like my lung doctor say's if it's not one thing it would be other.

I know it's no consolation really but makes it tad easer palatable

Plus side is your seeing being refereed to experts and believe me this lot suffers have to fight tooth nail for that

MelAidJack profile image
MelAidJack in reply to

thank you everything just seems to be happening very fast I will just have to get my head around it then deal with what is given to me

pergola profile image
pergola

Welcome, Jack. Good that you came to this forum. I do think you need reassurance on one or two counts. I reckon you needto see your GP/respiratory nurse, or phone the British Lung founadtion. Make a list of questions to ask. Agreed too young to be ill but I am sure a lot can be done for good quality of life. Someone will be along to advise you as well as me.

MelAidJack profile image
MelAidJack in reply to pergola

thank you i am going to sit on it for a week and give myself time to let it sink in then if i havent heard from hospital i will contact GP receptionist and ask her to clarify a few things, thank you for your very kind words

Hi it is possible for a non smoker to get copd, though I don't know about other lung diseases, but most of us are or have been smokers. You can also get lung disease from working in various industries ie the building trade (asbestos) or the rag trade etc. It can also come on from being in very close proximity for years to smokers. The other reason is it can be inherited. The latter is quite rare and is genetic called Alpha Deficiency 1 gene. If you have had/have close relations who have suffered from copd this is a possibility. A simple blood test can rule this out.

I hope that you don't have any lung disease at all, but the main thing to remember is if you do then it can be managed and is not a death sentence. Don't ask Dr Google and stick to recognised sites like this one or the NHS. There are a lot of scare stories out there, but we are the ones who live with it and between us all we have a wealth of knowledge about virtually every lung disease under the sun, so stay with us.

Nothing personal but I hope you don't need to be here, but we are all here for you if you do. x

MelAidJack profile image
MelAidJack in reply to

Hi coughalot thanks for your kind words and advice. I am a support worker I work in independent living services usually with people with Autism learning disabilities so couldnt have got it from working environment, thats another thing i am worried about I live alone with my 11 year old son I need to work to pay the bills. nobody I know have had any form of lung disease? its so confusing. I am very pleased to find this site, thanks again

Titchy52 profile image
Titchy52

MelAidJack welcome to the site hope it all works out well St hospt x

MelAidJack profile image
MelAidJack in reply to Titchy52

Thank you Titchy I am so pleased that groups like this exists

Watfordgirl profile image
Watfordgirl

Hello Christine and welcome, though hope you won't need to stay!

This is one of the most horrid bits of any condition/illness - you don't know what you've got and you've probably got everything, or imagine you have.

You can ask your GP who you've been referred to, then phone their secretary to find out the likely waiting time till you're seen. If it's too long for you sit in the headlights, could you ask to go privately for the first visit? The thing is that until you know what you're dealing with, you can't begin to deal with it.

You don't want to tell your family yet, but when you do go to the hospital, could a good friend go with you? We tend not to hear things when we're scared witless! And write down any questions you might want to ask.

Finally, let us know when it is so that we can all be there holding your hand. Sue x

MelAidJack profile image
MelAidJack in reply to Watfordgirl

Hi Watfordgirl thank you for your very wise words, i am in denial I think because i cant understand how I could have this condition, I do need to see someone soon just so i can start to understand what on earth is happening to me and why, I will let you know the outcome

Hi MelAidJack. Welcome. First of all. Sit down, take a deep breath and stop panicking. You are the same person today as you were before the question of whether or not you have a problem with your lungs came about. There are many of us here who have been living very full lives with severe lung conditions for over sixty years. We are still here, managing our health and supporting Each other. I hate the phrase 'lung disease'. it is mis-used all of the time. A disease is an illness which is infectious and can be passed to others. Non of us on this site have lung disease. We have lung damage of one type or another which has resulted in our various conditions. We are not infectious to others. Unfortunately GPs are notoriously ignorant regarding lung problems and their management. It would be a very good thing for you to see a chest consultant. Then if you do have a lung condition you and your GP will have support from them. The Consultants tell the GPs which medication to give you. Take one step at a time. Don't worry about your family knowing that you may have a lung condition to cope with. Supporting you to live a normal life gives them something positive to do. We are all here for you. Keep talking and let us know when you get a positive diagnosis.

MelAidJack profile image
MelAidJack in reply to

Thanks stillstanding first of all thanks i need grounding all sorts been going through my mind like will my son end up my carer etc, so its good to hear that people can live full lives with it thank you that means a lot

Tee1008 profile image
Tee1008

Hello Christine and nice to meet you.

