Dying for a transplant

24:26Emmanuel Sonubi:This is the documentary Dying for a Transplant from the BBC World Service with me, comedian Emmanuel Sanubi. So I discovered I might need a transplant a day after I had a heart attack while performing in Dubai. I share a condition called dilated cardiomyopathy or DCM with my sister Ginka. For both of us, it means the walls of our hearts are thinner than they should be and so it's harder for blood to be pushed around our bodies. We've been reflecting on our experiences over a cup of tea.

25:01Emmanuel Sonubi:When they told you that you were going to the transplant unit, did it click in straight away that you might need a transplant? Looking back now, I was probably in denial of how serious things were because all I kept blabbing on about was I want to breastfeed the twins. And the consultant was like, do you realise how ill you are? I said, it doesn't matter, I just want to breastfeed the twins. Because I was trying to express milk and they were like, you can't do that because we put all sorts of dyes in you, you can't feed. and I was just going on about feeding the babies. And he looked at me like I was crazy.

25:26Like, do you realise you're really ill? You might not even survive to go back home with people. By the time they sent me to the transplant unit, there was an improvement in my condition. The transplant unit had prepared a room for me with the monitors and the gadgets. And by this time, I only had one drip. I carried myself. So when the ambulance first got me there, all the nurses ran past me. And I thought, oh, they're really busy. I just stay here on my trolley. And then the nurse came back and she said, are you the one with the heart failure? I said, yes. She said, where's the rest of your drips?

26:00And you're sitting up and you're talking. Because at that point, I didn't even have continuous oxygen anymore. So in my head, I was getting better. So I wasn't as panicked. But then when they admitted me and strapped me up to everything, said, oh, you're going to be here for a while. I thought, oh. And then the doctors that were coming to see me in the coronary care unit, they said, oh, we've only ever seen this on autopsy. Oh, thank you. so yeah the doctors were petrified because some of the students had never seen it they'd read about it but never seen it and then I eventually found out that three mums passed that year with that they didn't know they had it it was too late by the time they found out so yeah I think I was more grateful that I was still around to make changes and yeah so they talked to you about transplant because obviously you're on the transplant list they said it was a possibility because there'd been some sort of improvement and the doctors are saying sometimes it gets worse before it really gets better so even though there'd been some sort of improvement they expected that i might relapse so they were kind of all set for that whereas i was like i want to go home now i'm fine they were like no you're not fine i said i'm fine i can breathe because that was the main thing for the first couple of weeks in hospital the oxygen mask was permanently strapped to my face the moment they took it away felt like i was being strangled they put me on blood thinners they put me on

27:18Emmanuel Sonubi:warfarin and they started me off on five milligrams made no difference that went up to eight no difference that went up to 10 and it got up to 15 which is incredibly high and for such a potent drug as well one of the doctors there was talking about writing a study about me just because none of it matched anything of the yeah the thing that i found that probably worried me more was when they started speaking about it they were worried because they didn't know if they would find a donor in time wow because they had that much of an intense conversation with you yeah because they're thinking worst case scenario if we do need a donor and i think obviously they would have known that finding a match is going to be much harder did it set off alarm bells for you when you started to hear about transplant and being on that ward because i was probably denied to a certain extent as to how serious things were yeah it didn't to begin with is when i went home eventually i thought oh oh dear that was very bad i could have died what i did think at the time was more about the kids i think you know if i've got this have they got it yeah it's a genetic component yeah yeah and according to the global observatory on donation and transplantation the number of heart transplants carried out around the world increased from 8 000 in 2020 to more than 10 000 in 2023.

28:46So our surgeons go from Abu Dhabi to Dubai and do the transplant and vice versa. If we have an organ which has been allocated to, let's say, SKMC or Burjil Hospital or let's see New England Clinic in Abu Dhabi, their surgeons would come here, procure the organ and take it back to Abu Dhabi and transplant them. So that is very good cooperation we have and it is all regulated by the OPO, the organ procurement organisation, in a very amicable manner. I am Dr. Kaisal Raja. I am a transplant hepatologist and I work at the King's College Hospital in Dubai in the UAE. We, a year and a half ago, started a liver transplant program, which happens to be the first in Dubai.

29:28We have done close to 30 transplants. It includes a mix of adults and pediatrics. And we have been fortunate to have access to disease donor transplantation thanks to increasing number of donations in the UAE. Dr. Rajas says the country has made huge strides in the field. It all started with living donor renal transplants back in the 90s and early 2000s. And then people started thinking about how to go on to other organs and how to see whether organ donation would happen in the UAE. Remember, it's an Islamic country and people have certain reservations when you talk about organ donation in Islamic nations, although there's nothing which is there in the scriptures which prohibits donation in any culture or any religion.

