Patient Stories
Patient Stories
Read stories from other patients and gain insights on their journey and how they have navigated from diagnosis to today.
Stephen
Adelaide, Australia
When I finally started dialysis, I felt unsupported. I felt like I didn’t belong there. I was much younger than everyone else. I remember how huge the needle was.
When I was a child, I remember often hearing that in 1977, my Pop – my grandfather, my hero – had a kidney transplant. I always remember the reference to his transplant, but didn’t know at the time that it was because he had polycystic kidney disease. As a child I didn’t understand that my Mum had the same illness, that it was hereditary and that I could potentially have it too.
In my teens, Mum started to mention polycystic kidney disease a bit more, usually in passing. I think she was trying to prepare my sister and I that we would need to get tested at some point.
So in my 20s, I had the ultrasound scan. To me, I was just ticking the box. My sister went first. Didn’t have it. I went next, a couple of weeks later. I wasn’t worried as I waited for the result in the doctor's office.
I waited for a long time. I remember thinking about what was going on at work, or whatever, and then I was handed an envelope. No explanation – I was just handed an envelope by a member of the admin staff. I thought, “Oh, well, I’d better look. I wonder if I’ve got it, or not”. There was a sense of anticipation, but I still wasn’t worried. It was almost a bit exciting.
I certainly wasn't prepared for what I read as I sat in this waiting room, alone. I opened the envelope, and remember very clearly scanning through a lot of medical jargon, a lot of numbers, and then the words ‘consistent with polycystic kidney disease’. Everything froze.
I was shocked at first. Shock quickly manifested into fear. I called my Mum and she was upset. I’m a parent now and better understand how she must have felt – I think there was a lot of guilt initially, because she could see how scared I was. I told my partner. We were at a loss.
When I next saw my GP, I was given my first referral to a nephrologist. I had so many questions. What did it mean for my future? How would it play out? I had this real fear of mortality that came with the diagnosis. The doctors kept telling me they couldn’t cure this, couldn’t stop it . They told me to not try to control it. That it would be an issue way down the track.
I found that concept really, really hard. But then I got to a point, as I understood more and more about it, and understood where I was in my progression, where I was able to just put it to the back of my mind for many, many years. I was a young guy with great friends and family, a job I loved and bright prospects. I didn’t see that I was any different to the friends around me looking ahead to their futures too.
I'd have an annual checkup with a nephrologist, which included bloodwork and that's where I learned about creatinine. Then I actually started tracking it myself on a spreadsheet, adding new data points every year. As I was approaching 38 – by this time, living interstate with my wife and our young kids – I could see the dipping line sharpening a little bit. At the same time, I noticed that the conversation and tone of my doctors became a bit more serious, more urgent.
I had many moments where I'd come out of those medical appointments, catching my breath in the car and just sitting there in the car park crying as I processed the latest news. I started to realise that my crunch point was coming sooner than I and everyone else had expected. My kidney function was decreasing rapidly. The frequency of my visits to the doctor increased. I was only 38.
Physically, I was quite bloated through my stomach. Many people didn’t understand what was happening, saying insensitive things like, “You have to stop drinking so many beers mate!” Little did they know what was actually going on. I became very self-conscious about my body for the first time ever. I would carefully choose what to wear, even down to colours as I tried to find ones that would help me appear slimmer.
The physical symptoms got worse. I started experiencing severe fatigue. I would come home from work and literally just pass out on the couch as family life went on around me. I was peeling myself out of bed in the morning.
My social life started to change. I got push-back from mates when I said I wasn’t drinking. I felt I had to explain the reason why and that it was a really difficult time for me, my wife and our two young boys.
Eventually, in late 2021, it got to the stage when I was asking my doctor when I could start dialysis.
I needed relief. I wasn't really coping emotionally or physically and it was having an impact on my family I really struggled with the fact that I had to get sicker before the doctors could do anything to help me – because of the nature of polycystic kidney disease, there's nothing you can do until your kidneys have failed or are a long way towards failing.
When I finally started dialysis, I felt unsupported. I felt like I didn’t belong there. I was much younger than everyone else. I remember how huge the needle was. There were a few times where I almost passed out, and didn't understand why, and they were quite scary moments. I was freezing cold the first time I went. No one told me to bring a blanket.
Over time, though, I built connections with the nurses and learned who the best needlers were. I had to consciously choose to have a positive mindset. It was tough. I knew eventually I would get a transplant from a deceased donor; I just had to stick it out on dialysis until then, doing the early mornings, three times a week, trying to manage my work and life admin while I was hooked up.
