Thread by @BelindaOtas

Today is #WorldKidneyDay, so here is a thread about living on #dialysis & #OrganDonation. My name is Belinda Otas. I’m #African. I’m #Nigerian. I'm #Benin. I’m #British & I’m #Black. Beyond the nationalities or passports with my name, I also believe in our shared humanity.

I was 16, when I was diagnosed with End Stage Renal Failure (ESRF.) I had no idea what was happening to me because at the time, it made no sense. However, I remember the pain of that period like noonday. I lived on dialysis until i was 22. #dialysis #OrganDonation #renalhealth

It took over my teenage years. I don’t remember having much of a life as a teenager because dialysis was 3x a week & every session was 4hrs. Add the time it takes to recover from being exhausted by the process, my day was pretty much over. #dialysis #OrganDonation #renalhealth

I managed to go to college but found the ordeal gruelling and never made it to university. That was painful. I cried about not being able to go to university after college more than I cried about being on dialysis. Don't ask why. I still don't understand it myself #OrganDonation

I got my first #kidney #transplant in 2002 after 6yrs of dialysis. I was 22 & It's a day that’s forever etched in my memory. I remember waking & knowing something was different. I felt different. It gave me the second chance I so desperately needed, had longed & hoped for.

It enabled me to go to university, work & do the things that brought me joy. The freedom that came with it is indescribable. Imagine being able to eat whatever you like/want and drink without restrictions. #dialysis #OrganDonation #renalhealth

Being on dialysis means living on a strict fluid restriction & renal diet. You have to be mindful about food that's high in salt, phosphate & potassium. #OrganDonation #dialysis #renalhealth #KidneyDisease #kidneytransplant #transplant

One of the best gifts having a #transplant gave me was the ability to go back home to Nigeria, after over a decade & spend the same night with all my siblings under the same roof. That was pure joy! Pure joy!
#OrganDonation #KidneyDisease #renalhealth #WorldKidneyDay2019

In 2012, I had a rejection episode (This is when one’s body rejects a transplanted organ.) It was a painful episode & the fear of going back on #dialysis loomed over me for months. I can't even begin to explain the fear
#OrganDonation #renalhealth #transplant

However, the renal team at the Royal London Hospital (@RoyalLondonHosp) did everything they could to save my kidney. The lesson of that experience was to take better care of myself. After a #transplant, selfceare is king & queen. Don't play with it.

I wish I didn't have to learn that lesson the hard way. My kidney function as at when I had the rejection episode was 5%. After the intervention of the renal team, my kidney function steadily got better between 2012 to early 2017.
#OrganDonation #transplant #renal #KidneyDisease

In July 2017, I had my second #kidney #transplant. It was a pre-emptive transplant to avoid going back on #dialysis. I was once again relieved but that relief didn’t last for long. Unfortunately this transplant didn’t go according to plan. It didn’t work like my first one did.

There were challenges along the way, one of which was renal artery stenosis. According to NKF (@nkf) it's the “Narrowing of the main blood vessel running to one or both of your kidneys."
#OrganDonation #KidneyDisease #transplant #renalhealth #dialysis

Every effort to save the #kidney, including a re-transplantation to try and fix the arteries (blood vessels) didn’t work. This led to a #nephrectomy in February 2018. I'll describe the period between having my second #transplant to when it was removed as excruciatingly painful

I knew #dialysis was the end game if things didn’t work out and that was something I never wanted to go through again. Needless to say…
#organdonation #KidneyDisease #KidneyHealth #WorldKidneyDay2019 #organtransplant #transplant

I have been back on #dialysis since 2018, after 16 years of my first #transplant serving me well and giving me the much-needed freedom I craved as a teenager on dialysis. The ordeal has been jarring to my spirit, soul, mind & body.

