The below was suppose to have been published by an online publication. It never happened, so I thought I'd publish it myself!

Do you have questions for me? Why not ask it below... I'm not the only one in this position, so if there is something my experience can help you with - get in touch, education and understanding can only serve to improve the status quo. Let's educate one another and tackle the taboos that exist in society.
Q1: You have joined forces with the ACLT (African Caribbean Leukaemia Trust), to urge people from the black British community to consider joining the Organ Donor Register, to help people like yourself who are facing serious health challenges. But one of the key obstacles that seems to prevent people from coming forward is fear and lack of knowledge about what organ donation involves despite the determined work of the ACLT. What is your message to someone who may be reading this who may want to donate but is wavering?

I understand and recognise fear plays a significant part in people's minds when deciding to become an organ donor, it's natural. We fear what we don't understand.
Faced with the same prospect of becoming an donor myself, with no prior knowledge, I'm sure I would start from this same base position as well.
What I would say to someone wavering, is that with most things in life, I would urge them to educate themselves. Seek out the truth about organ donation from authoritative figures, recognised experts in this particular field of expertise. People who are involved in the process in some shape or form. Whether that be an organ donation medical professional, a donor / recipient who has lived it and can speak from a position of experience. Or a charity like ACLT that have made it their mission to help Black people who need a donor as well as educate those who may be interested to learn more. They are more than capable, answering questions you may have and guiding you along the right path should you choose to go forward by registering to become an Organ Donor.

People need to understand, for a charity to operate effectively, it's team needs to be subject matter experts. ACLT have been operating since 1996, and in that time they've been raising awareness and helping people from Our Community to publicise their individual plights in the hope of a) finding a donor b) highlighting what is a real health emergency in the Black Community, especially right now.

Many people are unaware of the fact that some of the more common health issues in society today (High Blood Pressure, Heart Disease, Kidney Failure, Type 2 Diabetes) impact Black people disproportionately more than other sections of society. My intention here is not to alarm - but to educate. Everyone benefits once education is part of the equation. Our Community is suffering in silence or perhaps ignorance. I feel, for that reason alone we as a Community need to educate ourselves more on these important health matters.

Something else many people are unaware of; along with the Blood Group and Tissue Type, the Ethnicity of a donor can make a difference in whether the donor organ is accepted or rejected by the recipient's body. This is why there are appeals to the Black Community for help. There is much to learn, but please, don't feel overwhelmed, questions you have can and will be answered to help you understand how the overall process works.

Unfortunately, we live in a world today, where it can be hard to find the truth amongst the lies - especially online. It's important we choose our sources for information carefully.
I think it's important we support our Community where we can and Organ Donation is - perhaps now more than ever - one of the most important ways we can do that.
Q2: You were enrolled into an Organ Transplant Program in the hope that a matched kidney donor could be found. Could you tell us about what life is like for you at the moment? Eg combining hospital visits and having to look after a family, worrying about the future etc

Life now, after my kidney failure diagnosis has well and truly been turned upside-down. I've gone from being a busy, single Mother of 2, working full time for the NHS as a Nurse. To someone focusing almost exclusively on her own health, conserving energy, making judgements on how much I can - and can not do each and every day, due to how fatigued it leaves me feeling at the end and into the following day.
Unfortunately, working is not an option at the moment, NHS patient care, requires me to be in better health to be able to serve, so I'm taking time out for now until my situation improves. I've gone from taking care of people to being the one who needs help! They say people who work in the NHS make the worst patients. I couldn't possibly comment. What I do know, is that over the course of this illness, I've watched my children grow up faster than they should have had to - because of my illness, they've become young carers, when it should be me taking care of them. I know my children understand the situation. However, it is heart-breaking to know that I can't be the mother I want to be for them.

