Staying resilient in the face of adversity

Pragati Saxena, 43, from New Delhi, India, shares how her unsuccessful kidney transplant has dramatically affected her daily life. Now dependent on dialysis, she explains the problems she faces as a kidney patient during the COVID-19 pandemic in India.

Since February 2015, I have been a kidney patient on hemodialysis and I am suffering from hypertension, hypothyroidism, hyperparathyroidism, and diabetes type 2.

My story began in November 2012 when I had vasculitis [Editor’s note: an inflammation of the blood vessels], followed by a seizure in 2014. Despite having no family history of kidney disease, in just eight months, my kidneys failed due to IgA nephropathy.  

In April 2016, my mother donated her kidney to me, and I underwent a transplant. I remained in the hospital for two-and-a-half months due to complications. Unfortunately, the transplanted kidney lasted for only a few months as immunosuppressant drugs did not work and 50% of the transplanted kidney got damaged.  

After the transplant, I had seven plasmapheresis [Editor’s note: also known as therapeutic plasma exchange (TPE), it is a nonsurgical therapy that removes and replaces a patient’s blood plasma] followed by intravenous immune globulin (IVIG) [Editor’s note: a therapy treatment for patients with antibody deficiencies]. I underwent five kidney biopsies (one on the native kidney and four biopsies on the transplanted one).  Finally, my transplanted kidney failed due to microangiopathy, a complication of kidney transplantation that often causes kidney failure [Editor’s note: Microangiopath can damage the kidneys due to the formation of microscopic blood clots in capillaries and small arteries].

My nephrologist and urologist were uncertain whether it was tacrolimus toxicity [Editor’s note: commonly called Acute Kidney Failure] or kidney rejection. Initially, the kidney performed well and gave a good urine output. The flow rate slowly increased from 800 ml to 1200 ml and then gradually increased to 1500/2000/3800 ml. 

During this period, I accumulated 15 kg of fluid overload. Due to this accumulation, it was extremely challenging and tiring to carry out even the most basic routine and day-to-day tasks. Slowly and steadily, the nephrologist tried to remove the 15 kgs of fluid that had accumulated inside my body. Several units of blood were transfused as my hemoglobin levels dropped.

After the initial phase in which the transplanted kidney seemed to work well, in September 2016, the urine output started declining slowly and decreasing to 2500/2000/1500 ml until it reached 800/400 ml to finally zero urine output. 

During my hospitalization in June 2016, one biopsy of the transplanted kidney was performed incorrectly due to a doctor’s negligence. I had internal bleeding coming from the kidney. The urologist suggested that it would stop on its own. I was again bedridden for ten days, and I became seriously ill. The urine turned red, and I had to take painkillers and antibiotics. 

The news that the transplanted kidney had failed came as a shock to me and was difficult to accept. Since January, I have been on hemodialysis three times a week.

I was hospitalized many times for pleural effusion [Editor’s note: Pleural effusion occurs when fluid builds up in the space between the lung and the chest wall] in the lungs and the stomach, tuberculosis, fistuloplasty [Editor’s note: a way of relieving a blockage in the arteriovenous fistula. This allows access for dialysis without having an operation] and pneumonia.

During the first wave of COVID-19, I was hospitalized with a permcath [Editor’s note: type of catheter used for short-term dialysis] infection. An antibiotic reacted improperly, resulting in cardiac arrest. I was reanimated and immediately transferred to the ICU, where I was put on a ventilator. I recovered within three days. That same year, I also underwent a brachio-fistula procedure on my left hand, and a stent was placed in a vein that was too narrow.

In June 2022, I had COVID-19 which led to an interruption of the monitoring of the cadaveric kidney. The second wave of COVID-19 was more severe than the first. We had to wear face protection and two masks. I feel fortunate to have survived these difficult times. I even urged the Government of India to give COVID vaccine shots to dialysis patients on a priority basis as we were the most vulnerable population when vaccination was given only to the 60+-year-old population.

Currently, I am facing access issues to my veins, which are needed for the dialysis procedure. My left and right chest veins are blocked, and I must take a “blood thinner” medicine.

Dialysis is a lifesaving treatment that I must continue. I cannot miss a single session. I had to arrange personal transport and commute 30 km (about 18.64 mi) to the hospital, even during the complete lockdown.

I am ready to accept the challenges that lie ahead. My parents got separated in the early eighties. I am an only child and single. Throughout all this time, my maternal family always supported me. 

Chronic kidney disease is an invisible disease, but it has a profound effect on your daily life.

People with kidney failure who are dependent on dialysis, and all patients who face difficulties with transplantation, should be included in the Disability Act and be entitled to a disability pension.

I would like to call on the scientific community to find solutions for hemodialysis and kidney failure patients. I also believe strongly in the importance of raising awareness about organ donation, whether it is a kidney transplant from a living or deceased donor. I believe the best way to go through life is to live in the moment and forget about the past or the problems that may arise. It is important to take things one step at a time, believe in yourself, and keep a positive mindset.

To learn more here about Pragati and her experience in raising awareness about kidney disease: