Indian Transplant Newsletter.Vol. 14 Issue No.: 43 (Nov 2014–Feb 2015)
Print ISSN 0972 - 1568

Kidney Disease – Coming Full Circle: A Patient’s View

Indian Transplant Newsletter.
Vol. 14 Issue No.: 43 (Nov 2014–Feb 2015)
Print ISSN 0972 - 1568
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Mrs. Malathi Venkatesan

For the last 3-4 decades we have been flooded with so much information on kidney disease – the cause for kidney disease, treatment, statistics of how many are affected and how many people have access to treatment because of exorbitant cost and non-availability of facility in many places, success rate in the treatment, awareness about the disease, screening for early detection, conferences on shedding new light on this deadly disease and all the ongoing research being done to conquer the disease. Yet the main question remains unanswered, can kidney disease be completely cured, can a patient become normal and totally released from the clutches of this debilitating disease?

Kidney disease affects a person physically, mentally and financially. It has various kinds of treatment, but you could finally end up where you started – coming FULL CIRCLE.

My Personal Experience I was a very normal person and led a very simple life with healthy habits. But towards the end of my pregnancy I developed hypertension. Delivery was hastened by two weeks, but it was a normal delivery. After three months the blood pressure (BP) settled down without any medication. After many years as my menstrual cycle was erratic, I was given some hormones to regularize the cycle, which had a bad effect on my BP. So various tests were taken to check the kidney function and all were normal. A few years later, I had sciatica (pain in my leg) and so took Ayurvedic treatment. During the course of the treatment, protein was found in the urine. So I was referred to a nephrologist and blood tests were done to determine the function of the kidneys. Both urea and creatinine levels were slightly elevated. That was the beginning of my kidney disease. My doctor A. J. Kripalani said, “Only 33% of your kidneys are working. We can only retard the disease, but cannot arrest it. There is no suitable medication, but you need to restrict your diet.” Regular blood tests were done to check urea and creatinine and there was no medication given except a minimal dose for BP and some diet restriction. Like this 4-5 years passed, but slowly there were some changes in the blood report. I was advised to get the fistula (an access to do heamodialysis) done as a preparatory step for dialysis. After a year I developed evening rise in temperature and was empirically treated for tuberculosis (TB) for nine months. The fever did not abate even after nine months of TB treatment. I was in Mumbai at that time.

I came to Chennai to take a second opinion about this fever and was told by the doctor that once dialysis is started the fever may subside, as the toxins may be causing the rise in temperature. The outcome of this was that I was started on dialysis, though the parameters and renal profile did not warrant, at that stage, to begin dialysis (it happened to be just guesswork, for the temperature still continued even when dialysis was started).

So this was my FIRST mode of treatment – Haemodialysis (HD). I went through haemodialysis for a few weeks, three times a week. Then I was referred to Dr. Georgi Abraham, a senior nephrologist. After a few weeks of HD, he advised me to go on Continuous Ambulatory Peritoneal Dialysis (CAPD). So my SECOND mode of treatment, CAPD was started. This method is more effective as it is done all day, except at night, and on all seven days. So it is almost like normal kidney function to remove the waste products and balance electrolytes and water, as against HD which is done only four hours a day, three times a week. In CAPD your diet restriction is relaxed, you do this procedure at home without going to the hospital and getting hooked to the dialysis machine. A catheter is inserted into the abdominal cavity and the peritoneum (membrane lining the abdominal cavity) acts as a filter much like the dialyzer in HD. I had to do four exchanges and at night after draining leave it dry. This I managed to do myself as a lot of care has to be taken regarding hygiene to prevent infection going from the catheter into the peritoneum. So this method went on for a few months. I could not travel as I had to carry voluminous dialysate and wherever I went I had to be back home within four hours to do the next exchange. One day, I had very excruciating pain in the upper abdomen with vomiting. I was admitted in the hospital and it was found to be a strangulated umbilical hernia. This was due to pressure of the dialysate fluid in my abdomen, said the doctor, and it had to be operated immediately as gangrene had developed. So I was operated as an emergency and a few centimetres of the intestine were removed. I was back on HD for two weeks till the wound in the abdomen healed. Due to the surgery my haemoglobin level plummeted to 5 (normal 12 – 15.5 g/ dl). Then I went back to CAPD. After a few months, I developed pain in my abdomen and vomiting. It was unmistakably another hernia again. I was operated and this time they put a mesh around that area to prevent recurrence.

My doctors now said that I should consider transplant as a solution to the problem. Meanwhile when routine serology test was done it was found that I had become HCV positive (via the dialysis machines). This was an unexpected development. So transplant could not be considered with this problem, as the infection could flare up when immunosuppressant was given after the transplant. So I was given treatment with a medicine called Interferon. I had a violent reaction to it with very high fever, body pain, extreme exhaustion and frequent hospital admissions. Since I could not tolerate it, the medicine was withdrawn. Meanwhile the low grade fever I’d had for two years still continued. So I was advised by my doctor to consult an immunologist in Vellore about this fever. There the doctor did various tests and assured me that the fever of unknown origin would not interfere or affect the outcome of transplant. This was a strong assurance that we could proceed with transplant. Finally my blood sample was sent to Singapore to be tested for HCV. The result declared that the HCV was dormant. So the transplant could be scheduled finally.

