New to this forum-joined today 25/6/2022 - Lung Conditions C...

Lung Conditions Community Forum

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New to this forum-joined today 25/6/2022

horseygirl_0103 profile image

HI everyone

Im horseygirl_0103, & Im from south wales

I was diagnosed with lung disease in 2019 & its diffucult to come to terms with it for me especially though I was born with a healthy full set of organs

I'm on medication for it with regular hospital visits for blood tests & now & again have to do puffa tests

I'd love to share some of m experiences on this forum with people on this lovely forum & get to know people who who are in the same or similar situation as me & hear their stories

This is my lifeline & by sharing my story would help me come to terms with it,

if anyone would like to rely please feel free Id love to hear from you as I live alone & it would be nice to hear from people

71 Replies

Hi and welcome to our friendly forum horseygirl. You needn't feel alone now that you have joined us.

Thanks very much -thats very kind

Hello and welcome 😊It’s a great forum and there are lots of people with different lung conditions at different stages. We help each other through lots and it’s a really supportive and friendly place to come! We have a giggle too and I have genuinely made some really good friends here!

I have severe asthma along with a heap of other stuff (not lung related) and they seem to take it in turns in which is the most problematic at any given time…the joys!

Anyway, hope you soon feel at home here!!

Dee x

aww thanks very much dee Im sorry to hear about your conditon My doctor has also put me on 2 sprays to help me manage it in between taking the meds prescribed for me by the hospital

Welcome to the forum horseygirl_0103

Welcome! xx Moy

horseygirl_0103 profile image
horseygirl_0103 in reply to MoyB

thanking you kindly

Hello Horsey girl, and welcome. I had a single lung transplant in 2019 after being diagnosed with lung disease about four years prior. I understand what you mean when you say it's difficult to come to terms with. It definitely is a hurdle. So glad you found us. xx ❤️

Sutton5 profile image
Sutton5 in reply to Caspiana

Hi Caspiana, Has the lung improved your life do you think? I hope it has and have normality back in your life. I’m awaiting valves being put in where the bad bits are, I’m so scared. Your a brave person. X

Caspiana profile image
Caspiana in reply to Sutton5

Hello Sutton. Yes, my quality of life has improved I must say. I don't think I am brave. I was only about forty when I was diagnosed, and I certainly would have died if I had not had this transplant. It has not been easy but I am still here. Please do not be scared . Believe me when I say , thinking about it is actually worse than the actual procedure. It will be okay. xx 🙋🐕💕

wow Ive been trying to get my doctor to put my ame on the lsit for a lung transplant for ages & she always says no & says Im not ready

Well it is quite a tricky thing Horseygirl. You see lung transplantation is really a treatment when everything else has failed. It is not a cure. It is best (if you are managing) not to rush into this option until they think you are at the end of ALL your options. The transplant does not always go as planned and there can be complications. The drugs required post transplant are really brutal on the other organs especially the kidneys. Many transplant patients (not just lungs but any organ) will experience kidney disease and many of us end up needing kidney transplant after a few years. There are restrictions and complications along with a strict diet and exercise regime and a while lot of discipline when it comes to medication. For most of us it is worth it. I would trust your doctors they will go by your tests and condition to consider when to refer you for testing for transplant but not till you are ready. xx 😊

yes i trust them implicitly

Welcome to the forum horseygirl_0103 - people on here you will find are kind and caring.

Thanks very much for the welcome I'll enjoy being a part of it

Hello Horseygirl. Welcome to the site. I often feel that I get a lot of good information from the responses that other members make to particular posts. There are so many people at different stages in their journey and with different diagnoses all being helpful and caring.

Take care. My best wishes.

Grace

cheers grace very kind

Hello and welcome. I must admit i was so unwell befor i was diagnosed with empacemia it was a releaf to know what was going on. So acseptance of the diagnosis was fairly ok acsepting limitations on what i could phisicly do and the progretion have been much harder. I do hope you find the help you need on this forum with all the lovely friendy people on hear

Aww Thank you so very much Thats very kind of you

Welcome to the forum horseygirl .

Many thanks Cloudancer -much appreciated

You’ve come to the right place for kind, caring help and advice. A great forum full of lovely people. We’re always here for each other. Good wishes to you. Xxxx

aww thank you for your kind words sassy. Everyone here is amazing & very kind

Hi I'm from South Wales also. I was diagnosed with severe COPD in 2010 so know how frightening it is. Do not Google as the information I got was 1-3 yrs life expectancy. That was 12yrs ago and I'm still here and doing OK.

