Acceptance of the truth of kidney disease is the first step

Maggie Ng Miu Man has been living with kidney disease for 35 years. She tells the story of when she underwent hemodialysis and had two kidney transplants. She also shares her experiences coping with her disease and how patients with kidney disease can be hopeful about the future.

Everyone in the world must face their challenges in their way. For me, it is living with my kidney disease. I have been a kidney patient since 1985. I am Maggie Ng Miu Man and live in Hong Kong. I underwent plasmapheresis, hemodialysis, and kidney transplants.  My first transplant was before Christmas in 1986, and my second transplant was in 2016. I have a 35-year relationship with my disease. Our relationship is not a bad one, and it teaches me what suffering is and what a treasure is. I do not dare to say that my life will be better if I did not have kidney disease.

I was diagnosed with IgA nephropathy before my final journalism exam. The doctor even asked me to drop the exam.
I was shocked by the news because I was ready to become a journalist, and I was eager to earn money to support my family. My anger could not stop symptoms such as fatigue, the ability to travel, and pain. My situation deteriorated quickly, and I was admitted to the hospital right after my exam.

I started plasmapheresis treatment, and I got chills when the frozen plasma entered my blood vessels. When my fistula was operated on, I underwent hemodialysis for ten months before my kidney transplant with a live kidney donated by my sister. During the hemodialysis treatment, I was always vomiting after the treatment. I felt liberated after the transplant happened, only being on medication.

We all know that organ transplantation brings hope. I started to be a journalist in a daily newspaper. I published magazines for almost 30 years. I got married and have two children aged 21 and 27. My career has also focused on services for kidney patients. I joined the Kidney Foundation of Hong Kong in 1997. As an advocacy professional, I have been involved in many kidney patients events, such as World Kidney Day, since its creation.

In my opinion, I advise other patients to accept the truth about the disease and work closely with medical professionals. In addition to their contribution, the positive attitude of the patient is more important. To live well with the disease, patients should have an interest in having an active social life. Join a patient group to get more information and mutual support from a peer group. Patients may even volunteer to serve the peer group or do other services. Life will be more meaningful, joyful, and fruitful. Positive thinking and active living will strengthen both mental and physical health.

As a patient, I am grateful for everything. I didn’t blame anyone. I do the things I can do. I accept everything that happens to me. I had kidney failure again in 2016. I accepted the situation, and I didn’t have to worry like the first time. I knew many ways to treat myself. I did the jugular tube [editor’s note: a tunneled catheter is surgically inserted into a vein in the neck or chest and passed under the skin], and I had bleeding at the exit site for a few days. Honestly, it was pretty scary. The medical professor told me that I might have to take the catheter out. I accepted it calmly. Still. What a miracle, two doctors came to see me during their lunch hours, they pressed on the bleeding site for an hour, and the bleeding stopped. This made it possible to proceed with the second transplant. Another kidney was donated by my other sister.

My message to kidney patients: Dear kidney disease fellows, please trust your healthcare professionals. They will do their best to help you and will make sure you do the same to help yourself. I have learned from my experience knowing that my health will continue to deteriorate in the future. Yet, I will live my life to the fullest every day and cherish every moment of my life. Be a good patient, follow the instructions given by healthcare professionals. Be grateful to your family and friends. In the meantime, the world is suffering from COVID-19. And as a kidney patient, I know better precautions and this have a stronger mind to deal with the crisis. I always think of kidney patients as brave warriors. We shall overcome.