In previous posts I have kept you informed about my GP's and what they did, in one post I told a little of my life story and the history behind my illnesses.
My last post was to tell you all about the mistakes m GP's made for 10 months.
I have since the last post being trying to fight the system and get something done but it was all a waste of time and energy.
My GP's and consultants have by their mistakes given me a death sentence.
I need a double transplant , lungs and heart I am told BUT I can have neither of them !! This is due1`I am told` because I survived 6 weeks in ICU in 2011 and had to be on a ventilator the whole time which meant a tracheostomy, I had 2 forms of cancer in 2013 which i beat and survived but due to my GP's for the last 10 months blaming COPD for my shortage of breath when it turns out it was really left and right sided heart failure and nobody picked up on it, not even when I asked if chemotherapy could cause breathing problems, ` it turns out it can by causing heart failure` but my cancer consultant denied this until a respiratory consultant ran some tests on my heart that it has been admitted in a round about way but this still leaves me needing a new heart and set of lungs.
This is not going to happen and I have been told I have 6 months if I am lucky, I am worn out, my body and mind can not cope anymore.
I fought to live in 2011, I fought to come back from it, I fought to beat cancer, 2 kinds in 2013 and went through 6 weeks of chemo' & radiotherapy and now in 2014 coming up to Christmas I am told, ` that's it, it's all over, we are not going to do any more for you` I am now waiting to see a palliative care team so the end is really here for me, no going back no more fighting and no hope.
This will probably be one of my last posts so I would like to thank those of you that have answered my other posts, those of you that have read them but not commented and to any of you that look up my past posts.
Take care all, keep breathing and fighting, on day there will be cure so hang in there.
Peter.
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PeterK1
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Oh dear Peter, I am so sorry you find yourself in this horrible situation. I don't really know what to say to you. I have a couple of thoughts though for you to think about: (I) I think I have read that you have grown up children. Could they be helping you in finding a second opinion with a different medical team? or do you have any other support that could help with this? Lung and heart transplants together are not that uncommon any more these days? (ii) yes there is a point to going on: you get a chance to say your good-byes. This is what I think to myself when I get depressed about death from a progressive disease: at least I am lucky as I get to prepare and say good bye. Think of those that die in accidents every day: they mostly don't see it coming, have no chance to prepare and cannot say good bye. So relatively which one is better? Anyhow, Peter I wish you all the very best, hope that you are getting a chance to "enjoy" yourself, I will be praying for you and send you lots of hugs and lovexxx
Oh my peter I really don't know what to say, I have had this reply in front of me now for the last 10 mins, each time I go to write something I delete it , it just doesn't say what I want to say in my head. So the best I can do is say sorry, thinking of you and ur family, enjoy everyday and spend quality time making happy memories, thoughts and love x Sonia x
Hello Peter my heart goes out you please don't give in where there is life there is hope prove they are wrong carry on fighting
I hate this modern terminology nothing more we can do for you , years ago the family would be told nothing more could be done not the patient , maybe I am wrong in my thinking but i Am sure patients lived longer not knowing
Don't ever give up. You are a fighter as you have shown. Get a 2nd, 3rd, 4th opinion, but don't give up.
Hi Peter it's not fair is it? You are such a battler and have been through so much only to be let down by your doctors. I think it is appalling the way you have been treated.
I have read (but not necessarily replied) to all your previous posts and have learned a lot from them as I am sure we all have. You have shared your battle and knowledge unstintintly with us all and I thank you for that. Knowledge is power and I think that others will be helped by your posts in the future. Who knows you may even save someones life and that has to be a big plus. so well done.
I am on another lung site and someone just posted that they had received the same news that you have and don't have more than a few months. They said that after all their anger, distress, disbelief etc. that they found a great peace not having to battle anymore and just accept the inevitable. Maybe that is the silver cloud, I don't know. I DO know that we are all with you and wishing you all the best.
Please keep coming in and let us know how you are doing and we will all do our best to support and listen to you. You have given so much now let us give something back.
