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Life on the organ transplant waiting list

The new law around organ donation means new hope for patients

Laura Beattie just wants to be able to do the simple things in life, “Get changed, dry my hair without being breathless … take my dogs out.”

Laura, 31, from Manchester, is on the organ transplant waiting list. She has cystic fibrosis and has been waiting for a lung transplant since August 2018.

Faizan Awan, who lives in Blackburn, Lancashire knows only too well what life on the transplant waiting list is like. He is currently waiting for his third kidney transplant, having received transplants at the age of three and 13.

A shortage of donors from the Asian community means he has been told he may have a ten-year wait. Until then, he is reliant on a dialysis machine.

New organ donation law

The law around organ donation is changing in spring 2020. All adults in England will be considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate or are in one of the excluded groups.

The law is being changed to help save and improve more lives; for Laura and Faizan it brings fresh hope.

Faizan is waiting for his third kidney transplant(Picture: Faizan, from Blackburn, is waiting for his third kidney transplant)

Faizan says, “I hope the new law is a catalyst for more people to talk about and share their decision with loved ones about organ donation, especially people from the black, Asian and minority ethnic community who tend to shy away from such a topic as they believe or assume that organ donation is not permissible.

I hope this law encourages people to seek out all information they need to make an informed decision.”

Laura says, “I know that it will bring so much hope to people who are on the list and to the families of those waiting. Many lives are lost waiting for a transplant and if that wait for one can be shortened even just a little bit, it can save lives.

“I am extremely happy that this change in the law will come into force and help so many more people who are in need of a transplant, who may have died waiting before.”

Both Laura and Faizan look ahead to a life off the transplant list.

“Although I know that recovery is not instant, I know I will be on the road the recovery and a better quality of life,” Laura says.

“The gift of an organ is life-changing,” Faizan says. “Obviously there will always be medication and side-effects, but considering you get a new lease of life, it’s worth it. I’ll take the side-effects.”

Start a conversation

Families are always involved before organ donation goes ahead and will continue to be once the law changes. At present, fewer than half of families agree to donation going ahead if they are unaware of their loved one’s decision to be a donor.

This rises to more than 9 out of 10 when the decision to be an organ donor is known.Laura has been waiting for a lung transplant since August 2018

Laura has a clear message, “Everyone has a choice and, whether they want to be an organ donor or not for various reasons.

(Picture: Laura has been waiting for a lung transplant since August 2018)

I completely understand and wholeheartedly respect people’s decisions. But start the conversation and speak openly about it.

Starting the conversation about organ donation, whether people want to be a donor or not, is always a good thing.”

A donor’s faith and beliefs are always respected. The specialist nurse for organ donation will discuss with the donor’s loved ones whether there are any specific considerations relating to their faith or beliefs that need to be respected before, during or after the donation process. 

“I think the issue of organ donation affects and can affect anyone and everyone at any time, and to be able to help those less fortunate when passing away can only be a good thing,” Faizan says.

“Knowing that even after passing away I’m still helping people who are suffering I feel would be a great blessing.

In the Quran it says to save the life of one person is to save the whole of humanity, so we can be sure this is a good thing.

“Everyone waiting for an organ transplant is at different point in their lives,” Laura says.

“Whether that be a young child waiting for a heart transplant, an older person waiting for a liver transplant or a young person waiting for a lung transplant, all with uncertain futures.

One thing that is certain though is that donations do and will save lives.”

 To read more about the law change and what it means for you, please visit organdonation.nhs.uk.