Organ donation needed to save NOTL woman

Diane Peirce is a private person. She’s also a strong woman, very much the matriarch, the caregiver of her family, and not at all comfortable about asking for help.

Her daughter, Natalie Cooper, has no such qualms. She doesn’t want to lose her mother.

She has plans for Diane to stick around long enough to see the light of her life, Olive — Natalie’s 15-month-old daughter and Diane’s only grandchild — grow up.

Diane has end-stage liver disease. There is no cure, but a transplant would save her life, bring her back to the good health she has always enjoyed, give her energy to play with the granddaughter she loves fiercely, and continue to be a wife to Mike and mother to Natalie and Nicole.

Olive, says Mike, “is an amazing distraction for Diane, a happy little girl, and a wonderful gift for all of us.”

“It’s so important to me to continue to be part of her life,” says Diane.

And her family is far from being ready to let her go.

As Natalie adds, “it’s important to me to have her in Olive’s life. And in mine,” she says as she gives her mom a hug.

Diane’s best chance of a transplant, she’s been told, is to find a live donor.

She learned about a year and a half ago her liver was not functioning properly. She had lost a lot of weight, had a persistent cough, was jaundiced, and although she has always been active, found she was tiring easily.

Testing showed she had a fatty liver, and further investigation uncovered twisted and clogged bile ducts that were preventing toxins from draining, and causing cirrhosis of the liver — a condition that in her case was not caused by alcohol, Mike points out.

In February, 2018, she was diagnosed with primary sclerosing cholangitis, a rare disease for which the only treatment is a transplant, and which could be a result of dealing with years of colitis and irritated bowl syndrome, and was put on the list to wait for a donor. She then completed all the requirements for liver transplant surgery..

“I can’t say enough about the whole team of people who looked after me,” says Diane. “They gave me so much support, showed so much kindness. My doctor said she would treat me like she would treat her own mom, and told me she fully expects me to live into my 80s. I told her, ‘I’ll take that.’”

But she is one of many on a waiting list for a liver, some of whom will die before their turn comes.

Diane is sure she is not going to be one of them. 

“I’m being very positive about this. I won’t think about anything negative. I believe something will work out for me.”

In the meantime, the doctor told her, “this is the new normal. Push yourself to live through it. Play nine holes of golf walking.”

She does that, several times a week as a member of two leagues, and also golfs occasionally with Mike.

She volunteers — she was one of the volunteers at the recent Snowbirds Air Show — and although she naps most days to recharge, she plays with her granddaughter every chance she gets.

“It’s amazing how much energy she has when Olive is around,” says Mike.

And when a match is found, as she is sure there will be, “I’m going to have another new normal,” says Diane.

As a potential organ recipient, she is not told where she is on the waiting list, which is ever-changing, as some people grow more ill and move closer to the top, and others’ conditions deteriorate to the point where they are not well enough for a transplant.

They are dependent on a MELD score (model for end-stage liver disease), a measure which prioritizes who will receive a liver should one become available, explains Mike, and Diane’s score can change, depending on her current state of health.

She is positive there is a good outcome waiting for her, and at the moment, the most likely way to get there is through a live donation.

A liver is a miraculous organ, says Mike. It can regenerate itself. A transplant of a section of a healthy liver from a live donor would almost immediately return Diane to the same robust health she has aways enjoyed.

A live donation “provides the best chance for survival, and the best quality of life,” says Natalie.

“There is a risk of waiting for a deceased donor — you can become too sick to qualify,” says Mike. “A live donor transplant is far and away the best as far as outcome.”

Since 1990, 800 living liver donor transplants have been performed at the University Health Network at the Toronto General Hospital site, with all donors having returned to their regular lifestyle with no restrictions.

But donors are hard to find, especially when there is no one in the family who can help — everyone who has volunteered and was able to be tested in Diane's family has been eliminated.

The age limit to be a live liver donor is 59. Both Mike and Diane’s two sisters have been disqualified because of their age

The way the system works, Mike says, it’s paramount to protect the donor, and an older person doesn’t recover as well as someone younger. He would do anything to help his wife — he begged them to bend the rules — and is devastated he has been ruled out.

Natalie has been eliminated because she has multiple  sclerosis — anyone with a chronic illness is disqualified from being a donor.

The family thought Natalie’s husband Adrian was going to be a match, but when he revealed he has sleep apnea, he was off the list — he’s not a candidate for surgery because he sleeps with a mask.