Then one day in February 2022 I got a message from my cousin, Sally. “Hey - wanted to check in. I know you've been going through a really tough time, and I wanted to let you know that if it came down to me donating a kidney to you, I would really like to do it.”
I’ve always been close with Sal. She's a rock. Solid values, driven, kind-hearted and an energetic force-of-nature. But this was something else.
I replied, "I love you – thank you. You're too kind. But don't be silly!” She came back saying, “No, no, no, no, I'm serious. I've spoken to Rob [her husband] and I've got a rough idea of what to do. I’m serious”.
What followed was almost six months of comprehensive testing for both Sally and I, before we got to the point where everything had been checked out. We were a near-perfect match. Slowly, the possibility was getting closer.
But I knew I had to protect myself from getting too excited and hopeful. I knew if something happened for either of us, it may not pan out.
So, dialysis continued. I'd be obsessed with the fact that this machine was keeping me alive and how dependent I was on it.
Finally, eight months after Sally’s initial message, the surgery date was scheduled.
There are no words to describe how I felt leaving my last dialysis session before surgery. I just remember quietly, not wanting to make a big scene, grabbing the nurses’ hands, looking them in the eye and saying, “thank you”. They wished me luck, telling me warmly, “We don't want to see you here again”.
The night before my operation I was in hospital and I felt a sense of peace I hadn’t had in a long time. It wasn't a celebration or anything. It was just like – I've done this, I’ve gotten this far and now I need to hold on. Sally and I had a chance to see each other and marvel together at what was about to happen.
In the morning, Sally went in for her surgery first. As I waited, the nurses kept me up to date on how she was doing.
“They're taking her kidney out at the moment. She's fine”, they kept on reassuring me. I was prepped and wheeled into surgery in the early afternoon. The next thing I remember was waking up after it was done. The first thing I did was ask about Sally. I remember my relief at hearing she was OK.
The surgery went very well, but I had intense pain for the next few days. They took me off painkillers and that's when it got really, really hard. I couldn't move. I couldn't really walk. I had tubes and pipes coming out of everywhere.
What surprised me most as I recovered was the huge mental comedown after the transplant. Everyone is celebrating you, thinking it's over, whereas you feel like it's the start of a whole other journey.
I was really up and down after that. My numbers weren’t quite right but the doctors didn't seem too concerned. I was searching for answers, but then I learned a really big lesson - again, around releasing control. I needed to know I could trust the people caring for me, but it was also important that I knew enough about what was going on to start asking the right questions.
Six or seven weeks after my transplant, when I was past some of the biggest challenges of my recovery, I felt things shift for me emotionally. I had this overwhelming sense of gratitude to my doctors, to Sally, to my wife, to my boys, to everyone.
After the removal of my stent, I had my freedom back, for the first time in a long time. I returned to work and started to get back into activities and hobbies. The best part was having time and energy back for my family.
Overall, I have had so many learnings from my experiences.
One is about my connections with others. While there were friends who weren’t ‘in the trenches’ with me as I’d hoped, there were other people who really stepped up to support us. Though it was an upsetting learning at the time, it’s been valuable to better understand the value of community, in the good times and the tough ones. For that, I’m grateful.
Another lesson has been understanding my own strength, resilience and tenacity. This is without doubt the toughest thing I’ve been through – and I survived it.
One of the reasons I wanted to share my story is because I wish I’d had someone – a younger renal patient – that I could have talked to openly and honestly when I was facing this challenge. Maybe that would have quelled some of that fear and anxiety that I felt for all those years. My Mum was an amazing support, but our journeys were different and we were at different life stages when going through them.
I feel proud of myself that I've been able to get through something so intense and come out the other side with a good attitude. I have an urge now to help other people by being vulnerable, honest and open about sharing my journey and the things I’ve learned because of it.
When I was a child, I remember often hearing that in 1977, my Pop – my grandfather, my hero – had a kidney transplant. I always remember the reference to his transplant, but didn’t know at the time that it was because he had polycystic kidney disease. As a child I didn’t understand that my Mum had the same illness, that it was hereditary and that I could potentially have it too.
In my teens, Mum started to mention polycystic kidney disease a bit more, usually in passing. I think she was trying to prepare my sister and I that we would need to get tested at some point.
So in my 20s, I had the ultrasound scan. To me, I was just ticking the box. My sister went first. Didn’t have it. I went next, a couple of weeks later. I wasn’t worried as I waited for the result in the doctor's office.
I waited for a long time. I remember thinking about what was going on at work, or whatever, and then I was handed an envelope. No explanation – I was just handed an envelope by a member of the admin staff. I thought, “Oh, well, I’d better look. I wonder if I’ve got it, or not”. There was a sense of anticipation, but I still wasn’t worried. It was almost a bit exciting.
