Hello and namaste from India. I am Seema Bali, Our Views, Our Voices advocate sharing my journey here on the powerful NCD Diaries platform as a caregiver to my husband living with chronic kidney disease, hypertension and mental health issues.

So it was In March 2011, while I was recuperating, first my hysterectomy and had just joined back school as I'm an educationist, my husband's health was a matter of concern as he was losing weight big time. He had lost some 17 kgs of weight in two months, he had come down from 87 to 70. He was experiencing loss of appetite and was generally very sleepy used to sleep for 22 hours. So the physician diagnosed it as depression and put him on antidepressants. One round of medication got over, he said, "you can repeat it once again". So the second round also got over.

We went back again, because nothing was improving. He advised that you you should go in for the third round also, because sometimes, you know, it takes time. Okay, the third round also got over. But day by day, the condition was just from bad or just going to worse.

So I just put my foot down on finally I told him "Listen, Doctor, you know, I want to get a full body checkup done and I request you to please prescribe and recommend entire body checkup from blood to scans, whatever you can do". So he also thought that you know, because things are not improving, he also wrote whole lot of tests and X-ray and scans, and he told me, "you can go and get this done".

So, we went for all these tests and all the blood samples and were given the urine checkup and all that everything was given, only one last ultrasound was left and we're supposed to get reports next day, that is after 48 hours. So, we thought let's go for the ultrasound and went there and the radiologist, he took my husband inside and you know, he came out at five minutes and he was telling me "the kidneys have packed up, they are shrunken". And I didn't know what to do.

My legs just turned into jelly, and I just sank into the sofa, and I could not, I mean for that moment of time there was total blackout.

It was like sand slipping out of my hand.

And it was, a tear started rolling down my cheeks, and I had gooseflesh. My husband had just relocated from Dubai and we did not have any medical insurance. I somehow gathered my courage, went home, spoke to some of my friends, and I found out that I need to visit a nephrologist and, take advice from him.

The following day after sending my kids to school, my husband and myself we went to the doctor, we went to the for nephrologist, and the nephrologist being a man of few words, he just threw some big words which were Greek to me, he said "get a fistula made, he'll have to be on dialysis" because he saw the reports and it had to create an in value of an alarming nine.

So, I didn't know what all these terms were. But you know, I said okay, "whatever has to be done, has to be done. So what is the other option? Is there no medication?" I asked the doctor. He said no, there's no medication, the only other option is a transplant. So we will put him on dialysis for alternate dates. Meanwhile, you look out for a donor, potential donor, which has to be a family member.

Anyways, we went for the daycare procedure, got the fistula fixed. I put him on dialysis. When I put him on dialysis, they told me that will take four hours. And I had to wait outside. That's the time I met other caregivers. And that's the time it sank into me that "Listen, you are in a big spot. What is next that you're going to do?"

I started asking people I started, you know, researching about various aspects, and went and spoke to one of the counsellors there in the hospital when dialysis was going on and try to understand the protocol of transplant. And he asked me the family history, who all are there in the family, and he told me that none of your family members can give because my mother in law was 87 years old, my brother in law was some 67 years old and he suffered from hyper tension and diabetes, and my son was 16 years old. He said we do not take a you know, young as young as 16. He has to be beyond 18 to donate a kidney.

So I was stuck. I didn't know what to do.

I came back home. We went for the next dialysis. When I went for the next dialysis again I went to the counsellor and I asked him: "Can I give the kidney?"

He said because you're from a different family, maybe your tissue and blood may not match, but still we can do a swabbing. We can see it'll take some time, we'll try that. But for you to donate the kidney, you will have to get a number of forms and actions were there which I had to fill. And my family had to give consent that they have no objection in me donating the kidney.

I also told him that I've just finished my hysterectomy, he said, we will just transfuse blood, and then we'll get, we'll get the procedure done. Oh, it was heartbreaking.

I came back home, I called my kids, daughter 10 years old, my son just 15, and I told them about what the crisis of the family was. We were into big major health crisis and we have to be together.

My daughter thought it's like any other disease, that her dad will take some medication and all that will be fixed. My son somehow could gauge the situation in a little more serious manner. He knew that we were in soup, but I told him that we'll see what and how we have to come out of this.

