Sejal Jobanputra, from India, shares her touching story about her kidney transplant operation – with her dad as a donor – being canceled one day before the set date due to the final cross-match test showing a positive match. She then shares her feelings of loss and despair, especially after losing her dad, and how she found purpose in her work with the patient support group organization Kidney Warriors Foundation.
The countdown had begun. I was just a few hours away from my second transplant and a return to a normal life. The reports and cross-match with my beloved dad as a donor were perfect. I was excited as I made plans for life after the transplant, while at the same time, also disturbed by some anxious thoughts. But nothing prepared me for the fate that unfolded the day before my surgery.
As per the protocols, the cross-match was repeated, and the result showed a positive match! [Editor’s note: A cross match is a test that mixes blood from the donor with blood from the recipient. The test is performed to initially check for compatibility and it is repeated right before the transplant surgery. If the recipient’s cells attack the donor cells, the cross match is considered positive and the transplant cannot be performed].
How it turned positive was beyond my comprehension! The transplant was called off a day before the scheduled date. Dad was as devastated as I was. We wept uncontrollably. My doctor consoled us by reiterating his assessment that antibodies tend to become problematic, and he suggested we try again after six months once the antibodies have been reduced with immunosuppressants.
The only thing that my mind assimilated was that the transplant may no longer be possible due to high antibodies from the previous transplant. My first kidney transplant with my sister as a donor was rejected as a result of not taking my medicines regularly as prescribed. I took my immunosuppressive medicines sparingly due to financial constraints following the overnight collapse of my father’s multi-crore business.
Already depressed, my dad took his own life, unable to bear the ‘donor rejection’, thus putting an end to his agony.
|I was a distant shadow of my former self, unrecognizable, tired, broken in spirit, and clueless about what was happening. The thought of resuming regular dialysis sent shivers down my spine. I just wanted to live a normal life.
|But remembering my Dad’s gentle coaxing, I settled down to dialysis and a vastly inconsequential lifestyle in suburban Kandivli.
My profile status read thus:
– Deaf due to an overdose of antibiotics.
– Eternal dialysis needing perpetual funding
– Single, battling my feelings of despair, and for some time, the world outside did not exist.
Opportunity knocked at my door when I was invited in 2007 to be part of the Kidney Warriors Foundation as a Board Member and Treasurer. I helped in formulating plans for direct patient impact programs. We identified under-serviced patients across the country who received small amounts. Our work created confidence to manage health with hope, and we were rewarded with gratitude. It was very satisfying work indeed. Handling another portfolio, Social Media & Research, I could help in making timely decisions to direct changes needed for the patient community welfare.
During the COVID-19 pandemic, my first tweet caught the government’s attention. The fear of COVID-19 resulted in dialysis centres shutting down all across the country. KWF’s team responded to distress messages from patients who were left without dialysis. We reached out to the Prime Minister, Health Ministry, and all state Chief Ministers and got immediate help to overcome the impasse. Special COVID-19 dialysis units were set up overnight to ensure patients received their treatment since patients’ survival depended on timely dialysis.
Our team worked innovatively to reach medicines to post-transplant patients. When movement was restricted, and only essential items could be transported, we took the help of vegetables and milk delivery vendors to deliver medicines to the remotest areas. Volunteers assisted with medicines and money, as well as by offering an empathetic ear.
Eighteen long years on dialysis have left me with weak bones. I have had two major surgeries in a span of six months. I hope to recover and get back on my feet soon. Yet, dialysis has given me the chance to live with CKD. It has given me the opportunity to be of help to my kidney community. Having been through a failed transplant and years of dialysis, I tend to understand the unspoken pain of patients. That is why I feel honored to be part of the beautiful organization Kidney Warriors Foundation.
Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.