Hi ALL, It's been a while, hope you are all well.

In my last post I explained about my GP's missing the facts in their diagnoses of my problems, they said COPD and kept treating me like a fool for 14 months until finally I got to see a respiratory consultant who did some tests and found that I actually have severe left & right sided heart failure.

After a few arguments and changes in consultants I have been told I need a double transplant, heart & lungs but due to cancer and the treatment I can not go on the waiting list for another 12 months by which time I will be to weak to survive the major operation + donated organs are hard to come by, that's the opinion of the respiratory consultant, the heart consultant is of a different opinion !!!!

He dismissed the opinion of the respiratory consultant, saying it's my heart that is the major problem and after tweaking with medications and doses for the last few months to improve things he now announces a few days before Christmas that that's the best they can do.

So as a bonus and after another jelly scan of my heart I have now been fast tracked and awarded PIP, the almost impossible DWP payment to get. Great news except to get fast tracked and awarded the higher payment means you have 6 months or less to live.

This will be my last Christmas ever ( boy was it hard wrapping the presents this year), the start of my last ever New Year and I might not see the new spring dawn this year and hear the dawn chorus.

At 57 it's nearly time to leave this world, a bit of shock really, been great to talk and interact with some of you on here, and I know others just read and pass no comments so I will say goodbye, wish you all well for future treatments, say ` Have a GREAT CHRISTMAS & NEW YEAR LADIES & GENTLEMEN and I hope I am not meeting up with you in VALHALLA for a long time to come.

It's been an experience to say the least and my story will be on here til it's deleted at some point in time.

Bless you all folks, bye. PeteK1

30 Replies

  • Dear Peter, I don't want to sound patronising but I do believe where there's life there's hope,these Doctors aren't God, only human.

    I hear that you are coming to terms with end of life,& do hope you have support etc.I can only imagine, how hard this Xmas will be for you..

    Please try & enjoy it all,with your

    Loved ones, will be thinking of you xxx

  • I wholeheartedly agree with Wend here - life and hope go hand in hand.

    Have a wonderful hope filled xmas xxx

  • "Wrapping Christmas presents". That makes your situation very clear. Even to people like me who have never had the chance to get to know you. Merely names who have passed in a forum. I am sorry to learn that we will now not have that opportunity and I wish you the strength to face the coming year.

    Regards Rib

  • You take care yourself , we will be thinking of you and you prove the consultant wrong and be back wishing us a happy Christmas next year

    Best wishes

    Dorothy xx

  • I'm sorry to hear that about you. I honestly hope that they find a cure for you.. f you don't mind me asking what's the symptoms of copd? I'm only wondering because I have asthma but there's another problem I'm feeling in my lungs I can't explain.

    I will pray for you buddy..

  • Please don't give up hope no one can say when your time will come . Hope you can find the strength to share some special times with your loved ones and wish you lots of luck in the new year. Joyce

  • Dear Peter.

    I honestly don't know what to say. You haven't been treated well, why is life so unfair, I can't even begin to imagine what you and your loved ones are going through. Thank you for taking the time to write to us. I'll be praying for you. God Bless.

  • May this Christmas be a peaceful and memory making one for you and your family. You are now going on the most exciting journey of all. See you soon

    love Dozy x

  • I wish you strength to face your future with courage medics do sometimes get it wrong but even so one day we will all have to face the end of our life on earth,just remember this is not the end! God Bless you Biker xx

  • Peter, How heartbreaking to read your post. What can anyone say to you, Just maybe your time here will be longer than you think, I do hope so, you are so very brave to have written such a moving post, Thinking of you, Bulpit

  • Wishing you Peace and Love x

  • Try to, enjoy each day as it comes and try to be positive on the good days. Will be thinking of you. Take care x x

  • Hi Pete. I get PIP highest rate I have a thyroid tumour. Had half removed and was told before the op that I would be lucky to last a few months, two years later Im still here! It has now spread to my stomach and I have other issues and have like you had loads of contradictions by doctors. I'm not half as I'll as you but please don't give up like your doing? Doctors aren't god they don't half the last say, you do. They've got it wrong before they can get it wrong again.

    Keep going to spite them LOL!

  • Dear Peter, how emotional your post has made me feel; we are all routing for you.Take care June

  • so sorry life so unfair.

  • Oh Peter, what a beautiful, heartfelt post, I am sitting here with yet another chest infection thinking how will i get through Christmas, but hearing you makes me realise its not a drop in the ocean. The medics do not always get it right, and where there is life there is hope.I am a firm believer that there is a better place for us one day, whenever it may be. Please keep posting. With love Sheila Xx

  • Firstly I understand where you have been it took me 2 years to get any form of lung test from my GP's. I am in the throws of my lung consultant asking my heart consultant to change my tablets to ones that I have not got on with before? I was due a Pace and Ablate that would of meant I was pacemaker dependant but after my lung report it was cancelled?

