Kidney Disease & My Family

Growing up I was extremely close to my Grandparents. I spent a lot of time with them whilst my Mum and (ex) step dad worked hard for my brother and me. I remember times when we’d walk up to town with my grandparents and my Nan would have to stop and catch her breath frequently. She would also feel the cold and we’d joke at her when she was wrapped in a blanket when it was summer time. She also suffered from high blood pressure and migraines.

Then one day, when I was around ten years old, my Nan was diagnosed with Kidney Disease. She was in her late 60s and I think it came as a bit of a surprise to us all. I don’t really remember the exact dates and at the time I had no idea what it all meant for my Nan. I now know that my Nan was actually born with one very tiny kidney and one normal sized kidney, and she’d managed to live her life perfectly ok until then.

Kidney’s are responsible for removing waste products from the body, remove drugs from the body, balance the body’s fluids, release hormones that regulate blood pressure, produce an active form of vitamin D that promotes strong, healthy bones and control the production of red blood cells. When one or more of your kidneys stop working properly this is obviously a concern.

My Nan’s Chronic Kidney Disease (CKD) was diagnosed quite late and things progressed quite quickly in terms of how they treated her. In 2003 (ish) my Nan had an operation to give her a fistula in her arm so that she could begin haemodialysis. A fistula is made by connecting an artery to a vein under the skin. When the artery and vein are connected the pressure inside the vein increases which makes the vein stronger and bigger. Once the vein has become strong two needles can be put into it. One needle is used to take blood out to the machine whilst the other needle returns blood back to the body.

My Nan had struggles getting used to this. It formed a big lump on her wrist which vibrated and “buzzed” as she described it. It was freaky and I honestly have no idea how she coped with it but I suppose you just get used to these things. At the end of the day, that lump was going to save her life. On the 18th April 2005 my brave Nan started dialysis which is basically a machine that filters your blood and does exactly what your kidneys should do. 

Over the next five years my Nan went into hospital three times a week each for four hours. She’d have to wake up super early in the morning to wait for hospital transport which never arrived on time. She hated the early mornings and waiting around. Then the hospital trained my Grandad so that he would be able to do the dialysis at home making it more convenient and comfortable for her.

In 2010 their spare room was turned into a medical environment with special drawers containing medical apparatus, needles and of course the huge dialysis machine which was nicknamed “the robot” by P1 who was just two years old. It became normal to her as my Nan had to have dialysis five to six days a week for two to three hours at home. My Grandparents were my childcare provider for three days a week whilst I worked so P1 would sit quite contently doing Lego or colouring whilst my Nan was on dailysis.

Over the ten years that she knew she had Chronic Kidney Disease my Nan suffered a few heart attacks and a stroke. These are the huge risks when you have CKD. And one of the main causes of death within people with CKD is cardiovascular disease. My strong fighting Nan suffered her last heart attack on the 3rd September 2013 and passed away whilst on dialysis in her own home. We all expected it but that didn’t really make things easier. 

My Mum was diagnosed with CKD in 2012, just a year before my Nan’s death. She too suffered from feeling the cold, high blood pressure and migraines, swollen feet and hands. The difference and most terrifying thing is that she is much younger than my Nan. Her diagnosis and symptoms seemed to have gone from relatively manageable to pretty much at the point of complete failure so quickly. 

My Nan had refused to be put on the transplant list as she felt that she’d lived her life and somebody else would be more deserving. I decided to offer to be a donor for my Mum but she quite rightly refused. CKD is running in my family which means I am at high risk of getting it too and may need my kidneys more than ever as I grow older. It honestly left me feeling quite useless. She’s my Mum and all I want is for her to live. Healthily. I watched my Nan deteriorate and I didn’t want that for my Mum too. But it was inevitable really.

Thankfully my Mum has managed to find a living donor. The donor is her husband, my stepdad. I laugh every time I tell people this, “match made in heaven” is the saying isn’t it!? I think it’s remarkable that they are both a match to each other and that my stepdad is willing to give up one of his kidneys to save my Mum.

The hospital thought she’d be able to make it until the transplant without needing to go on dialysis but whilst going through all the testing procedures that a living donor transplant requires, my Mums health got worse. She ended up having her fistula operation and starting dailysis in the hospital two times a week. It’s been a few months now and she says that it’s made her feel less tired but I can imagine it’s been quite a tiresome and scary experience.

But this Valentine’s Day my Mum and my Stepdad are due to head for London for a major operation. This whole transplant thing has been playing so much on my mind the past few weeks and months. There is so much uncertainty surrounding this transplant and that is petrifying. P1 and P2 understand that Nanny is getting her tummy cut and a new kidney to make her feel better, they are scared too and questioning things a lot lately. If the worst happens I just don’t know how I’ll tell them.

Then there’s my own future. Will I definitely get CKD too? Will I need a fistula and dialysis? Is this whole thing going to control my life just like it controlled and took my Nan and has hooked itself into my Mum too? I hate this uncertainty. I’ve had my own kidneys scanned in the past year and blood tests to check my kidney function. All is fine for now although there’s been a few little warning factors that we’ve noticed, like being low on Vitamin D and the fact my blood pressure rocketed from its usually very low to extremely high straight after giving birth. That is an indicator apparently.

I’ve just realised how flipping long this post is, but it’s something that’s been niggling at me for a good few months now and the topic is obviously quite close to my heart. I needed to write this and now we have a transplant date everything feels more real than ever. All I know is that my life, my girls lives, my Mums and stepdad’s lives are going to change forever and all I can do is hope and pray that it changes in a positive way.

Do you have experiences of transplants? I’d really love to hear your stories. I urge you all to donate if you can to Kidney Research UK. If we can do a little something to help then it’s worth it.

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  1. Bless you and your family lovey. What a hard thing to go through but how amazing that you are raising awareness. Sending all the best wishes in the world to your mum for her op. She’ll do great I’m sure!xx

  2. Hope everything goes well. My cousin had a kidney transplant about 10 years ago and he as a new lease of life now!

  3. I have no advice at all but wishing your mum and stepdad all the luck in the world x

  4. I hope it goes well for your mum and her husband. I also hope that your future is a healthy one, I can’t imagine the uncertainty and worry you face not knowing whether you will be effected in the future.

  5. Hope her operation runs smoothly and all is well for the both if them.

  6. Handing out some hugs to you all, I hope the operation goes smoothly.

  7. Lynne Sandison (was Gardener)

    I was at school with your Mum Jodie a long time ago lol! Will be thinking of her and hoping all goes well next month for you all. Love Lynne xxx

  8. I have no advice /experience to give. Sorry to hear it’s something that become a hard time for your family. I guess all you can do is keep an eye on everything with yourself. Hope your mums operation goes well xx

  9. Hope it all goes well for both your mum and her husband, what a wonderful gift to give.

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