Some of you guys in my hu family know i had my first assessment at harefield in September and they said i would be offered a double lung transplant.

I was shocked they said that because everyone including the transplant coordinator told me i would not be given a definite answer on the first assessment but i was and i was told i would have a second assessment in January.

The coordinator has just called me to say i have high antibodies 78% of the critters so that means ive only got a 22% chance of a mach and a meeting is going to be held on the 2nd of October for them to discuss what to do.

I'm so fed up and understand now why they don't tell you on the first assessment and i wish they never told me because its hard enough making the decision and now i have to wait and see if i will be offered one after all. I don't know about you guys but its hard staying emotionally well with this illness and i feel like screaming

52 Replies

  • this is my moan with the NHS they only tell you half of the story and that is the half they want you to hear it makes me wonder if they really want to give you a double lung transplant or are they looking for a way out, if so Mandy don't let them you have a right to treatment and that is one that has been offered to you in the first place stick at it and give them Hell but don't let the B******* grind you down.

  • ha ha ha ha ya little terror....if nothing else that made me laugh :) :)

  • ant is so right mandy - The NHS is not a free service, we have all paid for it so you get your monies worth lass.

  • im just so gob smacked

    ive spent the last couple of weeks soul searching deciding weather i should have the transplant and now i may not even be offered it

    my head is up my ass

  • I am not surprised - have they said if this statistic of 78% 22% will alter or is it fixed ?

  • Maybe cause your not sure,it won't happen,similar things have happened to me,unless I was 100per cent Sure that I wanted it wouldn't happen,so be open minded go with the flow or thread see how things change.

  • you know what ...ive been thinking about this and when i was told i would be offered it i didnt really want it but now it may be taken away i want it so perhaps this is just the universe shaking me up x x x

  • we all have antibodies and the higher they are the more they attack the new lungs as mine are 78% it limits who i can receive a transplant from.......she said that some antibodies and strong and some week and they have to run some tests to see if they can ignore any of the weeks ones and lower my rate

    she said she would ring me on the 2nd and let me know their decision

  • the waiting game is so stressful - my thoughts go out to you and I hope you have good news soon.

  • thank you honey

  • my thoughts are with you Mandy I sure hope you can have the transplant.

  • me too dar ive just got use to the idea of having it so i hope it hasnt gone

  • You just don't need the stress of all this mandy and I really do feel for you. Try and stay as positive as you can and see what is said on the 2nd. I do wish you well and hope things work out for the best. Bless you.xxxxx

  • thank you my love i really appreciate all of you guys on here and your support x x

  • Hi Mandy I'm so sorry , why do hospitals, gps , medical staff tell u things , do tests then say oh we might not be able to do it , instead of saying this is what we can do , IF, all the tests come back ok, any problems we will discuss our options. So annoying and upsetting being a yo yo with them and not considering oh we feel. I hope all works out for u Mandy, fingers and toes crossed for ya. X Sonia x

  • yeah thats how i feel too but its out of our control

    thanks honey x

  • All that I was thinking of saying is already said Mandy, so loads of hugs to you, I do feel in a mood for you, so will now go and swear at the cat. I do really hope you will get the transplant, take good care x x

  • ha ha ha oh that made me laugh darl :):):)

    thank you x x x

  • Do keep your chin up you never know what is round the corner. i am sure everyone on here will be routing for you . I do hope you get your transplant if it is the right thing for you. Best wishes Irene

  • i know either way you guys will be there for me thank you x x

  • When I read your post Mandy I could not believe it. I had to scroll back up and make sure that it wasn't a different Mandy. I thought that your transplant was a done deal. That you may have to wait a fair bit of time for the right flavour lungs to come along was obvious but to learn this...

    I am so sorry for you. You must be screaming. I know it would mess my head totally. I wish you strength to get through all this complete nonsense.

    Just like Ant said, they should tell you these scenarios in the beginning. At very least they should give you an info sheet explaining that by being on the list does not mean that you are guaranteed a transplant. That the offer of any transplant will be subject to tests on your body's suitability, and only when these test are completed will the hospital know if your body is capable of receiving a transplant. Regards, Rib

  • thank you for that you put it beautifully.....i am having a difficult time with it but hey ho onwards and upwards......i havnt had a no yet i will know next week on the 2nd so fingers crossed

    i just wish they had never told me anything when i went but its done now.....your all such a lot of support


  • I really hope you get your lung transplant too Mandy. It would be too cruel to turn you down at this stage and after so much like you said soul searching. Fingers crossed for you. x

  • fingers. eyes, legs etc they are all crossed babe...i saw a light at the end of the tunnel i just hope it hasnt gone out....only a week to wait though so it could have been worse x x x

  • Hi Mandy6513 Ad scream defo kick my toys out of the box .. Defo understandable if you did tho

    Are you or have you ever been to ya hypersensitive as in autoimmune conditions

  • no i havnt and ive been asked that before thats why im still being tested for rare forms of cystic fibrosis ....

  • im confused about this antibody thing...i know for transplant its not good but wouldnt a high percentage of them mean i would be healthier generally

  • Hi mandy a was of same thinking myself

    Am haveing doo dee of a time myself with autoimmne problems inflamation

    Anyway have you looked at my new post link explanes process and only fixes

    I know there is a antibiody glad they remove in server cases if it's enlarged

    All depends whats causing it .... If you on antibiotcs that can icreae your antibodies

    Thinking about a think the going therw the motions till ya get your new lungs as i assume that gland i talked about can remove could stay

    Understand why you perplexed .. anyway read post follow links and keep open mind

    Next time you see your doc you can ask about gland

    Cheers thanks

  • Hi Sweetheart,you poor little soul,I read your pain.However don't panic yet,wait till you hear the end result,you just never know,it ain't over till the fat lady sings,so they say!!

