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Emphysema at 33 😢

Posted , 13 users are following.

jodie49479
jodie49479

Hi I've just been diagnosed with Emphysema and I turned 33 only 2 weeks ago. Pretty young eh? I don't smoke cigs but been on the e cig for 5 years. Before the e cig I wasn't a heavy smoker just 5 a day. I can only assume it's the vapour from the ecig?

I have no idea how to feel about this diagnosis as I was sent it in a letter from the respiratory surgeon at the hospital after review of my CT scan results. I'm a bit upset with it as I've no idea what stage I'm at and the only thing it said in my letter is I'm going back in 6 months to have another scan!

I'm a single mummy with 2 young children so this is very scary for me. Is my life expectancy shorter now? I don't usually have noticeable symptoms however my chest is very bad at the moment and I do struggle to breath.

I'm off to the Drs today to get patches to help me come off the ecig.

Any comments on this will help my scared and confused head. 😢

1 like, 25 replies

25 Replies

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  • john80670
    john80670 jodie49479

    Posted

    Hi i am new to Emphysema only found mine after a routine ct scan, first thing you need to do is get your doctor to do a Spirometry test, then you can come back here and use the checker https://patient.info/doctor/spirometry-calculator

    Because i am new i don't know much but i do that everyone says do has much exercise as you can. Please read some threads on here while you wait for a reply by someone who knows a lot more than me. I am sorry you got this so young it is scary when you first find out but people on here are great and will answer your questions.

  • gbhall
    gbhall jodie49479

    Posted

    To Jodie and John

    There are at least two regular lady posters, Vee2 and Hypercat who are both sufferers and spend a lot of time helping and supporting others. They probably both have more experience than many pulmonary specialists. They deserve medals, but follwing their posts and contributions to other's posts is an education in itself.

    I advise you to discover how this site allows you to follow their contributions.

  • Vee2
    Vee2 jodie49479

    Posted

    Hi Jodie, you are very lung for a diagnosis, there are many things that can cause lung damage leading to a diagnosis of COPD

    Its high unusual in the UK to get a diagnosis from the hospital in the form of a letter, usually CT scan results are discussed with patients in person.

    However in your case, at your young age, I would be asking your GP for a alpha1 antitrypsin deficiency test.  Just search those words followed by the country you reside in for further details.

    patient uk info here:  https://patient.info/doctor/alpha-1-antitrypsin-deficiency-pro

    Also exposure to other lung irritants can cause lung damage.

    Your doctor should have a copy of the letter, test results from the hospital and possibly indications on whether your lung damage is mild, moderate or severe.  the good news is if you are in the mild to moderate area there is much you can do to preserve lung health and live to a ripe old age.

    Please do view my other comments, PR and looking after lung health etc.

    https://patient.info/forums/discuss/tips-know-the-difference-478568

    Any further reading you do on the internet, be selective of the information, ie in UK we would opt for sites like NHS, NICE, BLF (British Lung Foundation) patient UK. . gov sites etc.

    • Vee2
      Vee2

      Posted

      apologies that should read

      Hi Jodie, you are very young for a diagnosis.....

      Its highly unusual ....

    • jodie49479
      jodie49479 Vee2

      Posted

      Thank you so much for your reply. I've been to see my GP tonight for the first time since receiving the news. My GP confirmed the Alpha 1 test has been done however the results were not present on her screen so I need to wait until tomorrow now to see what's happened to it.

      I've also received a further hospital letter today with an appointment for lung function tests. I assume this will be to see what stage I am at? Like you said... Let's pray for mild/moderate which I think will be the outcome.

      I also have a current infection which isn't helping the situation and I am on anti biotics for this. My scan showed 2 white sack areas one large which is the infection and the other smaller which they say is the trapped air? (Emphysema) ... Also a large black area suggesting permanent damage. All on the left lung. This all doesn't make sense to me yet but I'm learning so your comments are very welcome. Thanks again for your help 😊

      So just a waiting game now to get the Alpha results and

    • Vee2
      Vee2 jodie49479

      Posted

      Hi Jodie,  when you have a lung infection things seem so much more difficult with the breathing and energy levels, but these come right / improve once infection has cleared, its important to treat infections asap and also to be sure to finish your course of treatment.  If after medicine course finished and if you don't feel you have cleared the infection you need to go back straight away to the GP for more medicine and have your sputum tested to be sure the correct anti biotic is prescribed to clear any infection.

