Family is irreplaceable

Nathan Liewicki
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Anita Aikman (left) poses with her son Taylor, daughter Alexia, husband Todd, and dogs Jax (middle) and Myla. Although Anita is the one living with an extremely rare kidney disease, the entire Aikman family has become stronger as a result of her arduous journey.

Aikman opens up about rare kidney disease

The role of a mother is irreplaceable in the life of a child.

A mother nurtures her children when they are ill, supports them when rough times abound, loves them infinitely and serves as the family rock.

Anita Aikman is all of the above. She has also been nurtured, supported, loved and leaned tirelessly on her family – even before she became a mother.

“My husband is my rock. The support from him, my friends and family is undeniable,” said Aikman. “Without them I wouldn’t be able to cope with it very well.”

“It” is the rare disease Aikman has been living with since she was diagnosed in August 2003. She is living with loin pain hematuria syndrome (LPHS).

According to the Office of Rare Diseases Research, LPHS is a kidney disorder characterized by persistent or recurrent loin pain and hematuria (blood in the urine).

Aikman’s family physician, Dr. Pierre Hugo, described the occurrence of LPHS as when red blood cells pass into the collection system of the urinary tract inside the kidney.

“There are small tubules that relay the urine out of the kidney to the bladder and what that does is causes a sort of congestion in the kidney. Because of this, the kidney swells up a bit and is surrounded by a capsule, which is quite pain sensitive.”

After being passed off from doctor to doctor after she first began to experience pain and discomfort in 1998 – while pregnant with her son – Dr. Hugo has been a godsend for Aikman.

“I had been to a couple dozen doctors and none of those doctors would take the time – because it is such a rare disease – to sit down and actually learn about the disease,” she said. “They would actually fluff you off and say, ‘I don’t have time for you.’”

Dr. Hugo has more than made time for Aikman. He took the time to contact all of her other specialists, including the doctor who performed her first surgery.

Furthermore, he has taken it upon himself to learn more about LPHS, a disease that affects a little more than 200 people worldwide – most of them females.

Like the disease itself, the preponderance of females with LPHS is something Dr. Hugo couldn’t explain, but said needs to be researched further.

Not only is Aikman living with a rare disease, she is the only person in Saskatchewan with LPHS.

“You feel really lost because you don’t have anybody to talk to,” she said. “You can talk to people, but they don’t understand.”

In Aikman’s case, treatment for LPHS is pain management.

“There is a way that you can try and alleviate the pain with a surgical procedure and it's called an autotransplantation,” said Dr. Hugo.

So, in October 2003, Aikman underwent a right renal autotransplant.

Kidneys are one of the only organs doctors can move anywhere in the body – so long as there are arteries and nerves to attach it to. In order to alleviate or reduce the recurrent throbbing pain Aikman was experiencing, doctors moved one of her kidneys above her bladder.

However, something went wrong.

“My body, because I’m such a rare case, rejected my own kidney,” said Aikman. “It filled with infections constantly, so they had to take it out.”

In January 2004, Aikman’s infected kidney was removed in London, Ont., because there were no doctors in Saskatchewan who knew what to do.

Since that surgery, life has not been easy for Aikman, her husband Todd, 15-year-old son Taylor and 13-year-old daughter Alexia.

Aikman described the physical pain she experiences on a daily basis as a seven on a scale of 10.

“It’s very hard to sleep because I’m in pain. It’s very hard to do a lot of things. I can’t do physical activities because I’m in pain,” she said. “It’s hard to function.”

"I felt all emotions together because when they said I didn't have a real mom, I do have a mom. She's just not around as much because of her sickness." Alexia Aikman

Even simple tasks were made arduous and impossible without assistance because of the throbbing pain, which Aikman said sometimes “feels like you’re being stabbed.”

“My husband would have to take time off work constantly to come and care for me because there were days I was in so much pain that I couldn’t even get out of bed,” said Aikman. “He would have to come and help take me to the washroom.”

While Todd has had to serve as mom, dad, a full-time worker and a full-time caregiver, Alexia and Taylor experienced their own trials as a result of their mother’s illness.

“I woke up with nightmares of her dying and it freaked me out,” Taylor said.

Every time there was an argument in the house Taylor would leave to get away from it all. He dabbled in drugs, alcohol and smoking, and stopped going to school when his mom was in the hospital.

Although her brother skipped school, people at school bullied Alexia.

“There were some kids at my daughter’s school (and) it was very hard for her because some kids would make fun of her and say ‘you don’t have a mom. Your mom can’t take you shopping and can’t bake cookies with you. Your mom can’t do everything my mom does with me.’”

Alexia described her mother as the “fun type of mom,” but admitted there was nothing fun about others bullying her about her mother.

“I felt all emotions together because when they said I didn't have a real mom, I do have a mom. She's just not around as much because of her sickness,” Alexia said. “She tries to do as much as she can when she's around us.”

The family’s long-time dog, Myla, has also been affected by Aikman’s illness.

When Aikman was in the hospital for 33 days spanning May and June 2013, Myla would go days without eating.

“She’s usually very hyper,” said Todd. “She sulked around. She knew something was up.”

When Aikman returned home from the hospital, Myla instantly snapped back to her normal self.

Of late, Aikman has been around her family regularly.

In February, she had a new pump installed. Located in her abdomen, the Medtronic drug pump inserts electrodes into her spine. It goes directly up to the vertebrae in her body and leads to the nerve bundle attached to her kidney.

The pump can disperse different analgesics, but Aikman’s pumps morphine.

“It doesn’t make me drowsy and it doesn’t make me groggy,” she said. “It does not affect me, so that’s one of the reasons I went this route – to get off all those oral pain medications.”

Without the pump, Dr. Hugo believes Aikman would probably have had to go on “permanent potent pain medication” and been accompanied by long-term effects.

Despite the many years of pain she has endured, Aikman knows she wouldn’t be anywhere without familial support.

“Every last one of them has offered to give me a kidney,” she said with tears filling in her eyes. “Everybody says family is irreplaceable, but to have a family come together as strongly as mine has, especially to offer give an organ – there are no words that can explain that.

“Everything that has happened to me I wouldn’t change because it has made me a stronger person and a better person – not only for me, but for my family.”

Nathan Liewicki can be reached at 306-691-1256 or follow him on Twitter @liewicks

Organizations: Office of Rare Diseases Research, Medtronic

Geographic location: Saskatchewan, London, Ont.

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  • Alys
    May 21, 2014 - 09:51

    Well done Anita. Anything that can help to raise awareness is a good thing. I met a Urologist from Saudi who had looked after 100 women with lphs & done unpublishes research. When he moved to the UK he diagnosed a new case every week. So I think there are more than 200 sufferers. I am a fellow sufferer & got ill when my son was 7. It's a hard path to follow, but as you say, it makes us stronger :)