How one Kildare teenager waiting for a transplant has dealt with his own 'lockdown' over the past year

William O'Sullivan (18) is waiting for a kidney transplant

Rose B O'Donoghue

Reporter:

Rose B O'Donoghue

Email:

editor@kildarepost.com

How one Kildare teenager has dealt with 'real' lockdown over the past year

William O'Sullivan and his mum Kerrieanne, dad, Ben, and sister Matilda

As the Covid-19 'social distancing' becomes the norm for families now, there is one household in Co Kildare who've been on full lockdown for months now. The O'Sullivan-Goldsmith family from Ballymore Eustace comprises mum Kerrieanne and dad, Ben, 18-year-old William and 13-year-old Matilda. 

Lockdown and self-isolation have been necessary measures for teenager William who is awaiting a transplant surgery, the gift of a kidney from his mum Kerrieanne. 

With a practicality way above his years, William sees isolation as simply another step to his surgery and a return to a full and engaging life. Anyone who knows the family will know they don't do things by half and have a wicked sense of fun and community commitment. They moved from near Johnstown to Ballymore Eustace nine years ago, with Grandad Joe and Nana Vera following soon after.

Mum Kerrieanne opened a local fashion and gift shop, Tilly's, joined the local Community Development Association and is now the sitting chair. Husband Ben joined the Tidy Towns and took on PR duties for a time, with Grandad Joe joining the Tidy Towns team and Nana Vera supporting every project or fundraiser in the village.

William, a student of St Kevin's Community College, Dunlavin has transferred a year back to fifth year to facilitate transplant acitivity. Eighteen months ago, the outgoing youngster who enjoys music, soccer, basketball and life in general, began to experience kidney problems.

In 2010, when William was almost nine years old, he was the recipient of a successful kidney transplant from his aunt. At that young age, he endured extensive transplant work-up-process, including multiple blood and tissue matching, vaccinationboosters, ultrasounds, xrays and scans. 

“It's a full-on journey just to get on the transplant list, never mind get a kidney,”, he said. “Unfortunately kidney transplants don’t last forever”. So now he and mum Kerrieanne are going through all the rigid testing again. He is not one to complain. 

The last ten years were good years, he says and he developed a love of music, learnt to play the guitar, and despite not being tall, he became a good basketball player. The O'Sullivan-Goldsmith family are also noted for their sense of devilment so there is no shortage of laughter in that family, along with being avid pet lovers and community volunteers.  

“I developed a love of music and was very lucky with my primary school, Blessington No 1 school. Our principal Lilian Murphy is big on developing the all-rounder, which I can relate to now. I’m not the tallest but that didn't stop me playing basketball with coach Lenny MacMillan after school  and in summer camp.

“I played classical guitar when I was only four years old; my mum found me a great guy in the Dublin School of Guitar called Pat Fagan, I was reading sheet music from a young age.This has developed into a keen interest in music.

"I take classes with Colm O’Hara in the Millenium School of Music, Manor Kilbride, and also started playing with the Kilbride & Lakeside Senior ensemble. My bedroom is like a mini recording studio. I got a Roland synthasiser for Christmas and it's just brill!” 

From an early age, William presented with some kidney issues and was used to dealing with medical issues as a a toddler.  “I am very laid back, I've been used to dealing with the medical stuff since I was born, I am fully 'in the know' of my care both good and bad, Mum always insisted that I understood every treatment, every surgery, every med, every process.

“She’s not big on surprises and she would never tell me stories; we keep it real. There's a story of when I was five years old and in intensive care post-surgery.

“Mr Quinn, the surgeon, had reconstructed my bladder using the urethra of a defunct kidney I was born with; he also created a Mitrofanoff valve using my appendix. Needless to say, it was a big day in my surgical life and indeed, a major surgery in itself. Anyway my mother was up the walls, I normally took a certain med to prevent bladder spasms especially as a spasm would occur when there was a tube or drain present.  She asked the nurse on numerous occasions about it but the nurse said no, because I had a epidural in for pain relief, that the spasm med wasn’t necessary.

“Along came Mr Quinn doing his rounds, poor me lifted off the bed in spasm and Mr Quinn asked me if I was ok. Five-year-old me responded: “No, I'm not ok! I need oxybutynin now!” 

“It gave him a great laugh that a five year old knew exactly what meds he needed for what! It's good though, full autonomy. There is plenty I can’t do but I focus on what I can do and what I like doing. 

