I am the producer for this piece and it would be the presenter asking the questions with a live guest.

Interviewing organ donor Adrian Whitaker and recipient Hannah Whitaker, who is a York student, about how organ donation changed both their lives in like of the ‘opt out’ scheme launching from 20^th May 2020.

 

‘Opt Out’ Scheme:

• The law around organ donation is changing in England. This means that from 20 May 2020, all adults in England will be considered an organ donor when they die unless they had recorded a decision not to donate or are in one of the excluded groups.
• Last year, 408 patients died in the UK on the transplant waiting list.
• The changes will not come into effect immediately to make sure there is plenty of time to inform people about what is changing. This will give people time to choose if they want to be an organ donor and to share this decision with their family and friends.
• This system does not include children under the age of 18.
• Families will always be involved with the process and religion and faith will be taken into account.
• A form can be filled out on line if you wish to opt out of organ donation.
• This is often referred to as ‘Max and Keira’s Law’ because 9 year old Max received a heart transplant from 9 year old Keira who died in a car accident. Her father said that she had the kindest of hearts and knew she’d have wanted the chance to help people. Max’s family have been campaigners for the ‘opt out’ system.
• Some people may be ineligible to be a donor due to the age of the organ e.g. if they’re old and the organ isn’t working to it’s full potential anyway, or if they have pre-existing conditions that affect certain organs like cancer or other chronic diseases.
• There is a time limit on how long organs can live outside the body. Kidneys can live up to 30 hours, less than 12 hours for a pancreas or liver and less than 6 hours for heart or lungs.
• When asking around, most people agreed that the ‘opt out’ system was the best thing that could happen for people needing transplants because it means that more people can have their transplant quicker if everyone donates after death. A couple people said that the thought of having your organs taken out is scary because we obviously don’t know what happens after death but knew they can save lives by doing so.

 

Background Information:

Adrian’s Experience –

Adrian Whitaker donated his kidney to his daughter Hannah in May 2012 after she was diagnosed with full renal failure. He said he felt like it was his duty as a father to help his daughter because he hated seeing her in pain and not able to live her life properly whilst she was on dialysis when he knew there was a possibility he could do something to end her suffering. Adrian said it makes him feel good on the inside that he was able to let Hannah continue her life and is one of his best achievements in life. He said the feeling of donating an organ was very rewarding because he knew he’d saved a life by doing so, and recommended if people are healthy and want the overwhelming feeling of knowing they’ve saved a life, to do the same. He continued to say that after death, you don’t need your organs so making sure they get donated is the best thing to do because in your death, you could be giving the gift of a new life to someone.

 

It took him five weeks to recover from the operation and a further two weeks due to an infection but he said it was well worth the short amount of suffering he went through to watch his daughter begin to her life to the full and watch her turn into a young adult. Adrian talked about the small implications he’s had since donating his kidney and said the only real problems he’s had is fluctuating blood pressure but he already had high blood pressure before donating so doesn’t find it too hard to handle. He also has toxin level issues but these are monitored and under control.

With the ‘opt out’ system, Adrian said he thinks this should have been obligatory years ago. The opt out scheme is a good thing because it means so many more people will have the chance or transplant. Unfortunately, when people die and they aren’t a registered organ donor, their organs can’t be taken and by the time their death has been recorded or someone has been in touch with the family to ask, it’s too late as the organs can only last so long.

Hannah’s Experience –

Hannah has been living her life to the full since receiving her transplant from her Dad. She needed the transplant due to complete renal failure at 11 years old but the doctors could never work out why this happened; it could have been due to her own kidneys being deformed from birth but they are unsure.

