Back to square one exacerbated rushed in to hospital again in the middle of the night Saturday :-(

The docs are struggling to control these Exacerbation's after having to withdraw the steroid for a couple of weeks, due to the in depth pulmonary tests next week..

Feeling pretty bad and exhausted after days without sleep... Cannot breath and feel Dire..

Heart rate a bit of a problem fluctuating around 168 Bpm

02 around 88 %

BP on the floor

but it's this damn cough and feeling rubbish due to high temp no energy hardly eating at all feeling perm sick have a water infection and poss stomach ulcer... arghhhhh

I really Hope You Are ALL feeling far less crap xxxx hugs

25 Replies

  • Mt GP told me a couple of weeks ago that realistically I am now looking at 12 months left to live roughly, as they cannot control the constant clustered Exacerbation's which is also affecting my heart and putting it under to much pressure.

    Not a Great outcome, I sorted my funeral yesterday, that was a bit crazy

    just have to find the near 3k now pppftt Really wished had not of cancelled the life insurance now arrghh

    Am also getting married after the news we think it will be a good idea..

    Have to find some form of positive in all this shit... :-)

    So today am up and down and so bloody drained with everything... :-)


  • Dear Ali so sorry you are having to deal with all this, I am hoping and praying that you will be stable again before too long so you can enjoy the big day, let us know when you set the date. :) Hugs Zoe x x

  • Aww I am only 40 hunny so no to young not to worry!

    How Are you this morning? I hope you are feeling better?

    Big hugs xxx

  • sorry to hear your news Ali, try and stay positive, not easy you are still only young, grab everything with both hands and take it. xxxx

  • Aww thank you both.. :-)

    I am trying to remain positive and am currently in between meltdowns :-)

    One thing that's worrying me and making life totally unbearable, is the coughing is that severe and am that ill now am constantly wetting when I cough.... the docs don't seem that bothered like it's expected, but it is making my life hell and am so bloody upset by it and haven't got enough energy for the constant washing... :-(

    Hugs to you both xxxx

  • a few years ago I had pneumonia and found that problem, the tena, did work, it was a temp fix and certainly better than feeling uncomfortable. xx

  • Good luck with your wedding! Enjoy planning it all! Hope you are feeling a bit better. Lots and lots of love TAD xx

  • Thanks Nick! ?

    I'm sure once over this bout I will


    had to get little one picked up to ill to get her to school this morning.. Her teacher was lovely :-) xx

  • Aww Well up to now have been buying sanitary pads which are rubbish... daft I know not wanting half the village where I live knowing am in this mess haha especially as just plastered it all over the BLF site hehe ..NICE!!

    Will send my son he won't mind I hope xxxx

  • Ali, what really sad news. But you know, my respiratory nurse once told me she hates it when someone is told how long they will live as they tend to then give up as this milestone is reached; whereas those not told seem to go on. Don't give up hope, you seem to have a lot to live for. Hugs and best wishes.


  • Ali , so sorry you are so unwell.

    Do you have a chemist like boots near you they can deliver larger pads, my son was incontinent untill he was thirteen, (mild cerebal palsey) and they delivered them.

    Perhaps a relative could get them for you. Just to make yourself a little more comfortable.

    I really wish you all the strength I can send you.

    Love B.Xx

  • Mary,

    No I won't give up, I can't have a 16 year old and a 9 year old so not a chance! :-)

    I know am sorting the funeral and will, but that is only to stop my family from going against my wishes which they will arrghh bless them.. :-0

    Alot of me wishes she hadn't really now as been very low and all over the place crying one min angry the next then just sad and numb..

    Will get there.. :-)


  • Aww Ruby,

    so sorry about yr son poor little mite xxx

    my little girl is also due to a kidney condition, Isn't it horrid for kids :-/ not often anymore luckily :-)

    W will be ok if I can just have a bit of sleep I think but I try and as soon as I'm in bed etc cough cough cough and throwing up wetting etc and I have to get up so am feeling exhausted today.. be alot better once have slept a bit xxxxx

  • Hello Ali,

    First, a massive congrats on the upcoming wedding, something exciting to plan after the saddness of planning your funeral. I have to say tho, that is such a brave thing to do and I am sure your children are very proud of their amazing mum. Concentrate on the good things that you have in your life and you know docs are not always right........

  • My heart goes out to you Ali. On the plus side there is a very courageous streak in you coming through which you can't afford to ignore. All I can say to you is continue to fight and I agree with auntymary as I don't believe anyone mortal should attempt to foretell another mortals lifespan. Just concentrate on this setback passing, don't panic as it's the worst thing we can do. I find when I allow myself to get uptight it brings on the cough, the sleeplessness, the lot! You are an inspiration to all of us on here. Keep believing in yourself and look to the future. Hope you get a bit of peace from the cough soon and get some sleep xxx

  • Keeping you in my heart Ali, and wishing you strength and peace at this time. I am so humbled by your story.

  • Thinking of you , hope your feeling a little better soon aim for something then go for it Val x

  • Hi Ali

    I am so saddened to hear about your health issues - must be devastating but I don't see how a GP can tell you how long you have left on this earth! Seriously Ali, please try to get booked into a first class lung and heart hospital for thorough tests - not sure which is nearest for you but I'm sure the BLF nurses will advise you.

    I had this cough/pee problem for a while and know what you're going through - mine was as the result of a heart drug - Clopidogrel which I was put on after having a coronary stent. Stopped the drug with Consultants permission and all is now well.

    On the bright side you have your wedding to look forward too and I hope you have the most fabulous day.

    Sending you hugs and kisses.


  • I feel that poorly and look like the walking dead tbh so would be of no surprise in truth.. But am still here right now and yes had to sort the funeral out as bizarre as that was as ever the control freak probably.. :-) But it is arranged but need to pay it now..

    Regardless what now happens I know can concentrate on spending time with my family and if they are wrong wow amazing have more time to do all the things have put on hold raising kids alone for years.. :-)

    Thanks yup medieval themed small hand fasting and civil ceremony but not a full day not up to that at all.. but an afternoon I can cope with so that's ace... Something to plan besides my twin sisters wedding next spring.. Am dropping weight in weird places and look rough as hell that's my only worry for the day,

    looking like something that has just been dug up :-/ ppftt fingers crossed..

    I am certainly not brave at all just practical really get the rubbish out of the way so have peace of mind.. :-0

    You are all facing horrid times and massive hugs to you all xxxxxxxx this disease is crap !

  • Had 2 hrs broken sleep but have slept so :-) Not feeling as exhausted this morning but by the time had a bit of a tidy for the nurse coming will probably be by then...

    Hope you all have a good day xxxx

  • I was told 11 years ago that in all probability my life span was about 5 years,In some ways I am better now than I was then,so please do not give up hope,the medic's are only guessing,very best wishes .


  • Sorry about the news Ali but I don't believe anyone can foretell ones lifespan. A fighter like you will probably go well past your sell-by date. Stay positive. It's surprising how the power of the mind can aid getting better.

  • thinking of you Ali and wishing you a wonderful wedding day and better health with which to enjoy your special day. Good luck to you and I agree with Puff, the power of the mind is a wonderful thing. Lots of love to you and your family. xxxxxxxxx

  • Carry on being the fighter that you are I had been having a real bad day feeling awful not able to breath until I read this. Puts everything into perspective hope you have a wonderful wedding lots of hugs.


  • thinking of you ali, sure your wedding day will be lovely, such an act of hope, joy and love, think you may find that you have more 'shelve life' in you than you and the medics think, the power of the mind is indeed a wonderful thing, xxx medow

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