Hello there; I'm a 'newbe'. I go by t... - Lung Conditions C...

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Hello there; I'm a 'newbe'. I go by the name of Ritson16.

23 Replies

I was diagnosed with COPD last year and am still coming to terms with the effect it has had on my life so far. I'm not sure I'm getting enough support from my doctors therefore  I would  appreciate any relevant information you care to pass on. 

23 Replies
Damon1864 profile image
Damon1864Volunteer

hi, nice to nee you, yes its hard to come to terms with it,but you will get there. I was diagnosed in. 2007, so I have learnt to live with it. Anything I can help with please ask. Hope you have a good day,and remember we are all here for each other.😊 xxx

in reply to Damon1864

Hi Damon 1864, Thank you for being the first person to welcome me to your group. I'm not sure how this forum works (never been on one before), I take it I can answer individual people like yourself and only you receive it, but if I want to address the rest of the group I write a post? Am I on the right track here? I have received so many replies I was truly touched due to the welcome I've received, but to be honest it is so daunting because I am not familiar with most of what I've been informed about! I sincerely hope your day goes well. Rita😊

velvet55 profile image
velvet55 in reply to

Hello Rita and welcome 🌷🌷🌷

The members on here are very knowledgeable, just fire away 24/7 and someone will be along to help you.

There are two ways...a post will reach all of us, and so will the replies.

If you want a private chat with someone, that only you and they will see, the easiest way is to click on their avitar (photo)

It will see their profile and there is a message  box.

Click on that, write your message, press submit, and only the two of you see it.

When you receive a private reply you can pick it up by clicking on the little bell symbol at the top of the page.

Remember you have to give a title otherwise it won't send.

Lock your posts otherwise many members will not reply.

When you write a post before you submit there are two options,

Everyone which is the default setting or community only, which is the one to select.

You will see posts that have been locked as they have a little padlock symbol next to the title.

Only members of this site should be allowed to see it.

I know l've rambled on...it's dead easy, it won't take you long to pick it up...honest 😂😂

Good luck

Velvet xx

in reply to velvet55

Thanks so much for the info Velvet. I'm sure I'll pick it up as I go along. I've just booked a routine appointment for a consultation with my GP about the care package I feel I should be getting; plus one or two other issues I've picked up from you all. Unfortunately because it's not an emergency appointment I can't get into to see him until April 14th!

 I feel the list I wish to discuss with him will grow considerably before then😀. 

Thanks for caring,

 Rita 👍😊

Tee1008 profile image
Tee1008

Hello Ritson 16, nice to meet you.  There are members with a variety of lung problems on the forum, ask any questions and, hopefully, someone will be able to answer you.

Tee x

hufferpuffer profile image
hufferpuffer

Hello Ritson, welcome to the site 😁 There's a mine of information here and you can browse through older posts full of advice and links. You can also phone the BLF nurses if you are worried about anything and need to chat.Hope you had a good Easter,huff xxx

y_not profile image
y_not

Hi Ritson.

Welcome to our happy little world - so good it takes your breath away! 😁

rubyred777 profile image
rubyred777

Welcome to the site Ritson 16 . You will be amazed how much you'll learn from these knowledgeable, caring people.  They teach you, its not the end of the world. Theres fun to be had! Copd will not rule your world. If you can fill us in more on your diagnosis,  we'll be better able to help you, with your questions.      Rubyxx 😊

peege profile image
peege

Hi, welcome.

It's a bit quiet at the moment due to holidays here in UK.

You will get to know the forum and where to find information. For IE if you look through the posts of last couple of days you'll find a reply I put up about the facts of COPD.

Or you can put COPD in the search bar and loads of old posts, replies and information will come up. 

There is SO very much to learn and knowledge is the key. Most people here with copd will say they control it rather than copd controlling them.

You can make a huge difference to your life with some changes. We have to be proactive for ourselves. Learn as much as you can so you can tell the doctors what you want. Take control.

All the best. P

grannyjan profile image
grannyjan

Hi welcome to the site, plenty to keep you informed, plenty of laughs and a place to rant or moan, we don't judge, as we all have our off days. Enjoy. :-)  janx

I'm sorry I haven't acknowledged your grateful replies before now, but 'sods law' kicked in and I was unable to access my emails! My biggest concern is how to define a 'flare up' and know when to start taking a course of antibiotics. Last week I coughed so violently I lost my voice for 4 days which was frightening. I did eventually start taking a course of antibiotics but it's the 'when' to start that I'm not sure of. When I asked the practice nurse she said, 'you'll know'; but unfortunately I don't! any advice will go a long way I sure you. I do intend to read through past posts at some point; thanks for the tip. Thanks again for the welcome 😊

stone-UK profile image
stone-UK in reply to

Hi

Antibiotics for infection. Steroids for breathing.

It stems from what you consider to be your normal. In terrms of mucus Colour. Considerable darker could mean infection start antibiotics.