I certainly wasn't prepared for what I read as I sat in this waiting room, alone. I opened the envelope, and remember very clearly scanning through a lot of medical jargon, a lot of numbers, and then the words ‘consistent with polycystic kidney disease’. Everything froze.
I was shocked at first. Shock quickly manifested into fear. I called my Mum and she was upset. I’m a parent now and better understand how she must have felt – I think there was a lot of guilt initially, because she could see how scared I was. I told my partner. We were at a loss.
When I next saw my GP, I was given my first referral to a nephrologist. I had so many questions. What did it mean for my future? How would it play out? I had this real fear of mortality that came with the diagnosis. The doctors kept telling me they couldn’t cure this, couldn’t stop it . They told me to not try to control it. That it would be an issue way down the track.
I found that concept really, really hard. But then I got to a point, as I understood more and more about it, and understood where I was in my progression, where I was able to just put it to the back of my mind for many, many years. I was a young guy with great friends and family, a job I loved and bright prospects. I didn’t see that I was any different to the friends around me looking ahead to their futures too.
I'd have an annual checkup with a nephrologist, which included bloodwork and that's where I learned about creatinine. Then I actually started tracking it myself on a spreadsheet, adding new data points every year. As I was approaching 38 – by this time, living interstate with my wife and our young kids – I could see the dipping line sharpening a little bit. At the same time, I noticed that the conversation and tone of my doctors became a bit more serious, more urgent.
I had many moments where I'd come out of those medical appointments, catching my breath in the car and just sitting there in the car park crying as I processed the latest news. I started to realise that my crunch point was coming sooner than I and everyone else had expected. My kidney function was decreasing rapidly. The frequency of my visits to the doctor increased. I was only 38.
Physically, I was quite bloated through my stomach. Many people didn’t understand what was happening, saying insensitive things like, “You have to stop drinking so many beers mate!” Little did they know what was actually going on. I became very self-conscious about my body for the first time ever. I would carefully choose what to wear, even down to colours as I tried to find ones that would help me appear slimmer.
The physical symptoms got worse. I started experiencing severe fatigue. I would come home from work and literally just pass out on the couch as family life went on around me. I was peeling myself out of bed in the morning.
My social life started to change. I got push-back from mates when I said I wasn’t drinking. I felt I had to explain the reason why and that it was a really difficult time for me, my wife and our two young boys.
Eventually, in late 2021, it got to the stage when I was asking my doctor when I could start dialysis.
I needed relief. I wasn't really coping emotionally or physically and it was having an impact on my family I really struggled with the fact that I had to get sicker before the doctors could do anything to help me – because of the nature of polycystic kidney disease, there's nothing you can do until your kidneys have failed or are a long way towards failing.
When I finally started dialysis, I felt unsupported. I felt like I didn’t belong there. I was much younger than everyone else. I remember how huge the needle was. There were a few times where I almost passed out, and didn't understand why, and they were quite scary moments. I was freezing cold the first time I went. No one told me to bring a blanket.
Over time, though, I built connections with the nurses and learned who the best needlers were. I had to consciously choose to have a positive mindset. It was tough. I knew eventually I would get a transplant from a deceased donor; I just had to stick it out on dialysis until then, doing the early mornings, three times a week, trying to manage my work and life admin while I was hooked up.
Then one day in February 2022 I got a message from my cousin, Sally. “Hey - wanted to check in. I know you've been going through a really tough time, and I wanted to let you know that if it came down to me donating a kidney to you, I would really like to do it.”
I’ve always been close with Sal. She's a rock. Solid values, driven, kind-hearted and an energetic force-of-nature. But this was something else.
I replied, "I love you – thank you. You're too kind. But don't be silly!” She came back saying, “No, no, no, no, I'm serious. I've spoken to Rob [her husband] and I've got a rough idea of what to do. I’m serious”.
What followed was almost six months of comprehensive testing for both Sally and I, before we got to the point where everything had been checked out. We were a near-perfect match. Slowly, the possibility was getting closer.
But I knew I had to protect myself from getting too excited and hopeful. I knew if something happened for either of us, it may not pan out.
So, dialysis continued. I'd be obsessed with the fact that this machine was keeping me alive and how dependent I was on it.
Finally, eight months after Sally’s initial message, the surgery date was scheduled.
There are no words to describe how I felt leaving my last dialysis session before surgery. I just remember quietly, not wanting to make a big scene, grabbing the nurses’ hands, looking them in the eye and saying, “thank you”. They wished me luck, telling me warmly, “We don't want to see you here again”.
