My story and my hope
The main function of the kidney is to remove most of the waste products and the excess water from the body. Helping to produce haemoglobin which is essential to carry oxygen in the body is another of its important functions.
When the kidneys fail and an individual cannot maintain life, it is called End Stage Renal Failure (ESRF). The treatment modalities of ESRF is either Dialysis or Renal Transpant. Dialysis is removal of waste products and excess water from the patient’s body which can be done in two ways.
One method is by connecting a main blood vessel of the body to a machine which removes the waste products from the body and the purified blood is returned to the body through a tubing system. This method is called Haemodialysis. The other method is to remove the waste products from the lining of the abdominal cavity referred to as the peritoneum and this method is thus known as Peritoneal Dialysis. Both these methods have specific complications and limitations and can be uncomfortable and intrusive to the patients.These procedures need to be carried out throughout life a few times a week and it limits the mobility of these patients.
Transplant surgery may be the ideal treatment modality from the quality of life point of view but it too carries many risks and limitations and the patients have to take many precautions through-out life once surgery is performed.
I am a retired Consultant Anaesthetist who underwent kidney transplant surgery four years ago and have come to appreciate the social and economical implications this surgery has on patients and their relatives especially in their day-to-day life.
I realised that these problems pose a challenge for those who have no adequate resources, the means, and the know-how to overcome these problems. This prompted me to speak to over 100 patients attending the post transplant clinic in the Nephrology Unit of the General Hospital Kandy, a majority of whom were from the lower income group. The purpose of this survey is to find out the problems faced by these patients and to identify ways to help them with via Goverment, private organisations or through individuals willing to help.
Following are some of the problems that surfaced during the survey.
The first and most crucial hurdle is finding a kidney for transplantation. It is not finding a kidney but finding a compatible one that is difficult. Ideally a kidney from a blood relation is the best but some patients do not have relatives who could donate or they may not be compatible. As regards compatibility, a donor kidney from a close relative such as a parent or a sibling is the ideal. Yet this carries surgical risks on two members of the same family which can be an additional burden on the family. Sometimes the donors may be friends or unknown people but this is at a huge cost and the financial burden is beyond some patients. Buddhist priests come forward to donate kidneys to fulfil what is called Paramitha which is a kind of donation and a sacrifice they make during their life. However this trend has significantly decreased due to the declining number of Buddhist priests and the increased number of patients seeking transplants.
Another source of donor kidneys are from patients who are on life support, and are thought to be “brain dead” while the rest of the organs remain healthy. This situation is seen for example after road traffic accidents where the patient’s brain is critically injured and permanently damaged.They are kept alive by means of artificial methods in Intensive Care Units. In order to obtain kidneys from such patients a streamlined prearranged programme should be made available between major hospitals.
It would be sensible to develop and maintain a central station – A ‘Kidney Bank’ where there can be clear records of those needing urgent transplants and a list of willing donors. An attempt was made by a dedicated individual to organise such a facility in
I underwent renal transplant surgery four years ago receiving a compatible kidney from my own brother without any financial involvement. Out of 20 or more donors that I tested, my brother was the most compatible donor. Despite his ripe old age and the doubts as to how long the kidney would work it has lasted four and a half years and is serving me well.
My surgery was conducted in Colombo as most of my family members live there. The post-operative period was spent with my brother who lived very close to hospital and I was able to attend the clinic regularly.
At present I am being treated efficiently and promptly when I attend the transplant clinic in Kandy.
My desire is to highlight the socio-economic problems of my fellow transplant patients so that there would be a greater public awareness and support to help the victims of this rapidly spreading deadly disease. the past but it could not succeed due to various obstacles in our administrative system. For cadaver transplants there needs to be a way of coordinating between the major hospitals and the transplant centres when a cadaveric organ is available. A mode for rapid transport of the responsible teams should be made available.
Medical laboratories in major goverment hospitals where renal transplants are carried out have the staff and equipment needed to deal with most of the investigations needed both before and after transplant surgery. A special test called Human Leucocyte Anigen (HLA) essential to find a matching donor is available only at the National Blood Bank in Colombo. This trip to Colombo by the donors as well as the recipient from out stations is expensive and exhausting and may have to be repeated a few times by the recipient with each of the new donors.
*Establish and develop the laboratories in transplant centres like Kandy to carry out advanced tests like HLA etc.
After transplant surgery it is crucial that the patient is followed up very closely by the doctors concerned. They are seen by doctors approximately twice a week during the first three months. This vigilance is important to detect and prevent major complications such as rejection of the new kidney, infections, bleeding or any other complications. When patients from outstations other than Kandy undergo surgery it is not easy nor advisable for them to travel long distances so often to visit clinics.They cannot reach the hospital on time in case of emergencies.
