Maria Jose Bouey has energy of the type that would inspire charming grandmothers the world over to declare she has “the spark of life!” Ironic, then, that her favourite way to tease the nurses in Toronto General Hospital’s Dialysis unit is with a pout (half concealing a grin), puppy eyes, and a chorus of “But I’m dyyyying!” This (thank God) isn’t the case, but it could be, were it not for the heroic individuals who save lives like Maria Jose’s by signing their donor cards and giving hope to people who suffer from Kidney failure.
Watching Maria Jose turn the dialysis unit into a party, it can be difficult to remember the severity of her situation, but in the moments when it strikes you, you can’t help but be in awe of Maria Jose’s hope, her enthusiasm for life, her no-nonsense positivity, and her dedication to the cause she’s spent a lifetime supporting. On World Kidney Day, faces like hers remind us how important it is to give the gift of life, and donate an organ or give blood. We spoke to Maria Jose about her journey, her first kidney transplant, what it’s like to live with renal failure, and the importance of survival.
Tell us about your first kidney transplant.
When I was born in South America, I was diagnosed with a rare congenital abnormality that effects all of the abdominal organs including the lower spine. The hospital said the best option for survival was Sick Kids in Toronto. By 8 months old, I arrived at Sick Kids, and since then I have had more than 40 major surgeries, including a kidney transplant in 2001. My mum was the donor. I was rollerblading seven days after surgery, I was recruited to be a poster child [for Sick Kids], and I went back to living a full and normal life.
How did you become a Sick Kids Ambassador?
In spring of 2000, a year before my transplant, I was recruited to do the Sick Kids Radiothon. The atrium was packed to the brim with sponsors and radio stations and they recruited me from upstairs. I was admitted for minor surgery or something that day, and they said “We’d love to hear your story.” I was about ten years old, or eleven, and my mum thought it would be a great opportunity to find a kidney. We went straight there, and radio station after radio station, message was: sign your donor card, my daughter needs a kidney, and I said the same thing. “I’m about to start dialysis, and I need a kidney, and anyone can donate. Just step up.” From then on, I became a patient ambassador, as well as the official poster child for Sick Kids for about five years straight. My face was in every newspaper and every article and every business letter, there was a picture of me being like ‘I need a kidney! Yay!’ It was a whirlwind and to be completely honest, it was amazing. It kept my mind busy, instead of focusing on the negative: the fact that my kidneys had failed fully, and my new life would be completely different. A lot of people don’t realize that after transplant you depend on drugs, and there’s everything from weight gain to new illnesses. Some people get cancer, other people end up diabetic, there’s so many risks involved, but so many great things about it as well like not being on dialysis.
What is dialysis?
Dialysis is a treatment that cleans your blood. It does the job that your kidneys no longer do. It’s for anyone, be it with renal failure, or if you’re diabetic. They also use it for purification, for example when the Stones couldn’t get into China because of drugs, they did a few sessions of dialysis to clean their blood. For most people, it’s an average of three to six hours every other day, in hospital usually, and you either have something called a graft, a fistula, or a central line, all of which are accesses or ports to get to bigger veins and arteries to purify your blood. I’m on dialysis three days a week, for on average three hours, and I have a central line.
Last year, your kidney failed a second time. Can you tell us about that experience?
I started feeling very nauseous and lethargic. I’m a very active person, even when I’m sick, so the fact that I brought it to light was very unusual. My levels had started going high. They said I was starting to show signs, and it could be a rejection, or I could be sick, or sometimes dehydration causes it as well. They said ‘we’ll do a biopsy of your kidney and check.’ They did a biopsy and no signs. They said ‘maybe it’s just scarring, or dehydration.’ Within about two weeks, I ended up in Emerg, and they said ‘your kidney has fully failed.’ The option was to start dialysis within the 24 hours, planned, or to wait until I ended up in Emerg critical. This was a Friday night, Sunday I went in for my central line to be put in, Monday morning first thing, my first session of dialysis. And that was it, I had lost my kidney overnight, and there was nothing they could do. The only option was a transplant, and the wait for me, for my blood type, is seven to nine years.
How did you feel while all of this was happening?
It was very intense, to say the least. First of all, it’s my mum’s kidney, so it’s like I’m losing a part of someone who’s tried to save my life. It was one of those things where you say ‘what if I leave the country? It won’t be this way! Maybe if I don’t think about it I’ll be fine!’ But you have to step up to the plate, and take it for what it’s worth. For me, it’s never an option to not survive, so I just say, yeah, go ahead, anything that works, we do.
What is it like, being on dialysis three times a week, every week?
Dialysis, in my opinion, is not life. It saves your life, don’t get me wrong, and if I need to do it for twenty years because there’s no transplant, I will do it and proud, but it consumes your life. I am fortunate: I’m young, and healthy, and pretty stable, and I’m very active, but for example, having a central line instead of a graft or a fistula, you can’t go swimming because of risk of direct line infection. The line goes directly to the chamber in front of your heart. If I get an infection, that’s like instant blood infection. Your day to day routine is consumed because you’re on dialysis. You don’t feel well, you’re tired, your life is put on hold for survival, so the option is just to keep going.
Tell us about the first few months living with renal failure.
