New Lease on Life
BY LIMANA SOLAIMAN MRIDHA
When we are stressed, overworked or have projects piling up, self-care is the last thing we think of. When we are young and have sound health, we take certain things for granted, like a good nights sleep or our bodys ability to function properly, even though we neglect routine care. It is easy to forget the importance of self-care and submerge into work and other activities that we tend to prioritise. So, sometimes, our body fails us. Sometimes the organs that keep us alive start failing, and then we seek help. We go to a doctor only to find out that our liver or heart is not functioning properly, or that one of the kidneys, or worse, both kidneys, are not working and needs to be replaced. Sometimes, we lose our vision and may need a new cornea, and even then we may not get our vision back a 100 percent. These are the sad realities many of us have to deal with. But thanks to modern medicine, it is now possible to replace damaged organs, like kidneys, corneas, skin, liver, lungs, heart, etc, to get a new lease on life.
To learn about organ transplantation and the existing facilities and laws in our country, The Weekend Independent talked to some experts and patients who shared the pros and cons of transplant procedures.
Dr ATM Mowladad Chowdhury, professor of urology at Ibrahim Medical College and BIRDEM in Dhaka, said: Organ transplants used to take place at BSMMU and BIRDEM in the 1990s quite regularly, but then it stopped. This is because people started to go around the law and produce counterfeit papers to show that the donor was an immediate relative. The media identified this, and part of the blame for the whole farce fell on the doctors, who were nowhere related to these illegal schemes. When a patient brings a potential donor, we ask for relevant papers, such as national ID, passport, birth certificate, letters from their localitys chairman and police station authenticating the relationship. As a doctor, we have no way of identifying whether they are real or fake. Only police verification can do that. So, after a fellow transplant surgeon was harassed, he gave up transplant operations altogether as he was very disheartened. But he kept on encouraging us to go ahead as our country needs this. We had all stopped for a while. But now we have a regulatory body at BIRDEM (Bangladesh Institute of Research and Rehabilitation in Diabetes, Endocrine and Metabolic Disorders) for this verification and other legal aspects, so we are going ahead with transplants.
In order to get more donors to accommodate the number of transplant patients we have, we need to introduce cadaver donation. When a person is declared brain dead, in developed countries, there are counsellors who would convince the relatives and family members for organ donation. The family would only have claim over the body, but not the organs. That is the law in many countries. If we can do the same, many patients will benefit. When I see a patient suffering, as a doctor I feel compelled to do as much as I can to help them. In England, they have the rule of altruistic donation, which means if a person wants to donate his or her organ to a friend, they can. We have stretched our limited law a little to include extended relatives, but we need to introduce other means to meet the demand of transplant patients. We need awareness on cadaveric transplant as there are religious taboos, as well. People need to understand that religion imposes no ban on organ transplantation. Medina University and Al-Azhar University in Cairo (Egypt) have certified that religion does not forbid organ transplants or cadaver donation. So, we need trained counsellors to motivate families and relatives, and the government should amend the organ transplantation law in such a way that it accommodates our need, added Dr Chowdhury, who specialises in transplant and laparoscopic surgery.
On July 17, the Cabinet approved a draft law that would allow extended family members, like grandparents, grandchildren and first cousins, to donate organs. The existing law, enacted in 1999, allows only parents, spouses, children, siblings and blood-related aunts and uncles to donate. Organs must be taken from a person who is brain-dead but still has a beating heart. Organs that can be transplanted include kidney, liver, bone, eye, heart, lung and tissue. Regarding eye and bone marrow transplant, donors need not be blood relatives. As per the draft Transplantation of Human Organs Act 2017, organ removal and transplants cannot be done without government approval in just any hospital. However, government hospitals with specialised units can do transplant surgery without permission. The law also proposes stricter rules to check organ trafficking and trade.
In a telephone conversation, Nuruddin Al Masud, a kidney transplant patient, told this correspondent: The life of a dialysis patient is unbearable, health wise and expenditure wise. The surgery alone was extremely expensive and post-operative care and the continuous treatment is also expensive. I have to take immunosuppressant drugs so that my body doesnt reject the kidney I have received. I was lucky that my wife was a match, and she immediately agreed to be a donor. We are both doing fine by the grace of the Almighty. But I feel that the government should amend the existing law to help patients like us. There are many who are suffering due to the limitations of our organ transplant law. Also, the expenditure is too much for a low or middle income family.
Dr Hashim Rabbi, assistant professor at the hepatobiliary and pancreatic surgery department of BIRDEM General Hospital, said: Dr Mohammad Ali took training from Australia and in 1998, he established the Department of Hepato-Biliary-Pancreatic Surgery at BIRDEM. Later, the same discipline was introduced by Professor Zulfiker Rahman at BSMMU (Bangabandhu Sheikh Mujib Medical University). I joined BIRDEM in 2001 and I have worked with Dr Ali as well. At first, the students did not know that a liver could be dissected into eight functional parts. They read it in textbooks, but did not know how to do it. So cadaveric liver was dissected to teach the procedure. Then tumour patients were operated on, and later, other procedures such as reconstruction was also introduced. The drainage procedures and proper management of cirrhosis patients was also done.
