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).
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.
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.