What life’s really like when you have kidney dialysis three times a week ...the first in an exclusive series of columns by former MLA Jo-Anne Dobson’s son Mark
In the first of his exclusive weekly columns, Mark Dobson son of former MLA Jo-Anne, tells what life’s really like being on home dialysis
At just five weeks old Mark Dobson was diagnosed with renal reflux which left him with only 19% function in one of his kidneys. When he was 15 years old he received a donor kidney transplant at the Royal Belfast Hospital for Sick Children, which gave him a healthy life for over eight years until it began to shut down and was removed in August this year. Since then he’s been on dialysis — three times a week for four hours at a time — at Daisy Hill Hospital in Newry.
Mark and his mum, former MLA Jo-Anne Dobson, are telling their story and promoting organ donation through his blog, which will be carried exclusively in the Belfast Telegraph and then online at Dobson On Dialysis.
Mark writes:
Just nine weeks ago I had my transplanted kidney removed at the City Hospital and spending life on dialysis has both its ups and downs.
I’m thankful to the Belfast Telegraph for allowing me to tell my story and share my blog through this column as a platform to explain the reality behind being a renal patient and what it’s like to be waiting on a transplant.
First, I’ll give you a little bit of background about myself. I’m 24 years old, a Manchester United and Northern Ireland uberfan and I live just outside Waringstown, in Co Armagh.
We have a family beef and cereal farm and I’m proud to say I attended Waringstown Primary School, Lurgan Junior High School, Newbridge Integrated College in Loughbrickland and Greenmount Agricultural College.
In my spare time I enjoy watching Manchester United win and win again, being an outside observer of politics in Northern Ireland — as my mum is a former MLA — and keeping up with the latest technology and social media.
Back in July this year I received a telephone call that would change my life. From January we knew that things weren’t going too well with my transplanted kidney and we were attending appointments and scans.
But it wasn’t until Dr Aisling Courtney phoned Mum and I on July 11 to tell us that my kidney needed to be removed that things really sank in that life wasn’t going to be quite the same again.
Under the expert care of my consultant surgeon Tim Brown, I had a threehour surgery on August 1 and since then have been undergoing dialysis at Daisy Hill Hospital in Newry under the amazing renal team and consultant nephrologist Dr Neal Morgan.
I totally get that not everyone reading this can comprehend what it’s like for renal patients like me to be hooked up to a machine in order to live. But I’ve previously described my life as a quirky journey and want to get across, through my column and social media, the many humorous aspects of being on dialysis and waiting for a kidney.
Plus it gives Mum and I the opportunity to continue to spread the organ donation message of hope.
Just last month, on the recommendation of one of my nurses, Fiona, Mum and I spent a super mid-week break living it up at the Grand Hotel, Malahide. Lovely to get a bit of normality back into my life before going back into the City Hospital again under the capable hands of my super surgeon, Tim Brown.
Things seldom run smoothly and post-surgery I developed some complications with my PD (peritoneal dialysis) line which required surgery. Getting this line working again means that I can undergo dialysis at home, rather than travel to Newry for four-hour HD (haemodialysis) three times each week. Home dialysis offers patients more independence as well as a less restrictive diet and fingers are crossed that things will be back on track again soon.
Together, Mum and I went through many hours of home dialysis training at Daisy Hill.
The column gives Mum and I the chance to spread the organ donation message
This included hooking up both a dummy, and then myself to my dialysis machine (no comment!). All worked perfectly until we got all of the equipment home and on my first night of home dialysis nothing would make it work. A very frantic late night phone call followed and it soon became clear all was not well and that I would need surgery again to try to get it to work.
My new renal diet is just one of the many changes I have been adjusting to following the loss of my kidney. I met with my dietician, Martina, at the City Hospital a few days after surgery and was presented with a list of dos and don’ts — mainly, I am on a low potassium diet which rules out a lot of things we would normally take for granted and means all my food, with the exception of the odd treat, must be cooked from fresh. If you had asked me six months ago whether I could survive without chocolate and fast food, the answer would have been a very loud ‘NO’ — or perhaps ‘never’. But this is the reality of my life which I and other HD dialysis patients are living with on a daily basis.
Mum has been part of the dedicated team at Queen’s University and the Belfast Trust who are promoting the Erskine House Tree to be voted Northern Ireland’s Woodland Trust Tree of the Year. It was lovely to link up with Zara and the team when we were down at the City Hospital for an appointment.
The voting is open online until October 8 and you can read all about this tree which has special significance for renal patients and their families because it stands as a symbol of hope. Can I ask you to take a minute to log on, read about it and vote to make it Northern Ireland’s top tree?
I’ve been a renal patient since birth and, while I’ve been in and out of hospitals countless times, I really want to again pass on my thanks and gratitude to all the doctors, nurses and staff who look after me. They are amazing and I will never be able to repay the kindness they show to me.
I know it’s unusual for a 24-year-old, but at the moment I have three homes — Waringstown, Daisy Hill Hospital and the 11th floor at Belfast City Hospital. As part of the transplant family it’s amazing the lifelong friendships which are built between patients whose journeys and lives crisscross as we wait to receive the ultimate gift of life.
It’s been nine weeks of massive changes for me and my family, from getting used to my new renal diet to learning all the steps to set up home dialysis and everything in between, but I’ve still managed to watch Northern Ireland hammer the Czech Republic 2-0 and kickstart my own online blog and social media accounts.
Not even being on dialysis is going to stop me following Northern Ireland. The last time I watched the Green and White Army take on Germany I was fit, healthy and cheering them on in France. Tomorrow I will be daring to dream at Windsor Park and if I have to pack up my dialysis machine and bring it with me I will be in Russia too. Hope you enjoyed my first column — please give me a follow online and help me continue to talk about renal reality and spread the message that we all have it within us to be a life-saver.
Speaking of saving, hope Michael McGovern is on form tomorrow night to give us a 1-0 win (my prediction) over Germany. Come on GAWA!
Even if I’ve to take my dialysis machine with me, I’ll be off to Russia to support NI