I trained at Delhi Apollo (hospital) and many others went for masters degree in this discipline. BSMMU now has masters in this subject. Now at BIRDEM, we have an entire bloc for organ transplant. We have developed the infrastructure with all the necessary equipment, such as cell separator, cell saver, liver dialysis machine and MARS (molecular adsorbent recirculating system) to do liver and kidney transplants. We are not experts like India or South Korea, but now we have a team to start. The proposed new law has included extended relatives, so hopefully the scenario will change. We do not have altruistic, exchange or cadaveric donors. We also have a regulatory body now at BIRDEM to verify proof of identity and other legal documents. Another important element in transplantation is indication for surgery _ a specialised team should clear the patient for surgery. One of the biggest drawbacks we have now is our nursing staff. We need specialised nurses and transplant ICU nurses _ one patient needs at least four nurses post-surgery. We are severely understaffed, we need to increase our specialised nursing capacity. We also need many more trained technicians as well. When liver transplants first started in India, we heard that they lost approximately 13 patients. Law should be in place in our country to protect surgeons in case of casualties. Liver transplantation is an expensive procedure and it takes roughly Tk2.5 million (per surgery). Post-surgery treatment expenses should also be considered, it may reach up to Tk25,000 to 30,000. We need to raise awareness among healthcare professionals and patients alike that transplants can improve the quality of life of a patient, Dr Rabbi, who is a liver transplant surgeon, added.
Mohammad Reazul Islam, 42, was diagnosed with liver cirrhosis six years ago. His family was asked to take him home as there was no hope left for him. Desperate, his family took him to Chennai, India, where he received initial treatment. At Apollo Hospital in New Delhi, they informed him that a liver transplant could save his life, but the estimated cost they gave was approximately Rs7.2 million (about Tk9 million). This was out of their reach, but his siblings did not give up. They tried to raise money from all sources, they asked the community for help, but they could not manage to collect the huge amount required. When they came to BIRDEM, they were sent to see Dr Mohammad Ali, who assured them that the surgery was possible here in Bangladesh.
We asked him how much it would cost, since we did not have a lot of money. He told us that if we could manage Tk1 million, the surgery would be possible. My sister broke down in tears. That is the time I realised that we have amazing doctors here in our country who are compassionate and would go the extra mile to help a patient. The surgery was scheduled to take place in 2010, but due to some setbacks, it was done in 2011. Everything went well, and here I am today, a proud father of a 4-year-old daughter. To me, doctors like Mohammad Ali and Hashim Rabbi are saviours. They reassured my family that they would take care of everything and they delivered on their promise, and I owe them my life. Post-surgery care costs about Tk25,000 to 30,000 and there are many hidden expenses you should consider before and after surgery. Now, I need to spend about Tk7,000 to 8,000 per month on medicine, Islam said.
Dr Syed A Hassan, cornea, phaco and LASIK surgeon at Harun Eye Hospital, said: Lack of cornea donation is one of the main setbacks in our country. Cornea donation is not like other organ donations, such as kidney or liver. The cornea is taken (from the eye) of a cadaver, only if the deceased person is registered as a donor or the family agrees to it. Before, the law was such that if a body was not claimed within three hours of death, the family lost claim over the corneas. But the law has changed, now a body can stay unclaimed for up to 24 hours, effectively ending cadaver cornea donation as a cornea needs to be harvested within six hours of death.
Cornea transplant surgery is expensive because we need to bring corneas from the USA which costs about USD500 (per shipment). We do not have to pay for the cornea, but we need to pay for transport costs and evaluation fees. The United States has surplus corneas _ which they are donating to other countries _ because they have a law which ensures cadaver donation. So, we should not use the term import as we get the corneas as donation, we just pay for the transportation and other costs, it is not a business. Then there are the pre- and post-surgery costs. We need to raise awareness so more people become donors, or agree on donating from a deceased family member. There is no religious bar on cornea or organ transplants. People need to know how it can change the quality of life of a person. Vision is a gift and your donation will mean everything to a person and their family. Due to unavailability, the cost of cornea transplantation is quite high in this country, adequate donations would make it affordable for the general people, Dr Hassan added.
Mohammad Mohiuddin Khan, 30, from Jhalakathi, lost sight in his right eye after repeated corneal infections. I had transplant surgery on my right eye in 2012. There is always a chance of infection and rejection. I faced this problem in 2016 and lost vision in that eye again. Then on March 20 this year, I had cornea transplant on my left eye and I am alright now. Dr Hassan is impressed with my recovery and now I have clear vision in my left eye. I am a masters student of economics at Titumir College. I appeared for three exams, but then could not continue my education further. Right now, I am unemployed and looking for someone to help me as no one wants to hire me with my limitations.
Like Khan, there are many others who need cornea transplants, but are unable to do get the operation due to lack of donor corneas. In 1977, medical students established Sandhani National Eye Donation Society. Over the past 40 years, Sandhani has acquired a total of 3,987 corneas, of which only 116 came from voluntary donors, while the rest were collected from unclaimed dead bodies.
Saiful Islam Chowdhury, coordinator at Sandhani International Eye Bank and Sandhani Hospital, said: Of the 3,987 corneas we have collected till now, 3,392 have been grafted. We got training abroad on how to acquire and analyse the quality of corneas. Since 2004, we have been working on capacity building and now we follow the international standard. We have counsellors working in hospitals to convince family members of a deceased person about donating corneas, and so far we have been able to collect a meagre 116 from volunteers. We need to raise awareness on a bigger scale about cornea donation. There are approximately 500,000 people in Bangladesh in need of cornea transplantation and thousands more are joining the rank every year. In order for cornea transplants to be affordable for the general people, we need to increase the number of donations. Anyone can become a donor, we have a donation card which you can fill up and leave with us.
Photos: Courtesy