30:15But still, I mean, there were apprehensions when we start a cadaveric transplant program. The government here promotes that each and every person can sign up as an organ donor. Now, during COVID, there was a bit of a dull period. But then after that, there has been a dramatic rise in organ donations and also in the number of transplants being performed, as well as in number of transplant centers. And then people have moved on from kidney transplantation to liver transplantation, multi-organ, intestinal, cardiac, and lung transplantation. So practically all forms of transplantation now happen in the UAE.

30:49Of course, in much smaller numbers compared to the Western world, but the number of donations has really gone up during a recent transplant congress. It was noted that UAE was, you know, when you look at year-to-year percentage growth, the UAE was on the top. Despite the progress, people still have reservations. I do not think that it is the religious thing which is holding people. It's a slightly cultural thing and maybe a regional thing. For example, we have donors from a particular Islamic nation who has the maximum number of conversions, I would say. When I say conversion, it means a potential brain death patient family agreeing to organ donation.

31:30So if you counsel 100 donors, if 50 families agree to organ donation, so the conversion rate is 50%. So there is a particular Islamic country where the organ donation to conversion rates are the maximum. And we have other Islamic countries where the number is very minuscule. So I don't think it's something to do with religion. It's something to do with culture and something to do with people's aptitudes towards organ donation.

31:58Emmanuel Sonubi:Nadia Musiok from Ukraine has lived in Dubai for nearly 20 years and is a recent recipient of a liver transplant at King's College. I slept for a good 10 or sometimes 12 hours, always, always tired. And I found Dr. Kaiser Raja. From the first moment he saw me, he said, girl, you obviously have some liver problem because my skin starts to change color and it looks like a cirrhosis. We found out that I have autoimmune disease, which was attacking my liver. I was diagnosed with liver failure. My only option was a full liver transplant. And here I got the news that King's College Hospital just got the transplant license and they're opening the department.

32:53And Dr. Kaiser said that you will be our first patient and first matching donor, and we will do a surgery transplant for you. It was brain dead donor, and it's his family who decided to donate his liver. The decision saved not only my life, but this decision saved a mother for, at that time, 12 years old child.

33:21Emmanuel Sonubi:From Dubai, where the story of my broken, failing heart started, over to where it all did, Nigeria, where both my mother and father are from. Donation of organs, for instance, kidneys and other organs, it's not common at all. Dr. Petty Urbani is from Nigeria and now works as an associate professor at the University of Bradford School of Law in the UK. There is an aversion towards mutilation of the body for various reasons. Sometimes it's cultural, sometimes it's religious. When someone passes on and then you want to carry out an examination of the body to see what was the cause of that, a lot of families would refuse.

34:03For some people, they believe that if you mutilate the body, that has implications for the afterlife. Some people would go as far as saying that actually someone gets to the point where they need an organ transplanted. That is their destiny. And then they live with it or they die with it. Whatever happens, you go with faith. The National Health Act provides the framework specifically for organ donation. And it's very big on consent. And so any form of coercion or any form of duress or taking out people's organs without complying with the legal framework or requirements is an offence and is punishable by law.

34:46For people who want to give consent post-mortem, that consent needs to be recorded, whether in their will or other formal documents, following the right processes with witnesses, before you can then take the organs at their depth. And just to say that even when consent has been given, it can be revoked.

35:08Emmanuel Sonubi:Ifama Ulasi is a nephrologist and professor of medicine at the University of Nigeria Teaching Hospital in Enugu. Ifama has been outlining how donation and transplantation works in the country. First of all, you have your evaluation and then you make your own arrangement to get your donor who comes and has a donor evaluation to see if he's actually okay to give you a transplant or if he as a person has normal kidney function that he can part with one kidney. That is what is done now. It's basically from the individual. There's no coordination at the national or the state level. The system can be complex and costly for the individuals and their loved ones.

35:49The health insurance scheme does not take care of transplant. If you have to do transplant, you pay out of pocket. I think it's the first year of medication. You pay for all you have through the surgery, apart from if you need some special things, like if you have complications and you need what we call plasma faresis that helps you sieve out the antibodies that are disturbing the transplant, that you have to pay for extra and everything regarding to the donor you pay for. Or if you're working in a good company that can take care of your health issues, the company pays.

36:27Emmanuel Sonubi:The Nigerian authorities are keen to clamp down on the potential commercialisation of organs. A new legal framework is being introduced to help Nigeria align with standards in other countries. Our government has taken this trouble to start working on a framework, which means that soon we should have a registry, a documentation of the people that have transplant, where they have transplant, when they have it. And also it will mean that we may soon be able to develop a waiting list and all that and be able to do disease donor transplantations as three centres match. The minister was talking about these guidelines that they have produced and emphasised why they are putting this forward so that we have a structure system so that all such unethical things cannot go on anymore.

