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Ayesha is a Peer Educator for Kidney Research UK, and she advocates for kidney donors from minority ethnic groups. After experiencing preeclampsia during the pregnancy of her first son Ayesha was diagnosed with Focal Segmental Glomerulosclerosis, FSGS.

She explains what a crucial organ the kidney is for the human body and the functions it performs, as well as symptoms to watch out for. Ayesha is passionate about helping to educate people about kidney disease and is encouraging patients to sign up for the research programme being run by Kidney Research UK.

24 years after her initial diagnosis Ayesha is at Stage 4 of kidney disease and is campaigning for a living donor.

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Check out Ayesha’s Instagram account 

 

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

 

Transcript

Paul Shriever:

Hey, guys. My name's Paul. With us today we've got Chantal. How're you doing, Chantal?

Chantal Boyle:

I am doing really, really well. Thanks, Paul. How are you?

Paul Shriever:

Very well. Today, we're going to be talking to Ayesha. How're you doing, Ayesha? Nice to speak to you.

Ayesha Edmondson:

Hi, Paul. Hi, Chantal. I'm good. Thank you.

Paul Shriever:

Welcome. Welcome, and thanks for taking the time out to talk to us today. So Ayesha is a Peer Educator from Kidney Disease UK, and she advocates for BAME, which is black, Asian, and minority ethnic, kidney donors. Ayesha has kidney disease. Kidney disease is a silent killer and there is currently no cure. There are three million people in the UK with it right now. And the number of people with kidney failure continues to rise. Welcome, Ayesha. Can you just explain and introduce yourself, please, and a little bit about your condition?

Ayesha Edmondson:

Hi, everyone. My name is Ayesha. I'm 49. I have kidney disease. Now, there are different types of kidney disease. I have something that's called FSGS and that's focal segmental glomerulosclerosis, if I've gotten it correctly.

Paul Shriever:

Wow.

Ayesha Edmondson:

So, that is a condition that affects the rate of filtration through the kidneys. Both of my kidneys are damaged, and I was diagnosed with it... Firstly, it was picked up when I was pregnant with my first son 23 years ago, nearly 24 years ago now. And to be honest, I really didn't know how the journey was going to pan out as we are here today. So we'll cover that. So, yeah, I've lived with it for quite a while. I am now at stage 4 and in need of a living donor. So, that's where we're at today.

Paul Shriever:

How far back was it that it started?

Ayesha Edmondson:

Well, during the pregnancy I had preeclampsia. And with preeclampsia comes the high blood pressure, the protein in the urine, the out of breath, and the fact that I swelled up quite early on in the pregnancy. From about 22 weeks, I was being monitored quite closely. I didn't know why. They just said I had preeclampsia. I didn't even know that preeclampsia was a killer in pregnancy. It can harm the baby and mum. So me being only 25 and pregnant, I was completely unaware of it. So immediately, I was put under a renal consultant, Prof. Kalra at Salford Royal, and he has looked after me right up until COVID, till I went over to the transplant team. So, yeah, he's been my consultant all through the whole journey.

Paul Shriever:

Your kidney condition, was that triggered from pregnancy?

Ayesha Edmondson:

We don't know. It was flagged when I was pregnant. There isn't enough study into FSGS to show whether it's a genetic disorder, whether it's been passed on genetically, or whether I have developed it. There just isn't enough research to show that yet.

Paul Shriever:

But the symptoms for it, did that start to become evident and come out at that point? Is that when you suddenly went, "Something's not right here"?

Ayesha Edmondson:

No. Even during pregnancy, I was in baby mode. I didn't have a clue. I was uncomfortable, I was throwing up, I was dehydrated. I was constantly in hospital because of the dehydration. Straight after Max was born, three months after, they allowed my body to recover, three months after, I was in for a biopsy. And that is when they clarified and confirmed that I have the disease, which, again, because I was a new mum juggling a job, going back to work, it kind of went over my head because I was going back to normal. There was no real symptoms, because I was flagged at stage 3, 2B/3. 2B/3. So it's quite early to be diagnosed with it. And at that point, all I was given was a tablet just to slow the filtration rate down.

Chantal Boyle:

If somebody has preeclampsia, does that mean that a kidney is not functioning properly?