The night before my operation I was in hospital and I felt a sense of peace I hadn’t had in a long time. It wasn't a celebration or anything. It was just like – I've done this, I’ve gotten this far and now I need to hold on. Sally and I had a chance to see each other and marvel together at what was about to happen.
In the morning, Sally went in for her surgery first. As I waited, the nurses kept me up to date on how she was doing.
“They're taking her kidney out at the moment. She's fine”, they kept on reassuring me. I was prepped and wheeled into surgery in the early afternoon. The next thing I remember was waking up after it was done. The first thing I did was ask about Sally. I remember my relief at hearing she was OK.
The surgery went very well, but I had intense pain for the next few days. They took me off painkillers and that's when it got really, really hard. I couldn't move. I couldn't really walk. I had tubes and pipes coming out of everywhere.
What surprised me most as I recovered was the huge mental comedown after the transplant. Everyone is celebrating you, thinking it's over, whereas you feel like it's the start of a whole other journey.
I was really up and down after that. My numbers weren’t quite right but the doctors didn't seem too concerned. I was searching for answers, but then I learned a really big lesson - again, around releasing control. I needed to know I could trust the people caring for me, but it was also important that I knew enough about what was going on to start asking the right questions.
Six or seven weeks after my transplant, when I was past some of the biggest challenges of my recovery, I felt things shift for me emotionally. I had this overwhelming sense of gratitude to my doctors, to Sally, to my wife, to my boys, to everyone.
After the removal of my stent, I had my freedom back, for the first time in a long time. I returned to work and started to get back into activities and hobbies. The best part was having time and energy back for my family.
Overall, I have had so many learnings from my experiences.
One is about my connections with others. While there were friends who weren’t ‘in the trenches’ with me as I’d hoped, there were other people who really stepped up to support us. Though it was an upsetting learning at the time, it’s been valuable to better understand the value of community, in the good times and the tough ones. For that, I’m grateful.
Another lesson has been understanding my own strength, resilience and tenacity. This is without doubt the toughest thing I’ve been through – and I survived it.
One of the reasons I wanted to share my story is because I wish I’d had someone – a younger renal patient – that I could have talked to openly and honestly when I was facing this challenge. Maybe that would have quelled some of that fear and anxiety that I felt for all those years. My Mum was an amazing support, but our journeys were different and we were at different life stages when going through them.
I feel proud of myself that I've been able to get through something so intense and come out the other side with a good attitude. I have an urge now to help other people by being vulnerable, honest and open about sharing my journey and the things I’ve learned because of it.
Rachael
Christchurch, United Kingdom
My daughter was only 14 months old at the time of the operation, making it even harder for Vince and I to leave her. However, we knew that this was a sacrifice we had to make for Vince's health.
Meet Rachael, a courageous and selfless woman who donated her kidney to her ex-husband, Vince, in April 2008. Rachael’s story is one of love, sacrifice, and perseverance.
When Vince was diagnosed with kidney disease, I didn't hesitate to get tested to see if I was a suitable donor. I went through extensive tests and a stressful time, but I remained focused on the positive outcome of helping Vince regain his health.
Despite being told I wasn't a suitable match for donation, my blood group was compatible with anyone, so the surgeon decided to go ahead anyway. However, the operation was cancelled three times due to unforeseen circumstances, including the surgeon breaking his arm, Vince getting an infection in his intravenous line, and a third cancellation.
During this challenging time, I felt alone and had nobody to talk to as no one understood what Vince and I were going through. However, I remained strong and focused, knowing that my decision to donate my kidney was the right one.
My daughter was only 14 months old at the time of the operation, making it even harder for Vince and I to leave her. However, we knew that this was a sacrifice we had to make for Vince's health.
Now, 15 years later, both Vince and I are both leading happy and healthy lives. Vince is even competing in the World Transplant Games, hoping to get a world record in sprinting for his age category (April 2023).
As for me, I’m now a mindset coach, helping others overcome negative mindsets and lead happier and more positive lives. My act of donating a kidney to Vince has inspired me to continue making a positive impact on others' lives.
My experience of kidney donation left me with a strong desire to give back and support other patients who were going through similar challenges. Years later, after reflecting on my experience, I recognized the need for easier access to past patients or mentors who could provide support to those currently going through similar challenges, regardless of the disease. So when Kevin from Supportal reached out to discuss being a mentor, I didn’t hesitate.