It is also exhausting and expensive and they run the risk of being exposed to infections as most use public transport.Therefore these patients make alternate arrangements to stay close to the hospital. Some fortunately have relatives in close proximity to the hospital and are able to stay with them. Others who cannot find such places are compelled to rent a room or a house nearby. The rental for a house varies from Rs. 5000 to Rs. 20,000 per month. The total cost for house rent plus other expenses such as for food, blood tests, travelling etc add up to a few lakhs of rupees during their stay. Another factor is the uncertainty of the cleanliness and hygienic state of these rented dwellings.
These financial demands are difficult for poor patients and they are obliged to either borrow or sell their belongings, businesses and/or land to find the money. Often they are helped by their relatives, friends and well wishers. A common method they employ to find money is to sell tickets in public places. But I realised that the money they earn in this way is very little. ******** The management of the Kandy hospital with the help of The Kandy Kidney Protection Society is planning to build a ward so that these deserving patients can find accommodation during the immediate post operative period. The foundation stone for this building was laid by the Director of the Kandy hospital on March 10, which is International Kidney Day. This building which is being built close to the hospital will serve as a clean, safe hostel for these patients to stay. It will also provide overnight accommodation for those patients coming for dialysis from distant places. I truly hope this building will come up soon. Until then these patients need financial support.
Some of these patients such as farmers, masons and construction workers, work in environments which expose them to infections. It is a risk for them to continue in that type of environment after transplant surgery and they should try to find employment indoors. I gathered from my study that most of them have secured indoor work and some have commenced their own small scale businesses.The younger patients with the know-how have become computer shop owners or repairers. Those who did indoor jobs such as clerks and teachers continue in their same posts. There are others who depend entirely on their children or parents to look after them.
It would be useful if a self-employment scheme can be organised for
deserving patients.
Patients travelling from distant places like Badulla, Puttalam, Wellawaya, Embilipitiya etc have to start the journey to Kandy in the wee hours of the morning around 4 a.m. It is a long, exhausting journey by public transport. They need to arrive early to complete the blood tests, consult the doctor and obtain their medications during clinic hours which are from 7 a.m. to 2 p.m. It is a tiring process for these patients as they have to return home on the same day. To avoid delays or disappointments some patients arrive the day before and sleep on the cement floors of the corridors of the hospital undergoing many hardships.
**********One important step is to improve and establish Nephrology units in the major outstation hospitals.Appointing Nephrologists and trained staff members too is a necessity. Facilities such as laboratories and drug supplies to these new units is another important requirement. It should be the long term plan and already arrangements are being made to open Nephrology units in most of the major hospitals.
The anti-rejection drugs given to these patients after surgery have to be continued without interruption throughout life. At certain times the drugs do not arrive on time due to the breakdown of the supply line. In such situations it is difficult for the pharmacies to issue the full supply of drugs for one month. When drugs are in short supply the patients have to buy the drugs from private pharmacies, and this is expensive. The price of drugs that need to be taken regularly varies from Rs. 100 to Rs 200 per tablet or even more and these patients need to take about three or two tablets of each of the drugs per day. This is too much of a financial burden for most of the patients.
The solution for this shortage is to regularise the drug supply. At the moment the drug supply is somewhat satisfactory.When the drugs are in short supply arrangement should be made to provide financial assistance for the patients to buy the drugs.
The Goverment has passed legislation to provide financial help to the patients who have undergone transplant surgery. Each of the deserving patients was to receive Rs. 3000 per month but this aid does not reach most of the patients for reasons unknown. It is given by the local Pradeshiya sabha and needs further attention by the Govt. The Social Department too offers some financial assistance but the amount is very small.
It was observed in my survey that males who had transplants got married and had children, but females showed some reluctance to get married. Those who were already married were hesitant to bear children.
********** These patients need counselling and advice by trained counsellors, Obstetricians and Nephrologists.
The other factor that I observed was that these patients are under mental stress as they develop complications, face financial difficulties and some are worried about the uncertainty of their future.
These are some of the problems that I observed when talking to these patients. My interest is to highlight the socio-economic problems faced by patients who have undergone kidney transplant surgery.
The transplant unit of Kandy hospital performs about 75 to 100 transplants per year and the number of patients attending the Nephrology clinics per day is over 100 and four or more clinics are held per week.
Despite the shortcomings in our hospital system, the nursing staff and the doctors in the Nephrology Clinic Kandy are doing an excellent job by attending to the ever-increasing number of patients efficiently. Most patients that I spoke to are very happy and satisfied with the service they receive.