Ayesha Edmondson:

One of the signs of preeclampsia, it puts pressure on your kidneys to function. So you're growing a baby and it puts pressure on all your organs. Anything that you put in your body, the medication, the food, the juices, anything, it has to filter through the system. Okay? And as a normal person in a normal pregnancy, your filtration would be quite good. And they say in a young person, your filtration rate will be quite high, in the eighties, nineties, between 70 and... No one's ever 100%, apparently. Because as we get older, it drops. So by the time we're pregnant and having babies, our bodies have already been through so much, and your filtration rate will be about anything from 70 to 90. Okay? And that's normal.

Ayesha Edmondson:

However, with mine, because I had high BP, the dehydration, the protein, the creatinine levels affected, the urea, everything flagged up because they had to do weekly bloods. So it turns up in the weekly bloods, and that is how it was flagged, not just the preeclampsia with the swelling in the face and the swelling in the body, and fingers, hands, everything, but the bloods confirmed that I had, yeah, something going on with the kidneys. Most pregnancies, you're not thinking about your kidneys.

Chantal Boyle:

No.

Paul Shriever:

No, of course.

Ayesha Edmondson:

Although it's a vital organ, you're thinking about carrying that baby safely. You're thinking about not throwing up. You're just thinking about what you can keep down.

Chantal Boyle:

Yeah. I mean probably, it's a good point to actually say, well, what are the kidneys for? They keep the whole body healthy and working from the heart and skin to the bones and the digestive system. They clean all your blood 40 times a day.

Paul Shriever:

Wow.

Chantal Boyle:

That's incredible. And they also regulate your blood pressure. It's the most amazing organ in the human body.

Ayesha Edmondson:

Yes. It is absolutely vital. And people I don't think actually understand how vital the kidneys are and how much work they do for us.

Paul Shriever:

Is it all just one type of kidney disease, or are there many?

Ayesha Edmondson:

No. So there are different forms of it, okay, so that leads to kidney disease. There are different paths that would lead you to that. So, yeah, there are lots out there. But the main one is the chronic kidney disease. CMV is treatable, whereas FSGS is not. It's treatable with a transplant. But, again, we'll cover this in another question. When you have a transplant, your journey with kidney disease doesn't end. That is not the end. That is just a form of treatment for you.

Ayesha Edmondson:

People tend to think that having a transplant is the end of the journey, and wow-wee, it's all done, you're back to normal. No. When I was pregnant, I found out... Like I said, it kind of went over my head because I was still able to work, have more kids. And it didn't affect my life at that stage. When you get to stage 4 and 5, which is the end, transplant and failure, so you are heading towards dialysis, which is what I'm trying to avoid by looking for a living donor and educating people. But you can be on dialysis for a very long time. And many people, due to the waiting lists as we know how high they are and possibly triple the time for BAME communities, do pass away while waiting on the list. So the education is needed vastly across communities, schools, young adults and adults just to make people aware. Share Your Spare.

Chantal Boyle:

May I ask you, because you're a Peer Educator and you're talking about education there, so what exactly do you do as a peer educator?

Ayesha Edmondson:

As a Peer Educator, we are launching, which we should have launched over COVID, so we're a little bit behind... We are going into communities, organizing events to speak to groups, peer groups like schools, colleges, anybody that'll have us that we can come and talk to, whether it's a women's group as well, rotary clubs, anywhere, to go and talk about kidney disease. Some people live with that, with kidney disease, and never know they have it until it's too late. So they don't know what to watch out for. And sometimes there aren't any signs, like there wasn't for me. I didn't have a clue I had it. If I wasn't pregnant, I might not have been diagnosed with it until it was too late.

Ayesha Edmondson:

So, yeah, a lot of people need to understand what it means not just to themselves if they are diagnosed but to the families, how they are looked after, physically/mentally how it affects them, and perhaps how they would need to talk to their employers about putting in measures to protect them and to help them along with their journey. Because if they are diagnosed with it, it can be physically and mentally draining as the road goes ahead. Yeah.

Chantal Boyle:

So let's talk about your diagnosis. What types of tests? You said, so you had a biopsy?

