The beauty queen opens up about how she manages her disorder and her hope for CKD treatment in the Philippines.
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The beauty queen opens up about how she manages her disorder and her hope for CKD treatment in the Philippines.
Kai Magsanoc: Hi, everyone! Welcome to #CoffeeWithKai here on HelloDoctor.com.ph. My name is Kai Magsanoc, editor-in-chief of Hello Doctor here in the Philippines.
With me today is someone who is really very special to me. I met her when she was 23, and that was the year she won Miss International for the Philippines, after a long — more than a 20-year — break from the last winner of the title. I’m proud to say that she’s also my son’s confirmation godmother, so she is my — in the Philippines, we call it kumare — a female friend who is closer than a sister.
Everyone, please help me in welcoming Miss International 2013, straight from Canada, Miss Bea Rose Santiago. Hi, Bea!
Bea Rose Santiago: Hi! Aww, that’s so sweet, I’m gonna cry. The sweetest introduction ever.
KM: Well, the nice thing about my job now, with Hello Doctor, I am grateful that I am able to bring my friends in to help me inspire people, patients who are watching, and who are reading, ‘cause we are going to transcribe this interview and place the text when we publish it on the website.
But Bea, we have the chance to change the lives or touch the lives of 200,000 readers of Hello Doctor. Whether they are patients like you, or whether they are people who care for patients, right? So thank you so much for letting us take some of your time tonight, it’s a Tuesday night there in Canada. Thank you, Bea.
BRS: It’s my pleasure, it’s my pleasure. And I haven’t seen you in a long time, this is nice. Thank you for having me, this is nice.
KM: Of course! So what’s life like in Canada? And what do you miss about the Philippines? I think that question begs to be asked.
BRS: Well, we just opened our patios, yay! And some restaurants are finally open, and some establishments, but our salons are still closed, our gyms are still closed. But at least for a year, we were trying really hard, because we had so many COVID flare-ups.
Every time we tried to open like the rest of the world, we tried to do it the European way, but it didn’t come through. We had a lot of rising, and then going down, and rising.
Now, hopefully it’s plateauing because we’re actually having a lot of pop-ups for vaccines. So, we’re really, really, really wanting to vaccinate everybody, and we’re promoting to do that.
We’re happy, or I’m happy, because as an autoimmune patient, I really want everybody to be vaccinated, so that we can finish this, get it over with, and I can finally inhale-exhale and relax and not think everybody’s gonna kill me, you know what I mean? Because if you’re like me, and a simple flu can take us to the ER, how much more a COVID virus?
So I’m finally getting a little — my anxiety is finally down, I’m happy. I got to see some friends last weekend, so that’s good.
What I miss the most in the Philippines, obviously, are my dogs. And I have a new adopted puppy that I really wanted to be with and train, but I couldn’t. But that’s just all of the disadvantage that comes with what’s happening around me, aside from the pandemic.
I’m also awaiting my surgery, but I’m excited to go back to the sea. I miss the beach, I miss hanging out with friends, I miss talking to you, and I’m very excited to see the new life of Bea Santiago after.
Because for 3 years, I dedicated that time just concentrating on healing and understanding and pretty much getting to know myself again. And then after that, I’m excited to see a whole new world again, and especially with the pandemic ending, hopefully, it will also be a new reality for everybody.
So that’s what I’m most excited about for the future.
KM: Okay. So for those who don’t know, Bea is actually an animal rescue and adoption advocate also, and we’re on the last day of June here, and she’s an LGBTQIA+ ally. So she’s part of The Red Whistle, they were part of our Facebook Live last week, our most successful live to date.
So Bea, in 2018, that was also the year we were last in touch, that was when you revealed you suffered from chronic kidney disease. And I’m asking you this question now, also as a friend — How did you find out, Bea? What were the symptoms that you saw and that you felt in your body?
BRS: Mmhm. When I was 17, I was diagnosed with IGA Nephropathy. It’s an autoimmune disease that basically — your white blood cells, instead of going through your kidneys like normal beings, mine didn’t, they stayed.
