March 12 was World Kidney Day Experiences of a CKD patient

16 March 2020 12:54 am - 0     - {{hitsCtrl.values.hits}}

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As a kidney patient having undergone dialysis over 375 times in private hospitals I noted last year this day passed unnoticed by many. 
I found no such activities conducted for CKD- Chronic Kidney Disease - for patients in our country. Then I was in search of the more information this year and I found that it was not established by the UN Agencies. But two International Groups concerning kidney diseases were responsible for this day. 
The World Kidney Day (WKD) is a joint initiative of two international associations. They are (a) International Society of Nephrology (ISN) founded in 1960 in Brussels in Belgium. I do think that Sri Lanka is represented in the ISN. 
The other organisation was the International Federation of Kidney Foundations (IFKF). There is no IFKF branch in Sri Lanka. Both groups mentioned-above came together decided to initiate the WKD in 2006. Since that year they had given yearly themes for the groups regarding CKD disease and patients.
The Internet gives themes for each year. Perusing these themes and their reports and activities I do personally observe that these days are generally for the prevention of diseases and often limited to awareness programmes.
These two groups had decided that this day would be held on the Second Thursday of March. This year it fell on March 12. 
Further in Sri Lanka, there is a College of Nephrology and I am not aware of the activities conducted by them for our welfare. I do hope that the few Nephrologists together with College of Nephrology do begin to help the patients not only in the cities but in the rural areas who are unable to find proper treatment. They could be pro-patients’ welfare in their dealings.
This WKD is held as a global campaign aiming to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and they are associated with health problems worldwide. 
At present, there are over 850 million kidney patients all over the world. It is stated that one in ten is affected by this deadly disease. I could not find any details how many patients are in our country.

 

"This WKD is held as a global campaign aiming to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and they are associated with health problems worldwide"

 


When I speak of this disease, I did escape the last call from heaven three times. On September 7, 2017, while starting the process of dialysis I had lost consciousness. However, I recovered miraculously because the competent doctors had massaged my body and heart. 
Consequently, I regained consciousness and I was taken to the ICU. 
Later on, I discovered that I have had a Cardiac Arrest which could be fatal.
The second instance was that a month later in October 2017, I had contracted pneumonia and I was hospitalised. I was bedridden from the same sickness over a week unable to walk or talk. I thank the Supreme God for my recovery. Later I heard that a few CKD patients who contacted pneumonia passed away. 
The third time I had a near-death experience was when I was hospitalised in Mid-Jan 2018. 
After that, I had come to stay permanently to a Priests’ Residence within the city at a place closer to the hospitals. After only a year later when I was querying what happened to me during that two weeks in early 2018, I was told by a friendly physician, that I had ‘Hard-Water Syndrome’ that is there was no flow of blood to the brain. 
Since I contacted this fatal disease I was able to publish three books and have written a few articles to foreign and local journals.
I wish to share that there is a fear among the general public that CKD treatment and dialysis could be fatal. I have listened to many patients who come for dialysis and discovered there are in that particular hospital’s patients who have undergone dialysis over 1,000 times. 
They do survive because they have been careful about food, and more especially of taking liquid which has to be limited to 500-600 millilitres per day.
Therefore, when some well-wishers come to see me, they think that it is painful for the exercise of dialogue. It is a long process of waiting over four-hours for dialysis is a long time.  

Sad situations that come to light?

The process of transplanting process of a kidney is also a possibility and hospitals have to verify many aspects suitability of each other’s organs before the donation proper. Which is costly if done in a private hospital but in the government, this facility is available but has to be on the waiting list. It is indeed a costly affair and their agents, brokers, vultures who intervene in finding the donors and exploiting the patients.
Then when the doctors do give the OK to go ahead, the brokers jump on to the situation and increase the deal for the donor and the broker as well. The transplant becomes cheaper only if the relatives are available to donate kidneys to the patient. In this situation of much money is involved in the process of transplant only the rich are capable of going through the process of transplant.  
The poor will not be able to prolong life in this process because of this undue business system that prevails around. When the newspaper advertisements are published they come as undue elements come to fore as ministering angels and forget their religious values of helping the people and organ donations do become a business to earn money? The well-wishers who are religious-minded and value human life do freely donate kidneys to the poor. God will bless them.
Recently 4 or 5 government hospitals in the NCP, the machines that perform the process dialysis had to be stopped unable to repair due to non-availability technicians and probably cheaper machines had been bought due to common ailment of seeking commissions by the political leaders and the officials.

