worried

Have been told my stats have dropped and am, at a point where we need to discuss a lung transplant.My FEV WAS 27% and FVC 58%. Can anyone explain in the most basic of terms how bad this is...am scared stiff.Am 57 years of age.Am not really very good at understanding all the figures and the doctors can't or won't answer me with straightforward answers,like do you have a rough idea of my life expectancy,with or without complications.

18 Replies

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  • I can't really help, but I am very sympathetic. Your doctors should explain the results, but sometimes we find it difficult to speak up and insist on answers. You do not say what your condition is. What is it you have? And am I right in thinking that you are in Australia? If so, of course, we are only waking up so more people will be along soon. You are obviously — from the figures — not at all well and you are entitled to more help, so make an appointment, take a list of questions, and a good friend with you.

    Let us know how things go,

    Love and hugs

    Kate xxx

  • thank you Kate.

  • Hi Piping, was going to suggest you ring the BLF helpline, but then saw you are in Australia. Kate's advice is good. I hope you get answers that ease your worries a little. Jan

    Edited by me

  • thank you Jabber.

  • Hi Piping

    Sorry to hear of your troubles. I can't be of much help. There are people on this site with low numbers like you. Some waiting for transplants. Don't think you

    told us to much about yourself ,and your condition. Do you get around well?

    How long have you had copd? Its easier to help you ,if we know more about you. I'm sure you'll be getting lots of replies when members wake up. I'm

    from usa. Where are you from Piping?

    Hope you get the answers your looking

    For.

    Rubyxx 😊 😊

  • Hello Ruby..thanks for taking the time to reply.Am in Melbourne Australia.Was diagnosed about 2 years ago and my lung capacity was about 40%.To me it seems to have dropped quite rapidly.Am still able to get round relatively well..have trouble getting upstairs and walking uphill but can still do it if take rests.Am on spireva,serentide,alvesco,ventolin, prednisolone and montelukast.

  • Hi Piping, I was told I had 37% eleven years ago, now its 44% , you can improve your numbers but you have to stop smoking if you do smoke.., eat nutritious food and exercise. Ask about Pulmonary Rehab its an exercise course that helps you build up your strength.

    Be positive and believe in yourself and your ability to improve those numbers, good luck, huff xxx

  • Thank you Huff!

  • Hi piping a lung function of 27% is very low and not good. This means that you have very severe copd (I presume it is copd?). No one can give you a rough idea of life expectancy as it varies so much with everyone. Don't forget this is 27% of the average for your age, weight, height etc. and not 27% of 100%. That's the bad news. Also your lung function naturally declines a bit with age as well.

    The good news is that the lowest lung function you can survive with is 6% so you have 21% in reserve. You might find it stays at 27% or it might go up a bit too depending on your lifestyle. You need to look after yourself and deal with any exacerbations straight away as these can further damage your lungs. Any other health conditions can impact on it too.

    There are a number of folk on here with similar and even lower FEV1's and they have been going for many years at their level. I know of 1 member with a lung function of 14% who was told they were going to peg it within 3 years but they are still here 8 years later and still finding some quality of life.

    More good news is that you are being considered for a lung transplant. Not everyone is suitable and I really hope you are. x

  • Hi, I wish I could help but I cannot.

    Huffer's reply was a good one. Have you done the Pulmonary Rehabilitation- PR - course? Perhaps they call it something else in Oz. It has helped so many improve their fev. & day to day lives.

    perhaps you are able to call the help line for guidance 00 44 3000 030 555 might work although they wouldn't be able to ring you back as BLF is a charity. I believe they do an email service now so please try it.

    Wishing you the very best for the future & with the lung transplant assessment.

    Peege

  • Peege...thank you for taking the time to answer and for your good advice.For a long time they thought was made worse by asthma but it doen't now seem to be the case.

    Piping

  • coughalot...thank u soo much for ur reply.It has given me a bit of hope .Just felt soo bombarded with all these figures and options I felt overloaded and just not prepared for those sort of results and was I guess overwhelmed coz there were a lot of questions I wanted to ask that did not think of till later.thank u for taking the time to reply.

    piping

  • hi piping

    know one can say what life expectancy is, my fev1 is 18% has been same for a year. I still work but only part time now. its all about learning your limits and pacing yourself, you will find theres things you cant do, but also find out what you can do and control it. ask about getting on pulmonary rehab that does help a lot.

    tam

  • Thank you Tam.

  • Hi Piping

    My FEV is 14%! I am 65 and have severe COPD. I am on oxygen and take the usual inhalers except for ventolin which made my pulse race and ankles swell. I manage to get around. Obviously can't walk very far but I do exercise; a little basic yoga and lift 2 kg weights. Have not been offered a lung transplant, probably because of my age. However, there is a procedure called 'coils or valves surgery that involves sectioning off the bad lung parts to facilitate easier breathing. It does have quite a high success rate. It is only done on patients with severe COPD and you have to have a minimum of 20% FEV which you have. I am not sure if this procedure is done in Australia but you can always ask your Lung Specialist. Try to stay positive. If I can still get around and look after myself with my FEV, you have a good chance of surviving for many years to come.

    Look after yourself.

    Malinka

  • Malinka...thank you so much for replying...it was really encouraging!

    Piping

  • Hi Piping,doctors will not give you your life expectancy because they simply don,t know.Copd is a very individual condition and so many things can make a difference.Try to be as positive as you can,I found that helps a lot.I have very severe emphysema,Fev1 20%,I forget what they said my lung age is,about 40 older than me I think.I actually improved a bit this last year and now await LVRS.You and your doctors can control your illness so stop worrying,relax and try to enjoy what you have.When the blues hit me I look at those who are so much worse off than I am,there,s plenty of them.Best of luck,D.

  • Thanks D!