      The lungs show shadows when there is a lung infection also and these can clear up when the lung infection does.

      Probably they mean by trapped air that the aveoli sacks in the lungs are stretched, this happens in emphysema and it becomes more difficult to empty the lungs of cabon dioxide completely which means breathing in oxygen to fill all the lung sacks (alveoli) is more difficult hence shortness of breath.

      The lung function tests are not normally carried out when the patient has a lung infection so hopefully when the appointment comes around your lungs will be clear of infection and you will be able to give a more accurate lung function reading.

      Glad the doc has done the alpha 1 test, just keep fingers crossed its not that, but either way good to know so you will get the proper treatment and also other members of your family should be tested if you do have it, ie your siblings and children.

      Keeping everything crossed for you.  Keep in touch 

      Best wishes V

    • jodie49479
      jodie49479 Vee2

      Posted

      Thanks so much Vee2 I really do appreciate all your advice on this.

      I will update you on the Alpha results and the spirometry test on 12 October.

    • jodie49479
      jodie49479 Vee2

      Posted

      Hi Vee2

      Just an update on my condition. The Alpha 1 test unfortunately shows that I am a carrier.

      I'm not in a very nice place at the moment my heads all over the place. I'm having my children tested this week. There's a strong chance I've passed it on is that right?

      I have my lung function tests tomorrow to see the damage to my lungs. I'm not expecting great results.

      I no there are lots of treatment options to prolong the emphysema but is there any point if I am an Alpha carrier????

      I have so many questions but my GP doesn't seem to know enough about it all

    • Vee2
      Vee2 jodie49479

      Posted

      If you have been diagnosed with Alpha 1 (its genetic / hereditary) by now you should have been referred to a specialist and I expect after 4 years you will be far more aware of what it is and how to manage symptoms.

      Any one reading this going through similar best to contact the Alpha1 organisation in the country you reside.

  • breathless
    breathless jodie49479

    Posted

    Wow.  I have never heard of anyone ever coming down with Emphysema at age 33 from e cig.  Were you vaping the oil or just the eblue's.  At any rate any of them are bad for you.  So....don't use the patches honestly.  You have been given a diagnosis that you must just throw the things away and walk forward.  Personally here is what I would do.  I would go to a Pulmonologist.  A CT scan is not going to tell everything, you may perhaps have scarring from pneumonia or bronchitis????  Asthma is another misdiagnosed lung problem.  So with that being said, don't be frightened.  (I was diagnosed in May after 47 years of smoking and being on vapors) so get back to the doctor..  Get a pulmonologist let them do the spirometry test, then if necessary let them do a saline wash take some clippings while in there.  Let them do a ct scan with contrast.  Something just does not sound right.  I have never ever heard of this and as an old Hospice advocate I have seen a lot.  Don't be frightened, doctors misdiagnose all the time.  I started out with an end stage diagnosis and after 5 weeks was changed from end stage (get your life in order ) to moderate...  Because I still walk around do not need oxygen unless I am sleeping (which I don't normally use)....I stay proactive, come and go as I please and don't even carry the inhalers because they are prescribed for once in the morning and 2 kinds at night.  I am personally taking myself off some of this stuff because I find it completely unncessary.  I don't need all of it and it's put over 35 pounds on me.  NO Way.  I quit the smoking and have never had another one.  I would rather breath than to write my own toe tag...so I just got it in my head, I don't go in places where smoking is going on and I keep my innoculations for pneumonia, pneumoccal pneumonia, flu and other brochial infections (I keep Tamiflu and antibiotics on hand or in my purse if we are going on vacation)  I have a nebulizer which does not require electrical outlets, and I have outlets in my car if I need to carry the larger one.  So, keep your hands off stuff that people touch, make people take their shoes off before entering your home (shoes and feet carry more germs than anything) if they don't want to follow your rules then so be it....they can walk away.  Just get your diagnosis correct, see what stage the pulmonologist sets you at, and he can't do that until he does these tests spirometry (the enclosed testing of blowing out and sucking in while in a tube that is enclosed with no other air movement, just what you are breathing)....then sit back and turn your phone camera on and see what they have to tell you.  I video all my appointments and keep a folder full of each and every vaccine, medication, allergies, and diagnoses with me....It helps other doctors and saves your breath from repeating every single thing.  That way you don't forget one thing.  Just hang on, it sounds as if you have just been stupidly frightened and that angers me.  You have a long life awaiting you and you need to just take this step by step.  Do not be afraid, we are all here to help you if in fact this is COPD/Emphesema.  Always remember there is no such thing as a Stupid Question unless it is UnAsked.  God Speed.  Breathless.