37:17Disease donation has not been established adequately worldwide. We have about 40 % of the world, that's about 77 countries, that have established enabled disease donation systems.

37:30Emmanuel Sonubi:The WHO's Stratos Chatsing Serious again. We cover only about 10 % of the global need by the current transplantation activity. And this is an issue, of course, that causes a lot of problems. The main problem is that people will die. The current waiting list shows that at least for kidneys, as far as we know, this is information from about 81 countries. We have about 400 ,000 patients registered on waiting list. And unfortunately, more than 13 ,000 of these patients die every year while they are waiting. That's about 3.5%. This is a global emergency and people are desperate and they try to find other solutions.

38:16And that leads perhaps to exploitations of living donors, traveling abroad for transplant and looking into unethical practices.

38:30Emmanuel Sonubi:The most successful country in the world when it comes to organ donation and transplantation is Spain. And this is thanks to what is known around the world as the Spanish model, a cornerstone of which is the assumed consent to donate organs in the event of death. Dr Beatriz Dominguez-Hill, PhD, is Director General of ONT, which is the Spanish National transplant organisation? Before 1989, when ONT was created, organ donation was not as structured. We had a good legislation that had been enacted 10 years before. This is important because presumed consent was already there in our legislation and we don't believe this had nothing to do with the success of our system.

39:14Second, we had a public healthcare system of universal coverage and then we had political competences transferred to 17 regions. And what ONT did was to agree with these regions the way we were going to coordinate disaster donation activities in the country. And what we conceived was a very specific model of coordination, which is well known as the Spanish model that allowed our country to very quickly evolve from 14 disaster organ dollars per million inhabitants to more than 30 per million population in less than a decade. We are now over 50 deceased donors per million population. But for everybody to have an idea of what this means, the main activity in the EU is about 2022 deceased donors per million inhabitants ranging from almost zero to the activity that we registered last year.

40:08Emmanuel Sonubi:Another country in Europe, but with a different approach to Spain, is Germany. Dr. Axel Rommel is medical director of Germany's organ and transplant coordination organization, the DSO. Unlike some other countries, Germany follows what's known as the opt-in system and organization, meaning people must actively register their consent to donate organs after this. Despite a lot of efforts, we still face challenges. The number of patients waiting for transplants far exceeds the number of available organs. And that's why we are really hard working on raising awareness. But how do people view organ donation and transplantation in Germany?

40:48Surveys consistently show that more than 80 % of the population view it positively and believe that it's important to be an organ donor. It's well accepted that organ donation can save lives. However, while support is high in principle, far fewer people actually register the decision, either on the donor card or in the new established electronic donor registry. Often it's not due to opposition, but rather uncertainty, lack of information or simply putting it off. So what we are confronted with in reality is that a documented written will is only present in 15 % of the donors that are reported to us.

41:30An additional about 20 % have at least verbally expressed their will regarding organization so that we have an explicit will in about one third of our potential donors. That is quite a hurdle. So moving from being positive about organ donation to actively register as an organ donor, that is our biggest challenge. In Japan, we have a good history in terms of the development of the transplant system.

42:05Emmanuel Sonubi:Dr. Yuji Murray is a former kidney transplant surgeon and professor at St. Mariana University Hospital in Kawasaki, Japan. We had around 60 years old history for the kidney transplant, as well as heart and liver. Since 1995, we had public coordination for the donation from the deceased donor. But the number of the donation has developed very slowly, around 100 to 120 a year. sofa. Like Germany, Japan operates an opt-in system. Who wants to donate the organ after the brain death needs to only have agreement from the next kin. Most of the people who become next kin do not agree with the donation.

43:04Many, many Japanese people tend to hesitate to make a decision. To hesitate to make a decision results in silence. Silence means denying in Japan usually.

43:23Emmanuel Sonubi:In Karachi, Pakistan, amidst a healthcare system where kidney transplants are both widespread and costly, one hospital offers a radical alternative. At the Sindh Institute of Urology and Transplantation, better known as SIUT, transplants are performed entirely free of charge. Uniquely, this life-saving service is powered by philanthropic donations, not patient fees or conventional state funding. Diabetes rates are surging across the country, driving a sharp rise in kidney failure. And this pioneering hospital stands as a vital safety net. We don't have the deceased organ transplantation as yet.

44:03that although the law has been made, it is not being implemented because people are still not convinced about it.

44:09Emmanuel Sonubi:Dr Fatima Jawad has worked in the field since the early 70s. They don't donate their organs. So it goes from the immediate relative. And that is, of course, all looked into, that everything is fine, it is transplanted. And it is quite successful, but it is very, very expensive. And it is also not everywhere. where in the bigger cities of the country, it is prevalent, but it is not free of cost. Except in where I'm working, in the Institute of Urology and Transplantation, and that is doing everything absolutely free of cost. And all the patients who are transplanted, they are taken care of for life.