“Thankfully social media is great for all the lads to stay in touch. I have a great bunch around me they know who they are -  my 'Booners'. Nana and Granda can't come up to visit now during social shutdown but their social media skills have improved no end. 

“I do a lot of soccer stats on social media  which keeps me sane and sure it's never too quiet with Mammy K around. She decided that if felt like Christmas so she had us celebrating Springmas – in Christmas jammies and jumpers on, eating rings around myself -  she has us eating dessert after breakfast!”

How are they coping now having been in in extended lockdown? 

“Mam really is the craic, my mad mother. She calls breakfast dessert elevenses and dessert after lunch she calls afternoon tea, and dessert after dinner is just dessert. Ben drives her bananas but she hasn't killed him yet; I heard her saying what a great job he did on gutters and painting the gate sooo today he’s in the good books I reckon, Rolling Stones gather no moss!”

Going back to his current health situation, a stay at Temple Street in 2017 revealed issues, William's bloods were crazy and his 'new' kidney wasn't happy. 

“Head of Infectious Disease Professor Gavan was on the case,” said William. “Mum kept pointing to a small coldsore up my nose, and of course, it was eventually discovered the cold sore virus was the cause of the issue. I had IVIG which is intravenous imuno globulin treatment. I tolerated it well and it gave me another window but I got very sick again around Christmas 2018.”

William was later transferred to the adult services at Tallaght University Hospital last year. “I had to start dialysis and had surgery to insert a PD catheter”.  The transition he found emotionally draining. 

“However, on landing myself a new team in TUI, my confidence is back, they are really fantastic. It's been a rollercoaster but I feel I'm really in safe hands. 

“Dr Peter Lavin is my lead consultant who was appointed Director of Medicine just a few visits in, it hasn't impacted on my care, Maura Looney was my first point of contact; she's a Kerry woman and a great human being. I had to start dialysis and had surgery to insert a PD catheter. Professor Flynn did the surgery and it was a success.

William and his sister Tilly pictured skiing


Bualadh bos to St Kevin's Community College

“I started on manual which means I had to do exchanges throughout the day,  and my school was so helpful.  Mr Cleere, my year head, literally gave me his office and the school caretaker Billy hung the hooks exactly where I needed them. Thanks to them I got to keep a lot of normal going, which is not to be taken for granted.

“With the help of the home dialysis team in Tallaght Helen, Donna ,John, Annama and Aishling, I progressed onto Peritoneal Dialysis overnight machine which we take delivery of two palates of dialysis equipment every month, We have a designated dialysis room that I go in and hook up to machine and sleep, it's good to keep it out of the craic and banter space of my bedroom and my parents can keep the dialysis room as clean as they like, as I am a normal messy teen.

“With dialysis all sorted and working well, I felt so much better - in fact I didn’t realise how sick I was feeling till I'd reached the point of feeling better!”

Now all the tests and work leading to getting onto the kidney transplant list have been completed, along with psych evaluation but of course, with the positivity and upbeat mentality of the family, young William passed with flying colours!

Last month, they got the call from the Transplant Unit in Beaumont to say William has been activated to the list, and further checks were carried out recently at Tallaght Hospital.

“This means I must stay well as a cadaver kidney can come anytime. Our phones are ready. Mum has started live related donor work up in order to give me a kidney, albeit during the Covid-19 restrictions we learnt the live related donor programme has been suspended. 

“The whole Covid-19 is a giant spanner in the process – but Nana Vera is great for the saints and candles, so I will take all the good will going.”

As soon as the coronavirus crisis loomed, Kerrieanne and Ben jumped into red alert.

“There was no supermarket madness, Mum had it all done before it dawned on anyone! We went on full lockdown early. People don’t understand the risk we are under with normal flu - never mind something as serious as this,” said William

“I am immune suppressed, I take suppressant medication to stop my body creating antibodies needed to fight everything. I am also asthmatic, albeit it is under control. A sneeze is cause of concern for me!”

There is no negativity or resentment in William's tone. So for those of you who resent the Covid-19 restrictions - take a leaf out of this young man's book – it's lockdown he needs while awaiting a second kidney transplant.

“It's ok for now being so isolated but I’ll struggle if the gobs***** cause this to go on longer than necessary…. Cop on, stay home and wash your hands, folks," he concluded.

William O'Sullivan