Help My Mother Fight AutoImmune Disease and Kidney Failure. | Milaap
Help My Mother Fight AutoImmune Disease and Kidney Failure.
1%
Raised
Rs.21,574
of Rs.20,00,000
8 supporters
  • MG

    Created by

    Megha Gupta
  • RD

    This fundraiser will benefit

    Rajni Devi

    from New Delhi, Delhi

Story

Hi Everyone,

My name is Megha and I am here to raise funds for my mother, Rajni Devi, 57 years old. Whenever I think about my mother, I see a happy, hard working, and loving lady, who is always eager to help others with any kind of work, who is expert at multi-tasking, who loves to feed delicious food to her near and dear ones, and who is the true embodiment of love, care, and faith.

My mother is a brave and strong person. Perhaps, that's why life has served her a battle so hard, that's not only difficult to fight, but also difficult to understand. My mother was diagnosed with a rare autoimmune disorder, known as Ant-GBM Crescentric Glomerulonephritis. This disease only affects 1 in a million people, and research is still going on in different parts of the world to find its cause. This disorder affects patient's kidneys (lungs and heart as well for many patients). 

In early July 2020, my mother started complaining of nausea, tiredness, loss of appetite, sleeplessness, diarrhoea, swelling on face and ankles, etc. We didn't know what was happening. We consulted our family doctor, but he couldn't help her either. 

On July 24th, she started feeling severe breathlessness and was admitted to ICU at St. Stephen's Hospital. Soon after, doctors informed us that something looks off with her kidneys and she needs to receive hemodialysis (HD). Her entire body was swollen up. Her haemoglobin was low at 8.3 and creatinine level was high at 14.11 (normal range is 0.67-1.17). Her antibody report revealed that her circulating autoimmune antibodies were at 99 (pANCA-MPO) and 100 (Anti-GBM), normal range for which is 5-10.

We were hopeful that it were only a matter of a few days and life would be back to normal, once she was out of ICU. Little did we know that it was only the beginning of the ordeal she would have to go through.

My mother didn't have any family history of kidney disease, so we kept waiting for the doctors to inform us what the root cause of the problem was. However, they failed to perform kidney biopsy and start her on the correct course of treatment. They kept changing her treatment, and her dialysis catheter (first at waist and then at neck). She received dialysis every alternate day post her admission, had gone through multiple surgeries for catheter insertion, and other treatment.

After 2 weeks of unsatisfactory treatment and response, we requested for her discharge and got her admitted to Max Hospital, Saket instead because Max Saket is well known for their nephrology department and renal (kidney related) treatment. 

At the time of admission, her weight was around 81 kg (17 kgs more than her actual body weight) due to water retention. After removing extra water from her body through dialysis, her kidney biopsy was done on 12th August 2020, which revealed that we still had hope for her kidney recovery. Her doctor shared with us that she had Goodpasture syndrome, which attacked her kidneys. She was double seropositive for pANCA-MPO and Anti-GBM Antibodies.

In the hope of recovery, doctors discharged her in stable condition and started her on rigorous treatment with immunosuppression medicines, steroids, intravenous chemotherapy (cyclophosphamide), dialysis through permacath (inserted on August 13th), blood transfusions, etc. However, the chances of kidney recovery are usually unknown for double seropositive patients.

After 5 sessions of intravenous chemotherapy, there were no signs of kidney recovery and her urine output was almost negligible. She was having poor blood flow from permacath, which was affecting her dialysis. She was admitted to Max Hospital again in November 2020. She went under more surgeries for creation of an AV fistula in her hand and insertion of Continuous Ambulatory Peritoneal Dialysis (CAPD) catheter (in her stomach cavity). Her repeat antibody report showed that her circulating anti-GBM antibodies were at 24.

After almost a year now, doctors are indicating toward a kidney transplant. Her blood group is A positive (A+) and we don't have a blood match in the family. However, we are clinging to the hope of finding a donor soon so that her kidney transplant can be done, while we continue to do her peritoneal dialysis at home. Recently, she has also started developing cataract in one of her eyes due to the side-effects caused by immunosuppression medicines and cyclophosphamide.

My mother is bravely fighting this disease (and all the side effects) each day with a smile on her face and hope in her heart. My father had to stop going to work so that he can continue helping with her peritoneal dialysis (3 times a day). We have exhausted our resources and have spent around INR 13,00,000 from our savings and insurance to support her treatment.

As you know, the medical insurance in India provides little coverage (mostly INR 3,00,000-4,00,000), which is nowhere even close to cover the expensive treatment required for such rare diseases. That's why, I request for your help and generosity to please come forward to support my cause.

We need INR 20,00,000. more for further treatment and kidney transplant. Please donate however much you can, and share this campaign link with your friends and family, for her life-saving treatment. Any contribution will be of immense help and we will forever be grateful for your contribution. Thank you.

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