So over the years, I guess because of stress, I was sent to the hospital for — I think twice or 3 times. I had really, really bad food poisoning twice, and also I got dengue, and on top of that, I had a really, really bad flu a few months before I was diagnosed.
Before I was diagnosed, I wasn’t really feeling anything, Ms. Kai. There were no symptoms. I was just tired. I was tired all the time, and I was very moody. And I was puking, I was puking a lot. At first it was once a week, then it became twice a week, until it became once a day. The last was probably the whole day, I had this massive headache for 3 days.
At first, I thought, “Oh, maybe it’s just because it’s so hot.” It was summertime, I thought maybe because it’s just really, really hot in the Philippines. So I just kept drinking and drinking water, but then I would puke it out.
And then I would rest the whole day that day, and then I said, “No, this isn’t good, let’s go to the ER.” And when I went to the ER, I thought I had a brain aneurysm because my head was about to explode and I was puking. And then when they said — when they got a sample of my blood, and we did some extensive tests in the ER, that’s when they said, “Something’s wrong with your kidney. You have really, really high creatinine.”
I said, “I don’t know what that means, but I had IGA Nephropathy Stage 1 when I was 17. I was diagnosed. I got sick when I was 16, I was diagnosed 17. Took them a year to diagnose me. Then they had to thoroughly check me. I stayed for two weeks, and they tried to flush out my kidney to see if it would still work. So my kidneys didn’t really ‘awaken,’ I guess?”
So we had to do a biopsy, ‘cause I was perfectly normal. The doctor was so amazed that I looked okay, feel okay, had no other problem except [for] after giving me saline, that’s when I started bloating and I had bruises around my body. That’s [not] normal for anybody, like a small bump, there was a bruise. That was the only symptom I had, but the biopsy really revealed that I had 15% working — I mean, for my kidneys, they were at 15% only.
That was a shock for everybody because again, I was living a very healthy lifestyle. I work out, I eat very healthily, I choose my food, I don’t even drink anything that’s bad for you, so it was a big reveal, and the biggest question was how did it happen?
But then I looked through it and I said, “These are the factors that happened before I got to here.” And so the doctor said, “Well, because of your IGA Nephropathy, and you had stage 1 when you were 17, over the years, your kidney was affected by all of the times you were sent to the hospital.” So, that’s what happened.
KM: So what were the identified causes, Bea? What were the identified causes that brought your kidneys to that point in 2018? I read on abscbnnews.com in 2018, you mentioned don’t drink too much energy drinks before workouts or something, but I wanted to know if there were more causes that had been identified?
BRS: We really try so hard to look into it, especially here, my doctors in Canada, because they don’t believe that it just could happen, aside from my IGA Nephropathy. Then they said, “Yeah, because of your IGA Nephropathy, anything is possible, and possibly could have hurt my kidneys over the years.”
Like my dengue, I was in the hospital for a week. I barely touched food. I was feeding off just a little bit of the meal replacement. That’s what I was eating for one whole week because I just couldn’t do it. I was also hospitalized because of food poisonings. So those factors really hurt my kidneys over the years. And the fact that I had a really stressful life also, going through there.
At first, we thought it was because of the pre-workouts, because I used to drink off my boyfriend’s pre-workout [drink], which is diluted with water already. Unlike other people who would just take it like a shot, which is very, very crazy and unhealthy. I would drink it, dilute it with water, plus, I half it with another person. It’s not like I drink it myself, I would only drink two shots because I don’t need that much adrenaline.
We thought because of that, the pre-workout caused the problem. But after going through more and more extensive tests, it wasn’t. The results of the tests that came from my blood, it pointed out other difficulties, like there were some things — I think my phosphate, and I have an iron deficiency problem. All of those factors are not related to pre-workouts, so we ruled out pre-workouts right away.
But at that moment, we thought it was because of pre-workouts because my creatinine was high. Usually, if you take pre-workouts, so much protein is in your body that your creatinine would go so high. But aside from my creatinine, other levels were malfunctioning, it was up and down, and I had to take some iron shots…every other week. Now it’s weekly, but during that time, that’s what I had to deal with.