Living with a life-changing condition that others aren't able to see for themselves is something else I need to deal with. It's a problem society needs to deal with. In my experience, people are very quick to make judgements. Perhaps that's another reason holding others back from donating. Even though people can't see what I'm dealing with, they need to know how I physically feel. I'm in pain, I'm fatigued and it's constant. There is no let up! It's goes without saying my quality of life has declined.

Aside from the physical impact this illness has had on my body, I'm trying to remain mentally strong too. I still sometimes find myself asking - why me? I struggle to come to terms with what I'm going through sometimes. Even with the support I have around me.

My current routine, revolves around regular visits to the hospital for check-ups and treatment. Every visit, I'm reminded of how sick I am, and how my condition is deteriorating. I do worry a lot about the future. Dialysis will be my life support, without a kidney transplant. Thoughts of being attached to a machine every day - for several hours each day - restricting what I can and can not do fills me with dread. I remember my first visit to the dialysis unit to have the process explained to me. The ward was dominated of Black and Ethnic minority patients. A stark reminder of the knock on effects of insufficient donors from our Community.

Imagine for a moment YOUR life on dialysis. How would it change? What changes would you have to make to your daily routine?

I do my best every day to stay positive and hopeful, waiting for that all important call to tell me - a match has been found. I have days where I want time to speed up, just to end the day. Other times I want things to slow down so I can appreciate watching my children grow up, building memories of time spent with them.

This is my life right now, for how long I do not know. Hopefully the efforts of ACLT and other charitable organisations will help to turn the tide of opinion on Organ Donation for the better. I live in hope.
Q3: Despite the seeming shortage of African Caribbean donors there has been more debate about the issue in the black community. Are you hopeful that this will make a difference in your situation?

I remain positive and hopeful for the future. For a number of reasons...
Firstly, because positive changes have been put in place at Government level to change the way Organ Donation works. The ultimate goal is to benefit the many, not the few. This will undoubtedly improve the lives of those from our community who have been waiting for a transplant for months or in many cases years. Their lives will be transformed. However, these changes will not be introduced into law in England until April 2020. In the meantime we need to make sure we continue speaking to people and sharing real life stories to help our community understand the realities people like me currently face. This takes me onto my second reason...

I've seen the impact sharing my story can have on others. It's not easy talking about my situation but I know it will make a difference in the long term. Both for people waiting for a donor - like myself and for other people who may develop organ related illnesses from our community in the future. Conversations born from stories like mine help to normalise the subject. This can only be a good thing, but it's just the first step. After the conversations, we need to take positive action. As a demographic we lag behind others where organ donations are concerned. We need to recognise the correlation between that fact and waiting lists for our people. It's simple, if more of our people register to become Organ Donors, the waiting lists OUR people experience will shorten. That's the long and short of it.

I think we need to build on the momentum started by ACLT all those years ago and keep pushing the organ donation narrative within our community. The time to stop pushing is when we can say the waiting lists our people currently experience are a thing of the past. Not before.

Finally, stories like mine have, and will hopefully continue to change attitudes on organ donation. I hold onto the thought that the next person to read my blog will reach out to me directly {Twitter: @Naomi_My_Story} or ACLT to help. We shouldn't have to wait for this topic to personally impact us - or someone in our circle - before we as individuals get involved. I hope after reading this piece, people are sufficiently touched, to take the next step. If so, please reach out to ACLT.



You can drop me a message either via Twitter @Naomi_My_Story or HERE I love reading all of your messages of encouragement.
If you are moved by my story and want to get more involved, please consider doing one of the following two things:

1. Registering to become an Organ Donor here: https://www.organdonation.nhs.uk/ if you do, be sure to let me know!
New registrations give me a boost!

2. If you want to help me directly by being tested to see if you could donate, you will need to be aware of the following:
  • Firstly, I am BLOOD TYPE O-NEGATIVE it's important you know this in advance to be considered for a possible direct donation.
    Failing that, an indirect donation is still a possibility. Please still get in touch using the below...
  • Secondly, please complete THIS FORM and someone will get back to you to move things forward.

AGAIN, THANK YOU!