In May it will be two years since my transplant. My transplant has been successful and incredible and it has allowed me to live again, rather than exist. I no longer need a machine to keep me alive.
My body sustained considerable trauma, though. The transplanted kidney has helped my body to heal, but I am not completely healed. The 12 scars that litter my stomach and neck are a constant reminder that I have been in many battles. Apart from the scars, it is the nerve damage and subsequent pains and strange sensations that are still with me every day. Though, the pain has lessened, and considerably so. At the peak of the pain, I felt like I was constantly being given electric shocks, or being stabbed by a sharp implement. For a few months, there was no let-up. If I got three hours of sleep in a night, that was a good night.
Before dialysis the pain was so intense that walking became difficult. So I started walking with a stick, then crutches and then I needed a wheelchair. The result of all this was that my feet had lots of muscle atrophy and the damage meant I could barely feel my feet. I knew the phrase ‘use it or lose it,’ so I tried every day to put my foot on the floor, and it was agony. I lost almost all sensation in my right foot. So much so that it did not feel like it was my foot anymore. At the time, I thought my brain had disconnected from my foot because of the intense pain. But my friend gave me a book called ‘Livewired‘, which is about how the brain adapts to its experience, its environment, and creates a new normal. I realized that my brain had disconnected from my foot because it could not feel it anymore. So, for all intents and purposes (at least according to my brain), my foot was no longer there.
After the transplant, Covid put my recovery on the back burner. So I decided I had to work out what to do myself. Thank goodness for YouTube and the physiotherapist’s Bob and Brad (I love you!) My cousin Helen, has also been a great help. She is a therapist, and I have been going to her for reflexology since the transplant. I could see no one else (physio wise) so my transplant team allowed me to see Helen as long as she was in full PPE. They were also happy because she was working on my feet. Though I’m tiny, so there was certainly no social distancing! After the first session, I got off the bed and I could feel my feet. Amazing, it was wonderful. It did not last long, but I shall never forget it. The problem when you can’t feel your feet is that you stumble: you catch your toes where the foot has dropped. It meant my walking was painfully slow. I had to lift my foot with each step, (as does everyone) but it was a conscious thought. It is surprising how tiring it is when something so innate becomes unlearnt.
I could not drive. I still can’t. When I push down with the ball of my foot, I get a searing pain. As well as all the muscle atrophy, I lost the fat pads in my feet – which meant I lost my cushioning. My bone protrudes, and it pushes down on damaged nerves.
My independence was lost. I wanted to drive, but I knew I would be a danger. Before I stopped driving – before the cushioning had completely gone, I was driving Darren home when the pain struck and I could not put my foot on the pedal. I had to pull over. It frightened me. As things got better, I wanted to see if I could push down on a pedal again. I thought trying the yoga position The downward dog (as you put your weight fully down on the balls of your feet and hold it) would be a great test. After doing that exercise for about a minute, I could not walk for a week. I still keep trying and now I hobble about for a few hours, rather than a week, so there is progress.
The exercises were painful, walking was painful, but eventually, things got easier. It was hard not to get disheartened, as the gains were so small. But, when I look back now, I realise just how far I have come. Some days were better than others. I pushed more on those days and then my foot would inflame, swell, go blue and I had no choice but to rest up and elevate it. But when my foot got better, I would be up and off again. I often wonder what would have happened if I had not kept ploughing on through.
A year after the pandemic, I finally saw a physio. It was not the ‘don’t worry – just do this and it will be all ok’ appointment that I had hoped for. Instead, the physio said I had sustained so much nerve damage that it was probably never going to get better. She thought it unlikely that I would ever drive again, and she did not give me any exercises, as she thought it would be too painful. I was pretty upset. But the physio said that she wanted to manage my expectations and not give me false hope. I understood that, but I was so deflated. She told me that the nerves had stopped talking to the muscles and if I could get my brain to connect to those nerves again, it might help. Something I could work with, at last! I could do this by using sensory stimulation, walking on grass or sand, pebbles (ouch) If my brain was aware it could feel something, it could help get the brain to rewire, and talk to the nerves again. I massaged my feet every day, and I had noticed that if I missed a day, the pain and numbness were worse. So this made sense to me and it was a positive thing to try. I saw two other feet specialists, but both couldn’t help. Although one of them said that no one could tell me that nerves couldn’t heal. I just had to persevere and realise that recoveries like mine take a long time.
I’m now 20 months post-transplant. Things are better. When I saw Helen a couple of weeks ago, she said it was the first time she could do a proper reflexology treatment. Previously, my foot would shake with pain or I would jump a mile, so she had to be very gentle. But at this latest treatment she could apply pressure. She also said my foot had some muscle tone (finally!) So my nerves have started to talk to my muscles. Helen was so happy. She has seen more than most what a struggle it has been and has always been championing me on. I could hardly contain my smiles. I could feel most of the treatment, and this had not happened before.
Something else has happened in the meantime – I’m not sure if this is because of the nerve damage or if it is unrelated. But some of my muscles are stronger than others and occasionally I no longer have control of them, particularly in my neck and hands. They have referred me back to a neurologist. But in the meantime, I have applied the same things I have learnt from my feet. I need to exercise to strengthen the muscles I have control over and hopefully, this will help connect my brain to the overworking muscles and bring back control. I’ve coped well with all the kidney dramas over the years. But this has been hard. I don’t want to see people I don’t know, and I dread going out and sitting for long periods as the tremors start and I cannot stop them. Covid has added to anxiety on top of this, so I know I’m not the person I should have been two years after my transplant. I’m trying to get back to that happy-go-lucky girl, but I feel I may have more work to do before that happens. Writing helps – once it’s on the page, it does not feel like it’s filling my mind and I suppose it helps me to let go of it.
So, lots to reflect on, I realise that the only way forward is to keep going, keep putting one foot in front of the other. The brain is amazing and if you help it, your brain will help you. I’m not sure how much better my foot can get. I’m not sure fat pads can come back once they’ve gone. But who knows? Doctors talk so much in absolutes, I try to remember to take it with a pinch of salt. I have been told so many things over the years that the doctor says as gospel, but they turn out to be wrong. I just have to keep taking those steps forward and we shall see what another year of recovery and exercise bring.
Celebrate the wins. I learnt this so long ago, but I still have to remind myself. For so long, my walking was so slow, everyone would go around me. I would always think please don’t be an old person, please don’t be an old person (it nearly always was!) But now I am finally walking faster and stronger and I’m happy to say that old people are not charging past me.
PHOTOGRAPHY
I had a wonderful year photography wise. We were able to go and explore and saw many sunsets and a few sunrises. Here are a few of my favourite images.
