Hi to all I am a 46 year old male with emphysema and this is the first time I have ever joined a blog

[merrydown]

I have been unwell for many years just going to have an operation when I found out I had chest problems, just need someone to talk to as it is getting me down and the operation is now cancelled need help with getting financial support, thanks.

[kimmy59]

Hello and welcome

You've come to the right place for a chat, everyone is very nice here with a wealth of information your not alone we all understand how your feeling. You don't say what level your are I'm severe diagnosed about 18 months, do you still work. I would give the help line a call they can advice you on financial and medical they're brilliant. Just pop in when you have a problem or just want to chat there's always someone around.

Kim xxx

[merrydown]

Hi Kim thanks for replying to me I feel better already

I have lost 60 percent of my lung function and have Pancreatitas and was going to have a pancreatectomy but they can't do it now so it looks like 50 + pills a day now for good

[kimmy59]

That sounds awful for you, I don't know anything about pancreatitis I'm afraid how does that effect you. I only have a very low lung function have you done Pulmonary Rehab course, it made so much difference to me. I struggle sometimes like I've got an infection at the moment, but normally I exercise half a day I use oxygen for exercise and have1/2 lt for 16 hours over night.

Kim xxx

[merrydown in reply to kimmy59]

How do I go about getting oxygen I need it as my sats are low

[Hidden in reply to merrydown]

You need to check / discuss this with your doctor, this way you can get your arterial blood gas checked and if oxygen is required you will be sure of getting the prescribed dose tailored to suit your needs.

[Hidden]

Hi merrydown, welcome here. There is usually always someone around to chat whenever you feel like doing.

So sorry to hear of your disappointment with having the pancreatectomy op cancelled.

Regarding benefits, do give the helpline a call tomorrow for advice on this. The helpline is open normal week days between 10 am and 5pm, telephone [phone].

Best wishes BC

[kimmy59]

Oxygen has to be prescribed normally by a respiratory nurse, when I went on my PR course at the assessment they said I needed to use it to help exercise better and protect my other organs. Go to your GP and ask him to send you on one, now I've been I can go straight to the Community Team if I feel ill rather then going to my GP

Kim

[Hidden]

Hi and welcome is all ways nice seeing new posts / members

Not much a can ad that as not already been said

Cheers all the best

[Hidden in reply to Hidden]

Me, too! Welcome Merrydown

[Bliss2]

Welcome merrydown theres lots of people on here that can help you also the BLF give them a ring lol xx

[Puffthemagicdragon]

Hello and welcome merrydown. I was diagnosed 2 years ago with very severe emphysema. I'm on 1/2 l/min oxygen for 15 hours; I still do the part time job I was doing before being diagnosed. No change in my condition since being diagnosed. Feel free to chat and ask questions. We may not be professionals but there's a wealth of experience on here.

[Hidden]

Welcome merrydown, sure you will learn so much from this site as I have done and many others . The mixture of health information and light hearted chatter and humor help. Joyce

[Hidden]

Hi Merrydown - How miserable for you. Just in your short blog you sound as if you have a lot to cope with at the moment. I care for my husband who has severe CODP his lung function is about 27%. The best advise I could give you is to ring the helpline - the will be able to give you some professional advise on what is the best course of action and how to get oxygen prescribed.

My husband was given oxygen for exercise when he attended the assessment for pulmonary rehab. Do you have a respiratory nurse or team or consultant?

I am sorry that you are so ill but I am sure you will get lots of support on here. Take good care and try to stay positive. TAD xx

[Mocarey]

Avery warm welcome merrydown!

[peege]

Hi merrydown and welcome to this site, you've come to the best place for support and knowledge to help you understand and improve your condition.

As the others say, the helpline have experts to give you information about benefits, do give them a call and let us know how you get on - it'll help others too.

I joined in March and have learnt so much from the kind people here when I thought my life, as I knew it was over.

There is much you can do to improve, especially if you get the right medical support. Again, the helpline will advise on how to go about that and the right questions to ask of medics.

The best single thing you can do is to stay off the fags.

Another is to get on a Pulmonary Rehab course asap. You will learn breathing techniques, strengthening exercises and lots of information about your condition and how to manage it.

Personally, I'm only mild and I don't even know what I have yet (apart from asthma) but from being here, the pulmonary rehab (PR), exercise, maintaining a healthy-weight, eating & drinking the right things, recognising the signs of infection I'm looking forward to a full, healthy-ish and happy life.

I wish you all the best. Just come on here and ask all the questions you need to. peeg

[Dumba]

Hi merrydown, I am sure you will get all the help you need from the helpline, and hope you feel a bit better soon. It is hard at first but it will get better!.

[KingoftheCocktails]

Nice to hear from you merrydown

KOTC

Your daily humour tonic

[appyalison]

Hi merry down, welcome. Sorry to hear abut the cancelled operation. Lots of good advice above. I think it was April when i joined, confused and upset. However, there is a lot of knowledge and support here. If you are having a bad day there is always someone to talk to. We all have bad days. We have fun and wise words in here. Press the red balloon for BLF helpline number and give them a ring. Let us know how you get on. Alison

[rick1]

Good to meet you merrydown, ask your g.p. to be referred to a lung specialist.

[skinnylizzy59]

Hi Merrydown, welcome to the blog. All the above advice is good. Do contact the BLF for help and advice. Do you go to a Breathe Easy Group? People there will have a wealth of information and help. Good Luck. Liz.

[longlungs]

hiya Merrydown wecome to this excellent site the people on here are so understanding a wealth of information and experience with a good helping of great humour.so sorry to hear your surgery cancelled,you certainly have a lot to get your head round at the mo,50+ tablets aday wow one good thing your never be dehydrated having to swallow all of them lol. Jane xx

[katieoxo60]

Hi merrydown, welcome to the site. You can sure have a fancy cocktail with all them drugs, but joking aside pancreatic illness is bad in it's self but with the emphysema too you must feel awful some days, Sorry they cancelled your op it would no doubt of made you feel better once you recovered from the op and maybe a reduction in pills, but guess it wasn't to be. You will find support, chat ect on here and we hope you have fun onthe site too. BLF will help with benefit advice but many of us know the rules too having been that way ourselves so don't be afraid to put a question on the site, best wishes

[Offcut]

Welcome and do join in there always something to chat about. I claimed ESA and after a few holes to fall in, I got support ESA

Be Well

Phill

[cofdrop-UK]

A very warm welcome to you merrydown

cx

[Dedalus]

Warm welcome from me too - this site has helped/helps me so much and I'm sure you'll benefit too. There really is a wealth of invaluable information and wonderful warm people to reach out to.

Hope you get the information you need from here and the BLF helpline and feel better soon.

Best wishes

[silversurfer]

Welcome merrydown I have also only just been diagnosed, joined here a few weeks ago and am so glad I did. I feel much better knowing there are people here who know how I feel

[Hidden]

Welcome merry down,oh gosh you do have a lot to cope with,emphysema is hard enough,but with pancreatitis on top of it,that is awful for you,& so uncomfortable.

It must have been hard having the operation cancelled,will they go ahead later,when they sort out the lung problem?

The wonderful people here,will put you on the right track re.financial issues etc,please heed there advice.You will always find support here,

Love Wendells xxx

[mollymoomoo]

hi merrydown its great to see more and more people turning to this brilliant site you will always find help on here were a good bunch lol