Michael’s Story – Back on the Slopes
It’s now two years since I wrote about my experience of AKI 3. Since then, I have done very well and lead a full, exciting interesting and happy life. I put my feeling of wellness at about 80% of my pre-illness level. Pretty good considering how fit I was then. That is not to say it is constantly at that level. Generally, first thing in the morning I feel below par and as the day creeps on, some of the side effects of the immunosuppressive drugs become noticeable. I get tingling in my hands and feet, sometimes a mild tremor and a feeling of fatigue. I seem to have a pattern, for about a week every month, I feel particularly below par and then things pick up.
Exercise consistently improves or relieves my symptoms and makes me feel good. I have a routine of exercise bike, floor exercises and weights that I do for about fifty minutes five or six times a week. In addition, my wife and I walk at least two miles a few times a week and we belong to a rambling group, frequently walking eight miles over steep hills. I try to do the exercise about thirty minutes after a light breakfast. It is often difficult to force myself out of bed to do that, but l remember what a ski instructor taught me many years ago. He said that if caught in an avalanche, there is a tendency to curl up in a ball and do nothing. A certain recipe for death, you need to be pro-active. So when I want to curl under the covers I think of this, fight my feelings and get up.
Following my transplant, my kidney function has been stable and I now see the consultant once every four months. Just before Christmas, I suddenly developed a reaction to mycophenalate. The first time in six years. Horrible diarrhoea about ten times a day. The mycophenalate dose was reduced, a steroid introduced as a temporary measure and after three weeks I was back to normal. The mycophenalate is currently being reintroduced and the steroid reduced. It was important to maintain my fluid intake during that period, supplemented by Dioralyte to replace salts. My kidney function was tested frequently and I did not suffer any adverse kidney effects. It wasn’t necessary to be admitted to hospital. However, I did lose five and a half kilos in two weeks, a bit worrying.
I’m fine now, back to living a full life. I passed my dental practice on to a colleague in December 2011 and stopped teaching in July 2015, considering that the best time to stop was while the profession still wanted me! I do however have a major lecture to deliver in June 2016. I have started piano lessons, something that I had been promising myself for years. I now have time for lessons and practice – I love it.
I am involved not only in the NHS England Think Kidneys programme, but also The London Acute Kidney Injury Network and The UCL Partners Collaborative, all aiming to improve the care for patients with AKI. It is very satisfying to be able to give something back. As a result of this I am frequently asked to lecture to the medical profession about my experience of being a patient. The clinicians are extremely receptive to my story, genuinely interested, grateful and supportive. As a result of this I have been writing a book based on my experience of being a patient. I have finished the manuscript and am trying to find a literary agent/publisher, but appreciate that it is a bit of a niche market. If one is not forthcoming, then I will probably self-publish. I feel passionately that I would like to inform the general public about AKI, and the medical profession of how It feels to be a patient. Also to let people see that even when the odds are completely against you and the prognosis bleak, sometimes we survive and life can be good. In fact, remarkably, life is in many respects better than it was before my illness, and it was pretty good then. I’m not remotely suggesting that anyone should be ill in order to improve their lives, but if they are fortunate enough to respond to medical care, are able to adopt a positive attitude to life and create opportunities to feel fulfilled, life post illness can be good, so very good.
During the darkest days of my illness I set myself a challenge- to ski with all of my grandchildren. I had no idea whether I would achieve this goal. One year after my transplant I skied with three of them and in February 2016 I did it with all five of them. It was a very emotional moment.
I have to give thanks to my devoted wife Priscilla, my family and friends, my amazing live kidney donor Lorraine, the medical profession and the remarkable NHS. The latter is a sign of a civilised society, providing health care free at the point of need, funded by the entire community and available equally to all regardless of social status and wealth.
In March 2016, Priscilla and I went out for our sixth annual kidney transplant celebration lunch with Lorraine and her father. We tend to avoid steak and kidney pie!