Ayesha Edmondson:

Yeah. So the first initial step for me, and it's not necessarily the same with everyone, he was desperate to do a biopsy. That was his first thing. And a biopsy is where they take cells out of the kidney to double-check that the cells are showing what the blood tests are showing. So mine was straightforward. Again, I don't remember much of it, Chantal I'd just had a new baby. So I was just like, "Yeah, get on with it." I have no fear of the doctors. I was in and out, anyway, of hospital during my pregnancy. And I've always been like that, "If you need to do something, just get on with it." So for me, at the beginning, it was much easier to handle, to go in to give blood and stuff. So I went in, I laid down on my back. They did an epidural type biopsy. So they had to numb the area and take it out. The results were very quick and I was told within three weeks.

Chantal Boyle:

So somebody having a similar experience where they would initially have the blood tests and then this biopsy which then fairly quickly gives the experts an indication of what the rate of deterioration is. And then you start on a course of medication.

Ayesha Edmondson:

Yeah. We are hoping as Kidney Research UK and other charities, which we'll talk about later, that the patient journey is subsequently the same for anybody that comes in to be diagnosed. If someone's constantly talking about back ache and UTIs and they don't know whether they're having problems down below, they should ask just to be referred to a urologist and a renal consultant.

Chantal Boyle:

Let's just run through those kind of identifiers, those symptoms again.

Ayesha Edmondson:

UTIs.

Chantal Boyle:

So that's a urinary tract infection, isn't it?

Ayesha Edmondson:

Urinary tract, yeah.

Chantal Boyle:

So urine infection.

Ayesha Edmondson:

Yeah. Urinary tract infections. As a child, I kept getting UTIs, and mum and dad didn't know why. And back in the '80s, there wasn't a lot of studies going into UTIs and children. So they treated it with antibiotics and cranberry juice, and that's all I remember. I don't remember much. And so when I look back, perhaps I'd already got it. And then as a young adult, I didn't see anything. Nothing happened. It kind of settled down. And I did my research. I found out that every time you have a urinary tract infection, if it's left untreated, the bug can travel into your kidney and it can become a kidney infection. And every time you have a infection in your kidneys, your kidneys are fighting to filter that infection out. It's going, "Go away. Go away. Go away." And then it can leave the actual kidney slightly scarred, a teeny-weeny bit of scarring. So that may have happened to me, but, obviously, there's not enough studies to show that, and so I can't say that's what happens.

Chantal Boyle:

The urinary tract infection, is that the only kind of indicator that somebody might have kidney infection? Pain in your kidneys?

Ayesha Edmondson:

Pain in your kidneys a lot. Yeah. Yeah, if you're not drinking enough [crosstalk 00:14:31]-

Chantal Boyle:

Color of the urine, does that make a difference? You know like they say we should drink so much water?

Ayesha Edmondson:

Yeah. That, the color of the urine, when you're in early stages, for me, I didn't really notice any difference, if I was honest. Now I notice the difference that if it's clear, clearish, light yellow tones, it is good. You've drunk enough. If it's dark and smelly, you've got an infection. If it's frothy, it's full of proteins.

Chantal Boyle:

The research, if somebody wants to sign up to the research, is that available in every single hospital, or is it somebody from Kidney-

Ayesha Edmondson:

You have to click on-

Chantal Boyle:

How does that work?

Ayesha Edmondson:

Yeah. You have to just click onto the Kidney Research UK site and you can register your interest to take part in research. Yeah.

Chantal Boyle:

Okay. That's good for our audience to know that. And your family, you said that you are from Bangladesh.

Ayesha Edmondson:

Yeah, yeah.

Chantal Boyle:

So tell us, you mentioned that there might be a genetic reason for this.

Ayesha Edmondson:

Yeah. The reason I say that is in Bangladeshi communities, kidney disease is very, very common. High blood pressure, kidney disease and diabetes are one of the things that is quite common in Bangladeshi and Pakistani communities. Because I came here when I was five, so I don't have a lot of memories. I don't know why. It's really bad. I have one memory of my auntie going off into a room every day, and I think she went to dialyse, but nobody ever spoke about it. But I know she had kidney disease because I was told when I was older.

Chantal Boyle:

Right. So, that's the-

Ayesha Edmondson:

That's the link, yeah. There's nobody else that has it.

Chantal Boyle:

What's your kidney function? What percentage is it at?

Ayesha Edmondson:

It's floating between 15 and 16.

Chantal Boyle:

So you're at severe loss of kidney function to kidney failure.

Ayesha Edmondson:

Failure.