I think at that time, we were all confused at first, and we were all questioning it, because I looked very healthy. The doctors were all amazed, like I have no problems, I still walk, I still pee, Ms. Kai! I still go to the washroom, even after 3 years — two-and a-half, three years of dialysis, I still go to the bathroom, which I’m so thankful for and I’m so lucky, because a lot of dialysis patients don’t, they don’t pee anymore.
But I still have that simple, going to the washroom, that’s a blessing for dialysis patients. And a lot of people say, “Oh my god, you still pee?” Yeah I can, and I’m so happy, and lucky.
KM: Yeah, hooray for simple joys, right?
BRS: Yeah, simple joys! I urinate, my kidneys’ doing that.
KM: Yeah. Well, also because you’re a fighter, Bea. You wouldn’t have gone down without a fight, right?
BRS: I think that, too, because apparently, I could live with IGA Nephropathy, that autoimmune [disorder], without it flaring up and causing my kidneys to fail. But eventually, in the future, it could have happened.
I guess it’s a bittersweet scenario where it happened to me now that I’m younger and my other organs are so strong and healthy, that I won’t be sick. If this happened to me 20 years from now, that would be a whole different experience.
KM: Yeah. So Bea, after getting the diagnosis here in the Philippines, you chose to go to Canada to get your treatment. Why? And what treatment have you been doing for the past — going 3 years this year, right?
BRS: My mom’s very close friends with a lot of renal nurses in this hospital that I go to a lot. The hospital’s name is Toronto General and there’s a lot of Filipina nurses there. There’s a group of dialysis nurses that works there that are super close to my family, especially to my mom.
So when my mom was asking for help and voicing out her concerns towards me, they said, “Take her here. We have a new standard of dialysis so Bea can really, really be improved, and can help her life.” And the fact that my mom, and my sister, and my brother could be my donors. That was also the reason why we flew here, and the healthcare system, obviously. I had to.
And at that time, I think I was in denial, Ms. Kai. I did not believe it, because I didn’t feel sick. So when I reached here, I stayed with my family, I didn’t even do dialysis at that time. I was with my family, and I would still go out and all [that]. I started feeling dizzy, and faint,and I had to be rushed to the ER in Toronto Gen, and then that’s when they said, “You have to be admitted now.”
And I was admitted for another two weeks there. Because my — I was in a situation where they didn’t know if they would have to dialyze me, or they still had some hope that they wouldn’t have to dialyze me. I was in the middle, basically. But then when I started getting more tired, that’s when dialysis was the first option.
And I think moving back to my family here in Canada is also one of the reasons why I’m looking — I don’t even look like I’m sick. A lot of people don’t even believe me that I look like — I don’t look like I have failing kidneys, basically. That’s what they’re saying.
I think that’s because of my home hemodialysis. I’m doing 8 hours every night, 5 times a week. And a lot of people in the Philippines are questioning that time. I’ve seen so many reactions on social media saying, “Oh my god, maybe she’s in a critical condition.” “Oh, maybe she’s in bad shape.” “Maybe she’s about to pass away, that’s why there’s so much dialysis time.”
But it is a new — I think it’s a new technology, it’s a new way of extending our life because apparently, from research, people who are doing the same dialysis as I’m doing, home hemo, our life expectancy is as long as those with transplanted kidneys.
So there’s a way to live with dialysis, and that is called home hemodialysis. And yes it is 8 hours a day, but you do it at night, when you’re sleeping.
KM: So you do it on yourself, Bea?
BRS: Yeah. I am my own nurse, I am my own instructor, I am my own cleaner, and everything, yeah.
KM: Well hopefully someday soon, that kind of dialysis will also reach the Philippines.
BRS: Yes, I really hope. I actually have a doctor, one of the doctors in St. Luke’s went to Toronto Gen, to the clinic that I go to. The doctors that are handling me, they — it’s also a learning school.
