World Kidney Day and Living Well with Kidney Disease
To celebrate World Kidney Day 2021, Thursday March 11th, we have reached out to a number of kidney patients across Wales. To embrace the theme of Living Well with Kidney Disease, they are sharing their journeys with us through out the week. Each story will be unique and powerful, We hope these journeys will offer our readers some comfort no matter what stage of their own journey they are at.
Beth’s son Joseph was diagnosed with Nephrotic Syndrome at 6 years old. This is their family’s story.
“Joseph has proven that you can live a full and happy life with kidney disease.”
Our son, Joseph, was diagnosed with Nephrotic Syndrome at the age of 6. As parents, we were very worried, as we didn’t know anything about it and were advised not to look for information on the internet, as it can be inaccurate. Kidney Wales provide a wealth of knowledge, information and reassurance. Joseph is now 18. He takes medication to control his condition, but is fit, well and lives life to the max! He raises funds for Kidney Wales as a way of thanking them for their continued support.
It is unknown what caused Joseph’s Nephrotic Syndrome, but his condition is controlled by steroids and levamisole. He leads a normal, healthy lifestyle and likes to keep fit. I remember when Joseph was in hospital following his diagnosis, he was given a Nintendo DS for being brave – he’d wanted one for ages but couldn’t play it because his hands were too swollen! As Joseph went through school, he wanted to keep his condition a secret and did not like having to tell peers and teachers about it. For example, he didn’t want to take his medication on overnight school trips or to sleepovers at his friends homes.
When Joseph was first diagnosed, as parents, we were very worried about his future. However, Joseph has proven that you can live a full and happy life with kidney disease. He is no different from his peers, he just needs medication to help his kidneys behave! He loves mountain biking, he has coped with lockdown by building his own mountain bike and hopes to enter professional competitions as soon as possible.
We enjoy spending time as a family. Joseph, along with his dad and brother, plays football regularly. He was due to start University in September of 2020, but has so far done his studies online at home, he is looking forward to going to the university when it is possible.
We would like to thank all of the staff at The Children’s Kidney Centre, UHW are absolutely amazing in the support and care that they provide. In addition, we had great support from Danielle at Kidney Wales. She really is a lovely lady and we are proud to help her fundraising initiatives.
Leni and Eirlys’ Story
A story from Mother and Daughter and how they have learned to ‘Live Well with Kidney Disease’.
“At times it’s been very frightening, humbling but most of all inspirational.”
I’m Mair and I’d like to take you on the journey of my kidney dialysis and in particular my home dialysis. At times it’s been very frightening, humbling but most of all inspirational. A roller coaster ride with lots of peaks and troughs so please feel free to come along and join me on this enlightening life-changing journey.
It all started back in February 2019 when after a short period of feeling very ill I was admitted to hospital and diagnosed with multi myeloma. The cancer attacked my kidneys which meant I would require dialysis. I was welcome to a completely new world and way of life. But one filled with kindness, care and dedication. You could not ask to find nicer nursing team who were prepared to go the extra mile.
I spent 6-months in hospital and came home just having to pop in once a week to have my neckline checked and bloods taken. To say it came as a shock is putting it mildly when I was told I was going to need dialysis on a regular basis for the rest of my life. It was like being hit by a train! Once again, those true professionals came to my rescue and threw me a lifeline. Home dialysis.
At the beginning I was very sceptical, and it all seemed like too much hassle and upheaval. After all, where would I put all the equipment required and how would we sort out the training. And how much would it cost us? I soon discovered that we didn’t need that much space it would all be installed free of charge and my lovely husband said he was prepared be trained up for using the Machine. So, my spare room wouldn’t become filled with junk after all, it now had a purpose
For us COVID-19 has had some positive effects. I was shielding, my husband didn’t go to work, and the unit very kindly agreed to train him on the machine. Our home dialysis nurse Melanie could not have been more supportive and encouraging.
The process to get here involved visits, from plumbers and electricians. Our first delivery of equipment was a bit overwhelming; you do need some space to store all the medical supplies.
Our first session was on a Tuesday, it didn’t go as smoothly as planned.
My Venus pressure decided to play up to a degree that it had not done before. With full support and encouragement from Mel, there was no panicking, it was a training opportunity.
My next session was the Friday morning before our weekend away. Mel kindly agreed to come along early so that we could get this out the way and go, that’s exactly what we did. Mel was with us for our next few sessions, but she would soon be on leave! Mel assured us that she was more than happy for us to go solo and there would always be someone at the end of the phone. So, solo it was and here we are. We’ve lived to tell the story.
