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Submitted by Jobanputra on 9 January 2020
A profile pic of a young woman who is a CKD warrior

Sejal Jobanputra, 39 from Mumbai has been on dialysis for the last 13 years after her transplant failed. Strong antibiotics also made her deaf. But she has been fighting CKD (Chronic Kidney Disease), pain and depression all these years like a true fighter.

Please tell us a bit about your condition

I am suffering from kidney failure and I have been on dialysis for the past 13 years. I have also been deaf for last 12 years.

When were you diagnosed?

I was diagnosed in 2003

What were the early symptoms?

There were no early symptoms till the time when I faced complete renal failure.

Is there a history of CKD in your family?

No

Please describe your experience of managing the condition?

In 2003, as soon as I was detected with CKD,my sister donated her kidney to me. We had a transplant at Breach Candy hospital in Mumbai. Medicines were very expensive to prevent rejection of transplant then. Very soon we ran out of funds and secretly I started skipping my medicines prescribed during my transplant to avoid putting a burden on my parents. This was a mistake and it eventually led to my renal failure in 5 years. In end 2007, I was back on dialysis and it has been 13 years now. Initially, getting a fistula for dialysis was tough due to irregular BP and thin veins. Hence I had a neckline for dialysis which would lead to infections. Large doses of antibiotic Amnikacin to deal with regular infections left me completely and irreversibly deaf. No hearing aids could also help.

PatientsEngage Note: We spoke to a Kidney transplant doctor who said that Amnikacin is not the first line of treatment for any infection. A drug sensitivity test is always done to make sure that patient is not overly sensitive or resistant. Amikacin is typically used if patient is resistant to all other drugs.

What medications are you on?

As for now I'm on dialysis 3 times a week. I have to follow fluid intake restrictions. And medicines prescribed for me are omez, calcium, protein, d3 supplements, ass dialysis filters away all minerals and protein.

Read also: I had a Kidney Transplant

Were there any side-effects of the medicines?

None that I know of. But I can say my deafness is 100% due to amnikacin antibiotic.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

There are only 2 ways to survive CKD: Transplant or dialysis. Initially it is very difficult to accept or even understand the situation. Transplant does not really give you a normal life but as near to normal with life long expensive medicines. Dialysis is a life long process where toxins and waste are removed using a dialysis machine. Fluid intake restrictions, keeping potassium in control are some challenges besides bearing the pain of needles. 4 hours, 3 times a week tied to a machine is painful.

Besides it gets tough to maintain work balance.. That too if one is in a position to work. Dialysis is harsh. Many aren't able to take up jobs or earn a living. DEAFNESS - can also be very depressing. Honestly for me, deafness is a huge challenge.. suddenly one day you can't hear. Cut out of all conversations around you. Took me two to three years to accept deafness where even hearing aids would not help me. All I can say is friends, don't give up. There may be times of hopelessness, depression and pain. But don't give up. Find a purpose. Make goals. Live to achieve those goals.

Was there any effect on your mental makeup? How did you deal with it?

When my native kidneys failed, I had my family and my boyfriend by my side. My sister donated her kidney. That phase was smooth. But when my transplanted kidney failed, we were going through very difficult times financially. My boyfriend left me. I was heart broken, was back on dialysis and there was also this sudden deafness. I also lost my parents around the same time. This led to a total mental breakdown.  I've been to the edge..suicidal.. Lost.. Broke.. So yes it did affect me for a long time. Things changed slowly. I am mentally stronger now.

What kind of specialists do you consult and how often?

I consult my Nephrologist once every month.

Are there myths regarding CKD that need to be busted?

There are lots of advertisements on cure for CKD through Ayurveda, homeopathy. But actually nothing can cure CKD . Only options are a Transplant or Dialysis. We have lost many friends who have stopped dialysis in hope of a cure through Ayurveda. Please don't fall for it.

What are the least understood aspects of CKD?

Psychological. CKD affects us mentally. People around us may not even know what we are going through internally.

Did you see a counsellor for support? Were you offered counselling by doctor?

No I haven't seen a counsellor and that has been a huge mistake I made. Maybe seeking help during my rough patch would have helped me deal with depression sooner than later.

Have you had to make some changes to your lifestyle because of your condition?

Yes. I’m not able to do a conventional job. Deafness and dialysis make it difficult.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

Have tried Ayurveda and homeopathy. It did not help me at all.

How has your family supported you?

I have received emotional support from my immediate family. On dialysis days, I am too tired to even make a cup of tea. My sister and her husband make sure I eat healthy food and send me home cooked tiffins on my dialysis days.

How have you reached out to other people with CKD? Please share your experiences with them.

We are a huge CKD support group on FB by the name of kidney warriors. Sharing our experiences, day to day struggles, encouraging one another...Guiding them in ways I can for lives on dialysis.

Is there any personal motivation that you would like to share with us?

I would only want to say CKD is not the end of life. Find a purpose. Live for it.