Daily Express today very interesting story... - PBC Foundation

PBC Foundation

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Daily Express today very interesting story how Ewa Stuckey made medical history after donating part of her liver to her mum who had pbc

chrissey7 profile image
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both are now well after major surgery how remarkable and what a brilliant read this was at the Queen Elizabeth hospital in 2011 the doctor stated the liver has an incredible ability to regenerate

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chrissey7 profile image
chrissey7
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boneytoys profile image
boneytoys

Ive always been told that option is out for us and Im sure my children have breathed a sign of relief!!

Be interesting to see what follows. I also saw arguments early on that doctors in the UK felt that getting partial transplants confuses the whole issue of liver donations and that by enlarge they preferred to go with liver organ donation/ transplant. I will watch with interest other comments.

boneytoys profile image
boneytoys

just read the story. To be honest Im amazed they did it. What a brave and beautiful daughter.

Ewabasia profile image
Ewabasia in reply to boneytoys

Thank you for your lovely comment.... it was certainly a life changing experience for all concerned! The main reason for the article was through the PR department of the hospital (QEII Birmingham) to raise awareness that live liver donation was a viable option in the UK and an area where real differences can be made to patients if more donors came forward. There is a traditional belief that cadaveric livers are transplanted in their entirely into recipient adults, but in fact whenever possible these are also divided, with the larger right side (that which I donated) going to an adult and the smaller left side going to a child, hence 2 people's lives can be saved with the gift of one donor organ.

My Mum was in the advanced stages of PBC and close to the end and so in fact a donor organ was not considered suitable for her as, sad as it is, the person from whom it came would have died of something and hence the organ would have suffered some stress and been less functional than that of a healthy individual. The fact that a live transplant has both patients in theatre simultaneously reduces the transplant time significantly so that the organ is effectively removed, reconstructed and implanted within the shortest possible timescale. This plays a fundamentally positive part in achieving a better eventual outcome for the recipient.

As with many things in life, God presents people with opportunities... whether you take them is up to the individual. I personally am very glad that I made my leap of faith as I have been rewarded with the best possible gift, that of extra time with a special parent.

boneytoys profile image
boneytoys in reply to Ewabasia

so good to hear from you direct.....it was a profound leap of faith you took and very humbling for all us PBC mothers. Im not sure I could ever expect such a gesture from my children (3) but who knows.....now

Ewabasia profile image
Ewabasia in reply to boneytoys

Thank you ;-) Wishing you well with your own situation... none of us knows the future, perhaps your own will be much brighter and far more blessed than you imagine x

littlemo profile image
littlemo in reply to Ewabasia

Wow you are an amazing woman and the most special daughter ever I am sure to have done what you have done. I went to a liver support group meeting about a yr and a half ago and the question of live donation came up and the response from the Hepatologist from London was that they do not like to take live donors as the risk of death or serious complications to the donor are too high so I thought that this would never be an option for me. Incidentally I am 42 with a 5yr old and a 16yr old and am not sure if my mother was the one with advanced PBC ( as opposed to me though I am pretty stable thankfully at the mo) that I could have made the very brave decision you did in being so generous in giving your mum the gift of a new life. Hope and pray you both continue to keep healthy and enjoy living and the beautiful mother daughter relationship you have with each other. God Bless you and reward you for such a selfless act.xoxo

Ewabasia profile image
Ewabasia in reply to littlemo

Thank you Littlemo ;-) This area of live donation is certainly one that will become more prominent as time passes and I really feel that positive advances will be made to the benefit of many people.

For me personally it filtered down to a series of questions as time went on and we realised that this procedure was possible for us as a compatible organ couple. Firstly, after I knew that it could be done, I had to ask myself whether I would be able to live the rest of my life whilst watching my Mum suffer and die knowing that I could have made a difference and didn't because I was too afraid of the possible consequences and implications for myself. If I didn't take the opportunity to help I would have to live with this knowledge for the rest of my life... I couldn't do that so actually I chose what was for me, emotionally anyway, the easier option. Secondly, like you, I also have 2 youngish children, now 12 and 15. We discussed this together in depth, even addressing my possible death (not easy), and I did tell them that if they didn't want me to do it, I wouldn't. To their immense credit they both thought I should follow my heart and do what I thought was right; an incredibly brave and mature thing for children their age to say. And finally, and most importantly, I have a strong faith in the goodness of God. I truly believe that if you do something which is motivated by love then it will be blessed. I am very fortunate to have good friends and a loving family around me, to belong to an inspiring church and to have been supported throughout this experience by lots of people in many different ways, including prayer. I know these days that society doesn't seem to deem it 'fashionable' to believe in God but miracles only happen when you open the door and let Him in.