The moment I found out that I had renal failure, I was kind of left in the dark. No one said, “Oh, here’s what you can do, or here’s information” or anything, they just kind of throw you into this new world of dialysis and renal failure and side effects and everything without teaching you that much or giving you more options. Since my list was 7-9 years wait, the only thing that came to my mind was “I feel so alone.” So I took to the internet, and I started blogging, and within the first 24 hours I did a video blog, and I got like 400 views or something. I wasn’t alone. There’s thousands of people, hundreds of thousands of people, there’s more than 30, 000 Canadians on dialysis and waiting for an organ. The list just gets bigger every year, so I took to the internet, like “I need an organ, I need a kidney, sign your donor card, donate blood, do anything you can.” There are 50 or 60 people on dialysis every single day with me, times three times a day. If that helps one person, that’s all that matters.
Tell us about finding your new kidney.
Four months [after my kidney failed], I found out my friend Amy had decided to do testing without telling me, and see if she was a match. She sent me a Facebook message and said, “I love you like an older sister, it kills me to see your status updates.” She got tested, her whole family got tested, she was a perfect blood match, and she said “I want to give you a kidney.” So we brought her to Toronto General to do the official work up, and we found out that my cousin had already started the testing process and didn’t want me to know anything, so that I wouldn’t get my hopes up in case it didn’t work. They went through the testing, and by August we discovered they had both passed all the testing. August, my cousin started losing weight. He was critically overweight, and Amy was legal now, she was over 18. By December 5th, we found out that both, for the first time ever in hospital history, were perfect matches. An average of about 70% of the donors that step up are denied. It came down to choice, who the donor would be, and for me that was a really big deal, because these are two people who have offered to save my life, so how could I say no to either one of them, or how could I say yes? They’re putting their life at risk through surgery to save my life, and other people hadn’t offered that, and other people don’t have that. We finally came to a decision, along with the doctors and the transplant team, that Mauricio, my cousin, would be the better option because he is older. Amy could still have children, and your body goes through a few changes then. It’s more of an impact if you have only one kidney. Now I’m hitting a year on dialysis, and I am hopefully a few months away from transplant, with my cousin who has lost 75 pounds since August. He needs to lose about 20 more pounds, and then I start desensitization, which is drug therapy. From the last dose, within 48 hours, I get my kidney. Fingers crossed, we get it hopefully before the summer ends, and just keep going.
What are you excited to do once you are off dialysis?
One of the things that people don’t realize is after transplant you’re in a lot of quarantine for about three months, because you’re fully immunosuppressed. After those three months? Get my central line out, which will be amazing to say the least. I really just want to travel, and do things that I haven’t been able to do, everything. Go back to school, finish school, travel the world, and give back. Every single patient that I’ve met here needs a donor, so just pay it forward.
What are some things people can do this month to help?
There’s a run that happens at the end of March. Sign your donor cards, donate blood. When you renew your license or healthcard, you can go there. [For more information on how to become an organ donor, click here.You can go to your local hospital or clinic and let them know. Donate blood anywhere, at a Red Cross, or donor clinics all over the city. Just give back, bring awareness even. Just saying, ‘Hey, do you know you can donate an organ? Do you know you can save someone’s life while you’re alive?’ You won’t die, you’ll live a perfectly normal life, not just with a kidney, with anything. There’s hundreds of thousands of people who need different organs, a piece of a liver can save someone’s life. You don’t need a whole liver, and it grows back. Sign your donor card, donate blood, wear a green ribbon. Put it as your status for the month, bring that awareness. Go to your local dialysis unit at your local hospital and say, ‘hey, is there anything you guys need? Can I help?’ People spend hours on dialysis and have nothing sometimes, no visitors, no friends, no family. Take some magazines in. Be aware and take care of your kidneys! Drink lots of fluid, don’t eat too much salt, keep healthy! If it’s you in that situation, it’s really difficult. If you want to help someone, help yourself as well.
What are some of the lessons you’ve learned from your experiences?
You’re not alone. Don’t think you’re alone, and don’t give up. There is always going to be an option. There’s always going to be a better option out there. Your time will come for your transplant. It may be a few years wait but it’s worth it, it’s worth the wait. Having any kind of organ transplant, it’s worth the wait. It’s hard, but don’t give up. Every struggle you have will make you a better person, and there’s thousands of people out there who are living through that, so don’t feel alone. Just like cancer patients, you have to unite. Don’t be ashamed of it, don’t be ashamed that you’re sick, be proud that you’re a survivor. Be proud that you’re still alive. If you need help, ask for it.
I’m Catholic, and faith for me has been a huge thing. But for anyone, you could be Buddhist, you could be Catholic, Christian, Jewish, anything, if you believe something is right, do it. Be proud and do it and trust your instincts. That’s one of the biggest things. The other thing would be, never forget the people you meet. I have been touched and blessed and inspired by so many people along my path, be it the child that I met at Sick Kids who broke their leg, or an adult who has been on dialysis eighteen years. These are people who understand better than anything else what you’re going through, and you’re not alone in anything. Never compare your illness to anyone else, because I’ve never broken a bone, but I hear that’s painful. Dialysis is not painful. There’s a world out there that people don’t know, and it’s the medical world, and people are living through really hard things. Just be aware. Know that you’re not alone if you’re in that situation, or know that there are people out there that need help if you’re on the other side of it.