Paul Shriever:

You mentioned stages. Can you just explain that a little bit? There's other five or six stages.

Ayesha Edmondson:

They tend to start at stage 2. They don't really recognise anything before that. So stage 2, I was diagnosed at stage 2A/3, and I was hovering between the two for many years.

Paul Shriever:

How is that determined?

Ayesha Edmondson:

That's determined with your kidney function, your eGFR and your creatinine level and your urea level. One of the nurses said, "You've just got to worry about your eGFR, which is your function of your kidney." So I floated between 2A and 3 for quite some time.

Paul Shriever:

Where are you at the moment?

Ayesha Edmondson:

My blood test from November 2019 to my blood test in August showed 33% decline.

Paul Shriever:

That's massive. But does there need to be a reason for that? I mean-

Ayesha Edmondson:

All I can think of... I mean, he said to me, "Is there anything going on?" I said, "Well, I've moved house. I'm not stressed about that." And I said, "I was stressed at work during Christmas. I hurt my back." He said, "No." He didn't know. Like I said, this is why we need research.

Paul Shriever:

Yeah, of course.

Ayesha Edmondson:

This is why research is important into the disease to understand why the kidney decides to behave all of a sudden and go, "See you later. I'm going down," with the function. So, yeah, it was a massive shock.

Paul Shriever:

I mean, moving forwards, then, do you need treatment?

Ayesha Edmondson:

I'll be going on dialysis. I was then referred to the transplant team. Any dialysis patients will sit there for four or six hours on a machine or sometimes overnight so they can have a nocturnal dialysis. And it filters the blood back into the body.

Paul Shriever:

So it's doing the job of a kidney, essentially.

Ayesha Edmondson:

Yes. It enables me to function. With my condition, with FSGS, there is no cure. I have been told that even if I get a kidney transplant, FSGS, there is a strong chance it may come back [crosstalk 00:18:49]-

Chantal Boyle:

Oh, you're kidding?

Ayesha Edmondson:

Yeah.

Chantal Boyle:

Well, that must be so disappointing to have found that out.

Ayesha Edmondson:

Yeah. I was gutted when they told me that. I was like, "What?" I said, "So, seriously, I'm probably better off staying on dialysis." And they said, "It depends how you cope with it." Some people actually choose to stay on dialysis. They don't want the op. It's a very difficult journey because it's forever, then. For me, I'm open to all options. I want to live. So it's a no brainer for me. If it was the other way around and somebody needed my kidney, I would just say, "Yeah, have my spare." Because I don't think like that. I've always been brought up to think that you help one another. And I know why people think it's very, very... It's a very, very big ask. I know that. It's a big ask. I'm thinking of the kids for the future because my kids are mixed race, so their genetics will be even more rare. So their kidney matches will be harder to find.

Chantal Boyle:

Tell us about kidney matches.

Ayesha Edmondson:

We work on HLA matches. So you have blood group first and then the HLAs. You have 100 HLAs, their markers, that comes from your blood and tissue. That's a tissue marker, actually. I'm blood group AB positive, which means that I can receive any blood group. And then what they will do is match up a person's HLA, which is a tissue match. From 100, let's say 100, I'm just guessing, you need to have six indicators that are identical to you. And even if they match, there is a chance that your body could reject that foreign body.

Paul Shriever:

Is there any other alternative treatment other than just a replacement to a kidney, Ayesha?

Ayesha Edmondson:

Or dialysis, no. That's it. And even then, like I said, after you've had a transplant, your journey doesn't finish there. Your journey will continue for life. Because the debate we have and what we're trying to educate people and step forward to become more living donors is living donor kidneys have a survival rate better than a deceased donor. So from a deceased donor, we have a four to six hour window of implantation to get it from whomever it's coming from to the patient. And it has to have checks once it's in the hospital. So imagine the anxiety and the stress of a patient waiting. You've had the call. You could go straight there. You could be waiting in theater. And at last minute, that kidney, there could be a tiny problem with it. It's heartbreaking.

Paul Shriever:

Are you on a waiting list? What's happening with that now in terms of moving forwards?