    As for the DS 1500 which fast tracks you to PIP unfortunately it is not worded in the best way. It initially states that it is for terminal ill people that are not expected to live 6 to 12 months! However this is reviewed after 5 or 7 years (not 100% sure which) From this alone you can see that it does not mean your end of life is 6 to 12 months.

    One of my conditions if you Google it states I should not be writing this post by now but here I am! My father was diagnosed in his early 50's with leukaemia he past at 84!

    Do not let the B@$###s Grind you down! We all have an end date but live it to the full. Do not let it rule you?

    Be Well

  • Can't imagine how u must b feeling , I have only 32% lung function left and I feel blessed reading your story I don't post much but wish u and all your family all the best , best wishes , Tam !

  • I wish you a peaceful and happy festive season with your loved ones and hope you will make some great memories. As you know and has been said doctors are not always right and you may have more time than you think. I will be thinking of you, god blessxxx

  • For what its worth, one of my cousins was told she had a maximum of 6 months to live, get her affairs in order, etc., and got fast-tracked DLA [pre-PIP]... nearly 8 years ago.

    She's bad now, but hey, the docs aren't *always* right.

    You will be in our thoughts.

  • I wish you the best for the life you have left, no matter how long that may be.

  • Thank you ALL for the thoughts, comments and encouragements. I gave a shortened version in my post this morning, there is more to the complications and diagnosis but it's to depressing for me and would spoil the festive season for you all if I posted at length.

    I have a wonderful Palliative Care Consultant and MacMillan Nurses coming in to see me and ringing me on a regular basis, I have a specialist heart care team of nurses who are also in and out or on the phone.

    I am not that far down and depressed that I can not make an effort for Christmas, I am looking forward to it and will savour it all, Yorkshire Pud's Roast Beef and all the rest. It just brings it all home that bit harder when I realise no matter how good family & friends make it (or how bad), it's my last.

    I have lots of memories of good times past at this time of year and it's sad to think that after this I will not be adding more to the collection, lives will go on and Christmas will come again next year, I might be missed, I might not, but these memories this year will be the last ones shared with loved ones. Lets hope they live long and healthy lives and my memory stays alive.

    There is one thing I do know, A CHRISTMAS PARTY should be a great experience in VALHALLA and might be a better one than I can have here, who knows ??? I'll let you all know next year some how.

    Take care all, have a good one, take a wee sip on Christmas Eve and remember those you loved who have already gone to the next party, then celebrate on the day as if they are with you and everybody's a winner then.

    HAPPY CHRISTMAS ALL, and wishing you ALL the best for coming New Year.

    Bye Now Peter K1

  • So terribly sorry to read your news. I hope you can cherish the time you have left with your nearest and dearest.

  • Hi Peter this is to wish you the best Christmas ever, make the most of every day you have, we can't change the facts but you can sure enjoy what ever is left of your time. Nobody knows what tomorrow will hold so make the best of today , god willing you may have more time than you think, cherish each moment xx

  • I think this is a very sad situation Peter I relay hope you have a great Christmas but please try not to give up we are all hear for you. You could help us set up a petition and get the rules changed about how people like us are treated by the DWP after all they announced this week if you are over weight you will be classed as disabled and will be awarded PIP and ESA.

    Take care

  • I too agree with Wendells - PLEASE don't give up hope - this is a terrible shock for you, but keep on fighting and I hope you see a few more Christmases. I must say you are an inspiration in your attitude though. All very best wishes for the future (here's hoping its a lot longer than you think) and in the meantime have a wonderful, wonderful Christmas with your loved ones. xx

  • I just want to say there must be many reading this who won't reply because they can't think what to say, but will have you in their thoughts this Christmas.

  • i am one who does not know what to say yet

  • Had to have Dr out yesterday, severe lung infection (left side only he said) so started me on the standard antibiotics at 500mg and steroids 8 a day.

    He has also put me on Uniphyllin Continus 200mg at night and Ranolazine 375mg x 2 a day.

    Reading through the leaflets the Uniphyllin 200mg has some serious dangers with it !! Alcohol in any amount will nullify the tablet, it will also have a reaction turning the medication toxic, the more you drink the more you poison yourself !! Cigarette smoke inhaled will also have a chemical reaction and change the way the drug works, this includes inhaling secondary smoke from somebody else smoking near you !!

    The Ranolazine isn't much safer and putting the two together as new medication and doing this along side my existing medication and stopping nothing might be a good idea to a locum DR on Christmas call out but it sounds like a bit of a big risk to me, what do you all think ???????

    Now in my current state of health (not good) I am starting to yet again question the wisdom of GP's when it comes to prescribing what is best for you ????? Past experience says they get things wrong, are they now looking to speed up my demise and kill me off sooner to stop my complaints about poor health care from them all ????

  • ..I am a volunteer for Hospice and I have learned that listening is the best thing I can do. Many times things go the way of God and not the way of the world.... keep your chin up love, many prayers are being said for you and miracles still happen.

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