Not one donor but TWO!!!: Update on my... - Lung Conditions C...

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Not one donor but TWO!!!

Offcut profile image
55 Replies

Update on my son. He has had a really rough time with the last lot of treatment this time. Made worse with my own infection and not being there for him, only in spirit!

They have now allowed him home with regular visits to his local hospital for tests and line care. He was called into the Heartlands hospital to talk over the transplanting procedures to be given some good news that they have found Two compatible donors one in the UK and one in the US. The UK Donor is a woman and matches his weight better so they will choose her first.

All looking great but it seems that they may have to do radio therapy to make sure he is flat and has no leukaemia cells. The person is away when they would of done this so they may have to postpone until they are back! But fingers crossed it may be some time after January ish?

It will still be some months after all this before we will know it has worked and he will be fit enough for work.

Fingers Crossed!

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55 Replies

Wonderful news! I'm so pleased for you all x

Offcut profile image
Offcut in reply to

Thank you

newlands profile image
newlands

Hello offcut. Do hope all goes well for your son ,it's a terrible time you and your family are having it musnt be helping your health

Take care

Dorothyxx

Offcut profile image
Offcut in reply to newlands

Feeling better than a while then this stupid Fog came and I am struggling!

But happy with my son's news :)

Ohtwo profile image
Ohtwo

Brilliant news. I wish you all well. Take care

Offcut profile image
Offcut in reply to Ohtwo

Thanks

That's very good news Offcut fingers crossed for him. I hope you are feeling better as well x

Offcut profile image
Offcut in reply to

so good to hear the news but the fog has made me go back a step or 2

sassy59 profile image
sassy59

Good news Offcut and keeping everything crossed for your son. Hope you are feeling better too. xxx

Offcut profile image
Offcut in reply to sassy59

It's great news, strange how something good can bring on the tears?

jenss profile image
jenss

Good news Offcut hoping for great success for your son. Look after yourself Offcut. Best wishes to you allxxx

Offcut profile image
Offcut in reply to jenss

Thank you. PMA always.

SawyerTired profile image
SawyerTired

That is wonderful news but now you and he must be even stronger and more careful.

The transplantation dose of chemo is even stronger than anything he has had to date. When they say FLAT they mean they are going to kill all the fast multiplying cells, good or bad.

They take him to the very edge and then use the replacement healthy stem cells to kick start his system again. (A bit like stalling a plane in full flight than starting it up again)

They will know fairly quickly if it takes ( remission) but as to whether the cells continue to reproduce correctly ( continue in remission) is the unknown factor combined with how his body accepts / handles the "foreign cells" hence the transplantation drugs.

He must take this time to relax and build up his strength and weight again for the next fight. !

Stay strong and positive, it can be beaten.

Offcut profile image
Offcut in reply to SawyerTired

You are so right he has lost 2 stone so far but he has been given the food no list and basically been told to eat everything else in excess to get some weight on. Cheese on everything ;)

rubyred777 profile image
rubyred777

Great news Offcut! I'm so happy for you and your family. One day at a time. Slowly but surely, you'll get there.

Fingers crossed everything goes well.

Rubyxx 😊 😊

Offcut profile image
Offcut in reply to rubyred777

The worse part is his money runs out when the treatment starts and he needs to convalesce?

mmzetor profile image
mmzetor

great news hope every thing goes well

Offcut profile image
Offcut in reply to mmzetor

Thanks

Good news offcut, fingers crossed for u all. Take care all Xx Sonia xx

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Offcut in reply to

Thank you

Very good news and two donors even better, it's been a terrible time for you and your family, but your turning that corner now,

Sending you all my very best wishes.

XxSally

Offcut profile image
Offcut in reply to

It has been our Annus Horribilis. Next year we hope it will turn around for him.

Thats wonderful news,but the waiting begins I guess.

No wonder you have been reduced to tears,all that waiting & wondering,would take its toll,especially if not feeling the best yourself.

Wishing you all the best,take care,

Hugs to you all,

Wendells xxx

Offcut profile image
Offcut in reply to

Thanks. hugs back.

Toci profile image
Toci

Good news indeed, oc. I hope you are looking after yourself too. x

Offcut profile image
Offcut in reply to Toci

Chest still feeling tight but lot better than 3 weeks ago. Thank you.

Magpuss profile image
Magpuss

Very good news, hope all goes well for you and your son from now on. My very best wishes to you, for 2016

Offcut profile image
Offcut in reply to Magpuss

Thank you

Jessy11 profile image
Jessy11

Wonderful news Offcut! I wish you & your son all the best for the future.

I'm so happy for you, hope everything goes well

Take care & keep well 🌻

Offcut profile image
Offcut in reply to Jessy11

It's a time thing now, but we are all hopeful

clematis5932 profile image
clematis5932

Glad to hear the good news for your son.