 

"Recently 4 or 5 Government hospitals in the NCP, the machines that perform the process dialysis had to be stopped unable to repair due to non-availability technicians and probably cheaper machines had been bought due to common ailment of seeking commissions by the political leaders and the officials"


This is also due to the lack of infrastructure facilities were not provided. The trained-personnel are needed to conduct dialysis. Once the nursing staff is trained they must be utilised properly and their humanness has to be safeguarded without getting them over-worked especially in private hospitals.
Today the treatment for CKD patients are limited to main cities around the country. But the Task-force appointed by the former government if it functioning still has to see about this need the welfare of the poor who are unable to have proper treatment and availability of technology, technicians to handle repairs not merely in the main centres but the peripheries as well. May be many Nephrologists, technicians, therapists are needed.
I had the fortune to have the use of a certain type of milk-powder which was very beneficial to the renal patients. I used it for three months and then this milk-powder disappeared from the market. I spoke to the Business concern who imported this milk-powder. It was about Rs 1,500.00 which can be used only four days.
My question was why did they stop importing this brand?. They told me that there was a tax of 85% and it was not profitable at all and they had no option but to stop importing. 
I contacted the Senior Secretary in the Health Ministry who said that milk-powder which comes undernutrition section in the Food Ministry. I contacted the Task-Force for the Kidney Disease, up to date they are silent. 
I appeal to the Health Minister and Food Minister to come together and discuss to import this milk-powder from Indonesia. 
If the government is pro-patient renal patients, then they can reduce the tax allow the use of this milk powder cheaply.

The welfare of the CKD Patients

I have no great experience of dialysis in the government hospitals and I can say only of the Private Hospitals. There is overcrowding in the government hospitals and due to this fact they reduce the time of dialysis and it is conducted free of charge which is a boon for the poor patients. 
But on the contrary when the condition of the patients become crucial, that it is needed to have regular dialysis as every other day or three times a week, then government hospitals discourage and only conduct dialysis only for those who do transplanting kidneys.
Another necessity there is a phobia regarding dialysis that it means very many think that dialysis means death. I heard of cases of two relatives in a particular parish where I worked when they were told that they have to undergo and asked to sign the document even before they started the process of dialysis they died most probably due to this fear. 
The WKD process is done properly the media has a function though it is deadly, if careful about food and water, they can live longer. The poor patients needed to be supported by well-to-do persons in society. Proper education of the available resources must be conducted regularly by nutritionists. Again counsellors also can play a part in prolonging the life of patients. 
In this process of dispelling this fear among the patients, it is important to have a counselling process for kidney patients about the nutrition aspect. 
One cannot expect the Nephrologists to come to the wards and do this but they can organise counselling process about various aspects of the sickness to help to mitigate the dangers and extend the life here on earth. 
Let the Volunteers get involve and organise to help the renal patients for their welfare. The patients themselves are unable to move about in organising such activities.
I also do plead that volunteer organisations become operative with the approval of the authorities to conduct above-mentioned activities. 
I see that in Maligawatte Hospital for the Kidney Disease there is some voluntary group who organises daily morning tea and some buns are distributed for the patients and if this can be done in other hospitals the Health officials can help also in the process of counselling and nutrition areas I do think it will help the patients immensely.
Another area is the “Alternative Medicine” which is neither local or foreign or using our own body for keeping our health. The meditation facility, prayer and other dimensions can be useful to help the patients to prolong life.

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