new julia

hi all this is my first contact, i phoned helpline today who were realy supportive and gave me info about this site.

i have been diagnosed with copd waiting another c t scan on fri as i also have noduals on my lung, at this moment i am very scared carnt sleep and unable to come to terms with it all,i do not feel i can talk to family or friends as they just say you look realy well.

Any message of support would be very wecome.

Thanks julia

25 Replies

oldestnewest
  • Hi Julia

    Sorry to hear that. I can relate to your fear and also the difficulty in sleeping. For me I'm unsure as to whether it's my fear that inhibits me from sleeping or whether I have a condition or not. I have been left in the dark and really need a diagnosis and soon so that I can start trying to fight back against it.

    It may take a while for family and friends to even come to terms with what you are experiencing as I'm having a really hard time about it and getting the same reaction as you simply because I've always been healthy and I am still considerably young.

    The best advice that has been given to me by the wonderful people on this forum is to stay strong and think positive and to also ask as many questions to your GP as you can.

    Alan

  • It is hard sometimes to get people to understand how unwell you really are as you look ok and even laugh, when they see you really SOB after 50 metres of walking it starts to sink in. Anyway chin up things could be a whole lot worse.

    You will find plenty of help hear as we are going through similar problems and we all at least understand what you are thinking.

  • Exactly, my dads showed nodules and it was nothing to worry about. More often than not it is nothing so please try and be positive until you know for certain xxxxxxx

  • Hi Julia, sorry to see you here but glad you have found us!(i hope that makes sense) We all have different conditions and every case has to be measured individually so please dont worry too much about the things you cannot control,an easy thing to say and a hard thing to do but something i think everyone on here will agree with. I am 38 years old and had symptoms from september last year, my official diagnosis came in march this year of IPF and more recently PH. I am end stage with IPF now as i had a rapid decline over the last few months. I am on 2lpm of oxygen when doing anything but resting and am in the process of getting on the active transplant list for a bi-lateral lung transplant. I too have the sleepless nights but with the help of my wife and friends and family i am enjoying doing the things my condition will still allow and not worrying about the things I cannot change. I understand the concerns about the nodules, I had a similar experience and although its difficult I had to change the way I thought about it all. The way I see it now is- whats happening is going to happen anyway, I have a good GP who listens to me and a great team of specialists at my hospital who I am confident are doing everything possible to make a difference to me, its how we enjoy the time we have thats important. Do something every day that makes you happy no matter what it is or how small you will benefit from the positive feelings it is sure to give you.

    I hope what i have said helps, now you have found this group you will never be alone with your condition, we all know how frustrating it can make us somethimes but we are all here to help each other. You can ask anything and will always get an answer, sometimes its not always what we want to hear but from experience its always good sound advice.

    Speak soon and breathe easy, Tony

  • Hello, havn't seen you for a while, nice to read that you are being positive and things are hopefully on the move regards your transplant.

  • hi Tanyamarie, hope you and your dad are well, i have been popping on and off here now and then but had a lot of appointments and assessments recently, I should be meeting the head of the transplant surgeons in a few weeks and hopefully shortly after that be on the actual list. Speak soon,Tony x

  • Hello Julia

    If it's any comfort to you , keep in mind that nodules are not unusual in smokers/ ex smokers, particularly over the age of 50. The main reason for the x rays we are given when diagnosed is to eliminate any other possible causes for our symptoms other than copd. Good luck with your CT scan on Friday, and in the meantime know that you have a place to come to where you can be amongst folk with similar problems who understand where you are coming from. P :)

  • thanks p i have got 2 moduals the scan is to see if they have grown to iliminate cancer.julia x

  • Because what we have doesn't show on the outside people don't understand what we struggle with. Unless you live with COPD it is hard to imagne what it is like not being able to breathe properly. You have all my support and understanding xx

  • Gerd thank you for support.julia x

  • Hi Julia, the helpline pointed you in the right direction, we are all in the same boat one way or another, and all help each other. Speaking to others teaches you more than any doctor will, this site has helped me such a lot. First of all try not to be scared, and once you find out what you are dealing with you can start fighting it in the best way possible. If you have questions, just ask, even if you think they sound daft, because to you they are important.

