My Sister's Kidney Saved My Life

Hemali Ajmera (55) was diagnosed with Chronic Kidney Disease in 2019. Her sister's kidney donation saved her life. On February 6, 2024, they completed one healthy year post-transplant. Hemali shares her experience of navigating the anxiety and her journey to being an organ donation advocate. Read her sister Vaishali's perspective here.

Hemali, when were you diagnosed? What were the early symptoms?

The red flags started showing up in 2016. I attributed my frequent bouts of illness and fevers to reasons such as tiredness, over-exertion, too many commitments, etc. I did not bother to do anything about them. In December 2018, tests conducted by my doctor showed high creatine levels. I visited a nephrologist and he gave me some medication and asked me to come for a follow-up in 2 months. I felt fine after that, with no fevers and was busy with other things, so I did not go to the doctor. 

What made you go back to the doctor? How did the diagnosis come about?

In June 2019, I was visiting my parents and Vaishali in Mumbai when I started experiencing panic attacks, sweating and sleepless nights. My blood pressure was sky-high. I had to be admitted to the ICU to stabilise it. In the hospital, tests to find the cause for the high BP revealed that my kidneys were failing. There are five stages of kidney failure, and I was diagnosed with Stage 3 Chronic Kidney Failure (CKD). I was told that this condition was irreversible and there was no cure for it; I could only manage and control it over time. However, I would eventually need lifelong dialysis or a kidney transplant. 

How did you control the BP? Did you have diabetes?

I was prescribed medication and a strict dietary regimen. From 2019-2022, I managed the BP with medication. I did not have any history of diabetes or have any diabetes post the diagnosis. The strict diet automatically controlled my sugar.

What was your reaction to the diagnosis? 

The diagnosis left me feeling depressed and heartbroken. I am a trained nutritionist. I could not understand how I reached this stage despite leading a healthy lifestyle. I could not make peace with it. In desperation, I tried all kinds of alternative therapies suggested by different people such as ayurveda, homoeopathy, naturopathy and some terrible diets that made me lose weight. It was a total mess. Nothing helped me and my health kept getting worse.

In early 2021, my husband got an undiagnosed chest infection that remained unresolved till November 2021. The stress of his illness made my situation worse. To top it, I had not seen my kids based in Canada for five years due to the Covid pandemic . My husband and I felt emotionally and physically drained, and we went to visit them in Dec 202. Unfortunately, I contracted a bad bout of Covid-19 there and was down for three weeks. Covid shut down my kidneys and when we came back to India in March 2022, my creatine had shot up from 4.1 in December 2021 to a high of 8 in March 2022. 

What happened next? 

I started getting classic symptoms of toxicity such as nausea, vomiting, breathlessness, and swelling in my feet. The doctor told me that I had to go on dialysis immediately. However, my body did not respond well to dialysis. My BP and blood glucose were fluctuating a lot and I had perpetual swelling on my left hand where the needles were inserted. I was on the precipice of a coma twice during dialysis. The doctor felt I could not sustain dialysis for a very long time in such a condition and would need a kidney transplant at the earliest. We decided to register for a cadaver donation. I was told I would get a kidney in a year or so hopefully after I registered. 

How was this process?

At this point, we hit a roadblock. I needed a domicile certificate to register for a cadaver donation. The Gujarat govt requires an applicant to be a resident of the state for at least ten years. Despite living in Gujarat for the past twelve years and being a taxpayer in the state, I was not eligible for a domicile certificate as I am a Canadian citizen.

We wrote to various officials and ministers explaining my dire need for a domicile certificate but got no response. My husband is a lawyer and we decided to fight a case in the Gujarat High Court in July 2022 challenging the need for a domicile certificate for registration for cadaver transplant for anyone in the country. Since we were uncertain about the time this case would take to conclude, we simultaneously filed a PIL about this matter in the Supreme Court. 

See below for an update on the legal battle.

How was your health during this legal battle?

