Earlier this afternoon I was invited for lunch at a rented apartment of a patient living with Chronic Kidney Disease. This is my third time visiting Christian Medical College (CMC) hospital for a medical review. The hospital is a revered medical institution in India. Currently, 58 Bhutanese patients are here for consultation and review of complex medical issues like Chronic Kidney Disease, Joint Disorders, Coronary Heart Disease, Gynecological Diseases, Cancer, Dental Disorders and other complex and rare disorders.
Every time I come to Vellore, I make sure I mingle with our Bhutanese patients and cheer them up . I have lived with Bhutanese patients and attendants as their housemate, so getting to know about the condition of the patients, diagnosis and their stories wasn’t difficult to comprehend.
Stories of how the patients went through near-death experiences (NDE) and their journey towards recovery has fascinated me about the resolute will of humans to defy the odds for survival. I have never met any person who gave up easily in life. Many turned out to be warriors, especially the womenfolk who were the donors of kidneys to their relatives.
A kidney transplant is a surgical procedure to place a healthy kidney from a living or deceased donor into a person whose kidneys no longer function properly. People with end-stage renal disease need to have waste removed from their bloodstream via a machine (dialysis) or a kidney transplant to stay alive.
For many, finding a kidney has been the hardest part of their journey to match the kidneys between the donors and patient depends on the degree of blood and genetic compatibility. Some people get a match within several months while some have to wait for several years. The whole process is arduous and time-consuming.
The Soul Mates
In 2018 uncle Tashi, my best friend’s father was diagnosed with kidney failure. He was referred to as CMC Vellore. Uncle Tashi is survived by his 5 children and wife Namgay. The moment they started to look for donors, their two sons volunteered to be the donor. After running the tests, both of them were disqualified to be donors due to their health issues.
The other two children lived abroad and the youngest was still a school goer. Since the beginning, Ama Namgay volunteered to be the donor but the children didn’t want her to donate. As time ticked making the life of the patient difficult, Ama insisted to run the test to donate her kidney. After several tests, they found that her kidney was a perfect match for her husband patient Tashi.
From a medical point of view, it is pretty rare for a wife and a husband, who are genetically unrelated to have a perfect match. When I heard the story, I was in tears. Not only did my Aunty gave birth to 5 beautiful children but also gave a second chance of life to her beloved husband. Today for me, they are the epitome of true love. Uncle the survivor and aunty the wonder woman!
Man with 4 kidneys
During one of my medical checkups, I heard through other Bhutanese patients that a young man in his early thirties was admitted to the ICU because of a second-time kidney transplant failure. It occurs when the recipient’s body rejects the donor’s kidney via a complex process of immune dysregulation. Since the first kidney transplant performed almost 60 years ago, advances in medical science have led to failure rates plummeting and success rates soaring to the high 90s.
In this tragic case, two transplants were done and both the kidneys had been rejected. It was a medical and emotional disaster. I along with my sister and other patients rushed to the ICU. Outside the ward was the attendant of the patient, his mother who was probably in her 50s. She wept as we walked closer towards her. Doctors had told her that her son was battling for his life and had very high chances of dying. Her world was crashing down.
As she calmed down, she shared that her husband ( the patient’s father) had donated the first kidney to the son (patient) and later on the second kidney was donated by the mother herself. She said that her son had in him 4 kidneys.
She continued that technically it’s the kidney but it’s the seed of love we gave to our son. Each from the parents! As she wiped her tears she recalled how the father first donated his kidney to son and later on herself. The reason behind why the first donated kidney failed was because of a lack of proper medical follow up and adherence to treatment. Therefore, to survive for yet another time, the mother became the Childs saviour.
At a very young age, Dema was diagnosed with Diabetes and High Blood Pressure. Later, the ultimate nightmare happened. Her kidneys started to deteriorate and eventually, she had to undergo dialysis due to end-stage kidney disease.
At the age of 40, Dema’s husband recalls how Dema nearly died thrice and came back to life after so many ups and downs. Today Dema is survived by her loving husband who is a serving in the Royal Bhutan Guard and a son. She is also supported by her siblings and her mother.
Already, 3 donors had approached her for the kidney transplant but none of them passed the compatibility test. Although her husband wanted to donate his kidney, he failed the tests .
After 7 months of struggling to find a donor, the younger sister Dawa, aged 25 has come to Vellore to see if her kidney fits the patient, Dema. On the brighter side, they have kept the option for a paired kidney exchange, also known as a kidney swap, which matches an incompatible donor/recipient pair with another incompatible donor/recipient pair.
Yesterday I met the family. The younger sister comes out as a courageous lady. She shared “I am not married and I don’t even want to get married. I want to help my sister. I simply want to save my sister and give her a chance to live”.
Deep within, my heart sank a bit and I nearly shed tears.
These three amazing stories show how strong women are like the warriors in keeping another person alive. However, this post does not mean to belittle their counterparts’ role.
This post is dedicated to all the families of patients with Chronic Kidney Disease and to the patients themselves who have undergone the very difficult journey in receiving a transplant. It is a journey we will never understand. But we can try and empathize. I would like to sign off by quoting from a poem called Go to the Limits of Your Longing:
“Let everything happen to you: beauty and terror.
Just keep going.
No feeling is final.”