‘It was February 2008, I was 32. My husband had just successfully recovered from a life-threatening illness. We were slowly getting back to our feet. And, we had a lovely four year old whom we adored to the core. Meanwhile, I decided to join a nearby gym so I could finally lose that fat which I had gained some years back, during and after my pregnancy. After a couple of months, I was ecstatic to see the readings on the weighing scale. I was losing weight faster than I thought, though I kept thinking at the back of my mind that I was not really that regular at the gym,’ says Jaya Jairam who is armed with an engineering degree and a Post graduation in Finance.
By the end of 2008, Jaya had lost almost 10 kgs of weight, she also developed plantar fasciitis (an inflammation of a thick band of tissue that connects the heel bone to the toes), she started finding it difficult to drive the car at night, her skin was paler and darker, her teeth started looking yellower.
“We were thinking of having a second child and we would spend a lot of time hunting for a bigger house. Around the same time, stomach upsets were becoming frequent, alongwith more and more complications and so were the visits to our family doctor. During one of the many visits, a bit frustrated at my frequently illness, Jairam suggested that the doctor write out a note for a complete checkup package,” added Jaya Jairam.
It was April 21, 2009, Jaya and Jairam’s wedding anniversary which they celebrated at the clinic, getting a complete checkup for Jaya. Jaya reminiscences the experience and added,
“While performing the sonography, the radiologist questioned me, if I was suffering from any kidney problems. I confidently denied any problems. But, it made me extremely suspicious and I couldn’t wait to collect the reports.”
When the report came, Jaya’s creatinine was 3.4, it was elevated while in normal cases the level is below 1 and it was suggesting that Jaya is suffering from kidney ailment.
“I was advised to see a nephrologist. I didn’t inform anyone at home and decided to visit my family doctor who in turn directed me to a nephrologist. When I saw a nephrologist, he had a straight face and he posed a barrage of questions in order to understand my health history. Then, he wrote down a long list of tests that had to be performed,” said Jaya.
The nephrologist suggested Jaya a kidney biopsy that will help get a definitive idea of the type and extent of kidney problem.
“Soon the reports were in my hands, I was diagnosed a chronic kidney disease, which means it is irreversible and there is permanent damage. I and my family couldn’t believe the news. I never suffered from any major illnesses in the past, nor, I had been under any long term treatment. In fact, I had never consumed any drugs whatsoever. I always had led an extremely ordinary life. I kept thinking there was no apparent reason why my kidneys should get damaged. In fact I felt if this was supposed to happen, then, I might have just lived a more carefree life,” added Jaya.
Life After Diagnosis
Jaya was put on salt-free food, meaning she was simply allowed to have boiled vegetables. The salt restrictions had to be imposed to get Sodium under control. Meanwhile, Jaya’s Creatinine was rising alongwith nausea, accompanied by breathlessness symptoms.
“Our new house was ready and it was time to move in. But, it was so ironic… We bought the new house thinking we could expand our family and now all that was out of question,” said Jaya.
Jaya was also put on some lohich helped in management of salts like Calcium, potassium, phosphorus, etc. Jaya, started considering peritoneal dialysis (a type of treatment for kidney failure that uses the lining of your abdomen, or belly, to filter your blood inside your body), around November 2009 and virtually every other day she was beginning to visit the doctors.
Concerned with Jaya’s health, her husband wanted to explore the option of transplant and he wanted to give one of his kidneys.
“His words were “You were there for me when I needed you the most. At such a young age, both of us have been through a lot. We are partners in this. Let’s talk to the doctor about this.”
Jaya was accompanied with Jairam and her father during the next visit to the nephrologist, where the team of doctor’s responded to their query of pre-emptive or living transplant, they said,
“Yes, you could go for a pre-emptive transplant. However it would be better if it is a blood relative.”
Jaya’s father offered to donate immediately, but, since he was a diabetic and on insulin, the doctor advised him against it.
“When we went home trying to digest what doctors told us, my mother called me and said, “One of my kidneys is for you only. Don’t worry. Let’s do this together.” Both my head and heart screamed a big ‘no’. I kept dilly dallying and postponing the decision.” said Jaya.
By December 2009, Jaya’s creatinine had touched 7 and Jaya resisted any kind of dialysis or a fistula which provides convenient access to the circulation in patients with end-stage renal disease. However, Jaya denied that too, reason being that she did not want a lifelong scar and a reminder of all this.
Jaya was then counselled by one of her relatives who had faced a similar situation and the father of the family ended up donating one of his kidneys to the daughter.
“Her parents reached out to my parents and wanted to meet us and talk about our situation. I was amazed to meet the Uncle who had donated. They openly shared their experiences and gave us all the confidence to go through with the transplant. I was feeling good and positive in a long, long time,” said Jaya.
Jaya was also counselled by the Transplant Coordinator of the Transplant hospital.
The Transplant Journey
“Slowly it started to feel that may be a transplant is the right way, and I finally said yes,” added Jaya.
In February 2010, both Jaya and her mother went through various tests for matching the tissue types for the kidney transplant and to make sure that Jaya’s mom and Jaya were fit for the surgery.
“I had stopped going to office altogether. Getting out of bed was a huge effort. My creatinine was now 10 and inching towards 11. I also underwent a minor procedure whereby a catheter was inserted into the jugular vein in my neck. That would be the site for exchange of blood during dialysis. I avoided going out of the house other than to the hospital. Even during visits to the hospital, I would hide the catheter by covering it up with a dupatta,” added Jaya.
Before the transplant, Jaya’s entire family was interviewed by the Authorization Committee, all their statements were videographed.
“My mom, my dad, Jairam and I were all asked questions and each of us explained why we wished to go through with the transplant,” added Jaya.
Jaya was allotted a transplant surgery date for May 2010 and till then she was advised for the dialysis for 2 months. But, Jaya got lucky and her transplant surgery got pushed forward to March 2010.
On the March 19, 2010, finally Jaya got a kidney transplant and the donor was her mother.
“Both of us woke up with a lot of pain. While being wheeled away I remember crossing my mom and asking her if she was fine. She was in great pain and replied with a Hmm…,” said Jaya.
Jaya was discharged after 19 days post her transplant from hospital, while her mother was discharged on the 7th day.
Jaya says, “I finally had a working kidney that was doing its job. I started feeling energetic and fit. I could eat normal food and the only precaution I had to take was that the food had to be hygienic and well cooked.”
Speaking about the cautions that she takes, she added, “I am certain about things like – avoiding crowded places, avoiding eating outside. These are some small precautions to avoid catching infections.”
Jaya resumed her work 3 months later after her transplant. But, last year Jaya left her corporate job and started working for MOHAN foundation, a not-for-profit NGO, promoting the cause of Deceased Organ Donation.
“I am blessed that I had a loved one who was more than willing to donate her organ to save me and that it matched and worked out well. Unfortunately, in India, there are so many, who are not so lucky. The experience of my kidney transplant helped me understand the trauma of those waiting for an organ and the dilemma of taking an organ from a loved one. That’s why I decided to dedicate rest of my life for the cause of Organ Donation,” says Jaya.
It has been 7 years since the transplant and Jaya have been working regularly. Jaya is leading a normal life and so does her mother, she adds,
“My mother is actively busy with her work and routines. She is the most beautiful person and a true Super Woman. She gave birth to me not once, but twice.”