    Best wishes, good luck with the scan. Remember to come back and let us know how you get on.

  • thanks it does seem that i will learn alot from this site as the hospital are not giving me any info and i need to know how i can help myself.

    juliax

  • Hi, This is such a difficult disease - you can look really well and still have COPD! The only advise I can give is try to get as much information as possible from your Doctors etc. Use this blog for advise and remember people live long and happy lifes with COPD, it may mean a few changes to your lifestyle but you can see from the blogs that people do live good lifes. Good luck and don't worry until you know what you have to worry about! TAD xx

  • thanks Tad i think i am panaking.julia x

  • may sound unimportant - but what does it feel like seeing your blog name 'condemed' ? ... maybe try a more positive name? And when I feel a panic I use Rescue Remedy drops on the tongue...works like magic. When I stopped wanting to lie down in bed, I got extra pillows to lie up higher, and electric blanket that is soothing. Anything to help you feel happier and more positive really helps I find. Best wishes and look forward to hearing from you again when you have more news that will help you understand better. It's so hard at first when there is so little information given and I did think the worst from fear. I can say I now feel much better as I have all I need to help me manage my COPD. Ask you dc about pulminary rehab exercise programme too. And get to a local breathe easy group ... all that helps.

  • hi thanks for honesty any ideas for a new name and how do i go about changing it.julia x

  • not sure how you change the name - can you edit it ? or rejoin with new name ? idea for a new one ... what's a word/ name you associate with a smile/ optimism/ whatever the feeling is that you want to have ?

  • hi all thank you for your honesty i agree my name is very negative and i am not a negative person normaly but this is getting the better of me and it shows how desperate i was feeling yesterday when i chose it i am sure that will change now i have found this site,thanks for support.julia x

  • Tony. What a wonderful post. It made my day.Keep spreading the positiveness !!

    Condemned. I'm sure by the end of the week you'll feel a lot better in yourself after chatting with people on here. I'm a positive person myself ( see my username ! :) )but went a bit down when I was diagnosed as having COPD. I've only been on here myself for a few weeks and from day one these wonderful people have been so helpful and uplifting.

    Group Hug !!

  • There used to be a way to change your name but that was back in 2009.

    forum.lunguk.org/forums/t/3...

    Maybe put it in " Questions " or put it in " Feedback " ?

  • hi,

    julia know exactly how you feel, as i felt exactly the same when i was diagnosed with copd 2 years ago, have good and bad days like everyone else, so i make the most of the good days! can only tell you to always ask questions when you speak to your docter/ consulatants about any fears that you might have, they are usually qute good at answering any fears that you might have,take care talk chat to you soon.

  • I felt exactly the same when I was diagnosed julia, keep thinking positive. I had nodules on 1st x ray, then 2nd shown they wern't there any more?? Try not to worry, just live each day as it comes, the good enjoy and just cope with the bad, thats what I'm doing now. Chin up lv, we're all the same on here it's a brilliant place knowing yiour'e not alone with your illness.xx

  • Hello Redeemed,

    Which level or stage of COPD were you diagnosed with?

    Where I am they've never ever made any kinds of scans or x-rays.

    Reading everything here makes me think even more that the state of he healthcare where I am is simply sub-standard.

    Have had a few spiro tests and that's it.

  • Love it TJohn, Redeemed sounds good to me!

  • Hi Julia,

    Only just read your blog. Hope you're not feeling so scared now. It really does take time to get your head around this thing when you're first diagnosed but you will - in time it just becomes part of you and your life and you learn to adjust to it. I had a scare a week or so back but the wonderful people on here were so supportive that I really did feel better within a couple of days. In my experience its always good to share your problems with people who can understand them!

You may also like...