Offcut profile image
Offcut in reply to clematis5932

Thanks

Lyd12 profile image
Lyd12

what a hard time for your family. Now you have been given some hope, I guess they wouldn't do it if there wasn't a good chance of success. Do wish you all the very best, and look forward to the day when you tell us your son is on the mend. Keep strong, we are all praying for you. Love Iris x

Offcut profile image
Offcut in reply to Lyd12

AML is not a good thing to get but it is one of the treatable ones. With him having the kit gene has added more long term issues but it is going the right way for him.

RibvanRey profile image
RibvanRey

Thank you as always for sharing your son's progress, and yours as well. It makes it easier to focus our thoughts and prayers on both of you and your family. I know how hard it is living with a loved one undergoing chemo and wish you all the strength it needs to fight though this. You are always in our thoughts Offcut. Regards Rib

Offcut profile image
Offcut in reply to RibvanRey

Much appreciated, everyone on here are so good thank you.

Lynda1952 profile image
Lynda1952

Such good news. Hope all goes well. Will be thinking of you all. Take care xx

Offcut profile image
Offcut in reply to Lynda1952

Thanks

casper99 profile image
casper99

Great news Offcut !!! We'll all be routing for him. xx

Offcut profile image
Offcut in reply to casper99

It is just going to be the longest weeks but with hope at the end?

Good news. I will be thinking of you through the waiting.

Offcut profile image
Offcut in reply to

It will seem like an age I am sure.

Dedalus profile image
Dedalus

All the good news together Offcut - that's fantastic - it will be wonderful for you to be able to see him soon too. Fingers crossed the tests all come back fine and the transplant can go ahead. Am really so very happy for you (Christmas come early eh!). xx

Offcut profile image
Offcut in reply to Dedalus

Just the waiting now but I can do that?

Sheilab123 profile image
Sheilab123

Brilliant news Offcut! So pleased for you and yours. xx

Offcut profile image
Offcut in reply to Sheilab123

Thank you

freefaller profile image
freefaller

That is wonderful.

Offcut profile image
Offcut in reply to freefaller

Sure is

Fingers and toes crossed - lots of love xxx

Offcut profile image
Offcut in reply to

Thanks

onamission profile image
onamission

Offcut that's fantastic news I'm so pleased keep us all posted

Offcut profile image
Offcut in reply to onamission

Seeing him this afternoon :)

onamission profile image
onamission in reply to Offcut

It will be the best Christmas for your family when will the donor be back and how long will it be before he gets his transplant.

Offcut profile image
Offcut in reply to onamission

We not 100% sure but from Jan onwards is best guess now?

tomhatha profile image
tomhatha

here is a little info and it is good re transplant. I hope it helps and re assures people.

New technique bodes well for lung transplant success rate

•Nick Lavars

•September 20, 2015

The EVLP-treated lungs showed little signs of rejection, while the lungs transplanted without the treatment all showed signs of severe rejection (Credit: University of Manchester)

Our bodies have developed a particularly unforgiving immune response when a threat is posed to our lungs. This is great for warding off illness, though is something of a double-edged sword regarding transplants, with the recipient's body often perceiving the incoming organ as a threat and seeking to destroy it. But a new approach known as ex-vivo lung perfusion (EVLP) promises to boost the success rate of such procedures, by both repairing unhealthy donor lungs that wouldn't otherwise make the grade and reducing the chances of rejection once it is implanted.

One of the main culprits behind the body's aversion to new lungs are the donor's white blood cells, known as leukocytes. Once the organ is implanted, these migrate into the recipient's body where the immune system interprets them as dangerous and sets about attacking the organ, something known as acute rejection. The current approach to countering this is immunosuppression, where the patient receives lifelong drug treatment to inhibit activity of the immune system. The problem is that this invites a whole other set of risks, such as heightened susceptibility to infections and cancer.

EVLP is an experimental technique that is currently being pursued by researchers around the world as a means of improving availability of lung transplantation therapy. It sees the donor's lungs kept alive outside the body in a plastic dome for three to four hours, where they receive a supply of blood and nutrients. This can reverse injuries, remove excess lung water and ultimately make damaged lungs more suitable for transplantation.

A team of researchers from the University of Manchester and Sweden's University of Lund carried out a study involving the transplantation of pig's lungs. Some were subjected to EVLP treatment, which in this case also involved the removal of leukocytes, while others where transplanted without the treatment as per normal. The recipients were then monitored for 24 hours.

The EVLP-treated lungs showed little signs of rejection, while the lungs transplanted without the treatment all showed signs of severe rejection. Because the lungs were only monitored for 24 hours, the scientists are not yet clear on the long term effects of the approach, but say that even delay in the onset of acute rejection would be advantageous in facilitating more successful transplants. They are also hopeful that the approach may complement new immunosuppressive drugs under development.

"Aside from the benefits shown in this study, it is possible that EVLP could be used to deliver drugs before the lung is implanted so that the patient’s immune system does not recognize the transplanted organ as harmful," says the University of Manchester's Dr James Fildes, leader of the study. "EVLP opens up new possibilities in one of the most problematic areas of surgery."

The research findings were published in the American Journal of Transplantation.

Source: University of Manchester

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