Siobhan: ‘I wouldn’t be here if it wasn’t for organ donation’

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Siobhan: ‘I wouldn’t be here if it wasn’t for organ donation’

Siobhan Brady says she would beg anyone who isn’t an organ donor to become one and carry an organ donor card

Siobhan Brady from Ballinagh, Cavan received a combined kidney pancreas transplant in 2020 and here is her story in her own words

My name is Siobhan, I am 38 years old, from Cavan, and I work as a project manager for an insurance company.

Last summer I received a simultaneous Pancreas/Kidney transplant in St Vincent’s University Hospital, and I suppose that’s the reason I am in this chair today.

I am, well I guess I was, up until the time of my transplant a diabetic.

In 2012 I got an E. Coli infection, which was during some travel to India for work. E. Coli can be a lethal infection and it had a detrimental effect on me physically and, to a somewhat lesser degree, mentally.

I spent the most of a year to 18 months in and out of hospitals, firstly in Cavan before I was transferred to the Mater Hospital.

I developed sepsis on two occasions, the second being the lowest point of the illness. I spent a week in ICU in Cavan General Hospital and at the early stage it looked like I quite likely wouldn’t make it through.

Shortly afterwards I was transferred to the Mater Hospital and to the care of Prof O’Meara and the renal team there. It was a long road, but I eventually got back on my feet thanks to my parents, and my mother who really helped nurse me back to health, and my family and friends.

It was a difficult period for everyone, and it was so hard on my mam and dad and my family to watch me waste away to nothing. I still get emotional when I think about what they went through. I really think it was easier for me to deal with as I was in it. It's hard for your family and friends to watch on and be unable to help especially in the really low points.

Thankfully, I got back on my feet and eventually returned to a more normal life. I continued to attend the renal clinic in the Mater which have dealt with the prolonged aftermath of the infection since then.

Anyone who has Diabetes knows how difficult it can be to control blood sugars with even a common cold and as such the complications from the infection began to appear with the onset of kidney failure, which was diagnosed around 2014 and many other associated problems. By 2017 I needed to start dialysis and I chose to try peritoneal which is a form home dialysis treatment.

I would say there was a certain element of relief when I was told that the day had come for me to commence dialysis treatment.

When you have organ failure and, in my case Kidney failure, your body is slowly poisoning itself on a day-to-day basis. It’s like someone giving you very small doses of arsenic, not enough to kill you outright but just enough to make you feel like you are. I was constantly sick, nausea, vomiting, bowel problems, fatigued, just unwell.

With starting dialysis, I really felt a positive impact quite quickly, while I wasn’t perfect it was a massive improvement and there were even days in the first year or so of treatment where I genuinely felt ok. Peritoneal dialysis is an amazing option as it allows me to maintain a somewhat normal life. I continued working full time, maintained a social life and managed to stay active, however it has its cons as does everything.

The treatment can become less effective with time. You are responsible for your own infection control and the dialysis machine which I lovingly named Des, can be noisy. If treatment is not going so well it can cause a lot of disruption to sleep.

After around a year and half on dialysis its effectiveness started to deteriorate, and I began to really struggle with the impact.

I can’t begin to explain the chronic fatigue, the constant sickness, so much so that I almost couldn’t eat or keep anything down, the drain of carrying a few litres of extra fluid in your body, the swollen feet and legs, the cold that permeates your bones, the loss of interest in aspects of life because you just don’t have the energy.

Coping with an illness is difficult but throw in the realities of life, work, family responsibilities, trying to maintain friendships, even everyday tasks that you don’t normally think about become a mammoth task.

The 18 months prior to transplant were particularly difficult for me and my family. My dad was diagnosed with a form of pre leukaemia and he passed away in January 2020. Caring for a sick, loved one where there is little to no hope is devastating.

The stress of this and the guilt I felt over not being able to do as much as I felt I should was heartbreaking.

Coupled with my dialysis which was not going so well, trying to maintain some sort of diabetes control, working full time and a run in with a car whilst crossing a street in the estate brought me to a point where something had to give.

Work was abandoned for a few months. Covid-19 on top and a surgery to replace the dialysis tube and a bout of hospital based hemodialysis took its toll mentally and physically.

It sounds like a tale of woe, but it isn’t.

While living with organ failure is hard, there is hope. I always felt that while one area of my life wasn’t exactly easy, that didn’t have to have an impact on every part of my life. I think there is always joy to be found in life. You just have to accept the hardships and try and make peace with them.

Maybe that was easier for me as I had already faced my own mortality and that’s finality. There was a hope of a better, no, an easier life with Kidney failure and that’s where the importance of organ donation lies.

I never would wish to go through any of my illness over again, but I wouldn’t change it. It has given me far more than it has taken away.

When I talk about my transplant journey, I tend to use two words a lot, ‘hope’ and ‘love’ and to me that’s what organ donation stands for.

Over the course of my journey, I have been blessed with my family and close friends who have been by my side all through this. The number of mass cards and well wishes and phone calls to the house has been unbelievable.

There is so much sincerity and goodness in the world and organ donation is just another manifestation of that.

When I think about my donor and my donor family, I feel an outpouring of love and gratitude from the depths of my soul, I can only hope that some of the sentiment reaches their own hearts and that maybe my Dad and my Donor have embraced in heaven as I would wish to.

People often ask me how life after transplant compares and it is so difficult to try and explain how many aspects of my life have changed for the better.

To try and capture it I think I would say I can breathe again, I can live again, and I can hope and dream again.

I’m able to do things I haven’t had the energy or interest in for many years.

My love of reading is back. I am amazed when I am out with the dog and can run and play with him. Even everyday tasks, cleaning windows, hoovering, ironing no longer feel like I’m facing Everest.

Dialysis is a thing of the past; I no longer have tubes hanging out of me from all angles. If I want to take a bath I can. I’m not hooked to a dialysis machine for 8 or 10 hours a night.

There are no fluid restrictions, no diet restrictions and amazingly no insulin. I’m no longer having to constantly worry about sugar control which was so difficult with dialysis and possibly having to face further diabetic complications or worse still a hypo I’d never wake up from.

All of this is only possible because of organ donation. The team in the Mater, Prof O’Meara and all the doctors, the renal nurses, Elaine, Millie and all the girls in the renal day unit have been my life support and continue to be.

Mr Gallagher and the teams in St Vincent’s and Beaumont Hospitals made it possible. The transplant coordinators in Vincent’s are phenomenal.

My family and friends are my rock, I will be forever grateful for all they have done. But ultimately, I wouldn’t be here if it wasn’t for organ donation and my donor and my donor’s family.

I would beg anyone who isn’t an organ donor to carry an organ donor card. Even more importantly, have the conversation with your loved ones, let them know how important it is to you and more importantly what it means to people like me.

Death is a tragic thing, we all have to face it. I have faced it and will again but if you can leave the legacy of giving a life back to someone who would otherwise lose theirs, regardless of anything else, it will have been a life well lived!

Individuals who wish to support organ donation are encouraged to keep the reminders of their decision available by carrying the organ donor card, permitting Code 115 to be included on their driver’s licence and having the ‘digital organ donor card’ APP on their smartphone.

Organ Donor Cards can be obtained by phoning the Irish Kidney Association on 01 6205306 or Free text the word DONOR to 50050.

You can also visit the website www.ika.ie/get-a-donor-card or download a free ‘digital organ donor card’ APP to your phone.