Post emphysema diagnosis.

[dvbruno]

Hey there everyone! I'm 21 years old and just go diagnosed of emphysema. I stumbled upon this site and as I read through the posts and replies I felt that this was the right place for me to ask and get guided on what to do. Now my question is do I still have a lot of years to live? Currently I'm doing good! Can I expect a long life ahead of me? Please help me!

[cales]

First of all can I say welcome to the group .................I would say most definitely YES I pretty much asked the same question when I was first diagnosed 5 years ago with a few lifestyle changes and correct medication you will live a long and happy life with a few ups and downs along the way ,we are all different in how we react to things but generally its about helping yourself ........ Your very young to have this disease and I can understand how concerned you might be , this site is amazing with the loveliest people and I am sure that you will get lots more advice and support from others that are very well informed and offer the right amount of support that you are looking

Take care

Cales x

[Annie2003]

Hi there , i don't know an awful lot as fairly new myself , but everyone here has been so helpful they'll definatley have answers for you .

Take care and welcome x

[Ergendl]

Welcome, dvbruno .

[Katinka46]

Morning dvbruno

Welcome to this brilliant forum. But --- big but coming up ---- you are very young to have Emphysema. Do you have Alpha1-Anti-Tripsin-Deficiency? (Just impressed myself with getting that down, more or less right.). You must have been tested for that? If that has been ruled out then there must have been something that damaged your lungs? Toxic gases, fumes, or were you smoking forty a day from three months old? Who diagnosed it and how was that done? Sorry about the interrogation but there are some conditions that masquerade as emphysema.

Would love to hear a little more of your story.

[dvbruno in reply to Katinka46]

I was a smoker before. Smoked for about 7 or 6 years but I only smoked about 20 sticks a day. I was diagnosed through a chest x-ray. Is there a possibility that there may have been an error in my chest x-ray?

[Katinka46 in reply to dvbruno]

I can't diagnose and I really don't know enough about emphysema to help much, but to be honest in my case there have been some scans that have not been well interpreted. And that's an understatement. Do you have a good enough relationship with your doctor to politely probe and possibly suggest a second opinion from another radiologist?

I had to do that once and it bore fruit.

All the best

K

[guytane in reply to dvbruno]

You could have a mis diagnosis you are very young to have that try breathing exersise it will make your lungs stronger don't smoke any more you can make this a Lott better as I did I go gym work etc I am very youn 58 diagnosed 5 years ago eat lots fruit stay away from harmful substances you wil b ok

[dvbruno in reply to Katinka46]

Hey there Katinka46 sorry for the late reply. Today I just got a chest x-ray and the result was hyperaerated lungs. What does this imply?

[Stu0151]

Hi Dvbruno. Welcome.

For me with emphysema at 50 plus years of age.

I have been down many of paths looking for answers, been and listen to transplant team etc.

Then I released the the sickness was taking over my life.

I think what I am trying to say to you. You are young and strong so live your long life for you, not this illness or its takes over.

People live long lives with this illness. Being aware of your body and mind is so important. You become your own doctor because it's you body.

As time goes on for you, you learn what works for you and what doesn't.

Believe in your self and live for you.

I hope this helps. Not very good at putting what's in my head down into writing.

Take care x

[N123 in reply to Stu0151]

Well said!

[O2Trees]

Hi dvbruno - you need lots of exercise, a good diet and importantly avoiding infections like colds and flu which can turn into bacterial chest infections and cause loss of lung function. You will need to be proactive in asking people not to come near you if they are unwell, plus lots of hand washing when you come home after being out. Of course you can't avoid everything but you can cut down a lot of potential illness by being careful. And the exercise and good diet will help keep your immune system strong. Katinka66 is right to ask about A1A deficiency as this can often explain why someone so young is diagnosed with emphysema. And keep coming here with any questions you have. Take care.

