Shruti Mukundan is a patient of end stage kidney disease. Here, she chronicles her journey from age 7 to now - dealing with kidney stones, kidney transplant and a more permanent, needle-free dialysis. And shares her dream.
I was just 7 years when I was first detected with the kidney problem. I used to get a burning sensation in my urine. Like all children of that age, I just wanted to play with my friends and not be bothered about anything. When an x-ray was done, it showed some stones in my kidney. My mother took me to a homeopath who gave me some medicines and told me drink lots of water and plenty of fluids. After some months, the burning sensation stopped and an x-ray showed that no more stones were present in the kidney. Small stones can pass out of the body with little or no pain. My parents were greatly relieved.
At 13 years - The burning sensation in my urine resurfaced. This time it was crippling and severe. I also had back ache, fever and Urinary Tract Infection (UTI). Tests revealed that I had very high count of bacterial infection and my right kidney and ureter were blocked by a 10 mm stone.
My urologist recommended a procedure called Lithotripsy. It is a treatment, typically using ultrasound shock waves, by which a kidney stone is broken into small particles that can be passed out by the body. It does not require surgery. My stones were expelled over five sessions. But each sitting was excruciatingly painful. I had to stop all other activities to be at home because of the acute pain.
At this stage my parents realised that I needed to have check-ups every year. With age, I was beginning to understand my health issue. I thought I was now entering a clear zone, with my x-rays and examinations being ticked clean.
But when I turned 18 years after a gap of nearly five years, my symptoms returned. The same irking pain and burning sensation in the urine! Yet again, there were some small stones found in the kidneys. I never knew anything about creatinine at that time, but in some years I knew I should look for such levels in my reports. Levels of creatinine in the blood reflect the amount of kidney function. According to the doctors I was predisposed to forming kidney stones, but all my questions of – Why do they form, inspite of low oxalate diet and forced hydration. How would it impact my life in the future? Wasn’t there any other way to ‘cure’ this issue, apart from ESWL (extracorporal shock wave lithotripsy).
I turned 23 years. Everything had been proceeding well for some time. When one fine day, I suddenly developed this bout of vomiting like I had severe gastroenteritis. I couldn’t digest anything. I would just eat and vomit. Tests revealed that my creatinine had shot up to 4.1. My left kidney had a gigantic stone which couldn’t be treated by ESWL and I needed to undergo a laser surgery. It was blocking my entire left kidney. My right kidney had shrunk in size meanwhile.
All this while I had been consulting a urologist. But now I was advised to visit a nephrologist. On seeing my condition, the nephrologist advised a low sodium diet and I was asked to preserve my left hand veins. That was the first time, I heard the word ‘Dialysis’. I just dreaded the sound of it. I was determined to stay off it, as long as I could.
At this time, I learnt that the stones that were forming in my kidneys were calcium oxalate stones. Calcium oxalate stones are the most common type of kidney stones. When too much oxalate passes through to the kidneys, it can lead to kidney stones.
The doctor prescribed a renal diet for me. For one month I had only lauki (bottle gourd). To reduce the amount of oxalate in my urine, I had to stay away from curd, dal, coconut, spinach, tomato. Although my creatinine had come down to 1.2, my kidneys were functioning only 30 per cent.
Then at age 25, the devil resurfaced. This time a uric acid test was done. People with high uric acid tend to develop urinary stones. Uric acid stones are the second most-common cause of urinary stones after calcium oxalate. The test was normal and I was back to “predisposed to block stones”.
After finishing my post-graduation, life took me to Bangalore from Delhi and was working in an IT firm as a communication trainer. This was the best phase of my life. My job was good and I had made some very close friends. Though I had a very hectic schedule but the financial independence that came along with it was thrilling. I loved the responsibilities that came along with it. During this time my eating out had significantly increased and I had put on 20 kgs. Although I attributed it to lifestyle problems, I still I felt that something did not seem right.
I had come home to Delhi for a short vacation. One morning I started getting seizures. Fortunately, my mother, who had just walked into my room, saw me jerking and twitching in my bed. My parents immediately rushed me to the hospital. Both my creatinine and urea level had shot up dangerously. I was put on emergency dialysis. Doctor said that I had suffered a uremic seizure. My creatinine was 17 and urea was 320. Uremia is a condition involving abnormally high levels of waste products in the blood. It is caused by extreme and usually irreversible damage to your kidneys. The kidneys are no longer able to filter the waste from your body and send it out through your urine.
At age 33 - With dialysis, my parameters began to return to normal. But my kidneys were reaching there end stage. Also, I lost 10 kgs in a month. I had to get a kidney transplant.
Since I did not suffer from hypertension or diabetes, transplant shouldn’t have been a problem. After two months of dialysis, we contemplated going in for a transplant. But the question, why did I get kidney failure was always on my mind.
Nevertheless, I underwent the transplant only to realise that urea and creatinine were not coming down. A biopsy of the new kidney showed multiple oxalate crystals. It was then that I was diagnosed with rare kidney disease called Primary Hyperoxaluria (PH). I had never even heard of this disease before. There were new challenges to conquer now.
The dilemma of whether I should have got a transplant or remained on dialysis began clouding my mind. I was informed, the treatment for PH is a combined liver and kidney transplant. The isolated kidney transplant would last me for 2-3years, the doctor predicted.
There were numerous complications post-transplant – heamatoma from the biopsy, UTI and sub-optinal graft function.
This time, I became extremely involved in learning about this disease. Afterall, the devil had a name! I started exploring on my own. As per my doctor’s instructions, I underwent genetic testing for AGXt gene for PH 1.I tested negative for it. The plot thickened as I found out that no other tests were conducted in India for PH 2&3. I researched for a bit and found that Mayo Clinic, USA is invested in researching for Oxaluria and its types. I wrote to them and they sent me vials for blood collection. I was very impressed with their promptness. I couriered it back to them and got the report after 5 months. I had a GRHPR gene mutation and the conclusive diagnosis was Primary Hyperoxaluria Type 2.
I was informed, had my condition been diagnosed earlier, I could have managed it with Pyridoxine (vitamin B6) , probably never reaching ESRD (end stage renal diagnosis).
I finally GOT diagnosed ‘a rare condition characterized by the overproduction of a substance called oxalate (also called oxalic acid). In the kidneys, the excess oxalate combines with calcium to form calcium oxalate, a hard compound that is the main component of kidney stones.
On January 18, 2017, I completed three years with the transplanted kidney. But the kidney developed nephrocalcinosis and the creatinine has started to rise. This time around I was better prepared to handle dialysis.
This whole journey has been life changing. From being afraid to can’t wait for the next session to get cleaner blood - I’ve come a long way. It has taught me to be more self-aware, responsible but most importantly, it has taught me to be happy in less.
NOW At age 39 I am on dialysis. Due to vascular access issues, I’ve made a huge shift from hemodialysis to Peritoneal Dialysis, a more permanent, needle-free dialysis treatment option that best replicates your natural kidney function. A catheter is placed in the abdomen to allow the fluid to enter and drain.
Frankly speaking, I would have not reached this far, had it not been for the staunch support of my family.
I look forward now to resuming work full time and continue baking as a hobby. I have a dream to open my own café someday. I have created my own recipes too.
To quote, Scarlett O’Hara from Gone with the wind - “After all, tomorrow is another day.”
You can listen to her in the webinar recording below
With deep regret we wish to inform our readers that Shruti Mukundan passed away on 05th June 2021.
