I remember the moment with exact clarity when my husband called me to tell me that the creatinine that we had taken for granted to stay the same for so long was on the move and not in a good move way! He had just celebrated his 50th birthday, we were on holidays at our favorite place, and everything just seemed to stand still when he told me a kidney transplant was imminent within the next 1-5 years.
Shane was diagnosed with IGA Neuropathy, an autoimmune disease, in late 2008. We had no idea when, how or for how long he had kidney dysfunction for, but it was picked up with a fluke check of his blood pressure by a trainee nurse at a boys weekend. I am forever grateful to that nurse as kidney disease is a silent killer where you look and act fine, but the kidneys could be close to failure.
For around 10 years, Shane’s kidney disease was monitored with blood pressure tablets and creatinine level tests. He looked the picture of health and was an extremely active, fit man. We enjoyed triathlons and cycling together and he played Masters AFL his one true passion (besides me!!). To look at him on the surface everything seemed totally fine. It’s easy to look back and see how you can easily forget that you have kidney disease when someone is so fit and healthy looking. We enjoyed a very full and active life.
It was just after his 50th birthday in 2019 we received the news of most likely dialysis and transplant within 1-5 years. I am quite intuitive and even though I wanted to believe it would be closer to the 5 year mark, I knew in my heart this was going to happen quickly.
It was a no brainer for me to put my hand up to be a donor straight away. This was met with, “no way I’ll just go on the wait list for a kidney” and from our four children, “I’ll do it, I’ll do it.” I’m also quite stubborn so I got my way!
The testing compatibility process in Australia is long and thorough. It took me approximately from February to August of testing not only tissue matches and blood type, but numerous heart scans/stress tests, psychiatric tests, glomerular function tests, and CT contrast scans of the kidney (which is how I now know I am allergic to the contrast dye!)
I was 48 at the time of the testing, fit and healthy and worked as a pilates instructor running my own business, personally teaching about 14 classes per week and going to my own gym training sessions 5 mornings a week. I still remember each medical test was a relief that I had passed another one and that bought us a step closer to a donor match.
In the meantime, the speed of Shane’s kidney function was rapidly declining. It’s funny even though he had had this disease for a decade, we knew very little about how the kidneys actually fail. It’s not pretty!! Within the space of a month, Shane went from 20% kidney function to 11% and with that a worsening of all symptoms. The PA Hospital’s transplant team’s plan was to avoid dialysis and use as much of his own kidney function as there was left. He went down to 8% in the last couple of months before transplant and had a really tough trot. The tiredness and inability to stay awake was the easy part, the spontaneous tendon ruptures in his achilles and patella tendons were incredibly painful were he needed crutches to walk. His potassium levels soared and was at risk of heart failure so a kidney diet was needed along with more medication. He had a rotten taste in his mouth all the time and I watched my happy go lucky, vibrant husband sleep and decline.
For me, the stress of watching someone you love get so sick and not be able to do anything about it was enormous. I called my stress inside my stomach “the lawnmower” as it seemed to buzz around my stomach solar plexus all day and night like a motor. I feared that that 8% kidney function could just drop over night and he would be gone. I would wake up and touch his hand to see if he was still warm during the nights. I was terrified of losing him.
A day before my 49th birthday, I found out I was a match and the transplant was booked for a month later in September. Even though the stress of being a donor match was gone, it was still incredibly stressful to not know if that little 8% function would last a month! A lot of prayers and deep breathing got me through alongside the movement and joy of teaching and doing pilates. I found that the deep connection of breath, body and soul centered me during this time.
I remember my surgeon saying to a week before the operation, ”It’s going to hurt; it’s going to hurt a lot; it’s going to hurt to breathe! We just don’t lift the kidney out, we cut it away from the adrenals, the spleen, liver, intestines, the diaphragm (hence the breathing pain!) and then plumb it all back together.” He also said thin people with little or no body fat have a harder time as there is no fat to insulate – I was 50kg at the time and all of this fell on deaf ears!! I just wanted to get that kidney into my husband!