Then, what happened was that after the days, when Anand had dialysis, I used to accompany him and take a day off from work. On the day when he did not have dialysis, he used to be at home, and I used to go for work. So it was alternate day dialysis and alternate day work for me. And I must tell you here that you know, the figures of one dialysis was over 3,000 rupees, which was like amounting to 48,000 rupees in a month, and my salary was 50,000.

There was no help available. I did not know which door to knock, and I had to take into my, all our savings.

But, my husband had to quit his job. And it was a rollercoaster ride for me because it was hospital, home, school, kids, shopping essentials, looking after the education of my kids, visit to the bank, take out money, go to the hospital. So it was like a vicious circle I was into.

It was devastating and heartbreaking, but I had full faith and trust in God. And I was waiting that, I'll come out of this, maybe the transplant thing can happen and maybe we'll go ahead with that.

I had to get a lot of paperwork done and we had started the procedure, but miracles do happen. And you know, when finally we received a call, and we were asked to come report to the biotechnology department of the same hospital immediately, we rushed there and there was a queue of potential recipients lined up and getting their tissue and blood matched with brain-dead patient who had multiple organ failure and the family had decided to donate all organs.

A series of tests were performed on all the potential recipients, but imagine who fit the bill? It was my husband's blood group and tissue that matched with the cadaveric donor.

I called my family and my husband's family and quickly we got the act together, we deposited money and he was admitted in the hospital because the doctor said that the procedure has to be done on the same day. When the surgery was done, and his operation was successful, he was off dialysis.

After 10 days of intensive care, he was brought home. I had converted our room into an intensive care unit with, I changed that door and made it a glass door, nobody was allowed to enter. He was not allowed to come out. All the care was taken.

Initially things were okay, a lot of care. I had to be on my toes 24/7 and there were some hiccups. We tried to deal with it. Post operative care is really crucial and critical, and timely mitigation, immunosuppressants. I had no clue what was all this and dietary requirements.

But with all this, though Anand was physically recuperating, he was getting mentally unstable. He used to ask, "Why me? What about my job? How am I going to raise my kids?" And my kids were in the formative years. They did not play like any other kid Because since I was in the hospital, my daughter and son used to cook food. They used to cut their fingers sometimes, sometimes burn their hands. So we had to deal with a lot of things, but in all this, they were learning a life skill. Even at that point of time, I thought, "It's okay, they are learning a life skill, is going to keep them in good stead." And life continued.

But in this journey, I met so many like me, so many who could not even speak up for their condition. So many who lost lives of their dear ones because of lack of medical care, medical insurance, government policies, they were unaware and nothing was in place.

Why, why to go far? Just yesterday, a 25 year old young, promising boy known to me succumbed to post COVID complication, as he could not get dialysis in time. It is heartbreaking to see what a paralysed healthcare system can offer. But, as a caregiver, I have my own challenges and battles. Personally for myself, whenever anybody used to call, everybody used to ask about my husband's health, nobody asked me how I was feeling, what I was going through, what my husband was going through.

It is very difficult to manage the multiple chronic conditions. On one side, one parameter will be within range one day, another day something else will be fluctuating, and vice versa. Things are even unpredictable today, and that hounds me always.

Regular analysis of blood to know kidney function, liver function, blood pressure blood parameters, and take those reports and follow up with the nephrologist to manage the doses of medication, procurement of medicines, especially during COVID times, specific dietary intake, a rigid daily routine.

I feel like a machine who wakes up at a specific time and works by the clock. That's the daily regime. I cannot travel, cannot attend functions. Social Life is highly compromised and it hits the mental well being real hard. But overall efficiency at home and the performance at work gets badly affected.

Nobody signs up for something like this. But when we actually face these kinds of situations, why is there no help? Why is there no awareness? Why can't I be told to knock the door which can help me. I have many questions in my mind. In the next episode, you will hear the ordeal of a mother of 16 year old boy with multiple chronicconditions. She lost her husband to COVID a month ago.

Until then be safe, take care and thank you so much for tuning in to NCD Diaries.