KM: It’s a teaching hospital.
BRS: It’s a teaching hospital, yes, so some of the doctors from Saint Luke’s actually went there for a year. And when I went to dialyze in Saint Luke’s, they were all like, “Oh my god! I’m so happy to see someone doing her own —” ‘cause I was doing my own thing.
And they were all so shocked, “Why is she touching her tubes?” “Oh my god, why is she cleaning herself?” But the doctor who went to the hospital to learn, she was so proud of me, and she was so happy to show me to the nurses like, “This is the way they do it in Canada.”
I don’t even use gloves, Ms. Kai, but my fingers are always so dry because we wash our hands like 10 times before we dialyze, because you have to be super sterile. My room is very clean, I clean it almost every day, because I’m just afraid of — because I have to do it myself here, and I don’t wanna go to the hospital because of COVID.
But pretty much, yeah. I’m so fortunate that I never experienced infection, thank God. And yeah, a lot of people ask me how I do it, I couldn’t say how to clean your own — everything, because I went to class for it, I was trained for it in the hospital, you have to train before you go home, ‘cause I have my machine at home.
So for people in the Philippines, you have to go to some sort of seminar and a class with teachers and nurses to see if you’re good enough to do it yourself. If not, you’re going to have to dialyze at the hospital.
KM: Okay. So, how has your life changed, Bea? What have you put in place so that the quality of your life, given that you’re dialyzing right now, you’re doing it yourself, but what other things have you changed so that the quality of your life moving forward does not suffer, but instead gets better?
BRS: A lot, actually. A lot of — my life changed drastically overnight, because of my situation. And I hurriedly had to leave everything behind in the Philippines, including my work, my career as a beauty queen, as a host, and as a newbie in the acting industry.
And when I moved back here, I had to deal with living with my mom again, and my brother. And I had to face long-lost friends that I haven’t really talked to for almost 8 years, because I haven’t been back for almost 8 years here, so I had to reconnect, and I had to really find out what I really want in life, I had to find out who I am now as a 31-year old woman.
And I have to go deeper into what I really want and my purpose, and why I have to do those things, why I have to do the things I have to do.
So it was like a bittersweet experience where I had to be stuck alone in my room, but I also had to reconnect with myself in a deeper manner, and I also had to reconnect with my family, because I haven’t been with them for years. To see my brother all grown up is a different story, and to see my mom have more white hair than usual, it’s a blessing in disguise to be sick and be home again, and be stuck with my family.
It’s a very humbling experience.
What I went through for me, in my head, thankfully I have a very supportive boyfriend who always tries to push me into more positive thinking. And everytime I go into this negative emotional [state], he would always try to uplift me, and see the world in a different place. Like, “Hey, if you didn’t get sick, you wouldn’t be close again with your mom, you wouldn’t be close again with your brother. You wouldn’t have this sisterly bond that you have now.” I went to therapy, and I also had to go through past trauma and really help myself get out of that.
So I’m very proud of myself to say that I’ve forgiven myself from all the 31 years of things that accumulated. I feel reborn, I feel refreshed, and it’s been amazing. It’s been a journey, and I’m still there, but I can’t wait to see what all of this is for. You know what I mean, Ms. Kai? I always believe kasi there’s a reason for everything, and the reason why I had to go through this, and why it had to happen now.
I can’t wait to see the ending and to remember all of this and to see what I’ve gained. Right now, I’m gaining a lot. I see a lot of love, I see a bigger world for me to explore, I see friends and connecting to them again. It was lovely.
Like to you, it was lovely to see you again and to reconnect with you, and for us to have a different kind of talk again. Because our talks when I was 23 were funny, now it’s different, so it’s nice to sit back and to watch myself go through — just in the past 3 years, it’s been amazing and I feel proud of myself to be this far and to be this strong, I guess I can say that.
KM: That’s good. That’s good Bea, you have to pat yourself on the back because what you’re doing is very empowering, right? Along with the physical healing came the spiritual healing which I think is really important.
