Thanks for all your replies

Hi Everyone

Thank you all for your kind responses. I am trying to gtet my head round all of this and still cannot believe what I have done to myself. I try and take faith in all the words that you have said but it niggles at the back of my mind that if I have 25% of both lungs gone plus bronchiectasis in the bottom how long my lungs will hold out if I am 35 now ???. I really do not want to be at a stage where I am on oxygen at 45 or 50 for that matter that is no way to live and I would not want my wife to have to give up her life to look after me. She deserves to have and find a better life than that. Each night I wake and in between coughing i just lie there and think about the things that could have been and now are just not possible. I really want to believe you all that I can have a long and happy life, but I am not convinced although I will try everything in power to stay well. I feel so lost and alone, I am sorry to rant as I know you all have your own problems and journeys to take. It just seems the more I read that its the luck of the draw on how long you can last with any decent life at all.

Thanks for listening

Justin

7 Replies

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  • Justin - you sound very desperate and I genuinely believe that you is not as desperate as you fear. Lots of lovely people on here told you so. Could you go back to your doctor and explain how difficult you are finding this. Have you been in touch with the BLF helpline. There are also Breath Easy groups around the country who maybe able to offer you support.

    I, as a carer for my husband, think you are wrong about your wife. She married you and whether or not it was a religious ceremony or not - it was in sickness and in health. I would not change anything - I married my husband, love him and this is what life has dealt us. Do I feel sorry for my youngest daughter - somedays yes BUT at least she has a daddy, many of her friends dont! You need to talk to your wife and give her chance to understand.

    Have you seen a consultant? Could you ask for a second opinion? Take good care of yourself, with lots of love TAD xxx

  • Hello Justin, I am so sorry to hear how bad you are feeling. It is perfectly natural to feel upset and angry when you get a diagnosis. All I can suggest is to look on it as a challenge to keep as fit as you can in the circumstances.

    Take your medication. Do your breathing exercises and take up walking. Yes, you will get out of breath, but you stop, get your breath back and carry on. Short walks to start with, then longer ones. It isn't easy at first but with a week or two you will feel an improvement.

    I have Emphysema and Diabetes 2. Exercise has done me a world of good. My nurse was amazed to see the improvement on my spirometry tests from 250 to 300 on the blow tube. She said I had gone up to mild/borderline from moderate.

  • TRY to stop the "what if" - I know, it's hard, but you will not be able to proceed forward if you keep going back. (believe me, I am very ancient and when I see how I constantly kept looking back I realise how much time I wasted!!) have you spoken to a BLF nurse - it wouldn't hurt you to try speaking with one...they are very very helpful, and they know what they are talking about!! :) I will be watching out for your posts, so do keep us in the picture as you progress (and progress you will !! ) All good wishes. :)

  • Some great advice on here Justin so please get in touch with BLF helpline as soon as possible. I am sure your wife loves you no matter what and you will get your head around things eventually. Life is very hard at times but you can and will get through. xxx

  • Hi Justin

    It's just panic at the unknown and I think you're getting a little ahead of yourself. You need to ring the BLF helpline. I've looked at your last post and there were loads of positive things that you seem to have lost sight of so I'm going to remind you.

    You've given up smoking

    Your Fev1 was really good (100%)

    You have 75% of your lungs working

    You walk 1 mile a day

    You run 1.5 miles a day

    Just ring the helpline 03000 030 555 (Monday to Friday 9am to 5pm) and they'll help you to get some perspective on what is happening. I know it's scary for you at the moment but pick up the phone and get some informed advice instead of lying awake imagining all manner of horrors that may not happen.

    Take care

    Jackie

  • Guilt is non productive so let it go you can't change anything. Concentrate on doing what you can to ease your symptoms and get all the help you can.Joining this site is a good step forward. Joyce

  • jayspurs Ok you had a good look at yourself, that's good and real! Now, even more real, you have to take charge of yourself. This will build your self confidence. You could join a programme such as the NHS "From couch to 5 K" which is a programme for all (I have bronchiectasis and it's working for my 65 years of age! You could ask your GP to refer you to the pulmonary nurse team who may put you on Pulmonary Rehabilitation - this is a very nice option because the nurses are all well equipped with information on what could go wrong, pills problem with shortness of breath, fears etc. and how to put it right.

    if you have a question that we cannot answer, you can always call the helpline nurse on Telephone

    03000 030 555. These are the main options for you to take charge of yourself. I hope you do and live a fruitful life. Don't be scared by your illness, scare it yourself and it will diminish or at least maintain itself. Take care, Mic

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