You don't mention what (breathing?) problems or symptoms you were having that were the reasons for all the tests you have had. The good news is that you have had them and, hopefully, will soon be seeing a specialist at the hospital. It is very difficult not to worry about what your results may mean, especially when you don't want to upset your family with your concerns, so please feel free to talk here.

We can try to help..

Tee x

MelAidJack profile image
MelAidJack in reply to Tee1008

Hi Tee i have been getting out of breath but just put that down to being a little lazy I never told anyone about being out of breath my complaint was trying to eat food and bubbling feelings that I thought i had a hernia thats was having why tests and severe back pain thank you i am so pleased I found this group

Tee1008 profile image
Tee1008 in reply to MelAidJack

I am pleased you found us too, Christine. Even if we don't have the answers, at least you have someone to talk to about your worries. The next thing is getting the results of all those tests and we'll go from there.

Do let us know and please keep in touch.

Take care

Tee xx

Hi, I have Bronchiectasis. This is not necessarily caused by smoking. I know some who developed it as children with parents who have always been non smokers. some say Bronchiectasis is COPD, My consultant disagrees. In case this is what you have, visit this site nhs.uk/conditions/bronchiec... where you can read more about it. Best wishes.

MelAidJack profile image
MelAidJack in reply to

thank you poemsgalore

Katinka46 profile image
Katinka46

Hello Christine

Welcome. This is a brilliant site. You will get a lot of help, support and advice here.

You do not mention what took you to the doctor's in the first place. Were you breathless? You do seem to be left in an awful limbo: could your GP not explain at all what the tests show? Or even why he sent you for them? It is very unlikely that you have COPD if you are a non-smoker, and have not lived or worked in a toxic environment. In the light of this nightmarish situation I think you should phone his secretary and ask him/her about the GP's referral to the consultant: the name of the consultant, was it marked as urgent, you should be able to get a copy of that referral lette (which may have some clues about your condition). The GP's secretary should phone the consultant's secretary to get an idea of the timescale. The secretaries are often key to any progress; a good one is worth his or usually her weight in gold. I butter them up like made and always thank them profusely and have even sent them flowers. I was in our local hospital once, called up to see the consultant's secretary. The appointment was months away. She took one look at me ----I was very breathless ---- said: "Haven't they got you sorted out yet?" Twenty minutes later I got a text with an appointment for the next week.

Use them. It is their job and in my experience are always happy to help.

All the best and let us know how things go.

Kate xxx

MelAidJack profile image
MelAidJack in reply to Katinka46

Thank you Kate I will remember your great advice, Sorry I didnt really explain myself. I went to my GP because I had a cough that took months to go away and when it did I started to get severe back pain (top of back) that lasted over a month the pain is still there but not as bad now its manageable, its always there but not severe but the main issue is my eating, Its hard to explain but its like bubbles in my throat. I went to my GP because I thought I might have had a hernia. I lost my mam to cancer 26 years ago and my dad had a heart attack 4 years ago but I dont think anyone in my family have had any issues with their lungs. Its all a bit too much to take in at the moment . thank you for your advice and comforting words, I will keep you up to date . thanks again

Christine

in reply to Katinka46

absolutely agree Kate. Those secretairies can be wonderful

Hi Christine. ..you seem to have had all the tests that any doctor would need to know what you have or haven't got..so am a bit surprised that he hasn't been able to give you a diagnosis other them you got a lung disease...

I think if it where me I wouldn ask him to be a bit more specific but I know most people would not be able to think probably at that time and say thank you and leave.....

You could go back to him and tell him how much it's worrying you to see what he says...

MelAidJack profile image
MelAidJack in reply to

Hi Sailer65 to be honest I dont think i was listening to him properly because I had already made my own prognosis before going into the surgery for the results. I thought i had a hernia and assumed he had got it completely wrong. I wish I had took someone with me just to explain to me afterwards what was said. I think i will have to bring someone along with me on my next visit

MelAidJack profile image
MelAidJack

Thanks Hanne62 I am a little panicky at the moment but hopefully that will settle once i have a better understanding . I aim pleased I found this group

diesel12 profile image
diesel12

Hi Christine. It is very scary to be told you have lung problems, I was diagnosed in February with moderate copd and I have to admit, I had a quiet melt down. However, I am working full time, go to gigs, go walking and pretty much do what I choose to do but maybe a little slower. You need to exercise and eat well and relax. Easier said than done I know but we all live our lives and are generally happy, well as much as the next person and when we are having a bad day? well we come on here and have a good moan :) You've found a great site with a lot of knowledgeable people who love nothing more than supporting each other and having some fun. So make yourself at home, you are very welcome here :)

Billiejean_2 profile image
Billiejean_2

Will we say 2.00 at the Crawford ?