They have been advised to start looking for a live donor in other ways, outside the family, says Natalie.

“In Toronto, people put it on billboards,” she says. In Niagara-on-the-Lake, she decided to begin by asking the local newspaper for help.

Diane and her family realize it’s a huge thing to ask anybody. They fully understand it would take a very special person, but they know there are people out there who are special. 

Mike says when he realized he couldn’t be the one to save his wife, he decided if someone else could help Diane, he would offer one of his kidneys to someone in need — his age does not disqualify him from being a kidney donor, and they’ve learned enough about organ donation to appreciate how many lives can be saved by live donors. He has to wait until after Diane's had her surgery and has recovered, because he will be her caregiver, but when the time comes, if he can be a donor, he will, he says.

The process for a potential donor to apply to determine if they qualify, done through the University Health Network in Toronto, is very protective of the donor, says Natalie.

It’s completely anonymous for anyone going through the process, she explains. As she was trying to line up some family members for testing — only one person can be tested at a time, and only when eliminated do they go on to the next — she couldn’t even get information if someone was in the process of being tested. That’s to protect anyone who says they will apply, and then changes their mind, she explains.

“There is psychological testing as well as physical,” she says. “All the way through the process, right up until the very last minute, when the surgery is about to begin, a donor will be asked if they’ve changed their mind. If they do, we would just be told something had happened to disqualify them — we’d never know they had decided they couldn’t do it.” 

Encouraging the family in their quest for a donor is Vanessa Smith, a St. Catharines woman.

Smith, a mother of six children, learned while watching her son’s hockey game that one of the hockey dads, a father of two from Grimsby, was very ill, and needed a liver transplant. She went up to his wife after the game, and said she would help, although he was not a close friend.

Both he and his wife were concerned about Smith putting herself at risk when she had six children who needed their mother, but her answer was that they had two children, and they needed their dad.

In January, 2016, she underwent surgery that saved his life. 

The surgery and recovery went well, she says. She felt little pain, was out of the hospital in five days and up and about much quicker than she’d been told to expect.

She needed little naps for about two weeks, and has been fine ever since. Although she doesn’t have a lot of contact with the recipient of the transplant, the last she heard he was fine, working, travelling, and spending time with his family.

She never felt any hesitation about what she was doing. 

“I fully knew, 100 per cent, that everything would be fine.”

The UHN team made her feel very comfortable about what she was doing, she says.

“I had an intensive workout at the hospital in Toronto. It was very thorough. I believed if they tell you it’s okay, it’s okay.”

She’s been told that what she did was amazing, but she doesn’t feel that way at all.

Now 39, she has had no repercussions at all from the surgery, and no regrets about what she did. She believes it was a valuable lesson for her children, now aged six to 19.

“I feel like it wasn’t that big a deal. The doctors saved his life, not me. I’ve taught my kids if you can help someone, you need to help. And I believe if I can do that, others can as well, and if everyone helped people when they could, the world would be a much better place. I also believe someone will come forward for Diane, and she will have a long, healthy life.”

There may be people out there who have thought about being an organ donor, she says, but discovering there is someone they know who needs help may push them to do it now.

And that not only helps Diane — it takes her off the waiting list and bumps someone else up for the next transplant. 

To encourage anyone who might be thinking of being a donor for Diane or for anybody, Smith says, she would be happy to help in any way she can. She would meet with them, tell them what to expect, and how rewarding it feels to know you’ve helped someone. 

And although donors have the right to remain anonymous — that was her plan at first — she agreed to go public after being asked by the UHN, and being told making more people aware of the living donor program could help save others.

“Someone may be found to be a match for someone else. It can end up helping a whole bunch of people,” she says.

In the meantime, Diane and her family wait. She can’t travel more than two hours from Toronto without permission from her health team, in case a liver from a deceased organ donor becomes available.

And Diane remains positive for a good outcome.

Smith is “such an incredible person. There is one angel out there,” she says. “I know there is another one."

There are links on Diane’s Support Group, a Facebook page dedicated to helping find a donor. A link to the relevant forms are posted online on Facebook and on a website the family has created, donor4diane.com. Or contact the University Health Network Centre for Living Organs  at 1-416-340-5400, or email [email protected].

There are also links and answers to the many questions about live liver transplants at uhn.ca/Transplant/Living_Donor_Program/Pages/living_liver_donor.aspx