“Good Morning Yamini Sister,where is the bed for Jyoti Godre?”,I asked the sister- in-charge in the dialysis room while the wheelchair boy rolled my mother upto the weighing machine.
“Today it is unit 3, Bed no. 12”, Yamini sister checked the bed number in the register on the table and replied with her trademark smile.
I sat outside in the waiting area with my father, along with attendants of other patients. The attendants were mostly wives/husbands of the patients. When you are a caretaker for a family member suffering from renal failure and on dialysis, the only social circle you would have would be the attendants of the patients at the dialysis unit. The long waiting hours would turn out to be a good knowledge sharing time as everyone would discuss the progress of their patients, their diet plans, the creatinine values, tests, vaccinations etc.
It had been a fortnight since we arrived in Chennai and mum started undergoing dialysis at Apollo Hospitals at Greams Road. We had come all the way from Nagpur to get a second opinion for mum’s deteriorating health after being on dialysis for four months.
When she was diagnosed with end stage kidney failure, our entire world came crashing down. As mum’s creatinine levels had become too high, her condition was worsening day by day. She could barely eat half a chapati the entire day as she would vomit everything that she ate. She had lost 20 kg in two months and standing for a single minute had become an impossible task for her. She had swelling all over her face and legs. Our nephrologist suggested starting dialysis immediately, but like many others we too thought that before starting dialysis we should try alternate medicines and therapies. Nothing worked. The disease had progressed beyond recovery through medicines. We started dialysis first through a catherer in the neck and then via a fitsula.
It was painful to see my mother hung up to the dialysis machine for five hours every alternate day. Every dialysis day she would face some or the other issue; some days she she would faint, her blood pressure would fluctuate a lot and many other side effects of dialysis. Though most of the other people were able to lead a normal life being on dialysis, somehow mum’s body wasnt very receptive. Each dialysis made us realize she is being gifted a new day of life after each session however painful it may be.
Mum on dialysis
Our doctor had already asked us to prepare for kidney transplant and search for a suitable donor within the family. None of mum’s siblings were suitable donors as they had their own medical issues. My father was a matching blood group, but since he was hypertensive himself he was not considered as an ideal donor. In the meanwhile, we continued dialysis but a time came when mum’s haemoglobin levels went really low and she wasn’t even able to speak one complete word and had to undergo blood tranfusion every fortnight. That’s when we decided to take her to Chennai.
Seeing mum suffer so badly and the way we were running out of options, the thought of me being the donor crossed my mind. I wanted mum to live a good and healthy life devoid of this daily suffering. I was working in an IT MNC as a software developer at Pune. I applied for leave of absence and we left for Chennai and started dialysis at Apollo. Her Hb levels improved after being given high dose iron injections.
One evening, when we came back from hospital after another session of dialysis she was telling how she feels completely drained out on the dialysis days.
“Mummy. Don’t worry, soon we would get you out of this. I would be donating the kidney to you and then you would be dialysis-free and you would be able to live a normal life again .” I tried to assure her.
“No beta. I will never accept this decision of my children. How can I endanger your life for myself. I will never be able to forgive myself for even thinking about it. I would rather bear the pain of dialysis and wait for cadaver donor than giving you any kind of trouble.”
“Mummy but I really want you to live longer with us. You know that dialysis is not working out for you. It has to be a long term better solution. You need a kidney transplant. Every dialysis you face so many problems. Entire day of dialysis you are in pain and till the time you recover the next dialysis session comes. There is not point in unnecessarily suffering when there is a better option avilable.”
“Beta. That option may be the best in the world but it should be acceptable to my heart which I do not think it would ever be. So please do not ever think of donating your kidney to me.”
Of course mum was worried about me. I spoke to our nephrologist and he suggested it would be a good option as being her daughter I would be a good match and our blood groups also matched.The doctor assured mum too that I would be alright and post surgery I would be back to my normal routine within 3-4 weeks.
It was a tough task to convince mum. Dad was kind of convinced considering the situation. My mum worried that me being a 26 year old, having a long life ahead of me, how could she put me in danger. More importantly she was worried that no guy would marry me after knowing that I have only one kidney and I would be looked down-upon in the marriage market. This became her most important justification for not accepting my donation.
I tried telling her that if the society thinks like this then that is their immaturity and lack of understanding and I wouldn’t marry a guy who felt that it was my shortcoming to have one kidney post donation. I hated our society for it, because that was the reason my mum wasn’t ready to accept my donation and she was choosing to suffer.
After convincing her for weeks, she did agree. I started undergoing a series of donor evaluation tests, and I was found fit to donate. Final HLA matching was done, and a date was tentatively decided for surgery in second week of December 2016 after we get approval from government commitee.
My mum seemed to have agreed half-heartedly and just two days before the scheduled surgery she told the doctor that she is unwilling to accept my donation as she cannot harm her daughter.
It was a heartbreak for me as a I was really hopeful of her getting the transplant soon and becoming healthy. I felt helpless as we were again in a deadlock situation and there seemed to be no option then to wait for 2-3 years for a cadaver.
After a week more of dialysis the doctors at Apollo suggested to reconsider Dad as a prospective donor looking at the situation and we went ahead with his tests. All his tests came out fine as well and we went ahead and found he was a good match. Finally the transplant was performed on 17th Jan 2017 and both mum and dad had a longer recovery time post surgery. As of date they both are doing well and I pray to God that they live fuller and healthier life in years to come.
My father in hospital
The whole experience was draining – both mentally and financially. It is definitely stressful to the caretakers as well as patients to stick to the dialysis timings and routine. All the savings were spent in the treatment. However,we are grateful to the doctors and the staff at Apollo Hospitals Chennai and Shravan Hospital Nagpur who have been genuinely supportive all throughout. In this entire journey Dr.K.C.Prakash from Apollo hospital has been the God for us under whose guidance and treatment we all had the hope to see mum healthy.
First time out of the Hospital
As now I have a first hand experience of the desperation to find an organ for your suffering loved one, I realize the importance of spreading awareness about organ donation and have pledged to be an organ donor and encouraging others too for the same.
By God’s grace my dad was able to donate to my mom, but there are many others patients on dialysis who are left waiting for a cadaver organ and years of suffering. When mum refused to accept my kidney donation, the fear of her dying without a transplant haunted us. I believe her argument of what society would think about me if I donate would not hold weight if people are more aware of the situation of organ donation. The misconceptions and opinions related to organ donation whether live or cadaver would be overturned when people accept the fact that it gives a new life to an ailing person. They should also understand that a team of doctors and professionals is there to support them through the process.
Papa and Mummy Post-Transplant
Also in most cases of living donations in India, we see mostly it is women who are the donors. In our case my father became the saviour for the family.
So many of us climbing the corporate ladders often feel that our work is not directly impacting the society and we want to do our bit to give it back to society, and we often do not find a way to do so. Spreading awareness on organ donation is a wonderful way of fulfilling this aspiration as it is the ultimate gift -“the gift of life”. It saves so many lives, and it’s is free of cost.
Apeksha is a 27 year old User Interface developer by profession working in an IT multinational firm in Bangalore. She is amused by the uncertainties in life outside the cubicle, and likes to write poems and articles related to life and human nature.