Similar with breathlessness if it worsens for unknown reason with no signs of returning to normal start steroids.

If you have contact details contact your respitory nurse for support and advice. Or phone 111 for advice

If you have a home rescue pack they should have given you a management plan,which explains what to do.

peege profile image
peege in reply to

The following is taken from an old post. I typed 'when to take emergency meds' in the search bar above right & this is one of the things that came up. Hope the link works. P

"For those who are prescribed an emergency pack of ABs and steroid tablets so they can self medicate in emergency situations when a lung infection starts.

Mostly doctors give instruction how and when to use the medicine when the pack is prescribed. Generally this is called a 'suggested action plan' specifically for the individual patient.

If you were not issued with an action plan or if you have mislaid yours the following pdf document link about the COPD self management action plan from GPIAG, is below.

lothianrespiratorymcn.scot....

A guide to help you decide when you should start your ABs or steroids. Check with your doctor for your personalised plan.

If I can I usually get my lungs checked with a doc before starting my pack, just to confirm my suspicions as I would hate to take these meds if I can avoid doing so. But if there is a need its important for us to act quickly. To have the emergency pack at home is very helpful for those times such as long bank holiday weekends and the Christmas period for those times you can't get to see a doctor quickly.

We usually identify a lung infection by a worsening of symptoms, generally it involves more than one symptom; feeling more tired than usual, breathing more difficult than usual, coughing more, mucus has changed colour to yellow green, inflamed feeling in lungs, pain in chest etc.

If at end of the course, I feel its always best to visit the doctor to get lungs checked again to be sure the infection has cleared and if it hasn't another course of meds can be prescribed or your emergency pack supply replenished.

Hope you find the pdf document link above of use."

diesel12 profile image
diesel12 in reply to

I was only asking this question myself a couple of weeks ago. It's odd as before I had my rescue pack I would go along to thee Dr or nurse and say " I think I've got another chest infection" and I'd be right but now I have the meds I dither I'm just not sure if to take them or not however I started them then saw the nurse and I was right to start. The nurse is right when she says you'll know but it just seems like a lot of responsibility but we have to learn to control this ourselves and not let COPD control us.

I'd suggest following what the other say about feeling "off" coughing etc and start your meds but if you're not sure pop in and double check with your nurse. It'll make you more confident with your own judgement.

Oh! Welcome to the site, I'm new here too :) x

tbeth profile image
tbeth

Hello and welcome!

SquirrelsHolt profile image
SquirrelsHolt

Welcome Ritson16. Lots of questions you can get answers to on this wonderful site. One word of advice would be, not to "google" too much as it can be rather upsetting. Far better to ask on here or ring the BLF Helpline. Obviously your own Doctor is usually the best person but then again,so many of us feel our own Doctors don't know as much as the folk here. Welcome again and what a super photo!

Sheilab123 profile image
Sheilab123

Just wanted to welcome you Ritson, some of the others have given you good advice, and more will be along! Brilliant site for help, sympathy and humour! Love the pic. xx

onamission profile image
onamission

Hi Ritson and welcome to this site we are all friendly and hear to help each other. I was diagnosed at 42 that was 11 years ago I gave up smoking and took up swimming its important you stay as fit as you can so that when you get a chest infection you can fight it better.

Your GP should give you antibiotics and steroids to keep at home and a action plan so you know when to take them. 

Titchy52 profile image
Titchy52

Hi riston its s lovely pic of u I've also got copd diagnosed in 2012 it takes a while to sink in welcome to the club their all great and caring group of people who will help u settle in PS and their very funny too lol x

in reply to Titchy52

Thank you for the welcome Titchy52; and thank you for your kind remarks about the picture; it was taken last year whilst on holiday, on a very good day I sure you! I've been overwhelmed with the kindness already shown to me and picked up on so many things I know nothing about. The most important is the full care package I've never been informed about by my GP. I intend to make an appointment ASAP to correct this. I hope your day goes well 😊

Titchy52 profile image
Titchy52 in reply to

Your welcome riston I didn't get mine until last year but it's good to have as soon as I start mine I was told to ring up for them to send another script dwn my chemist ready for next time hope your visit goes well take care Kathy x

katieoxo60 profile image
katieoxo60

Hi Rita, welcome to the forum, glad to see you got a warm welcome. Hope to see you again soon. I have COPD since 2009 plus other health issues, and I still struggle sometimes to accept the situation, but you will get to learn how to manage your illness given time.

Sherry44 profile image
Sherry44

Welcome Ritson.  COPD is a very strange illness.  When I was first diagnosed nearly 4 years ago I got to wondering how much longer I had to live, but I'm still here and on the whole keep reasonably well with the help of the yearly flu jab.  Sometimes the energy is there and you can most things.  Another day you have to push yourself to do anything.  That's how it goes. 

Good luck and get on to this site whenever you feel like it as there is always some knowledgable person who can help.

Best wishes

Ann

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