LIVING WITH END STAGE KIDNEY DISEASE – A PATIENT’S PERSPECTIVE                               

One always heard, life is but a fleeting moment and in the twinkling of an eye it is gone.  My life changed drastically in 1989 as I sat in my doctor’s office in awe, as he said to me “What is going on with you? You seem to have lupus.”  I just laugh and he couldn’t understand my reaction.  A while later he said, “How can you laugh?  I’m serious! Something is seriously wrong.  You have to have further tests.”

I had no desire to be fat and very conscious about my figure (smile) I went on a scardale diet to lose the five pounds I had previously gained.  As far as I knew at the time I was healthy, doing all the right things, living a healthy lifestyle, exercising and the works but this was not enough. The prognosis was made and I was given a life sentence.  I had Chronic Kidney Disease or Renal Failure, the other common name used.

A young vibrant person with a husband and a full life ahead of me, my mind started to work.  I decided I shall not die but live.  I was told by another patient, “Oh you have been given your death sentence.”

As a Christian and having a strong belief in healing I set out on a spiritual journey.

I was given the choices for treatment and the reassurance that people with CKD can live for years and with your doctor’s guidance you would be alright.

At that time haemodialysis was the main form of treatment in Barbados and a few years later we were introduced to living donor transplants. I started haemodialysis in 1990 having to go to the hospital and sit on a machine for three days per week for four hours sessions, to have the toxins and excess fluids removed from my body, seeing the kidneys were no longer able to perform the task they were designed for.

Living with CKD, life changed dramatically.  I was forced to give up a great degree of my freedom and to make major adjustments to my lifestyle.   This interfered with my productivity, as I worked shorter periods as I was not feeling one hundred percent at times especially after treatments.  My activities were restricted and attending functions and travelling especially became more expensive as I would                                                                                                                                            have to make provision for dialysis wherever I go. There were restrictions to the things I could eat and drink and I was forced to slow down.

The support of my family and loved ones was the most important during this period and they stood by me in my varying circumstances from day to day.

Dialysis is hard, not only because of the treatments, but also because of the dietary restrictions, the medication regimens and the side effects such as fatigue due to anemia, low blood pressure and malaise that are experienced post dialysis.

When you are diagnosed with Renal Failure and you are told you need dialysis, your emotions are stirred. The questions asked are,  why me, how will my family cope with this news, what will happen to me?” 

I must admit that having a positive attitude, accepting the changes and living a positive mental and spiritual life can promote a better physical health.

It has been a long road for me with some good years and bittersweet moments.  You see, I was fortunate to have a transplant, the kidney donated by one of my eight siblings a brother, one of a closely knit family.  This gift of life lasted for eight years, my skin regained it natural beauty, and I returned to work full time and was on cloud nine again.  Unfortunately another setback came and I returned to the dialysis program.  The donated kidney, a foreign body to my body was rejected despite the use of anti-rejection medication.  I have been on dialysis since then for sixteen years, but the support of a good husband, family and friends, doctors and most of all the Almighty, who said in His word ”his grace is sufficient for me”, I have been able to face my fears and wear a smile, as life, despite all, is still beautiful.

I dedicate this article to my husband Winston Knight who passed away five years ago, the epitome of what a good husband should be.  He brought out the best in me, and all who came in contact with him. He was my best friend and he will not be forgotten.

Love you forever.

To the dedicated doctors, nurses, technicians, and ancillary staff in the Queen Elizabeth Hospital, you give your time, hearts and souls to each one of us.  I say thank you from the bottom of my heart.