in a bit of quandary

hi all x been reading the leaflets from the lung transplant team and on back page it mentions benifits and coming to terms with needing a lung transplant well my husband is on list for a double lung transplant . does this class him has being terminally ill . because on social sercurity secrets awaiting a heart kidney or lung transplant its a terminal illness . its scary thx x x

7 Replies

oldestnewest
  • Were ill chrissy but I don't consider myself terminal as a transplant could fix us. Its just words used by social security but at least it should stop us from being forced to go back to work eh' :) .

    Try not to worry, its better to have the option and hope that transplant gives us as there are many on this site who do not have this.

    Stay positive chrissy and I'm sure things will work out for you and hubby :)

    Tony x

  • thx i think it just hit home how bad he is 2012 he was on 2 lires oxy just for out doors he now on it 24/7 at 3 litres and 4litres when bathing or anything strenuous . not that he does too much for all he tries to keep fit . he just had a form off atos we have to fill it in .more stress . you hear that many stories about the way they treat people anyway enough of me moanin how are you x

  • Considering I was sent home from hospital 4 years ago and told I would be on permanent 4 liters of oxygen I'm doing amazingly well.

    I have overnight oxygen 1 liter and portable for out and about 4 - 6 liters on how I feel, my lungs are 1/3rd of what they should be but I can manage ok on that.

    You shouldn't have to worry to much about Atos, just show them all your medical reports and transplant information. Try and get a letter from your lung consultant, I have one from mine that say's 'sadly this man will never work again', it doesn't make for good reading when its about yourself but it seems to keep DWP from pestering me.

    It must be hard watching the one you love suffering but with some luck and a new set of lungs all could be well again.

    Tony x

  • Try to get help filling this form, Chris. CAB or even ask the BLF for advice. 03000 030 555; open on weekdays from 10 till 1. On these forms, you have to put all the negatives, and that makes you look as though you're knocking on heaven's door! But you know in your heart that it isn't so. Hope you get on alright with this form. Hope your hubby will get a new pair of lungs soon.

  • Hi chrissyK, ring the BLF Helpline for some positive information about benefits. Letters from your Consultant or other health professional will help I'm sure. Have you got a good support system to help you cope with such a traumatic event? Hope a donor soon happens (in the nicest possible way - you know what I mean!) and you can start looking towards a brighter future. Good Luck. Take Care Lizzy.

  • That it is all down to medical terminology my mother was told she has Heart Failure in fact she has mild Atrial Fibrillation on top of that we have been told she has Kidney Failure. It scared her so much.

    If you are claiming PIP/DLA then that will not be affected however if not you should get a DS1500. which will circumnavigate the wait on the claim. Once the transplant is done the claim will be reviewed.

    I wish you all the best.

  • thx everyone i will do what you all say . he gets help with gettin around .he got because of back and hip plus his chest . he got low rate care in 2012 . its only since last year his health has declined hence the active list . i have copd myself .but no where near has bad .i think mines more allergy . once again thx take care x chrissy

You may also like...