Organ Donation Law Changes

After many(!) weeks in hospital, I got to spend six days at home! Yes, six whole days! Within two days of coming off the ivs, my sinuses flared up again and as per usual started infecting my chest. At this time I was connected by BBC Radio Oxford to give to see if I would be willing to give an interview. This would be a follow up to my initial interview with Kat Orman, updating them as to how I am and more importantly how I thought the changes in the organ donation law would affect me.

It would be a much shorter interview this time, and I’d just speak to them by phone. It was with Kat Orman who I’d previously been a guest of on her show. This put me a little at ease as it was someone I knew who would help me out if I was struggling.

To start with I absolutely hate talking on the phone! I’m not sure why this is, but I have heard other people with cf say the same. I find it makes me more breathless than talking in person does. I’m not sure why as I seem to have quite a loud voice anyway?!

Interview with Kat Orman

I was told I’d be on at a certain time, so was expecting the call. However, my carer came exactly as I was waiting for the song to finish. I panicked and let them in, then ran upstairs. I still don’t know why I did this as I started the interview completely out of breath and it only got worse!! Kat could hear I was struggling but when we listened back you couldn’t really tell.

They asked me for an update on my health and how I was doing. I explained about my ongoing sinus issues and how they have been affecting my chest so badly. Then they asked me about the changes in the organ donation law and how it may affect me.

Changes in the Organ Donation Law

The law for organ donation is changing in England and Scotland in May from an opt-in system to an opt-out system. This means that previously it was assumed you weren’t willing to be a donor after your death unless you had opted-in (on the organ donor register). The new law will mean it is presumed that you would be willing for your organs to be used after your death unless you had opted out and added yourself to a list.

They asked me my hopes for this – which would be that the very sickest people waiting for a transplant would how a higher chance of getting on rather than dying waiting. I include myself in that category.

Kat also asked me how a transplant would change my life. I find this a difficult question to answer, especially in these kinds of interview situations where I want to be as positive about organ donation as possible.

How Would a Lung Transplant Change Your Life?

In an ideal world, after a transplant, my life would change unrecognisably. I would have energy and my body would allow me to do all the normal things I’ve been missing out on over the years. Being able to laugh without following it with a coughing fit! To not be tied to treatments that take hours and leave me exhausted.

But I’m not naive – transplants carry a lot of risks and the recovery is tough. 10% of people don’t wake up from the operation. And 50% of people will still be alive five years after a transplant. They aren’t the best odds!

And of course, there is the constant worry of rejection and infection.

A huge regime of meds and regulations to follow.  Most people don’t realise that after a transplant, because of the immunosuppressants required to stop your body rejecting the organs, you are at a greater higher risk of infection. So you have to be super-strict about hygiene and avoiding sources of infection.  After a transplant your immunosuppressed so your naturally more susceptible to catching viruses. You have to alter your diet, ensuring that the food you eat is cooked all the way through or pasteurised. No sushi or raw seafood; meat must be cooked well-done. My ideal meal begins with oysters, followed by blue rib-eye steak. This will not be happening post-transplant!

They say that you are swapping one set of problems for another with a transplant. Obviously there are potentially a great many benefits, the first being you are alive, but it’s too easy to say it’s a cure-all. So, I give a condensed version and say I hope my life will change dramatically for the positive!

Will the change to opt-out organ donation have a big effect?

The other question I get asked a lot is if the change to the opt-out system will affect me and how. It’s difficult to know.

The main issue is that in either the opt-in or opt-out scenario, the donor’s loved ones will still ultimately have the final say over the decision. So someone may have opted-in, but their next of kin can still say no to the organs being used.

This is a great article from the BBC. It is a few years old but the message is still clear
In the five years 2012-2017 over 500 registered donors could not be made available for transplant in the last five years because of objections from relatives.
Hundreds of families block organ donation”

There is not just the shortage of donated organs to consider, there is the resource requirement for each operation. On each side there will need to be a team of surgeons – that is to remove the organs for the deceased person, and to transplant them into the recipient. Then there needs to be an available intensive care bed for the person after the transplant.

Talk to Your Loved Ones – Share Your Wishes

The main message I tried to pass on was that whatever your wishes, talk to your loved ones. So that if the worst happens to you, they will be able to honour your wishes and make the decision you wanted.

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 over 9 out of 10 when the decision to be an organ donor is known. (NHS Blood and Transplant).

Thanks again to Kat and her team for allowing me on to her program and their continued support.