As I know from my own experience, being a patient can be a lonely experience. But talking to someone who has been through the same thing can make a huge difference. With Supportal, patients can connect with others who have been in their shoes and get the support and encouragement they need to navigate the challenges of their condition. Through aligning with this platform, I hope to make a positive impact on the lives of patients around the world, helping them to feel less alone and more empowered in their journey towards better health.
Rachael's story is a testament to the power of love, sacrifice, and perseverance. It shows that even in the toughest of times, we can rise above our challenges and make a positive difference in the world.
Meet Rachael, a courageous and selfless woman who donated her kidney to her ex-husband, Vince, in April 2008. Rachael’s story is one of love, sacrifice, and perseverance.
When Vince was diagnosed with kidney disease, I didn't hesitate to get tested to see if I was a suitable donor. I went through extensive tests and a stressful time, but I remained focused on the positive outcome of helping Vince regain his health.
Despite being told I wasn't a suitable match for donation, my blood group was compatible with anyone, so the surgeon decided to go ahead anyway. However, the operation was cancelled three times due to unforeseen circumstances, including the surgeon breaking his arm, Vince getting an infection in his intravenous line, and a third cancellation.
During this challenging time, I felt alone and had nobody to talk to as no one understood what Vince and I were going through. However, I remained strong and focused, knowing that my decision to donate my kidney was the right one.
My daughter was only 14 months old at the time of the operation, making it even harder for Vince and I to leave her. However, we knew that this was a sacrifice we had to make for Vince's health.
Now, 15 years later, both Vince and I are both leading happy and healthy lives. Vince is even competing in the World Transplant Games, hoping to get a world record in sprinting for his age category (April 2023).
As for me, I’m now a mindset coach, helping others overcome negative mindsets and lead happier and more positive lives. My act of donating a kidney to Vince has inspired me to continue making a positive impact on others' lives.
My experience of kidney donation left me with a strong desire to give back and support other patients who were going through similar challenges. Years later, after reflecting on my experience, I recognized the need for easier access to past patients or mentors who could provide support to those currently going through similar challenges, regardless of the disease. So when Kevin from Supportal reached out to discuss being a mentor, I didn’t hesitate.
As I know from my own experience, being a patient can be a lonely experience. But talking to someone who has been through the same thing can make a huge difference. With Supportal, patients can connect with others who have been in their shoes and get the support and encouragement they need to navigate the challenges of their condition. Through aligning with this platform, I hope to make a positive impact on the lives of patients around the world, helping them to feel less alone and more empowered in their journey towards better health.
Rachael's story is a testament to the power of love, sacrifice, and perseverance. It shows that even in the toughest of times, we can rise above our challenges and make a positive difference in the world.
Vera & Lloyd
London, United Kingdom
It wasn’t an easy decision, my heart and mind were telling me to do it, but my family and friends were all against it...
VERA’S STORY (Kidney Donor)
Before my sister’s wedding in 2013, I never knew who Lloyd was, all I knew was that he was my brother in law’s best friend.
Fast forward, months after the wedding, I heard through my sister that Lloyd was very ill, he had kidney failure and needed a kidney transplant. He was asked by his consultant if there was anybody in his family that might be willing to donate. My brother-in-law and my sister came forward to donate. When I heard about it and although I didn’t really know Lloyd I didn’t think twice and offered to be tested with the others. My sister and I were both compatible, however for health reasons the doctors decided I would be a better match. That was it, I was on my way to becoming a living kidney donor! Like many other Black living donors, I had never heard about living donation till then.
It wasn’t an easy decision, my heart and mind were telling me to do it, but my family and friends were all against it. They couldn’t understand why I would risk my life to give someone the opportunity to live theirs’s, after all Lloyd was not family, he was not my partner, he was not even someone I called a friend! Everyone thought I was crazy to put my life at risk for someone who was practically a stranger!
But nothing could stop my decision. I wanted to help him have a better life and give him back his hope. To be honest, if Lloyd had died knowing that I could have saved his life and I didn’t, I don’t think that my life would ever be the same.
Today, thank God, we are both doing amazingly well, and I’m very proud of what I did.
Celebrating Black living donors is just an inspirational thing to do! It’s so wonderful to know others who have given a kidney just like you and seeing how proud they were, I felt that I shouldn’t be ashamed or try to hide this amazing act of generosity and kindness. It’ also lovely to speak with black kidney patients and encourage them to talk with their loved ones about living donation.
LLOYD’S STORY (Kidney Recipient)
Vera will always be my angel in disguise!
I mean disguise in the true sense of the word, I never knew Vera at the time I was struggling with kidney failure, but her decision to donate to someone who was not a family member, or even a friend changed my life and now we are best friends for ever.