Love and hugs xx
Dear Peter, What a dreadful situation to be in - I wish I had a magic wand for you and I am so sorry I don't. I can only say that despite the opinions of the medical team - six months cannot be definitive. You have fought before and you have won enormous battles and, although you must be tired and weary, don't give up just yet. I would agree with jenss - she gave you some good advise. The pallative team will hopefully be able to maintain your quality of life. You will have chance to say good-bye on your own terms. Sending you masses of love, big hugs and kind thoughts, we will all be thinking of you. Lots of love TAD xxx
Peter it was so hard to read your post, my heart was heavy as I read of your struggles
Why have they said you cannot have a transplant? is it because you are too old? or is your condition unsuitable?
Doctors can get it wrong Peter...I was told at 15, that the operation I was having would help me to reach the age of 30 . Then at 40 years a doctor told me that I would not last much longer than 60 yrs
Well I am well past 60 and still fighting, and feeling good ( OK my lungs are not good and I am on antibiotics all the time) BUT I am still here, still able to get about, still enjoying being alive
We all must know of people told 'you have 3 months' or 'you have 6 months' who well outlive the time mentioned...and all the time there is hope...hope that some drug/inhaler/stem cell regeneration/ research will come up with something....and those 'condemned' to die are the ones that get to trial the new drugs..( as has happened with several people that I know who have terminal cancer and are still alive due to research drug trials)
So weary as you are DON'T GIVE UP......hopefully some doctor will help you
Miracles happen Peter and I'm praying for one for you. You've battled on bravely before you can do it again. Please dont give up. Many people have proven dr's wrong. Sending you love. Suz xxx
Helloe, Peter. I was told I had three years at most. That was 6 years ago, so don't think that they always get it right (you already know that they don't). Be as comfortable as you can for as long as you can, and dwell on the positives in your life. x
Hi Peter, 4 years ago my family was being told I wasn't going to make the night, I was sedated, ventilated, on kidney dialysis, lung drains, connected to a nova lung, multiple organ failure but I'm still here and doing ok
so keep fighting my friend.
With your history its pretty obvious your a natural fighter so kick those negative thoughts into touch and keep on going.
God bless you.so sorry to hear about your fight for life.dont know what else to say except so very sorry.
My Peter you are down in the dumps and quite rightfully so I can empathize with you but offer no sympathy that is wrong, what is also wrong is the way you seemed to have flayed back and accepted your fate with out so much as a further fight by that fight I mean get a second or even a third opinion, one thing I agree with Jens is that if all that you have left is months live it to full as far as you can, say goodbye to family and friends and make peace with yourself I don't know if you adhere to any religion or not that is yours and no one else's choice. I lost two sibling to cancer the first one was just 29 and the second 30 but she said her goodbyes and so to did my brother, my sister went boldly ahead and arranged her own funeral which the enormity of it was huge. At the same time my sister was in her last days she remained cheerful right to the end. My Step Father was going into his final stages of muscular dystrophy and CCF when we asked the doctor how long we as a family made a care plan for him as we all wanted him to die at home, first though we had a year where he was fairly stable and said to him "right dad this is your year we go were you want us to go and we did in that year we as a family were able to let go when the time came because we had such recent happy memories of him. So come on Peter lad palliative care is just a fancy term (as you may well know) for end of life care and going back to what Jens said you can say that last goodbye some who are victims of horrible accidents never have that chance. So if things are to be what you say are to be make them a happy time for family and friends to remember you by. I live in a nursing home and have done fr the past 10 years this year my COPD went up to level 4 not quite but the end is coming along with the cursed flare ups I keep having the point I am trying to make here is that I play an active roll when I am well and also (this is not morbid thing to do at all) I filled in a form to say how I wish to be treated when I reach the palliative side of my life who I want present and who I do not how I want to be disposed of (cremation or burial) none of which strikes me as much the only sad part of it is that I cannot reconcile myself with the rest of my sisters who live over 100 miles away. So Peter it is up to you make it a good end with the battle valiantly fought by which you will be remembered with love and grace or leave this world grumpy in the end the choice is yours my Step Father went down in history to me as he abused me from an early age and yet in his last breaths he was trying to say sorry for what he did but I know he died at peace with himself and the world because I had found it in me to forgive him a few years before he died. So read what all these good people on this site wrote in answer to your plea, from that you can form a battle plan and fight to the end heck you survived cancer once ICU once (lucky you I had had my 6 weeks on a breathing machine and they were waiting for my next of kin to come and decide what to do switch of or try another week happily they gave 2 more and during the last week I was fighting to breathe on my own and lived to write these lines to you.