Someone said to me that I chose my Mother over my children, which is really not true. What I did was choose my faith over everything else in the knowledge that whatever happened some good would come out of this situation in some way or other. Taking the leap not knowing where you will land and not seeing the path ahead is what faith is all about ;-)

Wishing you well for the future - God Bless you too! xxx

littlemo profile image
littlemo in reply to Ewabasia

Amen to that and I too have a very strong faith in God and it has gotten me through many tough times in my life. Also congratulations on having two very wise insightful children who helped you make your decision you are truly blessed with your family and am entirely sure you will be rewarded for your selfless brave act and am sure just having your mum around and seeing her healthy and happy is reward in itself. God Bless take care. x

Ewabasia profile image
Ewabasia in reply to littlemo

Thank you! And to you x

chrissey7 profile image
chrissey7

yes i totally agree at least pbc had some publicity i wonder if the lady in question belongs to the foundation

marie80 profile image
marie80

WOW! I was told that wasn't a possibility! Could someone attach a link for all of to read about it? Thanks!

SC49 profile image
SC49

express.co.uk/posts/view/36...

I hope that link works. It's a great story and well done to Ewa for making such an amazing decision

Pandemonium profile image
Pandemonium

" This autoimmune disease, which is totally unrelated to diet or alcohol" Hurrah!!!! Maybe it'll get through to people's brains one day!!

Gra79 profile image
Gra79

That's great to hear Pbc & liver live donation being publicised and that it was successful.

It has been done before-in scotland 18 months ago now, mother donated to her daughter. Both are doing really well, no other liver was available or suitable

For those of you who were told its not an option, don't rule out if one is willing to donate to extend your life try accept, if medically safe for both of you of course, as the doners liver regenerated to almost normal size!!

If we are to have an illness I feel the liver is prob the best organ to be ill with as its self healing is amazing no other organ can do this really!

Gra79 profile image
Gra79

express.co.uk/posts/view/36...

mojo62 profile image
mojo62

Was very interested to read this as I didn't realise this was possible. Ewabasia you are a very brave lady. I don't know how others feel but this i know I think that I would feel uncomfortable about having a living donor in case something did go wrong and wouldn't like my family to feel under any pressure to volunteer. I am still hopefully some time away from needing a transplant but I guess I may feel differently if I was in that position.

Ewabasia profile image
Ewabasia in reply to mojo62

Thank you ;-) You are quite right in what you say about how you would feel if you were the recipient. My Mum initially didn't want to do this at all and actually didn't think I would make it through all the medical tests! At the start, she really did just go along with me. However, as we got to the end of the process and the operation became a reality and the date for the procedure was set she had a total panic about it and then had so many emotional issues to deal with. Like you say, mainly the guilt if something went wrong. However, it came down to a simple choice... don't have the operation and almost certainly die in the short term, have the operation and possibly live for quite a number of years. So she stepped away from the decision because she just couldn't deal with it and said she would go with whatever I decided for us... and so I did ;-)

It is certainly is true that in life you never really know what you will do for certain until you find yourself facing your future and having to decided which way to go.

Wishing you well x

Flymccoll profile image
Flymccoll

Ewbasia

I read this with tears in my eyes - my Mum died last year, she had PBC amongst other health problems and I too have PBC. I am now a granny and a mother to two beautiful daughters and the chance to watch them all grow up is a gift most precious - a gift you have given to your Mum with love in your heart - you are truly blessed with such wonderful children and I wish that you enjoy your time with your Mum and with your children, hold them close for every moment of life is precious and you are one special person and deserve all good things that come your way xxx wishing you all good health xxx

Ewabasia profile image
Ewabasia

Thank you :-) for your kind words. I am very sorry to hear of your loss and the fact that you are also suffering from this unfair illness. You are completely right in that the chance to spend time with precious people in our lives is something that many take for granted and which is only sometimes properly appreciated when time in limited.

May God bless you richly in your own life; I know that for me this whole experience has been a wonderful journey in many ways which has enhanced my life and actually given me back far more in return than the half liver that I gave away. Wishing you joy, good health and much happiness for this coming year and the future x

suemac1 profile image
suemac1

I have read your story and agree its a brave brave decision i myself have pbc an was told i have end stage liver failure my son who is 25 has said he would do the live liver donation it is me who is finding this extremly difficult he keeps on at me to speak to my consultant but the thought of putting him through major surgery terrifies me at the moment i feel i could,nt deal with anything happening to him its a hard choice but my son sees it as his right, maybe one day i will be able to but right now i struggle with his choice maybe because i am his mum an want to make him be safe i am not sure .i am sure your mum must have had the same thoughts . i think you are both so brave an maybe one day i will find the same courage xx

Ewabasia profile image
Ewabasia

Hi Sue, please be encouraged by the love of your son and his willingness to consider this operation for you. I know from what my own Mum said to me how incredibly hard it must be for you and the many conflicting emotions that you must be going through. Your decision in many ways is harder than his as you are his Mum and will always feel responsible for his welfare; on the other hand, he loves you enough you want to do this for you. Perhaps you should explore the possibility together and let him have the initial tests, as he may not be suitable as a donor, for whatever reason, and then at least you will know if it is possible or not.

Sometimes in life even the most negative illness can carry a hidden blessing and you may find that this brings you even closer together with your son and as a family. If you believe in God and have a faith or have friends who do, it would be good to ask someone to pray for you, as miracles are often just ordinary people stepping outside the boundaries of what is conventionally acceptable in the belief that they can made a difference.

Wishing you both well and praying for a good outcome for you xxx