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The Strength of Two Sisters

Jude Skilton didn’t hesitate to step up as a donor when her sister, Jo, required a lifesaving kidney transplant. After running into several obstacles along the way, Jude was able to give the ultimate gift to her little sister: one of her kidneys and a second chance at life.

When I was 2 and ½, my little sister was born.

She was like a little doll with big blue eyes and blonde hair. And she laughed constantly.

However, as soon as she was born, it was clear that she was to face some huge challenges in her life.

During her first week of life, while she was going through all sorts of medical testing for her condition, doctors discovered that she also had something called a ‘Wilms tumor’ on her kidney, a rare form of kidney cancer. Both the tumor and the kidney were removed when Jo was just 8 days old. She kept the remaining kidney, but complications from reflux in the kidney resulted in chronic kidney disease and a lifetime of painful kidney infections.

Jo came home from hospital and continued to develop normally as a baby, hitting all her early childhood milestones, despite lots of outpatient appointments and extra special care. She attended mainstream school and was bright, popular and clever. To look at her then and now, you’d never know she has pretty much suffered pain and discomfort for every day of her life.

She was a hilarious child and could make anyone laugh. As a teenager, she did all of the usual sisterly things like stealing my clothes, my makeup and anything else of mine that she could lay her hands on.

She now has 2 sons, Bailey and Harrison. At the time of her transplant, they were 10 and 8 years old. They are the most wonderful little boys. I adore them as Jo does.

Overall, everything had been pretty normal in Jo’s life…until it wasn’t.

After feeling particularly grotty (more than usual), Jo ended up in hospital where they discovered her kidney was failing and functioning at less than 8%. She started on dialysis and went through dialysis for four hours every other day. It was so much to handle and go through, but Jo coped with it all so well, as she does with everything else in her life.

The worst part about it for Jo was the sheer exhaustion which, along with the hours spent in dialysis, robbed her boys of time with their mother. It was heartbreaking to witness—they were so scared and worried for their mum throughout the whole ordeal.

Soon after, we learned that Jo would need a kidney transplant and she needed one as soon as possible.

We met with Kay Hamilton, the transplant coordinator at Southmead Hospital, on 24 July 2012. She was lovely, honest and very kind. We quickly decided that a living donor would be the best option for Jo’s new kidney. I immediately volunteered.

I’ve always been strong, fit and healthy. In 2005, I was diagnosed with fibromyalgia after taking longer than usual to bounce back from being sick. To be honest, I just accepted it and went on with my life.

Things remained as they were for me until 2008 when I developed additional symptoms that put me on my backside. These new symptoms were not consistent with fibromyalgia and left the doctors scratching their heads. I ended up seeing specialists in three different areas of medicine and was tested for a range of extremely scary illnesses. It was at this point that I was diagnosed with undifferentiated connective tissue disease.

When I asked to be considered as Jo’s donor, this diagnosis was of great concern to Jo’s transplant team and, ultimately, was the reason they wouldn’t allow me to donate. The day before the transplant team came to this decision, my bloods had been taken and we found out that I am an absolutely perfect match. Imagine that, if you can.

Jo and I were both devastated. However, we knew it wasn’t something we could fight. It doesn’t matter how sick the recipient is or how urgent the situation: if there is even the smallest question that the donor’s health could pose a risk to the recipient, that’s it. As we tried to accept this decision, I began writing a blog to document the experience and get the word out about my sister’s need for a living donor: ‘Big Boss Trousers and the Quest for a Kidney’. I just felt like I needed to do something—anything—I could to get my baby sister better.

Even though I was denied to be her donor, I was determined. My weird ‘extra’ symptoms had been quiet for some time and my most recent blood work results (that detailed my connective tissue condition) were about two years old, so I went back to my rheumatologist and had all the usual bloods and examinations carried out. The test results confirmed that everything was normal. What’s more, they couldn’t find any evidence of the connective tissue disease I’d previously been diagnosed with. This meant that I could be reconsidered as a donor for Jo.

