Update

Hi all, I'm not sure how many of you are aware but I'll give a brief summary and then an update . I'm 31 years old and was diagnosed with IPF nearly a year ago now, well to cut a very long story short I deteriorated very quickly and in may was placed on the transplant list for a double lung transplant. well over the past week I have deteriorated so much I am almost bed bound, i carnt go out as 15 litres is no longer enough for me. Newcastle are extremely worried now and are now trying ways of.even looking for.lungs of the same blood group but cutting them down to size as I am a very petite girl and lungs thats been coming thru have been too big or not the same tissue type. so really I'm asking for everyones prayers that they find me some lungs quick as I've been given months to live if I don't get them, I have a 7 year old daughter she cannot lose her mum.

39 Replies

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  • Can't say anything just know I am thinking of you.

    Hope your situation improves soon.

  • Dear ejbid l am thinking of you and praying for you. Bless you and your daughter. Xxxx

  • My thoughts and prayers are with you. I hope that you get some positive news soon.

  • So sorry to hear your story ejbid I hope and pray some new lungs become available very soon. My lung problems are nothing in comparison to what you are suffering, I really wish you well. Xxx

  • Are you getting enough help and support at home x

  • Oh yes a huge amount of support, I have my husband and family around me, I have physio come to me twice a week and palliative care nurses once a week and a whole heap of friends who want to help. Oh and I have my church who are constantly praying for me I'm very grateful

  • If you get in touch with adult social services you would be entitled to a personal assistant to help out every day ...You can chose the person yourself if you need any extra help

    Have you considered the option of living donors for transplant x

  • No its not an option as I need two lungs transplanting

  • Oh ejbid I am so sorry to hear how bad things are for you. I can only add to what the others have said and pray that you get your much needed transplant, and that things improve for you and your daughter.

  • Thankyou everyone for their messages of support it means a lot it really does x

  • My thoughts are with you, and I hope that everything goes well . Wishing you all the luck in the world.

    Pam XXX

  • Hi ejbid I am so sorry to hear how unwell you are. I was also diagnosed with IPF in November last year and attend Newcastle RVI for treatment. They have a really good team that look after me so I am sure they will be doing everything possible to help you.

    I hope things improve for you and you are getting all the help at home that you need. It must also be very difficult for your daughter so I hope she is coping alright and getting the support she needs as well.

    I will remember you and your daughter and family in my prayers and pray that you are able to have a transplant soon.

    Take care.

    John

  • Thankyou very much x

  • I am so sorry that things have deteriorated so quickly for you, ejbid. I wish you all the luck in the world that suitable lungs become available very soon. Sending love, hugs, hope and prayers for you and your family. xxxx

  • Hello.

    I wish I could say something meaningful that would make this all better but I won't pretend that I know what to say. You are in my thoughts tonight. Sending you and your daughter much love.

    Cas xx

  • Sending you love and hope ejbid. Hope so much things turn around for you xx

  • Sending love, hope and all best wishes. xx

  • Wishing you well and good luck for a lung match soon. X

  • Hi I don't know what to say, I just hope and pray you get the lungs you need very soon. x

  • Holding you in the light.

  • Sending you strength, hope and love, ejbid. Thinking of you, your daughter, and your family. xxx

  • Thinking of you and hoping you get taht call very soon x

  • Sending love and positivity to you and your family. Stay strong and I hope you get the call soon xx

  • I'm very sorry for your situation I hope u get ur transplant soonx

  • So sorry that things are so hard for you all. But glad you have so much support.

    Love and the gentlest of hugs

    Kate x

  • My thoughts and prayers are with you and your family, I do hope they find a suitable donar for you soon xxx

  • Thinking of use ,wish u all the luck in the world 🌎 xx

  • Just to say I hope you get your transplant very soon. Very glad that you have a family to support you. xx

  • my thoughts are with you ejbid. Stay strong and positive.JP

  • Sending all my prayers to you xxxx

  • Of cause Ejbid πŸ™πŸ»πŸ™πŸ»πŸ™πŸ» I'm sure we all will. God Bless you..πŸ’πŸ’ Val.

  • Oh my! My heart is breaking for you & your family!πŸ’”πŸ’§πŸ’”πŸ’§πŸ’”πŸ’§

    Many hugs & prayersπŸ™πŸ»πŸ™πŸ»πŸ™πŸ» For you & your family......πŸ’§πŸ’”πŸ’§πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»

    I cannot fathom what you & your family are going through & I won't pretend all will be well as I'm very well aware that what you need is very critical. My son needed a double lung & heart transplant years ago but is no longer a candidate. The wait is agonizing to say the least. It is my hope that you & your daughter live each day to fullest & in the best ways possible!

    I hope above all that you get that call!

  • So sorry to hear your news - Hope a solution will be found for you soon. Sending hugs and praying for you xx

  • I am praying for you ejbid.

  • You are in my thoughts and prayers Ejbid, much love to you and your little girl.Hope your prayers are answered very soon. πŸ’žπŸ™ huff xxx

  • Hello ejbid

    So very sorry to read your situation update and wish with all my heart that something happens to help you

    Thinking of you

    Graham

  • I'm very sorry to hear your health has deteriorated so quickly. I wish with all my heart that you get the transplant you need and I'll keep you and your family in my prayers.

    For me, this is a prime example of why the organ donor scheme should be made opt-out, rather than opt-in. Such a simple change could save so many lives.

  • You are most definitely in my thoughts sending best wishes xxx

  • So sorry to read your deteriorating so quickly!!! I can't imagine your distress!!! Pray you get a match soon!! πŸ™πŸ˜˜

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