There’s very little written for those that have a loved one suffering from Kidney Disease. The partners. Parents. Children. Which prompted my fiance (oh yes!) to write something unbelievably honest. Something I think other people watching their nearest and dearest almost dying will love to read. And something that gives insight from a side of things that is rarely given the air time.
Words by Kate Smith
Ryan was 29 when he was diagnosed with IGA nephropathy, it was in a tiny little room without windows in Southmead hospital. I remember it well because it was the only appointment I’ve ever been able to attend. The consultant told us that Ryan would have a 70 per cent chance of never really noticing this disease. The other 30 per cent would most likely lead to kidney failure and transplant. This was pretty scary but the odds were in our favour and if it did happen, we were told, damage like that would usually take about 20 years.
By September 2020 Ryan’s bloods had fallen from 70 per cent to 30. Ryan found out by phone call. As a secondary person in the situation it’s so difficult to navigate the conversations post phone call. ‘How bad is it?’ ‘Are they worried?’ ‘What does that mean?’ ‘Are you going to die???”… are not things that you can really ask your partner – A partner that’s still trying to make sense of the medical jargon and the wild information they’ve just been told. The lack of first hand information used to drive me insane. I’m not saying that Ryan didn’t tell me everything, he did, but he was getting told things that were incredibly hard to process so reiterating them to me in the detail that I needed was basically impossible. (Later on we worked out that putting the doctor on speaker phone for those important phone calls would be a game changer. Being part of those conversations with the medical team was so important for me. I needed to feel part of it to be able to understand what was happening in Ryan’s life and mine too.)
“our daughter was born in March, it was tough”
IGA is tricky, it’s not something people have heard of. I would chat to my friends and family, trying to process the situation and work out my own feelings but because of the rarity of the disease it somehow became more of a biology lesson than the bleugh of emotions that it really needed to be. Finding facebook groups helped, I liked to read other people’s experiences and try to understand how IGA might affect us.
When Ryan’s bloods dropped to 30 per cent kidney function they started to talk about options. At some point he would likely need a kidney transplant to stay alive. At this point I was 4 months pregnant. It’s a bizarre experience to be so excited and so fearful at the same time, but this was a feeling that I got used to over the next year and a half.
Our daughter was born in March, it was tough. Ryan was pretty much just functioning at this point, with his kidneys teetering between 9-7 per cent. Like any new parents the lack of sleep did us both in but she was such a little wonder and the most beautiful distraction.
At 3 months old, after battling some intense breastfeeding hurdles, cows milk allergies and a tongue tie, our little girl was settling into life perfectly, meanwhile Ryan had his Peritoneal Dialysis tube fitted. (a catheter that goes into the abdomen to allow dialysis exchanges through the peritoneum.) This meant that he couldn’t lift our baby for almost 4 weeks. (I’m pretty sure Ryan had a tough experience with his tube and it’s certainly not like that for everybody) but I remember a number of times finding him unable to get up from the kitchen floor in agony. As a partner that is really hard to see and something I hadn’t prepared for at all. I did what I could to help Ryan through those first few weeks of PD exchanges, we sat with him and tried to distract him from the drain pain and we all spent a fair bit of time travelling to and from Southmead to make sure everything was ok. This was just as our daughter hit her 4 month sleep regression- and regress she did. I was up every 45 minutes with her at night- we had to move her into her own room so that Ryan could do dialysis in our bedroom…the sleep regression was tricky. This was the most exhausted I have ever been.
“being a ‘secondary person“
Being the ‘secondary person’ to experience this disease can be difficult. It is actually really difficult. It’s a delicate balancing act of supporting your loved one and keeping yourself/family/house going. In my case I could only do this with help. BUT, there had to be respect for Ryan. He is a proud and strong man and so so capable. The illness, at times had stripped him of his independence and freedom, seeing him feel so depleted and frustrated was unbearable. It wasn’t an option to have people in and out of our house to help all of the time, as much as I would have liked or needed. That is where the balance became really hard. Some days we would see friends and they would ask ‘How are you guys? How’s everything going? Can we help at all?’ Ryan would say ‘Yeah not too bad thanks, we’re all good.’ It used to make scream inside. I just wanted to burst into tears and wail ‘it’s not okay, nothing is okay. I can’t cope!’ – I didn’t do this. (Unless it was in private to my very bestest friend.) The privacy that he wanted and needed to keep him feeling strong enough to manage was the opposite of what I needed. I felt like I needed everyone to know. This is hard. Help me. Please cook me a dinner or take my dog for a walk. Just anything to cross a job off my list of things to do.