The day of the 19th was emotional to say the least, lots of tears from our beautiful children Bec 31, Em 28, Matt 24, and Lil 21, and our parents. We definitely felt surrounded by the wave of love and well wishes from family, friends and my beautiful pilates community around the globe. I can honestly say I wasn’t nervous, I was more excited that I could have a well husband again. I had said goodbye to me left kidney the night before, blessed it in golden light, thanked it for serving me and told it to do a good job.
The doctors surrounding my theatre bed were all in tears and said, “We will look after you, we don’t want to make a healthy person sick. We think live donors are national treasures.” It was an emotional moment and I had total trust in them to take care of me. The last thing I remember was giving advice to a nurse on how to do a pilates bridge to help his back!!
The next thing I woke to feeling like I had been hit by a Mack Truck. I had stupidly thought I would have my operation and be back in the ward bright as a button to see Shane be wheeled back into the ward to give him a hug thinking that he would be the one totally out of it!! It was a little different in that I went to theatre at 8 am and didn’t get back to the ward until 9 pm that night. I had a reaction to the pain drugs and wasn’t waking up, around 3 breaths per minute so no hospital ward wanted me there. In the meantime, Shane’s transplant was complete and he was high as a kite on prednisone and happy as larry. It still amazes me that I was the healthy, fit one and I had the worst time post surgery.
The transplant was an instant success and the kidney started working from the get go – almost a little too well. We nicknamed it the “turbo kidney” as it has such a good function rate. It still brings me to tears, when I was finally wheeled out of recovery and I saw all of our adult children’s little faces cheering for me, the worry, the elation, the love written all over their faces.
The rest, as they say, is history… we were so blessed to have a functioning successful transplant. The recovery was lengthy for me to return to full strength weight training and teaching but little bit by little bit each day our bodies got stronger and stronger. I am so grateful to have had the knowledge of anatomy and pilates to rehab my body little by little. I remember the day I could laugh and sneeze without pain was joyous! I had to find a whole new respect for my body and really tune in to what it needed. Knowing if I was pushing into a stretch too hard, it definitely let me know, so I listened. Also lifting weights was back to baby steps one kilo at at time. I was always listening to any pain signals my body was giving me and backed off. Just taking the time to rest and let all those cells heal was incredibly important. I had gone from vibrancy to being so very tired doing the simplest tasks, but all of that was just my body using up extra energy for the healing process. Total respect!!
I also have been a remedial myotherapist so I knew the importance of massaging my scars especially the long transverse one. The more you can massage it in straight lines, I knew the scar tissue under neath would heal in more functional patterns. During the last 18 months, I think that has still been a nagging issue with my transverse scar, but with massage and exercise I have no discomfort at all anymore.
Initial post-transplant was daily hospital visits and blood tests to monitor that ever important creatinine and look for any rejection. We were both recovering brilliantly and looking forward to getting back into training together and all things exercise when two months post op, Shane developed HOCM – hypertensive obstructive cardio myopathy. He would do something slightly strenuous and pass out to the ground. We passed the 6 month post-transplant with flying colors but now had a new heart issue that had everyone scratching their heads at its suddenness and fierceness.
Alongside all the anti-rejection and immunosuppressive drugs, he now adds a heap of beta blockers to his drug regime – he practically rattles!! The heart issue is non resolvable at the moment so exercise for him is a no no. His heart rate must stay under 100 beats. He is such an amazing person and has accepted this new news with an attitude of “I have been given the greatest gift and that’s all that matters.”
As for me, “the donor” as he lovingly calls me, it’s all systems go 20 months later. I have such great respect for the surgeons who performed this major surgery, marvel at my body and its healing capacities, and reflect on the lessons that time of stress brought me.
I have learned to release all control of things and trust a lot more that all will be okay even in dark times. I have felt enormous stress and witnessed the healing of pilates, breathing and meditation before and after transplant. I love everyone a little harder every day. I am grateful for each day and don’t sweat the small stuff.
I am grateful for this journey and what it has taught me.