     

    • jodie49479
      jodie49479 breathless

      Posted

      This is such a good response thank you for taking the time to write this I really appreciate it. I'm having the spirometry on 12 October so I guess I take it from there?

      A lot of people even my Gp has said how unusual it is for me at 33 to have this and so it seems to be pointing at being generic if I do have it.

      I will be extremely annoyed if they have misdiagnosed as understandably me and my family have all been very upset about it all.

      I will keep you updated on this as soon as I've had the test.

      Thank you again I find everyone so very kind and helpful in this sight I'm so glad I joined!!! X

  • BoJonJovi
    BoJonJovi jodie49479

    Posted

    You should be tested for Alpha-1 Antitrypsin deficiency. You should also know that you can test normal and still have the deficiency. You need to find someone who specializes in it as you general practitioner or pulmonary doc will give you a blood test, say it is normal and stick a fork in it. You can test normal and the protein misfolds or you can lack an enzyme to metabolize it. See a specialist in Alpha-1 antitrypsin. 
  • margaret26238
    margaret26238 jodie49479

    Posted

    This worries me as i depend on the e-cigs now and have done for 3years since was told i had COPD I WOULD not like to think that the vapour was also making things worse for me my doc asked if i smoked i said no i wont again but do use e-cigs he said well there is no tar or stuff to clog the lungs up so that is ok and i told my family as they never liked the vapour. I do enjoy the e-cigs and thought was one of healths great things to help so many people never get lung problems again. Do you know if there is any way of showing if vapour does harm us and did you ask your doctor what he thought
    • jodie49479
      jodie49479 margaret26238

      Posted

      Hi Margaret

      We can't be sure if it is the e cig but I haven't smoked for over 5 years now and even when I did, it was only 5 a day so I wasn't a heavy smoker at all! I have however smoked the e cig quite heavily for 5 years so for me, this could be the cause unless it's generic.

      I am waiting for my Alpha 1 results to come back to let me know if it is generic.

      I wouldn't worry too much about the e cig ... I am no expert on this matter however my GP did advise I need to come off it immediately which does suggest it's making some sort of contribution.

      I would speak to your GP if you are worried or maybe others on here can help. Vee2 is very good on here and a couple of others have given me really good replies so maybe they will also know more than me.

      Hope I helped a bit

      Thanks

    • breathless
      breathless margaret26238

      Posted

      Margaret. If you can smell it, inhale it, or has any dust in off, you need to stay away from it.  Personally I used ecigs as well for 4 years, and my doctors said an absolute NO...nothing no Vaping, no ecigs nothing that went into my lungs.  As of this writing, I know of 4 funerals of very young people that the lungs were so coated with powder (supposedly water vapors) and oils from the caping that the doctors said smoking would have been healthier for them.  That's pitiful but the tobacco industry makes a mockery of our lives, by getting us dependent on something else with nicotine, and believe me the ecigs do have nicotine in them.  So be careful and get off of them before you have more damage.  You have got to be an advocate for yourself.  The FDA even though they want to control this industry has yet to do so, therefore many of the tobacco companies have switched from making cigs to making ecigs and vap oils.  Just be careful...Breathless....your lungs are worth more than a little nicotine in whatever form...Just get off the stuff.  I don't intake anything that is going to possibly make me sick including getting out on extra warm days, getting in high traffic areas, or public places with a lot of people.  It's just not worth it.  Food for thought.  Good luck.

    • margaret26238
      margaret26238 breathless

      Posted

      OH GOD guess i wanted to believe they were okay as i now so depend on them, not they have much nicotine in the ones i use 6mg, i think it must just be the soothing effect after 40 years smoking. Felt great not smoking cigs now as my family always sd i wouldnt and now this, even if i used the ones with no nicotine i thought right at least wd get the vapour to perhaps have the same effect for me but now theres the worry of that,  i do think you are right just wish it wasnt tho.

      Thank you

      Margaret

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