Since she donated her kidney to me, I have my quality of life back! I can now spend precious time with my loved ones, travel the world and continue to fulfil my passion of bodybuilding. When I was on dialysis this was not possible. I and my family will forever be grateful. Vera and I both now live healthily and are enjoying life to the max! If you are brave enough to be a living donor for someone, do it! You will be transforming someone’s life.
VERA’S STORY (Kidney Donor)
Before my sister’s wedding in 2013, I never knew who Lloyd was, all I knew was that he was my brother in law’s best friend.
Fast forward, months after the wedding, I heard through my sister that Lloyd was very ill, he had kidney failure and needed a kidney transplant. He was asked by his consultant if there was anybody in his family that might be willing to donate. My brother-in-law and my sister came forward to donate. When I heard about it and although I didn’t really know Lloyd I didn’t think twice and offered to be tested with the others. My sister and I were both compatible, however for health reasons the doctors decided I would be a better match. That was it, I was on my way to becoming a living kidney donor! Like many other Black living donors, I had never heard about living donation till then.
It wasn’t an easy decision, my heart and mind were telling me to do it, but my family and friends were all against it. They couldn’t understand why I would risk my life to give someone the opportunity to live theirs’s, after all Lloyd was not family, he was not my partner, he was not even someone I called a friend! Everyone thought I was crazy to put my life at risk for someone who was practically a stranger!
But nothing could stop my decision. I wanted to help him have a better life and give him back his hope. To be honest, if Lloyd had died knowing that I could have saved his life and I didn’t, I don’t think that my life would ever be the same.
Today, thank God, we are both doing amazingly well, and I’m very proud of what I did.
Celebrating Black living donors is just an inspirational thing to do! It’s so wonderful to know others who have given a kidney just like you and seeing how proud they were, I felt that I shouldn’t be ashamed or try to hide this amazing act of generosity and kindness. It’ also lovely to speak with black kidney patients and encourage them to talk with their loved ones about living donation.
LLOYD’S STORY (Kidney Recipient)
Vera will always be my angel in disguise!
I mean disguise in the true sense of the word, I never knew Vera at the time I was struggling with kidney failure, but her decision to donate to someone who was not a family member, or even a friend changed my life and now we are best friends for ever.
Since she donated her kidney to me, I have my quality of life back! I can now spend precious time with my loved ones, travel the world and continue to fulfil my passion of bodybuilding. When I was on dialysis this was not possible. I and my family will forever be grateful. Vera and I both now live healthily and are enjoying life to the max! If you are brave enough to be a living donor for someone, do it! You will be transforming someone’s life.
Jim
Crown Point, Indiana, United States
Having someone who truly understood what I was going through empowered me to stay positive and to feel less alone.
PKD runs in my family, my dad had it. I was diagnosed in 1979, I was 25.
Initially I presented with chest pains and then the doctors did an x-ray and found cysts on both kidneys.
Because of my family history of PKD, I was referred to a nephrologist at Indiana University Health. He immediately put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every 6 months and took my medicine. I did the best I could do to stay on the kidney diet. I was told there is no cure for PKD, and at that time there was very little they could do for me.
I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were impacted. It affected my relationships, my legal career and my study plans.
Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012, I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a 4 year stretch on dialysis. My schedule was 3 days a week, 4 hours per session.
I opted for in centre hemodialysis. I was having issues with vertigo and wanted to be around other people during dialysis in case something happened.
I was very, very angry when I first went on dialysis. After watching my Dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My Dad passed after a short 5 yrs on dialysis, and I felt I was on the same life path as him. I felt like my days were numbered.
One of my dearest friends, Maureen O'Brien, looked after me. Forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward 2 MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Having someone who truly understood what I was going through empowered me to stay positive and to feel less alone.
I was 4 years waiting for a kidney. During this time I got a lot of false alarm calls. The hospital would call and tell me not to eat anything and prepare for surgery, as I was 6th on the list, but then I was told it went to someone else.
I was told to stay level. To never get too excited or too disappointed. To not get my hopes up until I was actually being wheeled into surgery. I took the positives from these false alarm calls. At least I was being called, I was on the list and I was on their radar. I would get a kidney, it would just take some time.
Eventually I got the call that they had a kidney for me. I remember my friend driving me to the hospital at 2 AM.
After the transplant, I made a conscious choice to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinic mates who could not advocate for themselves. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if I did not accept this responsibility, maybe no one else would.
I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my Dad & Maureen would be proud of me.
My Dad was the first person in the mid-west to have peritoneal dialysis. I remember the day he was in hospital and there was another patient who wanted to speak with him. My Dad was quite ill at the time, but he mustered up the strength to speak to this other patient. My Dad shared his experience, answered this patient's questions about peritoneal dialysis.
