AN eventful year

HI I was diagnosed with severe emphysema in November last year, at first I was a bit confused as I went to see the consultant with a sinus problem and suspected sarcoidosis following a chest x ray, the consultant did a cat scan and spirometry and blood tests and told me I had severe emphysema,

but just emphysema no other problems fev 98% gas transfer 41% , he told me if I didn't stop smoking I would not last long.I was very lucky in that I wasn't a heavy smoker and managed to stop quite easily, I received some good advice from the people on this site and from the BLF nurse, My main problem was fatigue I am the sole carer for my disabled wife and I work part time as a production technician in an aerospace factory( who gave me a written warning for being ill),after receiving advice from this site and reading the blogs posted here I went back to my doctor and they found that I had sleep apnea, I now have a C PAP machine and though still tired it's not as bad as it was( though I feel a bit like" Darth Vader" at night).

Again from info I picked up from this site I went to PR where I met some people who were doing what they can to manage there conditions. At first I felt a bit out of place at 53 I was younger than the others and even though my diagnosis was severe and most of them were mild/moderate they all seemed worse than me with bronchitis e.t.c. and they had all been in hospital at some point but when tested with an oxygen monitor during exercise my levels dropped to 83-85 not disastrous but worse than everyone else's, the team gave me lots of info and I feel more prepared now that I have the facts. I had my spirometry done last week and it is still more or less the same FEV 98% gas transfer dropped to 39% again not good but not too much to worry about I think, the consultant even showed my my cat scan with big black holes in what used to be my lungs.

I now know much more about COPD but info on pure emphysema is hard to find. It's been an eventful year I know that COPD is different for everybody but I would still like to know if anyone else has a similar condition.

May I wish everyone a merry Christmas and a happy new year. HAVE FUN Stay Well and BREATH EASY !

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  • I know how you feel attending PR at the age of 53 as that is my age. Its one of the few places I can go to and be the young one in the group. I dont have emphysema, my lung problem is a pulmanary fibrosis caused by a 4 month life threatening battle with pneumonia. I had a good day at breath easy today as my oxygen levels were 86 on 6 litres of oxygen just after doing 33 sit too stands in 2 minutes. It was christmas party day today so they went easy on us. I too show the lowest oxygen levels in the class after exercise but seem at simular levels to the others when at rest. I think were in a minority at the age of 53 and struggling with a serious lung condition but as long as we can live life even though its at a slower pace we must count our blessings and do our very best to maintain what we have. keep smiling Gaffers and have a Merry Christmas.

  • I'm similar to you gaffers. I'm 62 and have severe emphysema (no bronchitis ) with 27% lung function. Gas transfer 35%. I too was the fittest at PR doing twice as much as anyone else as they had other problems.

  • I too was the youngest at my PR, at 54, I have bronchi ecstasies and asthma, was in hospital with pnuemonia last year, and that has definitely made my lungs worse. When I am well I am pretty good, but having had 6/7 chest infections this year, I've spent a lot of time being ill. But I was one of the fittest people at PR, but I met some lovely older ladies and men there, and it did make me realise I had no upper body strength, so I have taken up swimming again. Wishing you all well. X x

  • Scary stuff, I am one of the older ones on here with bronch at 58 with 2 younger kids in there teens, I am a carer for my daughter who has epilepsy, after living with this for for 17 years not much time to worry about me at all... today I have spiro at 9,15, mad day at work and my son of 18 just back from Uni for Xmas has suspected glandular fever and with the youngest at 17 a bad cold next stop In Hospital for 4 days in Neurology in London just after Xmas for the New Year with my daughter, hay ho !!! that's life take it with a smile... Stay Young in the mind that's my motto..Age is just a number...

    Nurses hat on for Xmas with houseful of bugs and virus's and my young teens at 58 and a busy job in media I have no time to dwell on my ailments... keeps me positive and young though. Have a cool and Merry Xmas everyone !

  • Hi Gaffers, I am a 'young' 70 and have had diagnosed emphysema for 12 yrs but think I had it for quite a few years before that, it is now classed as severe and I am on oxygen 15/24 since last April when I was hospitalised with a bad exarbation (spelling). I did PR in the summer and found it helped a lot, not just with the excersises but with the help on use of inhalers etc. I am now waiting to see my consultant to discuss pulmonary valve placement. If you would be interested in this one of the members called johnwr has written a blog on his experiences of having this procedure done, it is very informative. I was a 20 a day smoker but gave up as soon as I was diagnosed, I think shock helps you do that!

    I hope you and your family have a Happy and breathe easy Christmas

    Carole

  • Hi what fun we are all having ,poor things I am 57 now and have been struggling to breath for about 5 years with emphysema and I have about 18% lung funshion now .I have done PR twice and found it good but depressing as like lots of us I was the youngest and that just seemed to make me feel worst .I use oxygen too move about and manage to do most things for myself evern if it takes all day .I am also very very lucky as I am on the waiting list for a new ( ok good second hand ) pair of lungs this is because I lossed my Dad to emphyseme he was 57 ,then my sister had a lung reduction op for her emphysema but still died at 57 .As my emphysema is going the same way I have been offered this wonderful gift ,

    I hope everone has a well christmas with no health problems ,as for me I so hope to be sitting in Papworth that all I want for xmas lungs take care jackie

  • Blimey, gaffers, "just emphysema no other problems fev 98% gas transfer 41%" made interesting reading for me . . . I was told I had "moderate" emphysema with "mild" COPD with fev1 of 82% and gas transfer of 41% by the Royal Brompton, when I was the same age as you four years ago.

    I'm a bit of a demon for looking stuff up, so I do have some info on emphysema, but it is tech medical stuff. You do have to search, and you have to be careful not to generalise, or get depressed. I watched my grandfather with it, so I'm quite a realist, and just like to know the facts. If I can forward anything, let me know.

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