Update: Hi all, I'm not sure how many... - Lung Conditions C...

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Update

38 Replies

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.

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38 Replies
Bevvy profile image
Bevvy

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

Hope your situation improves soon.

sassy59 profile image
sassy59

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

CDPO16 profile image
CDPO16

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

Mandy6513 profile image
Mandy6513

Are you getting enough help and support at home x

in reply to Mandy6513

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

Mandy6513 profile image
Mandy6513 in reply to

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

in reply to Mandy6513

No its not an option as I need two lungs transplanting

Issma profile image
Issma

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

Pam1952 profile image
Pam1952 in reply to

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

Pam XXX

PastMeBest profile image
PastMeBest

Hi Hidden 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

in reply to PastMeBest

Thankyou very much x

Tee1008 profile image
Tee1008

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

Caspiana profile image
Caspiana

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

O2Trees profile image
O2Trees

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

Toci profile image
Toci

Sending love, hope and all best wishes. xx

Ef0lumps4 profile image
Ef0lumps4

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

Pentreath profile image
PentreathVolunteer

Holding you in the light.

Watfordgirl profile image
Watfordgirl

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

MarieW-F profile image
MarieW-F

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

Bagpuss1972 profile image
Bagpuss1972

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

Katinka46 profile image
Katinka46

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

Magpuss profile image
Magpuss

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

Shona68 profile image
Shona68

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

clematis5932 profile image
clematis5932

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

JP1954 profile image
JP1954

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

Tinkz profile image
Tinkz

Sending all my prayers to you xxxx

24811 profile image
24811

Of cause Ejbid 🙏🏻🙏🏻🙏🏻 I'm sure we all will. God Bless you..💐💐 Val.

Rayvenjade profile image
Rayvenjade

Oh my! My heart is breaking for you & your family!💔💧💔💧💔💧

Many hugs & prayers🙏🏻🙏🏻🙏🏻 For you & your family......💧💔💧🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

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!

Dedalus profile image
Dedalus

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

sarcoid123 profile image
sarcoid123

I am praying for you ejbid.

hufferpuffer profile image
hufferpuffer

You are in my thoughts and prayers Ejbid, much love to you and your little girl.Hope your prayers are answered very soon. 💞🙏 huff xxx

Michele-Cat profile image
Michele-Cat

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.

Salfordlass profile image
Salfordlass

You are most definitely in my thoughts sending best wishes xxx

Pmb6 profile image
Pmb6

So sorry to read your deteriorating so quickly!!! I can't imagine your distress!!! Pray you get a match soon!! 🙏😘

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