I grew up as a happy kid with a loving family. I consider myself as the luckiest person on earth, being provided everything I wish for. I graduated and then started working in Kuala Lumpur sometime in 2003. My now husband, Satya (my university sweetheart then) left for japan to continue his studies. Our long distance relationship went well and I continued my life independently.
We decided to get married in 2007 but that is when I started having fevers and joint inflammations. I started having inflammations at different joints every week (knee, thumb,toe). I was suspected to have reactive arthritis and therefore prescribed NSAIDs to ease the pain. Blood tests were done almost every week and the results were negative for major autoimmune diseases. It was quite frustrating to have all kinds of pain while not being able to identify the cause.
In March 2007, my renal profile was checked and the doctors (I had 2 doctors) noticed an increase in the creatinine level (195umol/L). The kidneys maintain the blood creatinine at a normal range (53-88umol/L). High creatinine levels indicate possible failure of the kidneys. The doctor recommend a kidney biopsy to be done immediately. I was therefore referred to a nephrologist. I had no idea on the seriousness of my health condition then, because I looked totally healthy. Besides, the nephrologist seemed relaxed and scheduled me for a biopsy after one week. We were not convinced, therefore we consulted another nephrologist and he performed the kidney biopsy the very next day. Satya returned from Japan and we continued our wedding plan. Then one fine evening, my nephrologist called and told me that he has bad news. My biopsy results returned. My kidney tissues are globally scarred and that means I have chronic kidney disease.
I was totally shocked and devastated as chronic kidney disease is irreversible. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or kidney transplant to maintain life. I was admitted on the very same day and was given steroids to stop further damage to the kidneys. As of end of April 2007, my creatinine was 388umol/L. I was hospitalized for three days and Satya was beside me all the time. We were told that female kidney patients are not recommended to conceive and I must follow a very strict diet (low fluids, low protein, low phosphate, low potassium and low salt). I silently thought that wedding is out of the question.
Then one day, Satya came to visit me looking dashing, wearing a formal shirt which is most inappropriate for visiting someone on a sick bed. He took my hand, and brought me to the hospital's chapel. As we walked, I noticed the nurses giggling and I knew what was coming. Blood rushed to my face and as we enter, a nurse was recording 'the event' using Satya's camcorder. I grew excited, shocked and surprised! He told me to sit and he took out a violin from its hidden place and started fiddling my ultimate favourite music. I was overwhelmed, I cried. He knew that I love violin. He had been learning all the while and kept it a secret! Then he proposed. It seems that he got the ring a year back! It was beautiful!
I was discharged and we got married after 3 weeks! It was a simple, but beautiful wedding. I was terribly weak due to the side effects of the steroids, yet it didn't stop me from being happy. Steroids side effects include vision problems, shortness of breath, high blood pressure, mood swings, sleeping disorders, acne, thinning skin, bruising, slow wound healing, increased sweating, headache, nausea and moon face syndrome.
Satya extended his leave and moved with me to Kuala Lumpur. I canceled my leave and went back to work. Those were the happiest moment. We enjoy going shopping, practicing yoga and watching movie together.
Everything was going well till one night, I had the most disastrous stomachache. I vomited a few times and thought it was food poisoning. We rushed to the emergency department and I was confirmed to have appendicitis. I was admitted in the morning and was only operated at night. Imagine the pain I went through the whole day. The appendix was perforated but I was OK.
Then in August 2007, the doctor gave us another bad news. We learned that the steroids did not work and my kidneys continued to fail at an alarming rate. Reasons still unknown :(
Satya couldn't extend his leave any longer, therefore returned to Japan. That was the saddest moment. We were so happy together. I couldn't follow him as I needed weekly hospital treatment.
Then 2008 came, I took medical leave and stayed with my parents temporarily in Ipoh. In early October 2008, I was breathless and had excruciating pain on my lower left chest. We rushed to the hospital and I was admitted for pneumonia. The doctor advised that I start dialysis soon. I was devastated again. I hoped to have a kidney transplant without being on dialysis ever. My mom was so kind that she was willing to donate her kidney. But the progress (tests for transplantation) was very slow. I had no options but to start dialysis. There I was in the hospital, started my very first dialysis a day before my 29th birthday!
I quit my job and started my dialysis. My mother took care of me as dialysis was disastrous for me. I always end up having headache and sometimes vomiting. It took me a very very long time to adapt to dialysis.
Satya returned in February 2009 and in March 2009 I had increased pulse rate and my blood pressure was very high. I was referred to a heart specialist and an ECG confirmed that I have heart failure but it was reversible. Thank goodness! My blood pressure and hemoglobin was monitored.
Then, in December 2009, Satya got a job in Japan and he were to leave on January 2010. In the meantime, we received shocking news (after 2 years of multiple tests) that my mother's kidney would not match. It was a hopeless moment as it meant dialysis for the rest of my life. That's when my husband's friend, Dr Nozumo Yachie (an angel in disguise) suggested that i get treatment in Japan. He referred me to a family doctor and thus was introduced to Dr.Ken Sakai (another angel in disguise). We didn't expect this at all. After some last minute arrangements, we finally flew to Japan together.
I received my dialysis treatment at Nishiguchi Dialysis Clinic, nearby our apartment. In the meantime, I visited Dr Ken Sakai's clinic at Toho University Hospital every month, preparing for kidney transplant. A few 'angels' offered to donate their kidneys and finally we found a match!
In May 2010, I was admitted in Toho University Hospital for two weeks and several tests were done preparing me for the transplant. The operation was finally scheduled in July 2010. Now I am awaiting for the transplant procedure.
That gives me hope :)
If the transplant is successful, I can resume a normal (well maybe almost) life while following a strict medical regime. There are no greater things for me to ask. I am tremendously grateful to my donor, thankful to the doctors and thankful for this great opportunity I was given. Let's just hope for the best as my journey continues...
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