The first person I ever met who was on dialysis was a woman named Carol. I was lying in a hospital bed recovering from the AV graft operation. Carol had struck up a conversation with Craig while I was being admitted, so knew a little of my situation. When I returned to the ward after my operation, she came over and introduced herself.
Carol told me she’d felt anxious when she started dialysis because there was so much she needed to know and no-one to answer her questions. She offered to chat to me about her experiences and answer any questions I had.
Then she shared a little of her own story. Carol hadn’t been aware that her kidneys were weakening until she fell ill and went to a local government hospital for tests. She was given the results and was informed that she wasn’t able to receive dialysis as the resources at the hospital were too stretched. She was given the same diagnosis at the second hospital she approached. My mind spins when I think how it must have felt for Carol to hear that she had only a few weeks to live unless she could find a way to receive dialysis.
Thankfully, private medical care was an option for Carol. She simply hadn’t considered it as she had no reason to do so. Until she received her diagnosis of chronic kidney disease. Now, almost six years into her dialysis, she is doing well and manages to juggle her treatments and her full time job With minimal problems.
Carol and I ended up chatting for several hours as I asked her all the questions I had about what I would be facing. I asked her how dialysis felt, whether it was painful, how she felt after treatment, and to what extent the treatment had changed her life. I also asked her to tell me about the treatment centre that she went to, and how it all worked. Carol patiently replied to all my questions and the resulting knowledge eased much of the anxiety I had been feeling.
Two weeks later, when I had my first dialysis treatment, I felt at least a little more prepared, thanks to Carol. Of course, I still had many questions and was grateful that the nursing sister who supervised my first dialysis session was equally willing to chat about his experiences working with patients. I could not have had a better guide to lead me through that first session.
Currently I have dialysis three times a week, for three hours each session. I go to a treatment centre in Plumstead, sadly not the same centre as Carol. I have already started developing friendships amongst the patients and medical personnel at the centre. We receive excellent care from the entire team and are generally visited by our specialist once a week so he can monitor our progress.
I doubt you’ll be surprised that starting dialysis had a profound effect on me. I’m not embarrassed to tell you that I broke down in tears a few times. First, when I phoned and broke the news to my husband, Craig. I also cried after my first treatment. I felt overwhelmed by the reality that there was no way back for me. Now that I was on dialysis, I would remain on dialysis. At least, for the foreseeable future, unless I was found to be a candidate for a kidney transplant. I no longer had a choice. And that was hard to accept.
It was difficult because I’ve always valued independence. I’ve always valued choice. In effect, I was now dependent on a machine to keep me alive. And I had very little idea of how that would affect my life. Sure, I knew that Carol and countless other people are able to live full and productive lives with chronic kidney disease. But I had little idea how that would look in my life. I knew it would impact, but didn’t know how much. So I was grieving for the loss of choice and independence.
Yet, the brain is remarkably powerful. It is able to adjust and accept. And soon I found myself looking into the future.
I often speak and write about my ability to negotiate change quickly. When something changes, I find my thoughts shifting from dwelling on the negative to working out what options are open to me. It happened when I became blind, and it happened on other occasions when I experienced challenges. I consider it an asset, a strength that I’m grateful for.
It is true that for now I cannot survive without dialysis treatments three times a week. But ultimately I choose to focus on the understanding that the dialysis gives me the chance to continue spending time with the people I love – my family and my friends. It enables me to continue doing the work I am passionate about. Ultimately, I will never lose sight of the fact that dialysis treatments are a privilege that many people are denied. Simply because they lack the resources that I am fortunate to have.
I will always be grateful that I am able to receive dialysis. Even if it has turned my life upside down in some ways. But more about that in the coming weeks.