44:53And every three months they come, they get themselves checked up.

44:56Emmanuel Sonubi:The service isn't just about the transplant itself. We even see to the legal aspect. We have a very senior lawyer with us. We look into the psychological aspect, whether they are not being forced to donate the kidney. Everything is tested. There's no danger for the donor. There's no danger for the recipient. And then the surgery takes place. I feel very proud to say that we are running a clinic for the donors and I'm in charge of that clinic we call the donors once a year and we get the test done and if something is wrong, everything again is without any cost we give them the diet advice if they are putting on weight or if they have developed blood pressure or if they have developed diabetes they come from all over the country I mean this sort of a clinic is not found anywhere in the world Not everyone is lucky enough to have a transplant operation carried out free of charge in this Karachi hospital.

45:55Emmanuel Sonubi:So how much would it cost elsewhere in Pakistan? In Pakistani rupees, it would come to about 70-80 lakhs for the surgery, for all the investigations. And after the surgery, all the medicines which they have to take, they are costly. Despite the success of SIUT's Live In Donor Programme, Pakistan still faces a critical shortage of organ donors overall. Deep-rooted myths and cultural concerns continue to discourage many from donating, especially after death. We are lucky we have very close ties in families. So if one person in a family develops kidney failure, then all the siblings or the parents, if they are not that old, they all volunteer.

46:42And then they are all tested and the best match is taken.

46:48Emmanuel Sonubi:Sport has been used to raise awareness for lots of issues. And donation and transplantation is no different. The World Transplant Games actually, in the beginning, it was a message to promote organ donation and transplantation and demonstrate how you could be fit and healthy after a transplant. Liz Schick, a liver transplant recipient in Switzerland, is the president of the World Transplant Games. I quickly saw and so did my colleagues that how important it is for us because I'm one of them to meet others that have lived through the same experiences and how important it is for us to keep moving this transplant this gift is so precious and we must do everything we can to keep this gift happy and healthy as long as possible.

47:34I was very healthy working as a fitness instructor. I had a sports shop living in the Alps with my children and my husband. And I went to a wedding in the UK. And on the way, I had terrible stomach cramps. I went to my family doctor. He sent me to have an ultrasound. Then I find myself having a CAT scan. I then had to have a biopsy. And they really didn't know what was the matter with me. Maybe a month later, they told me I had epicylioid hemangio. The only treatment was a liver transplant. One of the things that really concerned me was I didn't know if my health insurance would pay for a transplant.

48:12Having the transplant and the immunosuppression drugs afterwards, something very costly. And in the beginning, I was thinking, well, we have to sell our house and then what if I die anyway, then the family will have nothing left. Luckily, health insurance in Switzerland does. I was absolutely sure that my liver came from a young man. I just felt it. And I was saying to people, I know it's a young man. My transplant corduroyate came to see me and she said, people are rather shocked that you know about your donor. And I said, I meant I know in my heart that it was a young man. And there was that eye contact.

48:50And I said, I'm right, aren't I? And she didn't say anything, but I was right. And years later, she confirmed that. I think it makes you realise your donor goes absolutely everywhere with you for the rest of your life. He's like your best mate. You do good things, bad things, happy things, sad things. You do everything with them. Looking into the future, we have to see what innovation brings into the game.

49:16Emmanuel Sonubi:Stratos Chatsing Serious again. There's a very rapidly growing sector, which is called xenotransplantation, and that means the use of animal organs as a potential source for human transplantation. There's a lot of other research around stem cell regeneration that might be enabling also to cure the organs and therefore limiting the need for a transplant. And a third technological pillar would be the advancement in artificial organs, such as microfilters that could be used into replacing the kidneys and therefore no need for a human organ to be used. So in a perfect world, every patient should have access to the type of transplant that they actually need.

50:02Emmanuel Sonubi:I've seen the numbers, I've heard the stories, I've met the families who've given and those still waiting. And as someone who may one day need a donor myself, I can't ignore what's missing. not just organs but awareness, trust and systems strong enough to catch us when we fall. This isn't just about me, it's about millions like me hoping that when the day comes the answer won't be silence. You've been listening to the documentary Dying for a Transplant. It was presented by me, Emmanuel Sanubi. The producers were Kurt Brooks and Ashley Byrne. And it was a Made in Manchester production for the BBC World Service.

50:54Lives Less Ordinary is bringing you a special series of extraordinary love stories from all around the world. In India, love at first sight feels more psychotic than arranged marriage. Love stories that break all the rules. We came into our relationship with a lot of complicated pieces. Stories that show that sometimes love is all you need. Lives Less Ordinary love stories from the BBC World Service. Listen now. Search for Lives Less Ordinary wherever you get your BBC podcasts.