While all this was going on, my health took a turn for the worse. I realised I could not wait for the law to change or wait for a cadaver donation even if the law changed. The only option open to me at this point was to get a live organ donor from my immediate family.

What were your thoughts on taking a kidney from your younger sister?

I was hopeful that Vaishali would say yes but I did not want to pressure her into making such a difficult decision. Maybe my desperation showed and it felt like indirect pressure on her. I don’t know. I had to put up a brave front saying I would accept your final decision, whether a yes or a no, but I was really hoping that she would agree so that I could have a chance at living again. If she had said no, all doors would be closed for me. Our youngest sister has young kids and my daughter is at the start of her life and yet to have children. I was not comfortable with them donating. Plus, my sister is a US citizen and my daughter is a Canadian national. This would have complicated matters further.

However, I was prepared for Vaishali’s refusal as well. It was her decision. I had accepted my situation in life and was prepared for death. 

What are the procedures before the surgery?

Live donor transplant is a complex process with a lot of procedures and documentation for both the donor and the receiver. First, the two have to match genetically and there are medical tests. Second, psychological tests are conducted to make sure there is no coercion from the family or no money exchange involved. There are further psychological tests to see if both are mentally ready to undergo this life-changing surgery. Once the medical tests and psychological evaluations are complete, the hospital ethics committee interviews all family members separately to rule out coercion. When the hospital ethics committee gives a green light, the state ethics committee has to give a sign-off on the donation for the transplant to take place.

What is the pre-surgery prep from a medical standpoint?

I started dialysis in April 2022 and my nephrologist had suggested I register for cadaver donation in May. The process began in June 2022 with gene mapping, blood matching and tissue matching tests called the HLA Typing and Single Antigen tests. These tests record your kidney profile and are used to determine a match in case a cadaver kidney becomes available for transplant.

By September 2022, I had opted for a live transplant. Both Vaishali and I had to undergo a battery of tests with mine being more extensive since I was the recipient. These include tests for the kidney and all vital organs such as the heart, liver, abdomen, and lungs. The tests also screen for other diseases and medical conditions and for blood and genetic immune system markers. Every month I underwent regular blood and urine tests MRIs and CT scans as the nephrologist deemed necessary. 

Vaishali and I did not have matching blood groups. I am A+ and she is B+ so I had to go through a process called plasmapheresis where they remove the A+ antigen in my blood and replace it with B+ antigen so that my body accepts her kidney. It is like dialysis and goes on for 4-5 hours. I had to go through 5 cycles of plasmapheresis as the antigen has to reach a certain level before a new kidney is transplanted. The last cycle was done a day before the transplant surgery. 

Once the date for the surgery is decided, the prep starts a month before the actual date of surgery. In my case, we started on Jan 2, 2023. I was given an anti-rejection injection called Rituximab along with other medications. I was admitted to the ICU for a day and medications were injected slowly into my body throughout the day. These drugs lower your body’s immunity to a great extent so that the recipient’s body does not reject the foreign organ, i.e. the new kidney. Once you take this injection, you are more or less in home isolation due to low immunity and also have to be careful about your diet and not contracting any infection. The same precautions that come into play post-transplant are followed a month before the transplant. 

The psychological evaluation of the donor and recipient is conducted by a certified psychiatrist. Pre-transplant, the nephrologist and his team explain the whole process to the donor and recipient in great detail with the benefits and risks. Both are shown pictures and video clips and you are encouraged to talk to other patients. This entire meeting is recorded and consent for the surgery is taken. This process is now very well established. The nephrologist ensures that both the parties are mentally prepared and in the right frame of mind to undergo the whole ordeal fully aware of everything before giving consent to the surgery.

We started the process in September 2022 and I had the surgery on February 6, 2023. 

How did you cope with the stress of your illness and the uncertainty regarding the donation?

I carried out my daily routine. I had reached a point where I knew I might not survive. When you are in my position, you realise that resistance is not helping. I surrendered to my situation. I told my husband that even if I don’t survive, please continue the legal fight for other organ failure patients so that those who are suffering do not have to face the same issues and hurdles as us. That thought kept me going.