Just for a change :)

Azure_Sky profile image
Azure_Sky

If you weren't called to see a specialist next day. I wouldn't worry. The NHS move like greased lighting if you have something life threatening.

There are many lung conditions which have nothing to do with smoking. I hope you get reassurance from your GP. I would certainly be after mine if I were you.

So many Doctors waffle on in gobbledegook. It is important to pin them down with questions. I had to say we wanted the truth and asked that it be given straight.

I pray that what you have can be managed and you can carry on with a good quality of life. I have COPD, diabetes and arthritis. One just has to be strong and take charge.

MelAidJack profile image
MelAidJack in reply to Azure_Sky

Hi Azure-sky thank you I am sorry to hear about your health issues, i cant imagine how you manage to live with three conditions and hear i am ranting on about myself, I dont normally complain or moan I had only met my GP once before I started to have issues, its just i dont know what I have to get my head around it, but its comforting to know about time limits etc between appointments , thanks again christine

Azure_Sky profile image
Azure_Sky in reply to MelAidJack

I am managing fine, I have a few issues they pale into insignificance compared to Richard.

When I was first diagnosed I was extremely worried, but it is part of life now. I muddle through as best I can.

I expect you will have regular check ups once you have been diagnosed properly. Ask lots of questions too.

in reply to MelAidJack

Hi I know exactly what you mean as I was the same. You just live your life how you want never thinking about illness as you have always been very healthy. It's a hell of a shock to find your body has let you down isn't it?

I am 62 and was diagnosed with mild copd around 7 years ago and I am still mild. Until then I was always healthy and robust and used to bomb around living life to the full. Now I have to take things a bit more slowly and think about boring things like health. x

lynnekay profile image
lynnekay

To be honest, anyone can get any disease of any body system at any time. If it wasn't lung disease it could be something else. Unfortunately as we get older, even at 49, our bodies start to show signs of wearing out

Many people here have tried to reassure you that lung disease isn't a death sentence, so try not to worry, and find out as much as you can about the disease you have and how it can be treated

Hope all is well

MelAidJack profile image
MelAidJack in reply to lynnekay

thanks lynnekay everyone have been great until i found this site, i thought 'this is it' but listening to others who have already been through this stage its not a life sentence, like i thought, it would appear to be more a learning how to adapt my life thank god

lynnekay profile image
lynnekay

Hi again

You're right. It is about adapting which will take place slowly as you find out more about your condition. You may be very able for years, or you may find that you're a bit breathless and have to take life more slowly. Either way, you'll be able to do lots of things for a long, long time

MelAidJack profile image
MelAidJack in reply to lynnekay

Hi yesterday I felt so panicky today I have hope, but i suppose even when you have lived this life for a while you will get your up and down days, just waiting for my hospital appointment now I will keep you informed x

soulsaver profile image
soulsaver

The bubbling could be acid reflux which could cause aggravation to your lungs - so should put you on Omeprazole to reduce stomach acid, just in case and order lung function test, plus gastroscopy to rule out hiatus hernia and check reflux.

If you choose to wait buy ranitidine (over the counter) - no eating, alcohol or coffee after evening meal. And take the ranitidine before you go to bed, reflux is usually worse when you lie down..

Look up acid refux and apply the appropriate diet avoiding spicey, acidy, onions, garlic etc. until you know it's not the prob or you get on a PPI (omeprazole etc).

Best wishes.

MelAidJack profile image
MelAidJack in reply to soulsaver

Hi soulsaver thank you for your advice, i had said on other post sorry you must not have seen i have had xray and ct scan waiting for hospital appointment now but called into surgery and got a print out from ct scan it says Bronchiectasis with inflammatory stranding not quite sure what that means thanks Christine

MelAidJack profile image
MelAidJack

Hi everyone thank you all for your very knowledgeable insight i really appreciated it thanks again. I have called to see my GP receptionist and she kindly gave me a print out of my ct scan results its a little long winded but here goes;

unenhanced Helix from the carina to the lung bases, peripherally in the lingula segment of the left upper lobe is demonstrated bronchiectasis with some of the dilated bronchi containing fluid. minor associated parenchymal stranding. similar but less marked findings are also demonstrated in the medial segment of the right middle lobe. conclusion bronchiectasis with inflamatory stranding.

So is this a short term issue or will it get worse?

Dedalus profile image
Dedalus

Welcome to the group Christine x

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