I saw how much support the other patient got from my dad sharing his personal experience. I realised he was able to alleviate some of the anxiety in this other patient. It’s one of the reasons I became such a strong patient advocate.
PKD runs in my family, my dad had it. I was diagnosed in 1979, I was 25.
Initially I presented with chest pains and then the doctors did an x-ray and found cysts on both kidneys.
Because of my family history of PKD, I was referred to a nephrologist at Indiana University Health. He immediately put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every 6 months and took my medicine. I did the best I could do to stay on the kidney diet. I was told there is no cure for PKD, and at that time there was very little they could do for me.
I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were impacted. It affected my relationships, my legal career and my study plans.
Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012, I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a 4 year stretch on dialysis. My schedule was 3 days a week, 4 hours per session.
I opted for in centre hemodialysis. I was having issues with vertigo and wanted to be around other people during dialysis in case something happened.
I was very, very angry when I first went on dialysis. After watching my Dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My Dad passed after a short 5 yrs on dialysis, and I felt I was on the same life path as him. I felt like my days were numbered.
One of my dearest friends, Maureen O'Brien, looked after me. Forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward 2 MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Having someone who truly understood what I was going through empowered me to stay positive and to feel less alone.
I was 4 years waiting for a kidney. During this time I got a lot of false alarm calls. The hospital would call and tell me not to eat anything and prepare for surgery, as I was 6th on the list, but then I was told it went to someone else.
I was told to stay level. To never get too excited or too disappointed. To not get my hopes up until I was actually being wheeled into surgery. I took the positives from these false alarm calls. At least I was being called, I was on the list and I was on their radar. I would get a kidney, it would just take some time.
Eventually I got the call that they had a kidney for me. I remember my friend driving me to the hospital at 2 AM.
After the transplant, I made a conscious choice to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinic mates who could not advocate for themselves. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if I did not accept this responsibility, maybe no one else would.
I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my Dad & Maureen would be proud of me.
My Dad was the first person in the mid-west to have peritoneal dialysis. I remember the day he was in hospital and there was another patient who wanted to speak with him. My Dad was quite ill at the time, but he mustered up the strength to speak to this other patient. My Dad shared his experience, answered this patient's questions about peritoneal dialysis.
I saw how much support the other patient got from my dad sharing his personal experience. I realised he was able to alleviate some of the anxiety in this other patient. It’s one of the reasons I became such a strong patient advocate.
Kevin
London, United Kingdom
I was back at the gym 6 weeks post operation, starting slow and progressively got fitter and stronger. Life is pretty normal now. I’m married, relocated to a new country, still enjoy surfing, exercise, good wine and good conversation with friends and have a successful career as a Product Manager.
In 2014, my brother was diagnosed with Chronic Kidney disease with late stage kidney failure at the age of 29. He was rushed to hospital and had to have an emergency central venous catheter put in so that he could start dialysis immediately and continue for 4 hours every day thereafter. There was a lot for him to come to terms with, especially at 29 years old. My brother's dialysis unit was full of wonderful people, but they were all decades older than him so it was hard for him to relate to their stories and feel understood as a single 29 year old when trying to work through how to identify the best dialysis option to choose for his lifestyle, the pros and cons of each and the prospect of living life needing dialysis moving forward. I was 24 years old at this stage, 2 years into my professional career with an active social life, long term girlfriend (now wife) and a love of the outdoors and exercise. I spent my weekends meeting up with friends, surfing, trail running, mountain biking, etc.
After a few months, I was able to take the necessary tests (tissue type, blood group) to see whether I could donate a kidney to my brother. I was the only one in the family to test as it was expensive and our medical insurance only covered one set of tests. Additionally, my kidney would likely give my brother the best chance of a longer, healthy life with lower risk of rejection compared to my parents. The test results came back with a very positive tissue type match which was great news. I definitely had some concerns regarding what life would be like post kidney donation, especially with regards to exercise and the overall impact on my life, but my desire to help my brother made these concerns feel selfish and inconsequential.
The kidney donation and transplantation process was extensive. There were further tests on kidney function and multiple sessions with counselors and physicians to ensure all is in order and that I was fully aware of the donation process and procedure. Throughout the process, there were many resources available and access to support was included but only in the form of a limited number of professional counseling sessions. When attending these counseling sessions the answers to my questions seemed to be quoted from a book rather than from someone who really understood what it was like to be in my position and the physical and emotional challenges that I would be dealing with in the near future. After attending a few mandatory counseling sessions, I was on my own. I found there was limited to no access to others in similar positions, present or past.