So let’s talk to the people watching this interview who do not have kidney problems. Let’s be a little more practical, let’s hear your tips. What tips would you share to our readers or viewers on how to keep their kidneys healthy from what you’ve learned?
BRS: For non — unlike me? People who are healthy?
KM: People who are still healthy, because the two kinds of people who go to our website are those who are looking to prevent getting sick, because in the Philippines, no one can afford to get sick. The other type are the patients already.
But let’s talk to those who are working on a healthier lifestyle first. Me, Bea, tell me, how do I keep my kidneys healthy? As of right now, speaking with you, I don’t — hopefully I don’t have problems yet, so how do you think I can keep my kidneys healthy?
BRS: Yeah, sorry, thank you for explaining, Ms. Kai. I couldn’t really focus because looking at myself in a screen is weird.
Honestly, my only advice is stay away from stressful scenarios, stay away from stress, stay away from stressful people. Focus on yourself, love yourself, eat healthy. Because if you focus on yourself, if you focus on loving yourself, things will eventually happen. You will start eating healthily, you will feed yourself with good vibes, a stress-free environment, and just letting go.
I believe because of going through the therapist, and the type of therapy that I went through, apparently kidney issues are from fear. So if you’re living in fear, get away from that. Because apparently it causes a lot of damage to the kidneys, so that’s what I got because I was very fearful of my future, and that was one of the reasons why I think I’m in this situation right now.
So what I can say is, and what I always tell people is, if you don’t have to drink, don’t. If you don’t have to smoke, don’t. I mean don’t drink, don’t smoke at all if you can. And choose what you feed your body. It’s really true what they say when they say your body is a temple. You give your cars the best fuel, why don’t you give your body the best fuel?
Because what you’re feeding your body, not only will it feed your organs, but your brain and the happy hormones. You really have to take care, better care of your emotions and your spirit, and that I think is the most important, aside from going to the doctors yearly.
And drink lots of water, water’s important, nothing else but water.
KM: Okay. So the last question, your fellow CKD patients who are here in the Philippines, what would you share with them to keep their spirits up? Like yours?
BRS: I know that it’s hard and there’s a lot of questions in your mind, there’s a lot of confusion, and a lot of denial, but eventually — I can’t really tell them to stop thinking like that, because there’s a process, and trust the process. Always trust that there is always good at the end.
I really believe there’s always a reason for everything, and maybe you don’t see that reason for now, in the future, you will see. You will be so proud of yourself after this, you will be so amazed with how strong, how beautiful, how amazing you are.
All of these things are supposed to teach us something, it is supposed to teach us something, and we’re gonna learn from it, you just have to see it from a different view. But patience is a virtue, over time you will see what I mean. You might not see it now, but you will see. Take a deeper look at yourself, and really, really try to love yourself even in this situation.
Because there will be a lot of deep questions about why it happens, deep questions about — you’re gonna lose friends, you’re gonna lose family members, you’re gonna lose yourself along the way. But after you really have to wake up, you yourself have to help yourself. No one else can help you, especially when your spirits are down, you have to help uplift yourself. Anything, dance, eat, whatever makes you happy, just don’t do it everyday.
If it’s a bad kind of food, don’t eat it everyday. And be patient to yourself, because eventually, everything will fall into place and you will see the light after. Because you really have to help yourself. It’s gonna be hard, but you just have to go through this in order for you to really survive, and be the strong person you always wanted to be.
KM: Okay. Well thank you for that Bea, that ends our interview for today. Thank you everyone for joining my catch-up with Miss International 2013, Bea Rose Santiago. Not even a beauty queen is spared from adversity.
But the beauty of that is adversity builds character, and I can hardly recognize the woman I’ve just been chatting with for the past almost one hour. She’s definitely gotten more wise and calm, from the Bea I met who was just gearing up for the competition in Japan.
So thank you again, I hope you enjoyed this Hello Health Heroes interview featuring Miss International 2013 Bea Rose Santiago. Until the next one, thank you and be well.
Hello Health Group does not provide medical advice, diagnosis or treatment.