My third mode of treatment was a TRANSPLANT. With all the tests done and matched with my donor kidney (my cousin) the transplant was done on 19th May 1995. All went well. The output of urine was excellent and creatinine plunged from 8.5 to 0.6. I was discharged after two weeks and had to do regular routine checks for kidney functioning. For the next three months there were very strict rules to prevent infection. No going to crowded places, restriction on visitors, very stringent method of preparing food and serving, measurement of urine output etc. – all had to be strictly followed. All along my mother, my husband and daughter and my brother were of tremendous support to me to fight this disease. I stayed in a very sprawling bungalow, which was the guest house of my husband’s company during my convalescence. It was full of greenery and pollution free clean air. I am very grateful to the company for allowing me to stay there. This helped me to recoup fast. I returned to Mumbai and was very normal within the restricted frame work, which I had to observe both in diet and avoiding infection.

The next few years were very smooth and I resumed my normal activities. My daughter’s marriage took place two years after my transplant and I was able to perform it with lots of energy and strength. I started travelling to many places without worrying about dialysis and post-transplant precautions. Life was smooth sailing for almost 18 years after the transplant and I almost forgot about my illness.

 In 2010, 15 years after transplant I started getting UTI (Urinary Tract Infection) often. I was admitted in the hospital frequently and given heavy doses of antibiotics for two weeks or so. The doctor felt that the transplanted kidney was getting rejected slowly and the UTI infection must have infected the kidney also. In 2012, one day I felt very breathless with pain in the chest and gasping. I was admitted in the Cardiac ICU. An angiogram was done, which revealed a block in one of the blood vessels. A stent was put in as it was felt that a bypass would be risky. Till now the stent is working well in spite of many episodes of very high BP and potassium levels. In 2013, my legs started to swell and I was not energetic. The doctor advised me to get the fistula done again; to be prepared in case the need arises. This upset me a lot for I knew that my transplanted kidney was slowly giving way and rejection had started. So a fistula was done again. By middle of June, my BP was uncontrollably high and did not respond to any medicine. Dialysis was started and I was once again hooked to the machine from July 2013. This went on smoothly for some time. But then one morning in August, I had severe pain in both my legs and could not even get up from bed or turn from side to side. The investigations revealed nothing and the cause of the intense pain was a medical mystery. With all this I had dialysis three times, which was a challenge with severe leg pain.

Then came the worst period when I developed an abscess in my left groin. The abscess turned out to be much deeper than first thought. After it was operated on, the cleaning deep inside the raw wound every day was a nightmare. When I asked about this infection, the doctor said it may be due to long period of immunosuppression (18 years). It is so ironic that the medicine given to prevent rejection led to another terrible problem as its side effect. I understood that patients not only have to handle the disease, but also the added problems caused by medication. When this settled, I started to get breathless in the night. Thrice at night I had to be rushed to the hospital. There was not much weight gain, but BP was very high. Every time they also checked the potassium level. It was very elevated. Once I  was rushed and the potassium was 9.2 and the pulse was 14. The doctor said they had not seen a patient surviving with such a high level of potassium! These episodes of very high potassium continued and the doctor felt that I was under-dialysed. So I started undergoing dialysis four times a week. Even with this the potassium and BP did not settle down for many weeks. Finally it was found that the fistula had failed. This was a big shock. All along it appears the blood in the dialysis machine was inadequate. This meant I was inadequately dialysed and this was the main reason for high level of potassium, in spite of being dialysed four times a week. Because of this oversight I suffered for three months, frequently visiting the hospital at all odd hours with high potassium and BP without knowing the cause. Since the fistula failed, a Permacath (in the chest) was put in as an access for dialysis. The potassium level came down within three days and the BP also settled down. Now the dialysis is going well, but I feel irked due to the itching because of the plasters on the skin around the catheter, pricking pain, sensitive skin, which sometimes bleeds. The Permacath should not get wet and so normal bath also cannot be taken. Due to this my very favourite exercise swimming was totally stopped, which is very frustrating.

So now I am back on dialysis and have come FULL CIRCLE having gone through Haemodialysis, CAPD, Transplant, rejection of the kidney, access failing and in the process all the accompanying trauma of infections, frequent hospital visits, prolonged stay for the last one-and-a half years. YET I FIND NO CURE OR RESPITE OR FREEDOM FROM THIS DEADLY DISEASE. Our only hope lies in medical research in this major area to prevent rejection, which will be a great step to conquer this deadly disease.

Editor’s note – Mrs. Malathi Venkatesan is on the Board of Trustees of MOHAN Foundation and TANKER Foundation, Chennai. She has been selflessly guiding and mentoring both organisations for many years. The setbacks in her health have not stopped her from helping organ failure patients and supporting the cause of organ donation.


To cite : Venkatesan M, Navin S. Kidney Disease – Coming Full Circle: A Patient’s View. Indian Transplant Newsletter.Vol. 14 Issue No.: 43 (Nov 2014–Feb 2015).
Available at:
https://www.itnnews.co.in/indian-transplant-newsletter/issue43/Kidney-Disease-Coming-Ful-Circle-A-Patients-View-379.htm

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