After several more weeks of testing, I was approved to be Jo’s donor. In my heart, I think I always knew I’d be a match for Jo. In my mind, I always saw myself as just carrying her spare. I had never wanted anything more in my life. My heart broke for her every day. But, here I was: carrying the answer to my sister’s problems inside of me all along.

Mine and Jo’s transplant surgery took place on 17 April 2013. We were admitted to hospital one day before the surgery and we both couldn’t really believe that everything we had been fighting for was actually about to happen. Jo kept getting butterflies in her stomach, but I was surprisingly calm. I focused on staying as levelheaded as possible since I knew that Jo was so nervous. After all, she was desperately ill and, despite the huge impact dialysis had on her life, it was keeping her alive. She knew where she stood: this was a risk and a very frightening one at that.

One thing that really stands out in both our memories is constantly being asked if we had any questions. I can honestly say that I have never felt so reassured, prepared and safe for any medical procedure in my life: we didn’t have any questions because everything about the donation-transplant process had been explained to us in such great detail. Knowing exactly what was going to happen was very comforting for us both.

Jo and I spent some time together the morning of our surgery. She was crying and telling me how much she loved me. I made daft jokes and did my best to reassure her that we were going to be okay. I’m not sure if she believed me, but deep down, I knew it was true.

When it was time for me to head to the operating theatre for surgery prep, Jo was almost hysterical. We had a lovely hug and I told her I loved her and that I’d see her later and not to worry. My heart had started pounding now and it took every ounce of my strength not to burst into tears.

As the anaesthetist began to administer the medication to put me to sleep, I can remember asking the transplant coordinator to tell Jo I loved her and would see her later on. I was crying and she stroked my arm as I drifted off to sleep.

Jo after surgery

I woke up from surgery before Jo had finished with her operation. The wait for her seemed to take forever and when she finally appeared, I let out a cheer. I was desperate to know how she was and whether my kidney had been successfully transplanted. We were told that, within two minutes of being ‘plumbed in,’ the kidney successfully began to produce urine. We were delighted! We were also both in awe of our huge tummies which were bloated from the surgery. It took us a while to get our heads around the fact that we had actually done it.

Recovering together was an experience we will both treasure forever: we laughed, we cried, and we talked nonstop.

Each day in hospital got easier and easier. I was discharged just four days after surgery. I was sad to leave Jo, but I knew she wouldn’t be too far behind me. Sure enough, she was discharged the next day because her results were so outstanding.

The other amazing part of this experience was learning of Jo’s kidney function after transplant. On the morning of the surgery, her failed kidney was working at 7%. Just two weeks post-transplant, her new kidney was at 84%. That’s as good as my kidney function before surgery (with two perfect kidneys!) and it’s better than we ever imagined it would be. This has since dropped and, although the numbers fluctuate all the time, the kidney is still working and doing its job beautifully.

Seven years on and Jo is more healthy, vibrant and glowing than she’s ever been. We both continue to share our story in the hopes of raising awareness for living donation and organ donation in general.

Jo is free from dialysis and the fear that she may not survive. She has been able to watch her sons grow into young men. She can eat what she wants, which is something she is incredibly happy about! Before the transplant, Jo’s appetite was small and her taste was quite bland by her own admission. I, on the other hand, have always had a huge appetite and a love of flavor and texture—and in huge quantities! One interesting thing that happened after my kidney was transplanted was Jo’s appetite changed dramatically. Almost immediately, she had cravings for food that was usually to my taste and not to hers—and she became as ravenous as me! This has stayed the same since the transplant.

Although Jo continues to deal with various health problems that come her way, which she handles bravely and without complaint, her life has now become all her own.

Check out the Facebook page that Jude created for hers and Jo’s journey and awareness efforts (@JosKidneyQuest). You can read Jude’s blog here: www.joskidneyquest.blogspot.com.

Blog posts compiled, edited, and rewritten by CC Cunningham, CKF Program Manager.

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