Ayesha Edmondson:

I'm campaigning to find living a donor. But I volunteer with Kidney Research UK and to talk about it. That's why I became a peer educator. And I have the support from ACLT as well. I work with them with stem cell and organ donation side. So I'm an advocate to talk about it because when you hear from somebody real like myself, it becomes real. That's why we're talking about it. It's a hidden disability. People think I look normal, but I actually struggle on a daily basis. I asked for a hysterectomy and they wouldn't give me one because they said, this is really useful, that the ovaries release, and even up to menopausal age, they release the vitamin D into your bones. They produce vitamin D for you, for your bones. So you need that. And I was like, "God, like I need a hole in the head."

Chantal Boyle:

So you've spoken about the matching of the kidneys, but I want to hear a bit more about what you are doing about advocating within the BAME communities. Why is that important?

Ayesha Edmondson:

It's important because the NHS have lots of indicators and surveys and research to show that there are in black, ethnic background, Bangladeshi, Pakistani, and South Asian communities, there are more people that are opting out in those communities since Max and Keira's Law came in. Now, we believe a lot of it is probably from fear and lack of education. And some of it's personal choice. A lot of it is questionable, whether in Islam, whether it's permissible. Yes, it is. It's absolutely fine. But the wording of donation interprets to the Muslim communities that it's not permissible. So they see it as that it's not allowed.

Paul Shriever:

What's awareness like for that?

Ayesha Edmondson:

Not a lot. Not enough. People aren't aware of it. It's because we haven't talked about it.

Paul Shriever:

No. And it's a big ask, isn't it?

Ayesha Edmondson:

Big ask. Studies have shown in America that they call it The Big Ask.

Chantal Boyle:

What is the recovery time like for a donor? So how long does the operation take, and how long would it be before they could get back?

Ayesha Edmondson:

So the donor's operation would probably be anything between two to four hours. It's usually two hours if it's straightforward, but they tend to say two to four hours. Now, a transplant's operation could be anything from six hours to longer. And I don't want to say how longer. It just depends on the individual patient. And the recovery time for the donor is usually two to three weeks, sometimes less if they're fit in healthy and able to... Because they get you up. They get you up straight away. Same as the transplant. When you've had a transplant, they want you up within a few hours.

Paul Shriever:

Can I ask you about the Sunflower?

Ayesha Edmondson:

Yes.

Paul Shriever:

So you use one?

Ayesha Edmondson:

So I've got two of the lanyards and I keep always losing the cards. So I'm always forever replacing them.

Paul Shriever:

So to someone who's considering using a Sunflower, what would you say to them?

Ayesha Edmondson:

If you are considering getting a Sunflower card, it's probably one of the little life saving tools you will carry with you. And if you choose to share your details on the back of it, that is important too. That is a personal choice.

Paul Shriever:

Do you think awareness is better? Is it something that's growing, do you think, in the right way?

Ayesha Edmondson:

The awareness of Sunflower, are people more aware? Yeah. I talk about it all the time. I always tell people, "You need one because you're hobbling. They need to know that you're hobbling. If you fall, if you're out of breath, you need one. You can just get a simple plain one. You don't have to have one that's labeled." "Oh, I don't want anyone to know that I've got this." I say, "They don't need to know that. They need to know that you've got something else underneath." So I tell people about the car stickers because that is really, really important. So people within this blood disability should be on that kind of priority list.

Chantal Boyle:

What do you hope the future holds for you?

Ayesha Edmondson:

I hope I get a chance of being able to see my kids get married and live their careers to the full. That's it. I'll just be humbled if I get a second chance at life.

Chantal Boyle:

So if you've got any advice for somebody who is on this journey?

Ayesha Edmondson:

Never be afraid to ask questions. Whether it's to the nurses, your consultants, any of the support groups, reach out. Somebody will answer the question. And educate yourself about your condition. It's helped me process the journey better. I know I can understand it, so I don't panic. It's as simple as that. If I understand something, I can deal with it better mentally. If I don't understand something, I go panic mode. So, that is probably a lot of people. So don't be scared of asking the tough questions.

Chantal Boyle:

Thank you. And thanks for taking the time. I know that you're not feeling well. You've had lots going on in your personal life. And it was really kind of you to still carve out a bit of time for us to have this conversation and to help educate other people who either have kidney disease or don't have kidney disease, because it's important that everybody understands what the kidneys do for us, like you said. We will put in the show notes the link to Kidney Research UK so that people can find out more and can also find out about becoming a donor if they are interested in doing that.

 

Speaker 4:

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