[dvbruno in reply to O2Trees]

Will I live long? I really cry every night thinking that I won't be able to have a family in the future. I want to get old and have a family.

[guytane in reply to dvbruno]

Yes you can live a long life just don't smoke anymore

[Hidden]

Hi nice to meet you but sorry you find yourself on here. You are exceptionally young to have emphysema so I wonder if there is a genetic link in your family. If you haven't been given one already you need to insist your doctor does a simple blood test to see if you have the Alpha Deficiency Gene. It is quite rare but should always be tested for at your age.

Do you have close relatives with it? Stay with us on here and we will help and support you all we can. Take care.

[dvbruno in reply to Hidden]

My grandfather died of emphysema. I was also asthmatic when I was young.

[guytane in reply to dvbruno]

I have asthma and copd I live life to the full

[piping]

Welcome to this site!Take care with diet and exercise.....so important.As you will see from this site things can be pretty normal.You need to let us know what your stats are to be of the most help

[guytane]

Have you ever smoked

[dvbruno in reply to guytane]

Yes for about 6 or 7 years. I would smoke 20 or less sticks a day.

[Christabella153]

Sorry to hear you have this disease at such a young age pulmonary exercises & walking will help ask doctor if there is a pulmonary rehab course going on as it will help immensely. I was due to go on oxygen March 2015 but refused started gentle exercising, walking as much as possible, breathing exercises (singing marvelous) & sniffing Eucalyptus Oil which clears airways but can put b/p up if you have Hypertention, keeping clear of fumes, strong household liquids, anyone who smokes etc. There are a wonderful lot on here with marvelous info as for how long anyone has left to live is anyones guess but we have to do what we can to help ourselves. Also we use a lot of calories just breathing need 3.000 cals a day just breathing so eating helps also.

[dvbruno in reply to Christabella153]

Hello Christabella153! I hope you read my reply. So you haven't used oxygen?

[Christabella153 in reply to dvbruno]

No was told nearly 2 years ago would need oxygen refused use Eucalyptus Oil (put on tissue & sniff) the Chest clinic Nurse said it opens the airways. Go out ywice a week on Town Rider shopping as last winter walking became near impossible but found walking round stores pushing their shopping trolleys opend my lungs due to the way arms are out front. I know it is very difficult to walk but it is a must, exercise as much as you can, singing is also for the lungs. We can improve things but it takes a lot of effort

[Scud]

Hi DVBruno, welcome to this great site when I first joined I got lots of positive replies I have read most of the replies so there is not much more I can add apart from saying if you are a smoker then please stop straight away, when I was first diagnosed some 30 yrs ago I stopped for a while but then when I felt so much better I thought I was cured so I started smoking again BIG mistake within weeks I was so poorly again I have been stopped 18 yrs now but the damage was done I'm on oxygen now 24/7 I still have a good life I get out and about and enjoy myself but would rather be oxygen free. If you follow advise from these lovely people you will have a long and happy life. Keep in touch and let us know how you are

Love Sue

[dvbruno in reply to Scud]

WOW! You are so blessed! 30 years of survival! Godbless you more! May you have more years to go! This actually gave me strength! I'm currently doing good. I exercise everyday and do things that make me happy. I eat a lot of vegetables and fruits as well.

[peege]

Hi, you are very young to be diagnosed with emphysema - and GPs do sometimes get it wrong! Mention of copd is on my medical record but I don't actually have it.

If you haven't had the antitrypsan deficiency test yet then please ask for it, getting organised whilst young will give you the best future. If you haven't had a ct scan, ask for one. If they refuse beg borrow or steal for a private one.

Try to avoid, smoke, pollution, chemical smells, diesel fumes, & dust.

I wish you all the very best. P

[dvbruno in reply to peege]

Thank you! I'll go visit a pulmonologist! Thank you very much! Godbless! I was diagnosed through a chest x-ray! So is there a possibility it was wrong?