If I’m honest, after a year, I’m still trying to figure things out. This has happened on the cusp of turning 40 later this year. Needless to say it has changed my life and plans once again. Dialysis for me is tough & rough on some days. I have good days & bad days. #OrganDonation

It is mentally tasking and emotionally draining. In spite of my best efforts to stay positive and look on the upside of life, there are days when it is really bad and it takes everything to stay sane. #OrganDonation #dialysis #renalhealth #KidneyDisease #WorldKidneyDay2019

If I'm honest, I hate dialysis & often joke that dialysis is that lover you absolutely can’t stand to be in the same room with. However, due to circumstances beyond your control, you currently have to put up with them until things resolve themselves. #OrganDonation #dialysis

In this case, dialysis keeps me alive, so I have to respect the process & show up for every session, even if it means being late. I try to do everything in my power to ensure I get to the hospital. There are days when I have almost not made it but I know what that means #dialysis

I'll get sick. The restrictions are back in place, fluid allowance & diet, boy o boy, that’s hard & I'm still struggling to adjust. But I must do the job required of me & be responsible with my health in order to stay alive & live as healthy a life as possible. #dialysis #renal

Thank you everyone for your kind words. I'm touched & my heart is full. If I didn't respond to your message, kindly forgive a sista! I'm currently hooked up to a #dialysis & counting the minutes to my session ending :)
Thank you, my heart is full 🙏🙏💛💛🌹🌹
#OrganDonation

I will update this thread throughout the day and add some crucial information as it concerns the African diaspora here in the UK, kindly hang with me. Thank you so much. Thank you 🙏🙏🙏🌹🌹

Let's continue but first, thank you all so much for your kind words, retweets and sharing the thread. My heart is full and I'm super grateful
#WorldKidneyDay #WorldKidneyDay2019 #OrganDonation #dialysis #transplant #renal #renalhealth

Just little about me based on Ms @MissWanaWana's words of wisdom. I'm a journalist. After my 1st transplant, went university and finally got that degree for myself and my Mama who had sacrificed everything to come and live in London with me #family #OrganDonation #WorldKidneyDay

I have been blessed to write for some wonderful publications, some of my work is online and I have a portfolio page of past work on my website. I am currently freelance & deputy editor at New African Woman
#OrganDonation #WorldKidneyDay #dialysis #renalhealth #kidney #transplant

I have had the opportunity to interview brilliant folks like Chimamanda Ngozi Adichie, Chika Unigwe, my big sis, Lola Shoneyin, Folorunsho Alakija, Tony Elumelu, Amina J Mohammed, Joyce Banda, former President of Malawi, Arunma Oteh, Sandie Okoro, Ozwald Boateng, Leymah Gbowee...

My focus as a journalist is Africa because I believe in the strength & stories of my people. Subject areas include: Gender, Business, Art & Culture, Tech & Innovation, Health, Education...

What gets me going, I'm theatre fanatic (It's 1 of my coping mechanisms actually, getting lost in the stories of other people) & wherever there is contemporary art from the African continent, there you shall find me. I'll gladly buy a book with my last penny & I love photography

I have been blessed to work with editors who were very understanding about my health and I was raised by a mama who always said, never look like the hell you are going through. Wake up, dress up, put on your lippy and show up. I miss her badly.

Folks like @HannahPool have given me the opportunity to be part of festivals like Africa Utopia, where I talk about Africa and all things African. And boy o boy, I can talk for Africa too 😁
Thank you sis, you rock!❤️

I enjoy moderating talks/panels on/about African related issues...for now, enough about me, back to #OrganDonation #transplant #WorldKidneyDay2019

Being back on #dialysis has been agonising. However, what has also been disheartening is seeing the numerous people from the UK BAME community faced with the same issue, in particular #Africans & #AfricanCaribbean People. Yes, Black people. #Africandiaspora #OrganDonation

The ride is going to be a bit bumpy but stay with me, it'll be good to have a conversation about an uncomfortable issue. Uncomfortable conversations help us learn. My people, we have got this 👊👊
#Africandiaspora #OrganDonation #transplant #dialysis #WorldKidneyDay2019