She was on two different types of dialysis for 9 months before she had her transplant; one which she would have 3 days a week for 3 hours at a time making her miss 3 half days at school and for this she would have to go to the LGI and be connected to a dialysis machine by tubes permanently fitted in her body just below her collar bone which allowed her blood to be taken out, cleaned by the machine and put back in. She would have to sit still during this time but would do school work, draw and watch films. This happened for 4 months before she had an operation to fit a tube in her stomach so she could do dialysis at home. This would take place every night and the machine would put fluid into her stomach through the tube, leave it there so it could collect the toxins and then drain the fluid out.  Fluid would be left in her stomach while she was at school and would be drained when she got home, before starting this process again when it was night. She was only allowed to consume 250 millilitres of fluid at this time because if she had any more it could lead to the heart working too hard and possible heart attack, this fluid included milk in cereal, watery fruits etc.

 

She was 12 when she had the transplant at the Leeds General Infirmary and has had no major problems with her transplanted kidney since. Adrian had his kidney taken out in St James Hospital in Leeds as this was the adult hospital whereas the LGI specialised in paediatrics so Adrian’s kidney had to be put on ice and driven to where Hannah was. Kidney’s can survive on ice outside the body for up to 30 hours if on ice and the hospitals were a short 8 minute drive away from each other so Hannah was told when the kidney had arrived and had been prepared for this so that she could go straight into the operating theatre.

It has been eight years and she has to take daily medication which includes immunosuppressants to stop the kidney rejecting and drinks three and a half litres of water a day to make sure the kidney is constantly hydrated. She will have to take these medications for the rest of her life. Unfortunately, due to how young she was when she received her transplant, she will have to have another one in later life due to the kidney not being able to work to its best ability in a different body. She has come to terms with this and is just working on keeping her transplanted kidney healthy at the moment. Hannah was in hospital for two weeks after her transplant and was very happy to no longer require dialysis which she said was an uncomfortable process.

Hannah was asked to speak at an event for the 4000^th kidney transplant in Leeds. There were four speakers who all had a different experience with transplantation. With Hannah being the youngest at 15 years old, she was the representative for the paediatrics in Yorkshire and spoke in front of over 200 doctors, nurses and health care professionals.

 

 

 

Hannah and Adrian are now very close and feel as if this has given them an extra special bond.

In regards to the ‘opt out’ system, Hannah thought it should already be in place due to the length of the transplant waiting list and people often dying waiting for an organ that could have potentially been given from a deceased donor if they were an organ donor.

Due to the coronavirus outbreak, Hannah and other people with underlying health conditions have been told to isolate for a minimum of 12 weeks. A few weeks in, the ‘high risk’ category were told they were only allowed to open a window meaning they couldn’t sit in their gardens let alone leave the house. Recently they have been told they are now allowed to go outside but should get food deliveries to keep them as safe as possible and avoid any contact with people outside their household as these people have more chance of contracting the virus. In Hannah’s case, she is on immunosuppressants to make sure her body doesn’t reject her kidney meaning her immune system cannot fight anything itself and she can usually be hospitalised for a normal infection. Adrian is not classed as high risk but is also taking all the precautions necessary to protect himself with the fact he only has one kidney.

 

Possible Questions for Presenter:

For Adrian –

• What organ did you donate and when?
• What made you become an organ donor?
• How do you feel having donated an organ?
• How long did it take you to recover after the operation?
• Has there been any implications since donating your organ?
• What would you say to someone contemplating organ donation, whether it be before or after death?
• Why should people sign up to donate an organ, whilst the ‘opt out’ system is yet to be put in place?
• What is your opinion on it being obligatory to become an organ donor after death with the ‘opt out’ system?

For Hannah –

• Why did you need a kidney transplant?
• When did you have the operation and where?
• What effect did it have on your everyday life when you were ill?
• How do you feel about your dad donating his organ?
• What difference has the transplant made to your everyday life (what can you do now that you couldn’t do before)?
• How do you feel about knowing that you will have to have another transplant one day?
• What are your thoughts on this new legislation?

 

Presenter Cue:

The law around organ donation is changing in England. The new ‘opt out’ system, also known as ‘Max and Keira’s Law, will commence from 20th May 2020, meaning all adults in England will be considered an organ donor when they die unless they had recorded a decision not to donate or are in one of the excluded groups. Today, I am joined by Adrian and Hannah Whitaker to talk about their experience with organ donation and how it changed their lives, as well as what they think of the new law.