Just remember that COPD which is an umbrella for different conditions is not Terminal. Its progressive and you can control this . You will get lots of support on this forum from lovely friendly people.

We are a great bunch and also have a sense of humour so plenty of funny posts.

Best advice I can give is to be Positive and remember there is always someone worse off . Be grateful for what you can do and dont concentrate on what you cant.

Have a lovely day xxSheila 💕💕⚘

Hiya

Thanks for the positive advice yes I'll think of that I remember my chest doctor at the combined clinic said that COPD was an umbrella term so that rings a bell

From all the lovely welcomes & comments Ive received so far it seems to me you are all an amazing bunch& I feel priviledged to be part of it

Welcome! I'm sure you will find support and info here that helps. 😊

Aww Thanks very much Im sure I will

Welcome horseygirl to our friendly helpful forum ,I'm also from Wales North Wales

Thanking you kindly

Welcome to the forum I was first diagnosed with COPD back in 1990 I believe and still here to tell the tale. Any questions ask away as I am sure one of us can point you in the right direction

Thats fantastic -everyone here sounds brilliant

Welcome 🎠 we’re all here for you. I was diagnosed with Bronchiectasis and had a 2 lobe lobectomy at the age of 5. I’m still here at 72 !

Oh wow . Thats truly amazing

Hiya Horseygirl,Welcome to the funny farm!

Have they given your lung condition a name yet?

I think my doctor called it Interstitial Lung disease (something like that) - sounded like that -she spoke so quickly & by the time I asked her to repeat what she said my appointment was over so I need to email her to ask her to clarify it - theres a strict amount of time youre allowed in appointments

ive not really heard of it -Im going to research it

Hi, welcome to our friendly group, I also have COPD, diagnosed 10 to 12 years ago now, there are a lot of lovely people here with lots of great advice & support, stay positive, 😊💐 xx

wow thats a long time I will try to stay positive

Hi Horseygirl, I hope your feeling well today, I see you are from Wales, my daughter has Welsh ponies, and loves the Welsh show, she does dressage,

I am new to this also. Maybe this is my 2 nd reply. Lol.

I have Emphazema and COPD. My lung function is 21%. But I have good blood oxygen still. God knows why? Like you I was always a busy person Had 4 kids grandchild too, I was 50 last week and this year has been the ultimate worst for chest infections. Broken rib with coughing. But lucky never to had COVID. It is so scary when you cannot breathe.

Hi to everyone else.

Aww -a fellow equestrian I have been riding for 40 years I used to own a part arab who died at the age of 25 -which was quite good for that breed - but tragically ti twisted gut -He had an op for cancer of the penis & nearly died then after a years recovery & slowly riding him then 1 year later twisted gut & the vet said I should let him go & had no choice in the matter.

I love welsh ponies & all breeds ,& also love dressage & all other equestrian events

Happy birthday for last week

If I start coughing I take lemsips to subdue any coughing to give my ribs a break for a few hours Yes it is a frightening experience

Hi I’m not sure what I’m doing as of yet on replies etc. lol. That is such a shame , it’s an addiction the horses, my daughter is 19 and loves her horses, hard work though in winter when the water freezes lol. I’ve seen my daughter break her heart when one of her aunts had to go to vet. They are so calming animals.

I’m not a lover of lemsips but I could not stop hyperventilating any short distance the doc put me on 2 mg diazepam and what a difference all round my lungs don’t feel like lumps of lead, Trelogy elipta and pulmacort. For reliever. Also oramorph which gas really helped the breathing too.

Whatever helps you know yourself.

Thanks for birthday wish. 🐎

Welcome horsey girl very hard in the beginning but you will find ways around doing stuff and don’t stress about the stuff you can’t do I’m really affected by weather if it’s overcast I don’t do anything as I find it makes me worse you will know yourself what will make your life easier take care of yourself and make the most of the good days xx

Thanks for the very kind advice I will do my best to take it all into consideration

You are most welcome I have made loads of changes ie lowered the shower head raised the washing machine and the oven as I find the steam from shower very bad but lowered it to chin hight stooping another problem as it seems to block my airways it’s taken ages but anything that makes life easier take great care of yourself don’t overdue it take a rest between jobs xx

Hi Horseygirl and welcome to the site x

horseygirl_0103 profile image
horseygirl_0103 in reply to Izb1

aww cheers very kind

Hello and welcome horseygirl_0103. We are a lovely friendly group. And yes I know what you mean about coming to terms with being diagnosed with copd. I think it hits us because you realise that there's no cure for lung disease except a transplant. I was diagnosed with severe copd 3 years ago after suddenly getting short of breath. But once you start reading about people on here have lived with it for 20 years it gives you hope to carry on with hope as long as you keep active and look after yourself. Take care and keep in touch. Brian