So According to the stats...A third of people (35%) waiting for a #kidney across the UK are from black, Asian or minority ethnic communities
#KidneyDisease #KidneyHealth #OrganDonation #WorldKidneyDay #WorldKidneyDay2019 #transplant

28% of UK #kidney #transplants in 2017/18 were in #Black, Asian or minority ethnic communities

#BAME #OrganDonation #KidneyDisease #KidneyHealth #WorldKidneyDay #WorldKidneyDay2019

901 #Black, Asian and minority ethnic patients received a #transplant from a deceased donor in 2017/18

#BAME #OrganDonation #KidneyDisease #KidneyHealth #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

There is a longer waiting time for #kidney #transplants for #Black & Asian patients v white patients (average wait approx. 2.5 years v 2 yrs for a white patient)

#BAME #OrganDonation #KidneyDisease #KidneyHealth #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

#OrganDonation – UK Key Statistics
In 2017/18, of those providing their ethnicity when registering on the #NHS Organ Donor Register, 3.3% were Asian, 1% were Black & 2% were mixed race

#KidneyDisease #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

In 2017/18:
• 114 of the 1,574 deceased organ donors were from minority ethnic groups
• 37 people with Asian heritage donated organs after their death (2.4% of overall UK deceased donors)

#KidneyDisease #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

25 Black people donated organs after their death (1.6% of overall UK deceased donors)
• 24 people of mixed heritage donated organs after their death (1.5% of overall UK deceased donors)

#KidneyDisease #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

In 2017/18 there were 133 living organ donors from black, Asian or minority ethnic communities (13% of all living donors)

#KidneyDisease #WorldKidneyDay #WorldKidneyDay2019 #Africandiaspora #Blackdiaspora

In around 5% of cases where we have the faith of the potential donor recorded and a family refuses donation going ahead, we have recorded the family feeling it was against their #religious or #cultural beliefs as the main reason for refusal

If you would like to know more about the statistics of organ donation or the attitude of people from the Black community, links to some further reading material

nhsbtdbe.blob.core.windows.net/umbraco-assets…

nhsbtdbe.blob.core.windows.net/umbraco-assets…

I'm currently reading & learning about the issue of #blood & #organdonation within the UK Black Community (African &African Caribbean)
Twitter handles for some trusted information
@kidneycareuk
@nkf
@Kidney_Research
@acltcharity
@NHSBT
@NHSOrganDonor
@GiveBloodNHS

In light of the above stats & may I add that I know 2 people who lived on dialysis for 10yrs before they got a transplant? Why are Black people in the diaspora reluctant to engage with the issue of organ donation?
#KidneyDisease #WorldKidneyDay #Africandiaspora #Blackdiaspora

Allow me to be very specific, why are #Africans in the #Diaspora reluctant to engage with the subject of organ donation? Is it for #cultural or #religious reasons? Or is it just #fear & a basic lack of awareness?
#KidneyDisease #WorldKidneyDay #Africandiaspora #Blackdiaspora

I will share a few stories/anecdotes. I can fairly say that there is a high number of #Nigerians living on #dialysis in the UK. At the hospital, they only have to speak and I know they are Naija
#OrganDonation #WorldKidneyDay #Africandiaspora

Other African nationalities are also represented but my people and I mean Naija folks, we are high in number on those machines. The 2 people I mentioned earlier, who were on dialysis for 10yrs are both Nigerians.
#OrganDonation #WorldKidneyDay #Africandiaspora

Do we realise that you can live on one #kidney for years and being a living donor is also an option we should talk about when it comes to organ donation?

#OrganDonation #WorldKidneyDay #Africandiaspora

What are our concerns/fears about being organ donors after death? My first donor was not a living donor. Neither was my second. Both had signed up to be organ donors in the event of their death.