Post-operation, I was in hospital for 3 days before being able to go home to recover. Those 3 days were quite difficult as I was in pain but luckily that got easier each day before going home. I was off work for 2 weeks while recovering at home, each day getting stronger. I have a scar just below my belt line and when I returned to work, this would hurt occasionally when sitting in a specific position, but mostly I was comfortable with minimal pain. I was back at the gym 6 weeks post operation, starting slow and progressively got fitter and stronger. Life is pretty normal now. I’m married, relocated to a new country, still enjoy surfing, exercise, good wine and good conversation with friends and have a successful career as a Product Manager. I get my blood pressure/kidney function tested every year. Apart from that, I don't really think about my donation that much and my brother is happy, healthy and married with a little girl.
After my positive experience, I felt the need to give back and support other patients going through kidney donation. I got involved where possible and gave a few talks on what it was like to donate a kidney, but there were many barriers to peer support programs providing support to patients, especially one-on-one.
On reflection many years after the operation, I recognised that the process of being a patient and going through the emotional and physical challenges that go with it are difficult and there should be easier access to past patients or mentors that are wanting to support existing patients busy going through what they went through themselves, irrespective of the disease. To address these barriers, we have decided to build Supportal to provide a global platform for peer support and ensure that patients have easy access to trained mentors when they need it.
Being a patient can be lonely. Talking to someone who’s been there can help.
In 2014, my brother was diagnosed with Chronic Kidney disease with late stage kidney failure at the age of 29. He was rushed to hospital and had to have an emergency central venous catheter put in so that he could start dialysis immediately and continue for 4 hours every day thereafter. There was a lot for him to come to terms with, especially at 29 years old. My brother's dialysis unit was full of wonderful people, but they were all decades older than him so it was hard for him to relate to their stories and feel understood as a single 29 year old when trying to work through how to identify the best dialysis option to choose for his lifestyle, the pros and cons of each and the prospect of living life needing dialysis moving forward. I was 24 years old at this stage, 2 years into my professional career with an active social life, long term girlfriend (now wife) and a love of the outdoors and exercise. I spent my weekends meeting up with friends, surfing, trail running, mountain biking, etc.
After a few months, I was able to take the necessary tests (tissue type, blood group) to see whether I could donate a kidney to my brother. I was the only one in the family to test as it was expensive and our medical insurance only covered one set of tests. Additionally, my kidney would likely give my brother the best chance of a longer, healthy life with lower risk of rejection compared to my parents. The test results came back with a very positive tissue type match which was great news. I definitely had some concerns regarding what life would be like post kidney donation, especially with regards to exercise and the overall impact on my life, but my desire to help my brother made these concerns feel selfish and inconsequential.
The kidney donation and transplantation process was extensive. There were further tests on kidney function and multiple sessions with counselors and physicians to ensure all is in order and that I was fully aware of the donation process and procedure. Throughout the process, there were many resources available and access to support was included but only in the form of a limited number of professional counseling sessions. When attending these counseling sessions the answers to my questions seemed to be quoted from a book rather than from someone who really understood what it was like to be in my position and the physical and emotional challenges that I would be dealing with in the near future. After attending a few mandatory counseling sessions, I was on my own. I found there was limited to no access to others in similar positions, present or past.
Post-operation, I was in hospital for 3 days before being able to go home to recover. Those 3 days were quite difficult as I was in pain but luckily that got easier each day before going home. I was off work for 2 weeks while recovering at home, each day getting stronger. I have a scar just below my belt line and when I returned to work, this would hurt occasionally when sitting in a specific position, but mostly I was comfortable with minimal pain. I was back at the gym 6 weeks post operation, starting slow and progressively got fitter and stronger. Life is pretty normal now. I’m married, relocated to a new country, still enjoy surfing, exercise, good wine and good conversation with friends and have a successful career as a Product Manager. I get my blood pressure/kidney function tested every year. Apart from that, I don't really think about my donation that much and my brother is happy, healthy and married with a little girl.
After my positive experience, I felt the need to give back and support other patients going through kidney donation. I got involved where possible and gave a few talks on what it was like to donate a kidney, but there were many barriers to peer support programs providing support to patients, especially one-on-one.
On reflection many years after the operation, I recognised that the process of being a patient and going through the emotional and physical challenges that go with it are difficult and there should be easier access to past patients or mentors that are wanting to support existing patients busy going through what they went through themselves, irrespective of the disease. To address these barriers, we have decided to build Supportal to provide a global platform for peer support and ensure that patients have easy access to trained mentors when they need it.
Being a patient can be lonely. Talking to someone who’s been there can help.