The beauty of it all is I am able to change my dialysis days to suit our plans. In a period of just over 18months I went from knowing nothing about home dialysis, to being sat in the comfort of my own home with all the flexibility it offers. There is no more travelling backwards and forwards to the hospital. For me, the benefits outweigh the negatives.
I’ve been fortunate to be offered the services of the clinical psychologist. It has been invaluable for my sanity, a lifesaver, especially with the world being in such a state flux, COVID-19. If you have ever thought about calling on these services, don’t hold back take the bull by the horns and ask! The team could not be more supportive and encouraging.
If you are at the beginning of your home dialysis journey, enjoy the ride and all the freedom it will give you, happy travels.
“[Our Kidney Community] have all really enriched my life just by being a part of it.”
David Jones suffered from Meningococcal Septicaemia, which led to kidney failure. This is his story.
My name is David Jones. I like going on adventures, and am a fan of progressive rock music! My story began when I was diagnosed with Meningococcal Septicaemia whilst travelling. This ultimately led to my kidney failure. I spent roughly two years on dialysis, and recently underwent a kidney transplant.
I feel lucky to say my experience with Chronic Kidney Disease hasn’t dramatically impacted my life, besides my ability to travel. Fortunately, my life is pretty much the same today as it was before my diagnosis, there are a lot of hospital check-ups though.
Our kidney community here in Wales is made up of some truly amazing people. I’ve gained and learned a lot through them. I have certainly met a lot of interesting people, patients and supporters alike. They have all really enriched my life just by being a part of it.
I know I have so much to look forward to. My plans will hopefully involve being able to travel again, safely, post lockdown. I’m excited to take on a new career challenge too, I would love to find a job suited to my personality type. My dream is to become a Mountain Leader, my tip to anyone going through a similar situation is to keep following your dreams and aspirations.
Liz was diagnosed with Anca Positive Vasculitis and Chronic Kidney Disease [CKD] in 2016 following an infection, this is Liz’s story that she shared with us.
“Tiredness will come and go – make the most of the “go” days.”
I am Liz, 53 years old. I work as a teacher in a Welsh medium primary school in South Wales. I am also a Welsh speaker, cat lover and a Winnie the Pooh enthusiast. I have a fantastic family which includes my husband Steve and my 13 year old daughter, Mali. I have been Type 1 diabetic since I was 11. I had a bilateral hip replacement 2 months after starting medication for vasculitis and CKD.
I was diagnosed with Anca Positive Vasculitis and CKD in 2016 following an infection. With this I had a biopsy in my back and my bloods were taken, the bloods showed an abnormality and then I was admitted urgently to hospital for further tests. The tests showed that the vasculitis had affected my kidneys. Over a six month period I received eight cyclophosphamide infusions and steroids. Now I take Ramipril for high blood pressure and MMF twice a day.
I think taking a moment to reflect can really help when moving forward. I can look back on times that make me laugh or giggle to myself. I remember after my treatment had started, I returned home, and my legs were swollen, they looked like MASSIVE hot dog sausages. My feet couldn’t fit into any shoes!
For me, the most challenging thing about living with CKD was how overwhelming the diagnosis was and how unsure about the future I was. The effects on my family plans were immediate and painful. The diet can be awkward on times, you always need to take care of what you eat. The foods I used to enjoy are not advisable e.g., crisps and citrus fruits. With the diet there is so much information out there and it can be very confusing on times. It takes a moment to get to know what works for you the best.
I have little tips and tricks that work for me. My top tip for others who struggle with CKD is to maintain a positive attitude and to build up your strength! Having CKD does not mean you can’t work or play but you need to pace yourself. I recommend setting small goals to become more active. Tiredness will come and go – make the most of the “go” days.
Living well with CKD hasn’t always been easy, especially since lockdown. I have, however, rediscovered my garden and the joy of growing my own vegetables. I have taken the opportunity to slow down and tackle some jig-saw puzzles too. I have even been able to increase the amount of walking I do, I started walking (pacing) the streets early in the morning or in the evening. Now I can go further, taking in the miles if I am feeling strong.
Pre-lockdown I enjoyed family time, shopping, traveling, the gym, animals, reading, and socialising. Once we are through lockdown I am looking forward to seeing my extended family, traveling, and going back to work properly in a school. I am also looking forward to being a more spontaneous me.