Dad who had double organ transplant says it was like a ‘horror film’

A father who underwent a life-saving double organ transplant during the Covid-19 pandemic which felt like a “sci-fi horror film” as surgeons wore hazmat suits and oxygen masks has said he is excited to “participate in life again” after making a full recovery. Sanjay Mistry, 45, a communications leader who lives in St Neots, Cambridgeshire^[1], was diagnosed with chronic kidney disease (CKD) in 2017 – a condition described as a “silent killer” which doctors told him meant he would need a kidney transplant.

Given the father-of-two had been living with Type 2 diabetes since his early 20s, and his kidney function was deteriorating at a rapid rate, Sanjay opted to have a simultaneous pancreas and kidney (SPK) transplant, as it can increase patient survival and prevent the progression of diabetic complications. After being placed on the transplant list, Sanjay was “on tenterhooks” waiting for a phone call and he shielded at home for months during the pandemic due to being “vulnerable”.

Sanjay was twice denied his transplant at the last minute, but after a third phone call on July 3 2020, he underwent the SPK transplant at Addenbrooke’s Hospital on July 4, 2020. The operation caused chronic illness which saw his weight plummet to just 7st 7lbs, but after over 10 months of recovery and therapy his health improved and nowadays he is working full-time and again able to play with his children – India, 10, and Ethan, six.

Reflecting on his “surreal” surgery, Sanjay told PA: “We started the operation just before midnight and that was a really surreal experience. It’s the middle of Covid, so you get wheeled into the operating theatre and I expected to see people, but all I saw was people in hazmat suits with their own oxygen masks. It was like being in some weird sci-fi horror film on this table looking up, with the lights glaring, and these people are looking over you and attaching you to machines.”

Sanjay woke up the next day in the high-dependency unit with approximately eight tubes coming out of his body and was told the procedure had been successful. However, he then spent six weeks in isolation at the hospital and was “close to not making it” due to complications after surgery, and he was overwhelmed by “loneliness”.

“You’re in a room attached to however many drugs and machines, and you’re dependent on the nurses to come and help you get out of bed in the beginning and then walk around,” he said. "You’re craving conversation or contact, and I’m an outgoing person, so I found that really difficult. I struggled with that and not being able to see my family.

“I had FaceTime and everything, but it’s not the same. You’re viewing your family’s life through a lens and you should be there but you’re not.”

Now Sanjay is healthy and active – going to the gym three times a week, training his son’s football team, volunteering for the charity Kidney Research UK, and has a “renewed zest for life”.

“I could not have got through this without the amazing, selfless, and utterly brilliant NHS^[4]. I will always be in their debt,” he said. “It’s a long, hard journey, but there is hope, and it’s good to see people really championing kidney disease because it’s one of those silent killers.”

Sanjay was diagnosed with Type 2 diabetes – a common condition that causes the level of sugar (glucose) in the blood to become too high – in his early 20s. In order to manage his glucose levels, Sanjay exercised frequently, ate healthily, took tablets, and injected himself with insulin up to four times a day.

He was then diagnosed with CKD in 2017 and was told he would need a kidney transplant within the next five to 10 years. However, since his kidney function had deteriorated rapidly by August that year, he was then told by doctors: “We really need to start thinking about dialysis and a transplant now.”

“When you’re told you’re going to need a transplant much sooner than you think, that’s when it really hits you,” he explained.

At this point, Sanjay said he looked “grey”, felt lethargic, and was constantly cold, so he wore layers to the point where “it was like the Michelin man walking around the house”.

Sanjay said “life was hard”, but at the time, he tried to focus on his health and the next steps for treatment. You feel horrific as it is, and every day is a struggle at times, but you don’t have much time to think about yourself.”

Sanjay was referred to Addenbrooke’s transplant unit in Cambridge to discuss his treatment options, and he opted for an SPK transplant due to his diabetes and CKD diagnoses. The NHS says patients who undergo a successful SPK transplant are likely to benefit from a longer life compared to staying on dialysis with diabetes, fewer restrictions on what they can eat and drink, and shorter transplant waiting times than those for a deceased donor kidney-only transplant.

While he waited for an update, Sanjay then started peritoneal dialysis in January 2019 – a treatment which replaces some of the essential functions your kidneys can no longer provide. He said he would “plug” himself into a machine every night using a catheter and 10-15l of fluids would be flushed through his body, making him look like he was “pregnant”.

He continued with dialysis until he received his third and final phone call on July 3 2020, and the following day, he underwent the SPK transplant procedure. Given he had to sign a consent form and “tick (his) life away” to acknowledge that “one in 50 transplant patients will die on the operating table”, and he was not allowed visitors due to Covid restrictions at the time, he feared he may not see his wife Liza, 45, and two children again.

“I was thinking about my family, what would happen if I passed away. What would happen then, what would they do?” he said.

Sanjay woke up 11 hours later in the high-dependency unit, and although the procedure had been successful, he ended up staying in hospital for six weeks.

“The organs themselves were perfectly fine, but I had a blockage the size of two golf balls, which got infected, so they opened me up to clean it out,” he continued. "They then took me down again a few days later and opened me up to find the internal bleed and I had a blood transfusion because I was losing so much blood. I remember the nurses squeezing the blood from the bag into me.”

Sanjay said he almost did not survive and then developed chronic sickness after returning home, meaning his weight dropped to 7st 7lbs. However, after building up his strength through resting and going for short walks, he started to feel like himself again – and he is now feeling healthy once more.

He has had counselling sessions to help him process the last five years, and he is now enjoying being active and spending time with his wife and children. While he is aware that his transplant “is not going to last forever” and he is currently taking immunosuppressants, he said he can now reflect on his journey with much less pain.

“It’s just coming back to a level of living that feels normal,” Sanjay said, “I know I’ve got this transplant and it’s not going to last forever – it might fail tomorrow, or it might fail in 10 years’ time – but I’m able to participate in life again.”

The UK’s Medicines and Healthcare Products Regulatory Agency (MHRA) has approved the medication Jardiance for the treatment of adults with CKD, but Sanjay feels more needs to be done to raise awareness of the “silent killer” disease which is affecting around 7.2 million people in the UK.

For more information and support, visit Kidney Research UK’s website here: kidneyresearchuk.org

References

1. ^{^} Cambridgeshire (www.cambridge-news.co.uk)
2. ^{^} Cambs gets first-ever life-saving bone marrow transplant service for children (www.cambridge-news.co.uk)
3. ^{^} Lower speed limits for Cambs village agreed with new 20mph zone (www.cambridge-news.co.uk)
4. ^{^} NHS (www.cambridge-news.co.uk)