‘I blew up like a huge balloon, it was terrifying’

When Piotr Pokrzywnicki’s legs started to swell he was alarmed, but he tried to carry on working.

The construction worker needed to finish “a very important project” building a house – but after three days he was so tired he had to be taken to hospital.

Despite two weeks of tests and scans, doctors were unable to find out what was wrong with him.

He was told to visit his doctor three times a week for blood thinning injections and was given pills for high blood pressure – but his legs kept getting bigger.

Piotr, who lives in Edinburgh, is 6ft 5ins tall and at the time was fit, slim and a keen runner.

“My legs were so massive I couldn’t fit into any of my trousers, they were 30kgs (five stones) heavier than normal,” he explained.

“Then I got a call from the hospital to say come in immediately.

“When I was there I remember a doctor asking me if he could show students my legs because it was an example of something strange going on in the body,” the 47-year-old said.

“We understand this is a difficult time for Mr Pokrzywnicki and encourage him to please speak to our team about his concerns.”

 

Piotr Pokrzywnicki

Image source, Piotr Pokrzywnicki

After two months his whole body was swollen and it was discovered that he had kidney failure.

Doctors kept testing for six months.

“They put me on experimental drugs with dangerous side effects and they caused my kidney levels to go up and down too much. Blood flowed into my kidneys and they stopped working.

“I was huge like a balloon, it was terrifying and I was suicidal because I was so sore.

“Everything was swollen and I couldn’t sit down.

“I was so thirsty but I wasn’t passing urine.”

 

Piotr Pokrzywnicki

Image source, Piotr Pokrzywnicki

Piotr said the medication also caused him to have an epileptic seizure.

He said he was so swollen that it was hard to move.

Doctors drained 12kgs (two stones) of liquid from his body and it took a year to get back to a more normal size.

Piotr has been off work and in pain since his legs began to swell in July 2017.

“It’s not been an easy time for me, I have a nightmare every day,” he said.

“I have to take hundreds of pills every week, I need to drink less fluid, my life has changed so much.

“I can’t work, but I want to work.”

 

Piotr Pokrzywnicki

Image source, Piotr Pokrzywnicki

Poitr, who moved to Scotland from Poland in 2010, has been undergoing dialysis three times a week. He has been on the waiting list for a donor kidney.

“I have been taken off the list three times and am currently suspended from the list because they say I need to lose more liquid,” he said.

“They have given me a challenge of getting rid of another 2.5kgs before they will put me back on. I need to drink less water and hope the medication works.

“I can drink 10,000 litres but I don’t feel like going for a pee. I haven’t peed for four years. I miss being able to pee.

“I am desperate for a kidney.”

‘A variety of complications’

Dr Tracey Gillies, medical director for NHS Lothian, said that Piotr’s condition had not been caused or accelerated by any of the drugs he had been prescribed as part of his care.

“Kidney disease progresses rapidly in many cases,” she said.

“It can cause a variety of complications, including severe fluid retention and swelling and potentially life-threatening blood clots, which require treatment.

“Warfarin is a recommended medication for use with kidney disease patients to prevent life-threatening blood clots forming.

“We understand this is a difficult time for Mr Pokrzywnicki and encourage him to please speak to our team about his concerns.”

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