Everything diabetes

A lot of people have been wanting to know if a pancreas transplant is the holy grail of a type 1 diabetes cure. In Diabetes Utopia, we should be able to cure ourselves by simply replacing the errant pancreas with a shiny new one, like changing a fused light bulb for a working one, isn't it?

A transplant is not a cure, it's a treatment

I decided to get some more insight from someone who has actually had an SKP - Simultaneous Kidney Pancreas transplant, my friend Shekhar Milani who has been very forthcoming and eager to share his experience, help and motivate diabetics to stay on track and take care of themselves. It takes courage and an open mind to do so and I am grateful to him for sharing his story with the world. I must mention, Shekhar is the jolliest member of our crew and his one liners leave everyone in splits!

A pancreas transplant is usually always done in conjunction with a kidney transplant for type 1 diabetics who have end stage renal disease. The transplant is not a recommended course of action unless there is no way out, as it is believed the risks outweigh the benefits.

Shekhar's Story

Shekhar was 8 when he was diagnosed with type 1 diabetes in 1997. He lives in Pune, India with his parents and siblings. Growing up, he was a regular kid - going to school, playing with siblings and friends, rebelling like any other teenager his age, with the added burden of T1D management which his siblings, friends and school mates did not have. Going to school in the late 90s when T1 was not as known as it is today, he recollects a class teacher refusing to let him treat a hypo because she felt he was faking it and only wanted to eat candy. In hindsight he feels it was a series of experiences such as these which added to his mental stress and fatigue and made him over treat his hypos ever so often causing an unwanted rollercoaster of blood sugars. Add to that the general boredom to test BG, the monotony and burnout of diabetes management over the years, the lack of knowledge about correct food choices, constantly elevated blood sugars, HbA1cs as high as 13..all of these eventually leading to the perfect storm.

Uncontrolled blood sugars in diabetics is a leading cause for kidney disease
Shekhar with his parents

In early 2015, his elder sister accompanied him for a routine check up to a local hospital. Problems have a way of creeping up when you least expect them and that is exactly what happened when the results came in. Shekhar's blood pressure had shot up and his creatinine levels were higher than the normal threshold. 25% of his kidney function had already been compromised by that point and he had embarked on the early stages of the journey with CKD - Chronic Kidney Disease by then. It was a rude shock for Shekhar who was in his mid twenties at the time and it deeply worried his family too.

Kidney disease in its early stages may not cause noticeable symptoms and you most likely would not know you have a problem until you test. This is why, as a diabetic it is essential to regularly test your kidney function and blood pressure, as per your medical professional's advice.

Shekhar is pretty intuitive and direct and the first question he asked his doctor is if he would need to undergo dialysis anytime soon. Even the thought of it scared him. The doctor, probably wanting to sound hopeful and conservative said they would wait and watch. Shekhar began medication on his nephrologist's recommendation and his family began to look for answers and solutions in alternative forms of medicine such as Ayurveda and Homeopathy too. In the meanwhile, his creatinine kept inching up silently.

28th March, 2015

After his parents retired for the night, Shekhar was watching some late night TV in his living room and preparing to wind down for the day. Sitting on his couch, he felt a sudden sense of weakness, breathlessness, heavy sweating and a feeling of wanting to urinate. It was most unusual and it was definitely not a hypo, he checked on his glucometer. He went to the loo and felt like he was going to collapse there. Panicking, he called out to his father for help and his family rushed him to a hospital a little after midnight. Shekhar had his first kidney dialysis that day at the hospital.

Shekhar and his mum before one of his dialysis sessions

A note on dialysis

Dialysis is a medical treatment done usually during end stage kidney failure when your kidneys cannot do the job that they are supposed to, which is maintaining blood pressure, removing waste, salt, water and maintaining a balance of chemicals in the body. If kidney failure is permanent as would be in the case of end stage CKD, dialysis would be needed for the rest of your life, or until you get a kidney transplant. Dialysis costs a fair deal of money. It also necessitates changes in your eating and drinking habits and you need to set aside several hours a week to have this done.

Here's what kidney dialysis looks like :

Picture for representational purposes only

I had goosebumps as Shekhar described to me in detail his life over the next year. For the next precisely 365 days, he was on dialysis about 3 times a week. Each session lasted 4 hours. His sessions typically started at 8AM and went on until noon, after which he would go into office. Luckily for him, his boss and colleagues were extremely supportive throughout this process.

The first day he underwent dialysis, a catheter (soft tube) was inserted in his neck for temporary access up to a month or so. For regular access to your bloodstream during ongoing dialysis, medical teams usually create something called an AV fistula on your arm by performing a small surgery. After the surgery, fistulas take four to six weeks to mature. Until Shekhar's fistula matured, doctors used the catheter on his neck to carry out dialysis.

Here's what a fistula on the arm looks like :

Picture for representational purposes only

As Shekhar slowly got used to the new normal, he had to be careful to not catch an infection or compromise his immunity in any way. It was hard and he wished the ordeal would be over soon. As the days went by, it became clear that Shekhar would need a kidney transplant. Shekhar and his family spoke to the transplant team at the hospital and it was decided he would eventually have a kidney and pancreas transplant. Shekhar's team of doctors and medical professionals in Bangalore, Dr Anil Kumar BT and Dr Suresh Raghavaiah have been hugely supportive and helpful in every way possible to him and his family, in Shekhar's own words.

Shekhar (centre) with his doctors and medical professionals after the surgery

Thus began the paperwork trail, expenses and the long wait on multiple waiting lists until a suitable donor was found. The costs for a transplant in India largely differ state wise, for instance it could cost about Rs. 20-25 lacs in Maharashtra, whereas it costs about Rs. 12-15 lacs in Karnataka and Tamil Nadu. A point to be noted is that most Indian insurance companies do not cover the costs of a pancreas transplant, making it extremely expensive and a relatively rarer type of transplant. Shekhar's family ended up shelling out close to Rs. 35 lacs eventually, because he had to undergo four surgeries for his specific situation.

28th March, 2016

"If you make the sincerest demands to God, He listens" says Shekhar. After what seemed like an excruciatingly long wait, Shekhar got a call on 22nd March 2016 at 4:30PM that a matching donor has been found for him in Bangalore. Shekhar and his family flew down from Cochin immediately. The transplant was scheduled for the next day, 23rd March 2016 and was done successfully. Exactly one year after his first dialysis on 28th March 2015, on the same day next year was Shekhar's last and final dialysis with his new kidneys. It also spelt an end to years of injections and the insulin pump, both of which he had used. It was a very emotional and special moment for Shekhar and the entire family.

As I tried to process all the details in my head over endless days and cups of coffee with Shekhar, he grinned back at me like a Cheshire cat. He's right when he says God made him the Chosen One - he has decided to use his second innings to create awareness in the diabetic community, motivate and inspire people to value and take care of their bodies.

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