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My dad will be missed so much

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My poor dad passed away on the 27th July from Fibrosing Alveolitis at the age of 65. He left behinf five doting children and a beautiful wife, our mother. W are all so broken right now and I keep waking up waiting for him to come home, then reality hits and I just cannot take the horrible pain away that we are all feeling. I just want him back so badly for a cuddle and to tell him how much I love him. He had been very lucky with the disease and doctors had said that he had lived a very long time with it. 9 years. But, I still feel robbed. He was such a strong wonderful man with so much fun and love in his heart. Always a smile. We did not even notice he was gettng worse until he started on the oxygen, then the oxygen became all day and night. Then when it got to that stage, he was still walking with the oxygen so we all lied to ourselves or did not see it, I do not know, but it just happened so quickly, one minute he was giggling with us and walking, the next within a week he was gone after being taken to hospital as the oxygen he was on was not enough. At hospital they then increased it to 15 litres, 20 and finally 40 whilst he was on morphine and in a coma state. He passed away thankfully drugged on morphine as I could not bare to see my dad strangled from lack of oxygen and knowing that it was happening. He was so brave but secretly so so scared and cryed all of the time. It breaks my heart that we thought he would be coming out of hospital in a wheelchair and reassured him that he would, and he never came out alive at all. I am desperately unhappy and although have a big family, want to cry my complete upset to the world. Why did it happen to him???? I am just so sad right now. Will it ever heal this horrible pain. My mum is so broken. She has been left widowed at 58 and my little brother of 23 is bottling it all up. My heart goes out to all of you who are battling with this evil disease. Please do one thing for me, do everything you want to do now and do not wait as we waited for things and now I pray that we hadn't. Do not regret anything. I hope so much that a cure is invented for this one day. My dad was on a drug trial in France at Montpellier Hospital which stabalised his illness and gave him more years with us, but unfortunately not enough for us. The drug was interferon gamma 1b. Love you daddy xxx and a huge cuddle to everyone struggling with this disease and their families.

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4 Replies

  • Guest
    Guest

    Posted

    I feel your pain. I'm so sorry to read your sad post. My Dad died of the same thing three weeks ago. I found this message as I've been looking at websites trying to find an answer to this horrible disease but there isn't one which is frustrating.

    Your words at the end were very strong and you are so right. You are great for putting news of the drug trial on there. Thank you.

    Maryx

  • Guest
    Guest

    Posted

    i know the pain you are feeling its horrible, i too lost my partner to this disease in sept this year, he was only 50 , he was on a fast flow oxygen for a few weeks in hospital and we all thought he was coming home , he was he was laughin and joking at visiting then a few hours later he was on high dependency on a ceepap machine it was so quick how he deteriorated ,he was on that machine for 14 hours before he passed away it is so awfull to watch your loved one struggling to breathe and not being able to help them. christmas has gone by in a blurr this year , there isnt a minute in the day i dont think about him i lovd him so much. my heart goes out to anyone suffering this terrible disease , lets hope there is a cure found soon, at the funeral people donated over 300 pound and i sent it to brompton hospital in london for research. x x
  • Guest
    Guest

    Posted

    I am so sorry for your loss, the pain of loosing someone to this disease is unbearable as you feel there is nothing you can do. My father was a sufferer also and passed away aged just 41. I have been researching the disease to check for any updates on cures and the genetic link it can have through families. The thought that it could affect my brother scares me.

    Let's hope one day they find a cure. My thoughts are with you

  • Guest
    Guest

    Posted

    thank you for your kind thoughts amanda, it must be very distressing to lose your dad at such a young age , i really feel for you. i had a lovely letter from brompton hospital where they are doin research we sent £300 which was donated at the funeral , take care my thoughts are with you.
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