I read a lot during this period. While on dialysis, I wrote a fiction novel which was published in September 2022. I did a lot of meditation. I also researched extensively about CKD and did legal research on the organ donation laws to help the lawyers fighting my case. I looked at laws in different states of India as well as organ donation laws across the world. All these activities kept my mind active and busy. 

What were your feelings going into surgery? 

Going in, I was very scared, not about my survival, but for my sister. Successful outcomes are 80%. What if after Vaishali’s sacrifice, my body rejected the new kidney? Very honestly, the meditation and acceptance of my condition led me to a state where I was very calm about my destiny. I knew I had tried my best and had surrendered to God. I still have that state of mind. One year has passed but it’s like a hanging sword as rejection can happen anytime.

What did you feel once you were out of surgery?

I was in a lot of pain. I was in a special renal ICU for ten days which is an isolation unit with a sterilised environment. Only one family member can meet you for ten minutes once a day wearing a special suit. There are lots of tubes attached to the abdomen and you can’t eat for the first 2-3 days. You have to drink plenty of water, at least 4-5 litres per day, to keep your kidneys hydrated. The steroids and other copious amounts of medications give you sleepless nights and make you groggy.

The isolation ICU had three other transplant patients like me. They infused in me a sense of humility. One lady had very young children, another was a 24-year-old man who had been married for only a year. We celebrated his anniversary in the ICU. Looking at their positive spirit I was grateful for the full life I had lived so far. They were at the start of theirs and were bearing their condition with so much cheer and dignity. I felt I had no right to wallow in self-pity and should look forward to the future. 

Once I was home, it was tough as I was in complete isolation, confined to one room. I could not step out or have anyone in the room with me. I did not have access to my mobile phone either to give me time to rest and to reduce radiation exposure. I learnt to live with myself. This was a period of great contemplation and reflection about my behaviour, relationships, priorities, etc. In hindsight, this introspection was necessary. A lot of things changed in me after that.

I now have a lot of appreciation for the smallest things we take for granted such as breathing which was so difficult when I battled pneumonia in July 2023. The main thing I learnt to appreciate is water. When you have CKD and are on dialysis, you are restricted to only one to one and a half litres in a day which includes liquids such as tea, buttermilk, etc. I am based in Ahmedabad and summers here are very hot. You are dying to drink cool liquids but are only allowed to suck on ice cubes. We take our small freedoms such as mobility, snacking, enjoying coffee or drinks, etc. for granted, appreciating them only when we lose them. I have a more mindful way of living now. My ordeal has given me a more positive outlook, greater tolerance, and more compassion for others.

I now feel good after one year of the transplant. I face life one day at a time and take nothing for granted. I take a lot of basic precautions such as masking, sanitizing my hands constantly, not eating out, etc. They are routine by now. I have to be careful with sugar and fats. I am currently diabetic due to the steroids but it will hopefully go away once the heavy medication tapers off.

Does the hospital provide counselling services or help in dealing with the disease and transplants?

The hospital does not provide any emotional support or counselling services. They have counsellors but you have to make separate appointments. They do not offer it to you as part of the transplant package. The doctors are extremely supportive and explain everything to you very patiently. Their team is also very responsive. However, they have a huge workload and can’t be there to help you navigate other non-medical issues. The hospital has a transplant coordinator but he/she is mainly a document collector. You are left to navigate everything else on your own. 

What are your thoughts on completing a year post-transplant?

The bottom line for me is the fact that I am alive. Nothing else matters. That is the greatest gift. I believe that everything bad happens for a good reason. Maybe I had to go through this experience to find my calling and help people in need. Now I have a clear vision of my path. 

I am doing my best working on different projects to further the cause of organ donation. I am part of the Rotary Club for Organ Donation and have compiled a book with detailed information on the subject. I am also working on a chatbot that will be placed in hospital lobbies. People can access information on organ donation through a QR code. I have made it my life mission to help the cause of organ donation.

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