Maybe this is the one place that you should stay in touch because you have contributed to others' understanding of their illness and it is a place where people have the courage to speak to someone facing end stage of life. Having said that, I agree get other opinions as you deserve to know that you have tried everything. Hope is the reason that you have survived so far Peter. Nobody expects you to fight to exhaustion, but hope will make the next 6 months take on a perspective that will be really important for you as you face the challenges ahead. Peter I don't believe that one human being can put a time line on another. Ultimately you will know and choose when to finally rest.
I cannot pretend to understand what you must be going through but I believe that people on this site will be with you giving you strength and love.
Dear Peter, I have not been on this site very long so was unaware of your situation. Reading your post has made me think of so many things. Reading the other posts to you I see how very much you have helped people on this site, which is wonderful. Also, from what you and they have written it is obvious you are a fighter. As others have said, the "timing" could be completely wrong, so try not to concentrate on that...easy for me to say, but so many are told they have only so much time and it all ends up totally not true. From what I have read you definitely deserve to keep going...I haven't the courage to have gone through everything you have, so I admire you greatly. Sending may good wishes. I will hold you in my thoughts and my prayers.
Hi Peter, I endorse all the above comments, sending you heaps of warmth and love, stay with us Peter, we will be with you for the rest of your life, God bless x x x
In my thoughts and prayers Peter. You have inspired and helped me so much in the past. Keep on fighting and stay in the warmth and friendship of this forum. Please don't shut yourself away from us. We are all here for you. xxx
Hello Peter, I don't comment very often but I do read posts which I find very informative. Peter I am so sorry that you have been let down so badly by some of the Medical Profession. But take heart in the fact that they are not all the same and maybe you might decide to get another opinion. As other people have said the doc's could have got it wrong "again" and you could prove them all wrong and go on for some time yet. I wish you all the best Peter and will keep you in my though's and prayers, God Bless! Ruth xx
Thank you ALL for the kind wishes, the positive thoughts and well wishes, you are ALL an inspiration and you make this site what it is, a place to turn to for support, understanding and as always none judgemental comments and encouragement, THANK YOU.
Today they assessed my oxygen, putting it up tomorrow from 4 ltr a minute to 8 when they bring the new machine. Not sure how I will cope on it, it will be like a high pressure hose blasting in to me.
I also had a reply from the hospital about my complaint, what a joke. They can not even answer that without making serious mistakes. The Chief Executive has signed the letter and I assume I am now to accept the explanation as gospel and go away politely.
Well that's not going to happen !! they have made so my mistakes claiming they are from my HCRs (Hospital Clinical Records) like, to quote from one;-
"You had no fluid on your lungs in March 2013 when you were admitted to ward 14 (cancer ward) with a serious chest infection while on the cancer treatment, with no fluid on your lungs, this would rule out you having heart failure at the time and your heart had not deteriorated at this time due to the cancer treatment"
then 3 paragraphs later it says,
" one of the reasons that your heart could have deteriorated is due to the heart failure that pre-existed before your cancer treatment started in February 2013 but we would rule out any deteriorating in your heart failure as being connected to chemotherapy treatment as there can be numerous other factors also involved".
Now is that a contradiction or not ? Heart failure in February but not in March, wow a miracle must have happened and I missed it !!!
