Helen

Receiving a new kidney is the dream of anyone living with kidney failure, yet for some, the dream can become a nightmare. Here, 55 year old mum of two, Helen, bravely tells the story of her painful journey with polycystic kidney disease that has left her battle scarred, but not without fight. 

"Coming from a long line of PKD sufferers on my father’s side, I grew up with the fear of the disease all around me.  I never met my paternal grandma, who passed away in the 1960s aged 55. She had been ill for a while and was being treated for heart problems - No one realised that she did in fact have PKD. My father was one of 4 siblings - 2 of them, my dad and my uncle Brian both inherited the disease, the others escaped.

Uncle Brian was a wealthy man and in the 1970s he had a dialysis machine at home. It was huge. A cold, metal foreboding contraption and the sight of his blood pumping round used to make me feel faint. As a 10-year-old in 1976, I swore that I would never ever be a dialysis patient. He had a transplant in 1976 but passed away during surgery, aged only 46. My father was 51 when the disease took him.

Helen as a child

I was diagnosed in 1982, aged 17, following a scan requested by my doctor, who was concerned by my high blood pressure; often one of the first signs of PKD. 

But it wasn't until my kidney function started a rapid decline in my 40s that I became acutely aware of my own mortality.

By 2014, I was struggling with work. I had always been a hard-working independent woman, operating in a man’s world. I managed property; mainly office buildings and health centres and have worked in some iconic buildings. I never told any of my employers about my kidney disease, because management roles and promotion were far more important to me than care, pity, aids and allowances.

I literally ran myself into the ground. So when my husband’s job took us from Lancashire to Devon, I grabbed the opportunity to change pace, and gave up full time work. However, this did nothing to slow the decline of my kidneys. By the start of 2017, with an eGFR of 10, I was signed up for my first hemodialysis session. I was not offered peritoneal dialysis as my poor body was already heavily scarred from two caesarean sections, a full hysterectomy and an incisional hernia repair. 

Dialysis is no picnic, but the team at the Royal Devon and Exeter Hospital made the process as smooth as possible. Yet with around 15 hours a week taken up by dialysis, excluding travel, I had no real life. Neither did my husband, David - a keen mountaineer - who had to make big changes too. And although he was screened as a donor, sadly he wasn't a match.

Then one evening I received a text message from a work colleague, Stella, that left me shell-shocked. She offerred to donate a kidney! We'd only worked together for a short time, and were not especially close. But Stella was determined - not only did she want to give me a second chance, she wanted to donate in memory of her brother, a former soldier who served in the Falklands and Iraq but who had tragically died in a freak accident 2 years earlier.   

After months of screening, doctors gave us the green light. Incredible! I was so grateful to Stella. Her gift would not only save me it would give my sons their mum back and my husband his wife back. And so, feeling both excited and nervous, our operations went ahead at Plymouth hospital, 31 August 2017.

Stella after her kidney was removed

Helen, recovering from the transplant

Thankfully Stella made a quick recovery, and was back at home within a few days. For me, however, it was a very different story. 

Although live donations are usually very successful (with 96% of donated kidneys working well a year after the operation) within 6 days of the surgery my body began to reject the kidney. It was a terrible time that I would not wish on anyone. Not only are all your hopes for a better life dashed in an instant, but the pain was excruciating. My antibodies were literally killing the kidney second by second. Sadly after 2 plasma exchanges, 2 kidney biopsies and enough steroids to make me blow up so much they needed to cut my shorts off, surgery to remove the now dead new kidney went ahead. 

Stella was understandably heartbroken. I felt cheated, sad, and helpless as I recovered in hospital for a month and a further 6 months getting my fitness back. I was suspended from the transplant list while my body healed and had to fight tooth and nail to get back on.

I now have 95% antibodies, so the next kidney must be a perfect match. It's likely I have a long wait ahead of me. Witnessing my father die whilst waiting a long time for a kidney, haunts me and some days trying to stay positive is the biggest challenge I face. Renal psychology services have been drastically cut in Devon and there is no support for the darker days.

Helen, a true Kidney Warrior 

After this, life at the dialysis unit was unbearable. So, I got my head into gear and trained for home haemodialysis. Needling myself was a revelation and a skill not to be sniffed at, but home dialysis is so much more relaxed and its flexibility really suits my needs. I am under Bristol Southmead Transplant Centre and carry my phone with me everywhere. My suitcase is packed and in the boot of my car and every minute of every day I hope for that call.

I have dealt with all that PKD has thrown at me along the way. High blood pressure, difficult pregnancies, gout, bone pain, itchy skin, shivers, chills, a failed transplant, and a brain haemorrhage due to a ruptured aneurysm, which was coiled.

I regularly inject myself with EPO (Many people with kidney failure are unable to produce an important hormone called erythropoietin or EPO, which can cause your red blood cell count to drop and anemia to develop), plus I have monthly iron infusions. I eat a good, wholesome diet, keep myself fit and try to live a full a life as possible.

My son has PKD and I want to be a good role model for him. And although PKD treatments haven’t progressed that much since my Father’s day, I am confident that for our children it will be different and a more positive experience and outcome all round."

Helen with husband David, her parents James and Gerlinde, plus one of her favourite mantras

Despite the outcome of Helen's transplant in 2017, her donor Stella says "I'd do anything that raises awareness of this awful disease and the fact that you can be a living donor is so important. I just wish I had more kidneys as I would do it all again tomorrow!". To learn more about living organ donation head here. 

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