For past four years, life hasn’t been a walk in the park for the entire family as even the normal activity of walking leaves Asra gasping for breath. She requires support for almost all day to day activities. The family has to take her to the hospital every eight days to get the fluid drained from her abdomen through a needle. Even though she is at home for some time now, there isn’t a wide difference between the hospital bills and that procured at home. Frequent hospital visits and expensive medicines continue to put financial stress on the family.
“Her weekly healthcare cost is around Rs.10, 000. In last four year, we have spent a total of Rs. 40-45 lacs on her treatment”, said Mohammed Azizuddin, Asra’s brother who is currently in his final year of B.com.
Calamity makes an unannounced visit
It all started when Asra was diagnosed with jaundice four years back in one of the renowned hospital of Aurangabad. After performing multiple scans, the doctors found her liver to be not in best of the conditions. However, they weren’t able to ascertain the actual cause and went ahead with blood transfusion.
“After blood transfusion, we took Asra home and for over six months, she was fine. But eventually, her condition began to deteriorate. We again took her to the same hospital. This time, she was really in a critical condition and the doctors gave up hope”, recalls her brother.After a firm pause, he adds, “Some doctors are of the opinion that because of that blood transfusion, Asra got autoimmune hepatitis.”
The family then decided to take Asra to Asian Institute of Gastroenterology, Hyderabad. She received treatment there for two years, until her liver continued to get worse.
“We were then advised to take her to Global Hospital in Mumbai. But we didn’t have enough funds for Mumbai. So we were referred to KEM but that also didn’t work out in our favor, until we met Dr. Shrimal in Aurangabad. He has helped us a lot. He has even got donations for Asra in dollars”, recounts her brother.
A fight that she is struggling to win
Everything seems normal with 17-year-old Asra Zaheerunddin Shaikh when you speak to her on phone. Quick with shy giggles and sounding every bit as sprightly as most girls her age -- her voice betrays none of the pain that her now severely damaged liver must be putting her body through. It is not until you see her recent photographs do you realize how blatantly her malady is killing her – or has been for past four years.
Asra was diagnosed with a form of cirrhosis of liver known as autoimmune hepatitis about a year back. It is a chronic disease in which the body's immune system start fighting the liver cells, which ultimately leads to liver failure. Asra, whose liver has been transgressing the parameters of healthy for four years now, probably didn’t comprehend the severity of the condition until her abdomen began to bloat a year back. It was then that her doctors recommended a liver transplant.
With her father being the only breadwinner in a family of six and her condition taking a turn for the worst, they decided to bring her to KEM Hospital (Mumbai) for further treatment. However, having failed to receive an organ offer despite being on a cadaver wait-list for almost eight months, the family decided to consult Dr. Anurag Shrimal, a liver transplant specialist during his routine OPD visit to Aurangabad.
“I first saw Asra around a month back. By that time, she had lost all of the muscle mass and was accumulating lots of fluid in her stomach. It could be seen that due to the liver damage, her body had lost the ability to retain protein. Moreover, over the period, she was lucky to survive multiple bouts of infections caused due to the fluid as, in almost every single episode of this infection, almost 30% of the patients die. After considering all this, we recommended an early transplant to the family. And as she was still waitlisted at KEM for cadaver donation, her mother came forward as live donor”, said Dr. Shrimal, surgeon, Wockhardt hospital (Mumbai).
While Dr. Shrimal and his team at the Wockhardt hospital is ready to go ahead with the transplant, there is one particular roadblock.
“By god’s grace, after carrying out the evaluation, we have found the mother both socially and medically fit to donate a part of her liver to her daughter. We have also received all legal permission required in such transplants. Certain pharmaceutical companies have also come forward to medically adopt the girl post-surgery. Right now, we are only waiting for the family to arrange the funds required to carry out the surgery, which stand at twenty lakhs. Obviously, it is not a small amount and that too for someone who is a welder by profession and supports a family of five. That child has the option of living a healthy and able life for however long god has granted post this transplant. Lack of money is the only thing robbing her of that chance”, stressed Dr. Shrimal.
Seeking a speedy trail
Asra wants to focus on becoming a doctor once all of this gets over. The brave, intelligent girl who harbors an admiration for science treats her disease with the sort of apathy reserved for a chore.
“I am not scared about the surgery. I have been sick for so long that it has now become an annoying routine. I just want to get done with it as soon as possible and move on with my life”, she said during our short telephonic conversation last evening.
And it is exactly what will be evading her if she doesn’t undergo surgery on an urgent time basis. When I asked Dr. Shrimal how long before it becomes absolutely necessary for Asra to receive the transplant, he said, “The idea is we do it at the earliest. The condition at which Asra is — if patients don’t get a transplant within 2-3 months — in 100% of cases, they die. So if we can arrange the funds tomorrow, let’s do it tomorrow.”
A call for help
Despite being struggling financially, the family hasn’t left any stone unturned to ensure complete recovery for their daughter. They have moved across states and cities to procure best possible treatment for Asra – liquidating their savings in the process. Now as it stands, they are in desperate need of financial help as time is running short for Asra and they are nowhere close to putting together 20 lakhs needed for the emergency transplant.
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