    I will have everything crossed for you,agree with what the others said,so won't repeat it!

    You are in my thoughts & prayers,keep that pecker up,you are stronger than you know,

    Big hugs,& love to you, xxxx

  • thank you wendells your prayers are greatly appreciated x x x x

  • Really feel for you Mandy, I don't know what to say. I just know they are coming on leaps and bounds in medical science all there time.

    Do you have something like meditation CDs to help you through the tough days (I hear you yelling wtf)?

    22%? eh. It must be ringing in your ears. Like Wendell's says, it aint over 'til the fat lady sings.

    I send you hugs and positives thoughts. Xxxxxx

  • i do have some meditation cds actually but all of them have one of those voices that sound like they are singing and it stresses me out ha ha ha :)

  • Yes when we're ill we haven't the energy to worry about all those other things we need,I know it emotionly draining ,I find it a bit easier living from day to day ,one at a time.trying to feel gratitude for life, be kind to yourself,look for alternatives to heal yourself,nothing has to be so rigid and austerity as the NHS .system!!! There's lots out there ,with no side effects. Take what you need to feel better .i have a bit of spirit!!!!

  • i like the way your thinking hun and i say similar to others so i need to practice what i preach

    thanks honey x

  • Hi Mandy

    I'm soooo sorry to hear of your bad news, you are a fighter and you will just have to keep going through this horrible time.

    Try to keep yourself as best you can - I don't know what to say.

    I send my bigggest hugs and if I had a decent lung you could have it.

    Kindest regards

  • Keep going kiddo. So sorry about your news and hope better the next lot get. Thinking of and praying for you.

    Big hugs xxx

  • keep the prayers coming tazzy2 they are very welcomed by me x x

  • I will pass your username onto my priest for our intercensions so you will be prayed for 24/7

  • Hello Mandy, I am sorry about what is happening for you. Waiting for decisions is stressful, I do hope they come back with the one you are waiting for. Thinking of you. Love Mx

  • i really hope so too ive only just got my thoughts together on having the transplant x x x

  • Have a good scream and beat up a few cushions! Will not change much but might make you feel better? I do wish they would be up front from the start I was told I was going to have a pace and ablate and then it was cancelled because of my lung problems. I truly feel for you!

    Be Well

  • oh must have kicked a few cushions yourself

    thanks x

  • I would of stamped my feet as well if they did not hurt so much ;)

  • I am so sorry to read of your's no wonder you feel on an emotional rollercoaster. I send you my very best wishes.

  • thank you my love your all so kind and supportive on here x

  • Oh, that's such disappointing news for you Mandy ! I thought it was a done deal and feel so sorry for how you must be feeling right now. I can't understand how they made the offer when they weren't 100% sure - it seems so cruel. Really hope the situation can be resolved and that you get on that list asap .

  • yeah thats what im finding hard to deal with.....i was told several times that on the first assessment i would not be told if i would be offered one and this is obviously the reason why....

    the doctor who told me i would has made a big booboo but it cant be changed now

    the only good thing is i only have to wait till 2nd of october to find out if im still going for the second assessment it would have been worse if it was weeks away x

  • Hi Mands,sorry to hear of your predicament.Everything seems to take so long.I got all excited about being referred to the Brompton and have not heard anything further,so let's both have a scream together(safety in numbers lol).I will be thinking of you on the 2nd with the very best of my wishes.D.

  • oh mandy, what a position to find yourself in,,, and what a worry,,,,, its hard to imagine what you must be going through, ,, but i notice a glimmer of light in one of your posts concerning these antibodies, [the strong ones and the week ones] im sure that will bring down the odds a great bit,,, i pray that the man above will be right there with you, and surprise you with the best present you will ever get,,, chin up,, forge on,, you will get that double lung transplant, every one here is rooting for you,,, try to keep positive no matter what,, easier said than done i know,, but you can do it mandy,,, i pray that things work out for you,, were all thinking of you,, lots of love and kind wishes,,,,,, love jimmy xxxxxxx

    p,s get your head out of your ass,,, as one of them will hurt :D LOL

    remember the old adage,,,,,,,,,,

    when things go wrong as they sometimes will.

    when the road your trudging seems all uphill,

    when the funds are low, and the depts are high,

    and you want to smile but you have to sigh,

    when care is pressing you down a bit,

    rest if you must, but dont you quit.

    life is queer with its twists and turns

    as every one of us sometimes learns

    and many a failure turns about,

    when he might have won, had he stuck it out

    dont give up though the pace seems slow-

    you may succeed with another blow,

    success is failure turned inside out=

    the silver tint of the clouds of doubt





    chin up mandy,,, god bless,,,,jimmy xxxxx

  • Loved that Jimmy!

    'It's easy enough to be happy,when life goes along like a song,BUT the one whos worthwhile,is the one who can smile,when everything goes dead wrong!'

    My Gramps always told us that,& I still remember! xxx

  • Oh jimmy haven't heard that one for a long time. So so true but sometimes a little hard to do. I hope mandy takes heart and comfort from it. xx

  • Oh mandy stay strong. Keep in there. There will be light at the end. Don't give in now.xx

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