Just wanted to wish you all a Happy Xmas ! and hope you manage to stay well ! Bernadette, have loved your advent calendar, and was inspired to donate new toys to the Salvation Army , a great feeling to give back.
I intend to enjoy it after an awful four weeks of Ill health , and following an appointment with the Respirotory consultant where-in I was asked if I wanted the good news or the bad news ??? Well I was not expecting any bad news , but this Xmas could be my last , she did say they would get me through the winter and gave me an appointment for April, with the expectation that it could be brought forward to March - great ! Not going to let anything get in the way of Xmas , that I can personally control. So let’s see what happens. Have fun everyone and even though very unpredictable times , let’s make the best of it . 🌲🌲x
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Beachballs
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I'm sorry you've been unwell. I know many who have been told this and that by doctors all seemingly out of the book of Doom, and are still here. So please do not lose heart. I hope you have a peaceful Christmas and better health in the New Year. Love to you.
Beachballs,how about making your first New years resolution that you are going to prove them wrong,I can't think of a better way to start the New year!In the meantime enjoy your Christmas with your family and friends.
Thanks , it’s going to be very difficult to challenge Nice guide lines , but that is what I have to do , apparently I should have been taken off the drug last August as I had had a 25% deterioration in lung function, but they overlooked it because of Covid ………She is going to arrange some lung functions around February and if there is a 10% reduction, then they will withdraw the drug that is basically keeping me going right now . I don’t know how I am going to do theses lung functions as I can’t manage without oxygen, so in some respects it is a forgone conclusion. I will put a strong case together when the time comes , but was a Hugh shock when it was first mentioned and she did explain that they legally have to tell me this . So for now , putting it to the back of my mind and enjoying Xmas as much as I can . X🌲🍷
Dear Beachballs, enjoy every minute of your Christmas 🎄 and like the others have said, sometimes these times are spoken over us but actually we are not defined by a doctors timescale! Sending you a big hug! Dee 🤗
Have a great Christmas Beachballs and although you do find the drugs a wonderful crutch for this horrid disease they are probably not doing much now. I know NICE wont let us carry on taking these wonder drugs if your lung function drops much because they cost too much and its tragic that cost comes into it at all especially if you feel they are helping.Perhaps your lung function will be cancelled now with increase in covid and you are able to keep taking them for a while longer.
Thanks Jill , I hope they will be cancelled too.At the moment I can feel the difference the tablets are making , as I have to come off them when on antibiotics as I can’t tolerate both. Also I have gained a further 16 months of life and time with family because they overlooked the decline last year of which I am sooo grateful for. I just want to get to the summer that is my goal , to see the roses that were cut down two summers ago come into bloom and spread along the trellis and also the clematis……….
My body knows when enough is enough and that I will accept, but while I am feeling ok and can do things I just want to keep going. I know cost is a big factor and completely understand that , my family & friends have even suggested fund raising should it be withdrawn. Anyway hope you are ok , have a good Xmas . X 🌲🌲
I think I have 1month of 150mg and 1month of 100mg left from when I changed from Ofev to Esbriet and you can certainly have them if need me I have no worries about giving them to you.Take care and have the best Christmas and keep your spirits up xxxx
Prepare for the worst and hope for the best Beachballs, enjoy your christmas and I am sure to be saying happy christmas to you next year as well, so many times people have been told this and it doesn't happen so please do not fret. I wish you all the very best to you and your family so have a Happy Christmas and New Year, love and hugs x
I do hope you feel well enough to have a really enjoyable and memorable Christmas with your family. Thinking of you and wishing you everything you can wish for, in the coming year, Beachballs. Love and hugs xxx❤️
They certainly don't know how to let you down gently with bad news like that. I am sure you will keep fighting on and still be here to show them how wrong they are next Christmas. Enjoy your Christmas and keep positive in the New Year. Brian
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