#OrganDonation #WorldKidneyDay #Africandiaspora

I understand and appreciate that death is an uncomfortable subject for anyone, hence the taboo around it. I mean start talking to a Naija person about this matter and they may respond with "I rebuke & reject it" 😂
#OrganDonation #WorldKidneyDay #Africandiaspora

Or they might ask you if you are working on behalf of their village people? 😂

#OrganDonation #WorldKidneyDay #Africandiaspora #KidneyDisease #transplant

If the issue is fear, how do we get around this? I don't claim to have all the answers but engaging with the issue and educating ourselves will be the first step. That way we can ask questions and learn more
#OrganDonation #WorldKidneyDay #Africandiaspora

I'm tired of seeing so many young men and women on dialysis. #dialysis is a thief of our time, hopes, dreams, potential and ability to fully contribute to society

#OrganDonation #WorldKidneyDay #Africandiaspora

No matter how strong you are, there are days when you will struggle. There are days/periods when I struggle a lot. Now imagine if a family member stepped forward & the circumstances were okay for them to be a donor. Imagine how it would change my life or your life?
#OrganDonation

I can't speak for any other country but based on my experience here in the UK, no one will harvest your organs while you are still alive & have a fighting chance to survive. The priority is to always save your life
#OrganDonation #WorldKidneyDay #Africandiaspora

If the reason why we are reluctant to engage with this issue is cultural, how do we change that culture? People create #culture & people can also change it? And what exactly is that thing about our culture/s stance against #OrganDonation #Africandiaspora

If the reason is religious, can't speak for any other faith but there's no bible verse against Organ or Blood donation. Unless I have the wrong bible. I know Jehovah's Witness are against blood donation. I'm not equipped for that conversation
#OrganDonation #Africandiaspora

How do we begin to create the space that allows us to have uncomfortable conversations like the one surrounding #OrganDonation in order to gain better understanding?
#Africandiaspora #WorldKidneyDay #WorldKidneyDay2019

Imagine my shock of going for dialysis one day and seeing someone I know now, who is now on dialysis. I asked her if anyone in her family could be a donor, she responded - "My sister will only tell me that she will pray for me and say aunty no."
#Africandiaspora #WorldKidneyDay

May I say this in the nicest way possible. Thank you for the prayers, those of us in need of blood transfusions or waiting for #transplants are truly grateful. Pls, when you are done praying, kindly consider becoming an #organdonor as a member of the #AfricanDiaspora

Let's move away from the fear, religious or cultural lens through which we view this discourse. What if we begin to see it as a gift, a selfless gift that gives someone the gift of life? Surely that's a miracle?
#AfricanDiaspora #OrganDonation #organdonor

That's how I view and think about #OrganDonation and #transplants - It is a thing and work of wonder, a miracle.
#AfricanDiaspora #OrganDonation #organdonor

As I bring this thread to a close, my goal isn't to chastise or preach @ anyone. Kindly excuse me if anything I have written comes across as such. My only goal is for us to engage with the issue, have uncomfortable conversations, become aware & consider it #OrganDonation

The images used in this thread are to demonstrate the restrictions/limitations that comes with living on dialysis. The lines wrapped around me are dialysis lines. The White containers are for the dialysate fluid used during dialysis to remove impurities. I still dream of freedom

It is possible to zoom into the images in this particular tweet
The white line on my chest is what I currently use for dialysis, it's called a permcath. The scars on both hands are from my fitulas, past & present, they are also used for dialysis. This is life

If I struggle, imagine a child on dialysis and what they go through and how that affects their family? It affects the whole unit and it hurts when some of us don't make it through. Kindly give thought to #OrganDonation and becoming a donor. Thank you

And thank you for the prayers, well wishes, and engaging...feel free to ask questions and will do my best to answer. If I don't know, will try and find out.

All images are by the extraordinary @asiko_artist, thank you bro. You are are the best 👊👊