This is the type of bureaucratic nonsense I have been fighting and it is what is helping to drag me down, you can only beat your head against a wall for so long before it hurts to much and you have to stop.
On the good side I have spoken with my GP and things are in motion now to get me transferred to a different hospital, with different consultants so as a few suggested, second opinions will be coming eventually.
My new GP seems to be backing me (for now), I'll hold back judgment for a while on this. He thinks I have fought hard so far and at 57 I deserve a few more years but I'll not hold my breath, but I will keep an open mind and see what happens !
I still feel really let down by all my experiences at the old hospital and with my old GP's but maybe as some of you said, `they are not all the same`, only time will tell.
Thank you all again and if in some small way my old posts, and rants and ramblings have helped the odd one or two it does make me happy, thanks for sharing.
Stay strong all of you, be as you are and keep the site going, take care all ,God bless you all
Hello Peter, it is such good news that you have a new supportive GP and he is transferring you to a different hospital to get a second opinion! I am really happy for you about that and hope that they will be able to figure something out for you. Good luck with the high flow oxygen, hopefully it is less of a change and burden than you expect. Take care Peter and let us know how you go. Lots of lovexxx
Hi peter, I'm new on this site and read your post and think to myself as I am at 54 years of age, that I'd be as strong minded and strong willed as you obviously have been to survive all you have been through, I truly hope and pray you can continue with your strength and determination again. I am reminded of my father in laws experience years ago, after he had a massive heart atack the doctors said that should have killed him outright, and they said he'd be very lucky to last 6 months, but the old bugger proved them totally wrong, as he lived another 7 years, so please keep fighting, don't give up, good luck to you at your new hospital, love a newbi Angie. Xxxx
Pete, so pleased to hear that your new GP is supporting you. Glad to hear that you are not going to go away that you will pursue your complaint - really it is sickening. The very best of luck with the new consultants and hospital. Hope the higher rate of oxygen is more help than it is trouble! Take the very best care and please keep us informed. Lots of love TAD xx
Definitely not fair and can see why you would feel so devastated and ready to give up - but you won't - because you're a fighter - which you have already proved over and over again, and against all the odds. You will come back from this and your positive attitude will see you through - I too am of the opinion that you shouldn't give in - as others have said, the doctors are fallible and make many mistakes - go prove them wrong.
I wish you all the best and I hope we see some more posts from you when you're back in your 'fighting spirit'. Big hugs and warmest wishes to you xx
Oh! Peter, I feel gutted for you, I do not know your past history but you certainly have gone through enough now. Frankly I don,t know what to say, I am a great believer in the power of prayer so will pray for you, don,t give up HOPE...... God Bless. xx
Peter, everyone has said what I feel and words are the only help we can give, but why have they ruled out the double transplant? I thought the "cut-off point" was 70 and you are nowhere near that. Are there other things to be factored in? Hang in there, thinking of you and keeping everything crossed that you come through smiling.
Hello peter, sorry to hear it is not good news, and your time is limited you must have sensed all was not well like most of us who sense something is not right. Time to give up the fight accept defeat and make the most of the time you do have left if only short. Enjoy your Christmas, steer clear of infections. Sorry your journey to this end was a bad experience but I am confident it will be better on palliative care. Accept all offers of help no more fighting the system do what you would like , treasure each day and my thoughts will be with you at this difficult timexx
So sorry to hear your news. Please keep fighting! My aunty had heart transplant, in their early days, and also had double lung transplant some time after - when she was well enough I assume. But my aunty lived for almost 20 years before her body stopped fighting! Please NEVER give up the fight for life. You are wanted and needed in this world.....!!!
Hello Peter, I am in a very crazy health situation; so Please Please do not give up! I am fighting on and despite doctors saying their diagnosis; 'i will not be beaten' - 'i will not give up! Be strong!
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IS HE GOING TO SLIDE OUT OF THIS ONE?!
Pneumonia
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