Organ donation: 'It's an amazing feeling — someone else’s kidney under your skin'
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Fran Kendellen first discovered she had kidney disease while recovering from back surgery.
Before that, she had led a healthy active life, had never heard of the Irish Kidney Association, and the concept of organ donation was something she hadn’t paid any attention to.
But if the debilitating spine injury she suffered wasn’t bad enough, the discovery she had IgA nephropathy was just the kind of double whammy she could have done without.
Also known as Berger Disease, IgA nephropathy occurs when inflammation-causing proteins build up in the kidneys and stop them functioning normally.
“I had been taking anti inflammatories for the back pain after I had had surgery and I started developing high blood pressure,” the 43-year-old recalled.
“I was 30 at the time, and I was sent to Professor Liam Plant in Cork University Hospital and he did a biopsy, and diagnosed me with IGA nephropathy.
“He then told me I would eventually need a new kidney, but that it was not clear how fast the condition would progress.”
What followed was 13 years of a radically changed diet and lifestyle, which worked until three years ago.
“I never went on dialysis and I was able to carry on without it because I exercised and stuck to a particular diet and really took care of myself.
“One of my problems was potassium, so I had to avoid things like bananas, avocado, green leaf, soup, veg, all that kind of thing.
“I loved avocados, and all of a sudden, I couldn’t have them anymore.
“I could eat as many pastries or croissants or anything like that but the good food, I had to stay away from it, which was very hard for me.
“The reason for this was my kidneys just couldn’t function when there was too much potassium.
“Then I had to go on a low fat, low phosphate diet, which meant cutting down on dairy products like milk, cheese, yogurts, and anything like that.”
Then three years ago, her GFR — Glomerular Filtration Rate, which is an estimate of how well a kidney filters waste from blood — suddenly dropped to 11, and that was when she was put on the transplant list.
It took her longer to get her a match because she had two children, Kate, now 16, and James, who is now 10. Apparently it is easier for a childless woman to get a match for a kidney, because her two pregnancies meant she had a higher antibody count.
Both her husband Wesley, 46, and her brother Kevin, 39, offered to donate one of their kidneys, but they ended up being ruled out.
So, Fran was resigned to waiting things out until a suitable donor could be found.
“I had a bag always packed and in the boot of the car for the moment I could be called and we would have to get to the hospital as fast as possible without any delay,” she said.
“As a result, the only place we went on holiday was Kerry because we always had to be within four hours' reach of Beaumont Hospital in Dublin.”
Timing is everything. Organs such as the heart and lungs only remain viable for transplant for about four to six hours after being removed from a body. The window for a liver is around eight to 12 hours, while kidneys have about 24 to 36 hours.
The call finally came through in October.
Preparation for the operation took a few hours after the couple got to Dublin and post operative recovery was relatively quick, with her returning home with her new kidney in just a week.
But not long after getting home, she suffered a minor setback and spent 10 days in Cork University Hospital for observation and treatment after she got a small clot on one of her lungs.
“It was because of the operation,” she explained of something that can affect a very small number of kidney transplant patients.
Surprisingly, she was also left with an aversion to coffee.
“Before the operation, I loved my coffee in the morning,” she said. “I absolutely loved it. But now I cannot stand the taste or even smell of coffee.
“The taste now just revolts me.”
Studies also show how the personalities and preferences of some transplant patients end up mirroring those of their donors.
While this can be a new appreciation for certain foods and drinks, it can also extend to changed interests in things like art, music, recreation, and even career choices.
“I haven’t had any of those kinds of changes,” she says, laughing. “But health wise, I'm a completely different person.
“The transformation is just amazing.
“My eyes were gone completely yellow by the time I had the transplant.
“This is because in the last stage before kidney failure, symptoms of severe kidney damage include jaundice and the yellowing of the whites of your eyes.
“It really affected my eyesight too.
“Now, they are back to, like, 80% white.
“I was on very heavy high blood pressure medication as well, so I was going around in a fog for a very long time, maybe around ten years.
“Now, I'm not sleeping during the day because, before the operation, I used to sleep for two hours every afternoon and I found it so hard to get out of bed in the morning.
“I can eat pretty much anything I want to eat now. I also have just so much more energy. I've been going for two 30-minute walks a day since I got the new kidney.”
And, while she has lost her love of coffee, she is now back indulging in something she hasn’t for a long time.
“I can eat avocados again,” she said.
She often thinks about the donor, and wonders what happened to them, what life they had led, and whether or not they had had a family of their own.
“I can feel the kidney as it bulges just above my groin area,” she said.
“They, in effect, connect it to the top of your leg and over time, it just grows into your body as the post operative swelling reduces and everything settles into place.
“So, I have to be very careful not to hit it off anything and to make sure I don't fall or trip up.
“But it’s an amazing feeling as you are lying there and you can actually feel someone else’s kidney under your skin and know that that organ is giving you a whole new lease of life.”
While organ donation just wasn't on her radar before her diagnosis
Now she speaks about organ donation with the enthusiasm of a zealot.
“It just never occurred to me that I would be so ill to need a new kidney,” she said.
“I would urge everybody to have a conversation this Christmas about organ donation.
“Not only might you need an organ one day, but someone might need your organs.
“It could be a family member, or it could be a complete stranger.
“But it changes lives that can take an unexpected twist and I would urge people not to be like me or anybody I knew was like.
“I would urge people to open up a conversation around organ donation.
She would, in time, like to know more about her donor, but — as her surgeon told her after the operation — “now is not the time”.
Within about one or two years after donation, however, recipients can write to the donor family via the hospital involved.
She added: “The person whose kidney lives within me obviously had a conversation with their own family.
“Because they had that conversation, other lives — including my own — have been transformed.
“Please, I would urge people to have the chat.”