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Lindsey and Richard

Lindsey, a 30 year-old wife and mum shares her heartbreak and fears for the future after her husband - who she met when she was only 15 - was suddenly diagnosed with polycystic kidney disease.

This World Kidney Day, the mum of 6-year old and 21-month old boys, tells their story in her own words:

"Our journey with PKD began the day Richard came home feeling quite dejected after trying to join a local gym. “I must be more out of shape than I thought!" he announced "They wouldn’t let me join because my blood pressure is really really high. I’ve got to get a doctors note!”. The gym had been quite surprised, given that he was only 26 at the time and not overweight.

Whilst Richard wasn’t too worried, in the back of my head alarm bells were ringing. 

I was aware that Richard’s Mum had a condition called PKD and she was on the transplant waiting list, but as his parents weren’t comfortable discussing it, we didn't know about the wider implications, least of all that it was genetic and Richard might have inherited it. 

I quickly googled “reasons for high blood pressure” and kidney issues came up on the list. “I’m sure it’s nothing,” I told him “but please mention to the doctor that your Mum has PKD.”

He did tell the doctor, and as a result was referred for more thorough tests. 

Newly weds, Richard and Lindsey aged 23 and 22

At this point, he was still not particularly worried - Going to the hospital just felt like a bit of a hassle. 

However that was short-lived. When he came home from the hospital white as a sheet and I asked him if he was OK, he just replied “No.”

Almost as soon at the ultrasound probe touched him they were able to tell him that his kidneys were absolutely covered in cysts and he definitely had PKD, which he had inherited from his Mum.

The news was a double-edged sword, not only had he been diagnosed with a very serious disease, he was also hurt and confused that he hadn’t been warned of the dangers earlier. 

As fate would have it, within days of Richard’s diagnosis his Mum was called in for her transplant. So he was torn; desperate for answers but he also wanted to be there for his Mum and knew there were some conversations that just shouldn’t be held around a hospital bed. 

Reality really set in when we found ourselves sitting in a kidney consultant’s office. He explained to us exactly what PKD is, that there is no cure and Richard would need a kidney transplant at some point in his life. He confirmed there had been a 50% chance that Richard would inherit the condition from his Mum, and that there was a 50% chance that our son - aged 3 at the time - has inherited it too. We are unlikely to know this for sure, however, until he reaches adulthood.

The ironic inscription on their wedding cake

I remember we went and sat in the hospital cafe afterwards, and just sat in stunned silence for such a long time. I felt like our whole perfect future had been ripped away from us, leaving a big dark cloud full of operations and medications and dialysis hanging over us. 

By this stage Richard had lost over 50% of his kidney function. 

We had been planning baby number 2 but this was now in question as we battled conflicting emotions. I felt just so uncontrollably angry that this bomb had been dropped on us - I kept thinking, what if Richard had never tried to join the gym? What would have happened to him?

If he had known he had PKD so much earlier he could have started medication and perhaps slowed the rate of progression. We’d had our whole future mapped out and it felt like that had all been shattered. 

I thought about my little boy and how we unknowingly brought him into the world with this risk of illness in his future. I wouldn’t change him for the whole world but I was so angry that we were denied the information that would have helped us make an informed decision about starting a family.

We could never be angry that Richard inherited the disease, that wasn’t anyone’s fault, but the fact the information was not provided was hard to cope with.

Unfortunately, the relationship between Richard and his parents never recovered and eventually broke down completely. They weren’t able to understand why we were so upset that they were not more open with Richard about his Mum’s illness earlier on. Perhaps a large part of it is that there is still such a stigma around illness and some people are just so uncomfortable talking about it. Either way, I don’t think we will ever truly get to the bottom of it.

Sadly, Richard’s Father passed away two years ago, and although he was able to spend some time with him at the end, so much was left unresolved. 

Richard, Lindsey and their boys 

Since being diagnosed, Richard’s condition has been monitored. He started medication to manage his blood pressure and underwent genetic testing. After much soul searching and research, we decided to have another baby and we welcomed our second son in 2020.

However, this time we had all the information at our disposal to make our decision. Thankfully, Richard has been lucky not to experience too many symptoms of PKD and was able to live a normal life. 

In 2021, our vision of the future was shattered once again. Richard’s consultant broke the news that his kidney function had declined rapidly, and with an eGFR of just 24 will need a transplant in approximately 2 years, when he will only be 32. 

We had assumed that Richard, like his Mum and many other PKD patients, would be looking at transplant later in life. We thought we'd have time to raise our young family before things got that serious, and I would be able to donate my kidney to him. 

The couple in less stressful days

I’ve started the tests required as a potential donor, just so we know if that would be an option or not. But this brings added pressure, such as caring for the children throughout the process.

Luckily we have great support from my family but the amount of help that we would need is a lot to ask of anyone. The pandemic also brings in an extra worry with all the shielding requirements and we have to balance keeping Richard safe and the emotional impact on our boys as well.

At the moment, we just don’t know what the future will bring. We don’t know if our boys have inherited the disease, and are still weighing the pros and cons of genetic testing.

What we do know is that we won’t repeat the mistakes of the past; we will keep the children informed in an age appropriate manner. Our eldest knows that Daddy has poorly kidneys, and when he is old enough to understand we will give him the option of getting his own kidneys scanned. 

Richard running for PKD Charity

There are still many days where I feel so angry at the world and the hand we have been dealt, but for the most part we are trying to live our lives to the fullest while Richard still feels well. He has recently completed a half marathon to raise money for the PKD charity and plans to do a full marathon in April! 

We are also trying to raise more awareness of PKD, if our story can prompt just one person into getting their blood pressure checked, I will be happy!"

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