We did actually talk about this a few months later and as usual, communication made everything a million times easier. I had lost sight of how important it was for him to have his privacy – keeping that ‘I’m fine’ attitude allowed Ryan to remain strong and helped him to not just fall apart and give up at such a vulnerable time. And Ryan had seen me managing the never ending jobs without too much of a moan so had no idea how much it was effecting me. Eventually we figured out which jobs could be done without too much invasion into our lives; clothes washing, getting a freezer full of food every now and then. Food shops and a dog walk once a week to give me a day off made a huge difference! Family and friends really did keep us afloat at times, and I am forever grateful to them, the effort they made gave me just enough of a boost to keep life going in our home.
“keeping things like this going kept Ryan going“
Sport has always been a massive part of Ryan’s life. When Ryan became ill, he couldn’t play football anymore, luckily the manager happened to leave at this point and Ryan moved nicely into the role. I was really really relieved. Yes, it was a big physical push on his body, at times when he didn’t have much left in his tank. But it was so worth it. I’ve watched Ryan stop sport before and it’s not pretty. He needs the drive, focus and motivation and at this point in his life, it was more important than ever. A chance to feel a bit normal and not just some ‘sick person’. I think it can be easy to think that it’s better to stay at home and keep yourself ‘well’ but keeping things like this going kept Ryan going. (If I had the choice, he would have dropped a day at work to help him conserve some energy for football) Obviously Ryan just carried on with it all.
“an empty room to fill with all of those fears and emotions“
Dialysis was pretty hard to navigate, normalising that this process is keeping your loved one alive is a pretty hardcore thing to do. Now we are out of the dark, I tell Ryan that I had planned his funeral. That is dark. But it’s where my head was at. My mental health was being tested at full force. Anxiety was high, energy was low and those thoughts always find a way to creep in. I saw a counsellor once a week, something I had been doing for a while and it was the most amazingly useful and beneficial thing. I would say that it was life changing, she gave me an empty room to fill with all of those fears and emotions. Every week I would go and I would just empty out those fears and I would feel physically lighter, less heavy, less clouded, less obsessed with funerals. Without her I’m pretty sure I would have internally combusted.
“I was sleeping on the Living Room Floor“
Roll on to May 2022, I was sleeping on the living room floor. (I would strongly recommend investing in a sofa bed if you ever find yourself in this situation!) Ryan had been on an overnight cycler machine for the previous 3 months and it was SO loud. The beeps and changing of trays, fluids and other things were all too much for me (they really aren’t that loud but since having our baby – and going through some dreadful periods of sleep, I am the lightest sleeper and wake up to a huge rush of adrenaline at the slightest whimper or even, apparently a beep) so I moved downstairs to share the living room with our dog. This was not much better!
“I wasn’t just working hard to survive anymore, I was working hard to be able to live“
Luckily my time on the living room floor did not last much longer. Ryan got the call. There was a kidney for him. He had the op and it was a resounding success. Ryan was a bit of a mess, but he handled it as usual, with unbelievable strength. He immediately looked more like himself after the op. Even the next day. The whites of his lovely blue eyes were back. The fluid had gone and his cheek bones were back. It was incredible to watch him return. There was a week of hospital visits with childcare arrangements and routines to set up at home but nothing seemed like hard work. Because I wasn’t just working hard to survive anymore, I was working hard to be able to live. The end goal was suddenly this amazing scenario – you might just get a bit of that life back. That life that you’ve barely let yourself think about for the last two years, just in case it doesn’t happen. It was so refreshing to feel so positive again.
And that’s how it’s continued, it’s not been easy at times. We had another 3 months of Ryan not lifting our then 14 month old. She was less than impressed. But the journey has been easier, because we are working towards the life we have all been silently hoping for, albeit with a noisy toddler in tow.
One thing I have struggled with post-transplant is handing over some of those responsibilities I took on when Ryan was poorly. My coping strategy was, efficiency. I would always be thinking of the next thing to do in my head, juggling 3 things at a time. I would lie in bed at night thinking about how to make my job list smaller, what shortcut could I create to make a job easier or quicker. This is actually quite hard to switch off. It has taken a lot of communication between Ryan and I and it is a work in progress, but I am slowly getting used to the jobs being halved and the support being doubled. Luckily, he is pretty good at reminding me to take a deep breath and just start enjoying the moment again.
Last thing… I know nothing about Ryan’s donated kidney, apart from it came from a deceased donor. I know that somewhere there is a family who is grieving for their loved one, I hope they will know how much they have changed our lives. The most selfless and truly amazing gift has given Ryan his life back. The freedom that he craved is his again and he has that stupid little glint in his eye like he might just be planning to take over the world. I have got my Ryan back and my daughter has got her daddy back. I cannot express how thankful I am.