[O2Trees in reply to dvbruno]

Usually the first diagnosis is through lung function tests - have you had these? They will show the level of obstruction that going on in your airways. Then people often have a CT scan which shows precisely the damage to the lungs. Generally speaking it would be unusual - and I would have thought not very accurate - to be diagnosed just from a chest X-ray which would have enough detail.

[dvbruno in reply to peege]

I was diagnosed through a chest xray.

[tracyball1]

Hi you need to keep active as you possibly can, try going to the gym walking or swimming, exercise will really help your lungs, also keep away from people with colds, try to avoid getting chest infections, and lastly if you are smoking please stop x

[lKeith]

dvbruno,

At 21 you've got plenty of time to enjoy life. Some people on this forum are going on 80 years. More importantly at your age you could have lung transplants if your are a fit person.If not get fit, stay fit and keep your body strong. Outside of transplants there are other treatments for you to explore lung valves lung coils, even stem cell but unfortunately that is only done in the USA. Provided you look after yourself and eat well (good food not fast foods) you have plenty of time & oportunities.

IKeith

[Shaurene]

Hi Mate

You are very young having this. I am 76 And diagnosed 4 yrs back. At lot stems back from when i was very young in the cold damp weathers and getting bronchitis a lot. And smking, i still smoke, a lot less though but that is to many. You can go on to you are in your 70-90s if you look after your self. Stay out of smogy areas and wear a face mask in dusty, smoky areas. It cannot be cured yet but maybe a cure will come. You have a lng way to go.

Eat good, no shit like to much KFC, Macs etc. The odd ones ok. Start taking Vit D3 and K every day. It is rumered to help. Walk as much as you can and take deep breaths to stretch your lungs.

I have read a lot on this. Read up on foods that give you a good dose of Protein.

Do not get all worked up on it. You can manage it.

[MidnightCaller]

Welcome to the group. Emphysema just means aging of the lungs. Everyone will get it due to all the pollutions around. Like me you probably did not smoke. But that does not stop you getting it. I got mine from having whooping cough as a baby and living in a polluted area. I was diagnosed 4 years ago and have improved my lung age. Tips are avoid cow milk, try something like Almond or Hemp milk from your supermarket. Make sure you are getting enough of vitamin A and D. Get as much exercise as possible. If in a pollution area make sure you wear a pollution mask. I just get the pack of 2 from my local pound shop.

If you are like me, I had a lot of condemnation and stress in my life, so I started to trust God, which helps not to be so stressful. There are many other tips people can give you, so you are in the right place.

[sukee52]

Hi, I am sure all these replies will have helped you. I was diagnosed with COPD at 16 (known as chronic bronchitis then) had half my lung removed at 18, my brother was diagnosed at 40 , my dad at post mortem aged 52, my uncle at 30 and my cousin at 28, apparently nothing to do with familial problems. I am now 65 my brother is 70 , so although scary you can do this. Just do as much as you can to enjoy your life, speaking for myself I have had a wonderful life just at a slower pace than most folk. Good luck

[dvbruno in reply to sukee52]

Such good people! I really hope to have a long and healthy life!

[Maree_AU]

Hi Bruno,

Welcome!

You're only 21 and provided you look after your health by way of regular exercise and eating healthy, you should live to see those grey hairs stare back at you in the mirror

Information is power! Get advice from your gp or pulmonary specialist on the best ways for you to care for your condition you can also ask them for some reading literature.

Of course giving up the ciggies is imperative if you smoke, and then avoid breathing in 2nd hand smoke and excessive car fumes.

Good luck

[dvbruno in reply to Maree_AU]

Thank you!

[O2Trees in reply to dvbruno]

That includes BBQs and smoke from open fires and fumes from wood burners.

[Hidden]

Hi I agree that it isn't usually diagnosed from a chest x-ray. The usual test is the spirometry one so make sure you ask the nurse/doctor for one asap. This will also show your lung function (Fev1) and what stage you are at.