Hi

it is difficult & more of a shock particularly when you was borm with a full set of healthy organs

Wow -people have lived with it for 20 years? -for sure it gives you a lot of hope

I requested a lung transplant form my doctor who gave it no consideration whatsoever & said no because it was her view I wasnt ready

I know my O2 levels will always dangerously drop causing me to spend time in hospital regularly

I ll do my best to keep active as & when I am able to. thanks very much

I guess it's already been suggested but ask about Pulmonary rehabilitation course which will help you and show you exercises to do. Or check on YouTube for copd exercises. Take care of yourself and keep in touch. Brian

Hi and welcome to this friendly, funny and informative forum. I have copd, asthma and thickening of the bronchi. I was diagnosed in 2016 following type 2 respiratory failure resulting in coma and mechanical ventilation. I have my first appointment re. a transplant at Harefield on Wednesday. Life has changed but I have found lots of new things to enjoy. I highly recommend a pulmonary rehabilitation course. I was horrified at first but complied and now love yoga, pilates and seated zumba.

wishing you good luckwith your first appointment

Yoga is a very calming excercise isnt it

Thankyou. I'm so glad I discovered yoga. On Fridays we stay behind for tea, coffee and a chat so I have new friends too.

aww lovely

Welcome to this forum. You'll learn a lot and get tips from other members.

I live in the states.

I was misdiagnosed that my coughing and shortness of breath was due to allergies in my late 30s. It was a hard adjustment for me and my family. Years later, I was diagnosed with asthma and Bronchiectasis (COPD with weakening of the air ways, which makes it difficult to cough up mucus). Since then, I have learned:

Be proactive. Look at your job (stress level), your environment (causes of making your illness worse). The meds that you are taking (are they helping?)

Talk to your doctor and ask questions. If he/she doesn't give you good answers, go to a different doctor.

Have your doctor try different meds, if what you are taking is not working.

Since I retired 7 (less stress) years ago, and moved to an area with better air quality, and a newly built house (no chance of hidden mold), I have been able to better manage my lung issues. I will be 73 next month and I can do what I want physically for the most part. I still get short of breath, but I feel better overall than I did years ago.

Since I retired and moved, I've not had no ER visits, hospital stays or bronchoscopies.

Hi

I cant work anymore because of my health -so jobhunting is just one stress less.I have a gooddoctor who is part of a combined clinic of rheumatology & chest medicine

I am due to go to another town as a referral to talk about some new medication

Welcome to the group ?K earn all you can from posts on here . It all helps .

thanking you kindly

Hi and welcome horseygirl. I think lung conditions are difficult to come to terms with as not as obvious as other conditions. Take care. This is a great forum with people of experience as well as wit and empathy xx

aww bless you & thank you -I love wit & empathy -all positive vibes

Hi horseygirl_0103Welcome to the site, it’s good to chat with people who know what you are going through. Feel free to chat away or just vent we are all in the same boat.

Hi

Aww thank you . I think I ll be doing more chat then vent

Welcome, You’ve joined a great forum, many knowledgeable and funny people here all with one thing in common, lung ailments. Ask any questions and share as much as you want to. No judgement here 🐞🐞

thank you so much thats comforting

Hi and welcome.

cheers . great to be hear

Hi, horseygirl. Lovely to meet you: just wish it was for another reason. I've learned so much from the members of this forum about how to live my best life despite my COPD diagnosis. I'm sure you'll be able to too.

Hello Horsey Girl (I was involved with horses too!), and welcome to the forum. You will meet some nice people, with a variety of lung conditions, often with other health issues. My lung disease is COPD, and recently, following other melanomas, they have found something on my lung which is still being discussed. My regular meds are a preventative inhaler + another one as reliever. In the event of infection I will have antibiotics, with steroids sometimes. The aim is to stabilise conditions to permit as normal a life as possible. As with much else, the team consists of the drs, the meds - and ourselves! Best🍀wishes x

Hi

Oh wow -lovely to meet another fellow equestrian

I agree with everything

Welcome horseygirl. pleas share anything you want to. The people here are great.

Thanks very much Alberta56 -so very kind

Welcome to the forum.its great to give and receive support,friends and life in general.x

Thank you Park1 Support & friends is so important in general but within a site like this its more important

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