Over the course of the last quiet week I have been reflecting on what on earth has taken place over the last couple of months. It’s getting easier to focus my thoughts and whilst there’s obvious benefits in being present in the moment, it’s also important for me to be mindful about how I got here in once piece and who has helped me along the way.
I put the call out for potential donors back in April last year and the response was overwhelming. The process involved filling in a lengthy questionnaire which is designed, in part, to weed out the individuals who are not able to complete the process. So many of you filled it in that we broke the record for the number of potential live donors for a single recipient at University Hospital Stoke. Apart from my immediate family, I can’t thank you all directly as I don’t know exactly who completed the questionnaire – the donor and patient side of things are kept deliberately and strictly separate. This is to eliminate any risk of bribery or coercion, but I do have an idea based on who I sent the questionnaire to. The fact that so many of you would put yourselves forward still fills me with gratitude and joy. And then there’s everyone else, without whose unwavering support I would not be where I am today; you know who you all are.
When people get sick it’s easy to get bogged down in that ‘why me’ question. I did that for a while when I was first diagnosed. I had just got my epilepsy under control with the new wonder-drug (now considered old hat, but still effective) and was suddenly and unceremoniously diagnosed with kidney disease. After a while and a bit of work, I was able to shake off the victim mentality, but as my disease progressed through the years I knew that total kidney failure was just a matter of time. This was scary and while I generally carried it well, it weighed heavy on my mind. However, we become a refection of who we choose to have in our lives. The fact that so may of you answered my call gave me great hope and 2019 became a period of enormous of positivity and ambition. I wanted, once again, to say thank you to you all. As we know I opted to stay on the transplant list as contingency and was unimaginably fortunate to receive an kidney from a deceased donor. My gratitude, of course, extends to their loved ones.
As the weeks go by I am learning that being a transplant patient is not necessarily an arduous proposition. It’s just a different way of living that takes a bit of getting used to, just as dialysis was a change in lifestyle that required a period of adjustment. I would much rather be where I am today.
I have had to invest in some very expensive sun lotion due to an increased cancer risk in transplant patients. A third of us in the UK develop cancer at some point, even if we are otherwise completely well. However, cancer is commoner in transplant patients than in the general population. A research study has shown that 25% of patients who live for 20 years after a transplant develop some type of cancer. Cancer can occur because of the drugs given to prevent organ rejection (burden of immunossupression, rather than a particular drug) wile some types of cancer that are caused by viruses (skin cancers, lymphoma and neck of the womb cancer in women) are a particular problem after kidney transplantation. Cancer can be prevented by sensible lifestyle choices (not smoking) and by avoiding sun exposure. With my outdoorsy lifestyle, extreme care will have to be adopted, along with long sleeves and hats.
I still have have a stent in my bladder that needs to be removed (appointment with urology a week today) and I need it take it easy until that is gone. If I do anything too vigorous there is a chance it could dislodge and that would be bad. The removal should be my last planned surgical procedure for some time. I still get very tired despite doing ‘not a lot’ which is due, in part, to the fact that I am still not sleeping well. I have found that reading helps; my brain is now focused enough to be able to absorb what I see on the page, so I am making slow progress on my not insignificant pile of unread books and e-books. My glasses have migrated back onto my face. It’s a relief to be able to eat (more or less) what I want once again with lots of fresh fruit and vegetables now back on the menu. The low-potassium diet feels like a long distant memory but again, I need to be careful about the risk of high blood sugar and Type 2 diabetes, which is again a potential consequence of the drugs I am on.
I intend to give this kidney the best chance of longevity as possible, so am thinking about health and well-being like never before. I daresay there will be challenges to come but the fitter and stronger I am the better placed I will be to meet these head on. I firmly believe this is the best way to pay tribute to my donor and to all of you who have supported me throughout my journey.
#R24TRC 