The MUHC Foundation's Health Matters

Best of Health Matters: The connections we build

July 31, 2022 The McGill University Health Centre Foundation Season 2 Episode 43
The MUHC Foundation's Health Matters
Best of Health Matters: The connections we build
Show Notes Transcript

This week on a special edition of Health Matters, Tarah Schwartz revisits conversations that highlight the important connections between patients and the doctors, nurses and frontline workers who care for them. Vicky Brikas shares why her family decided to fundraise for the MUHC’s Social Services department. Social worker Catherine Tessier discusses how these services help patients who are undergoing treatment at the hospital. Plus, Dr. Nadia Giannetti explains the incredible Heart in a Dish project. Sharon Steinberg details her connection to this project. 

Cette semaine, dans une édition spéciale de Question de santé, Tarah Schwartz revient sur ses conversations soulignant les liens importants entre les patients et les médecins, les infirmières et les travailleurs de première ligne qui les soignent. Vicky Brikas expliquera pourquoi sa famille a décidé de collecter des fonds pour le département des services sociaux du CUSM. La travailleuse sociale Catherine Tessier parlera aussi des services qui aident les patients devant suivre un traitement à l’hôpital. Enfin, la Dre Nadia Giannetti nous présentera l’incroyable projet Heart in a Dish, en compagnie de Sharon Steinberg.

Support the show

Follow us on social media | Suivez-nous sur les médias sociaux
Facebook | Linkedin | Instagram | Twitter | Youtube

Tarah Schwartz:

Hello, thank you for joining us. I'm Tarah Schwartz and this is a best of episode of Health Matters on CJAD 800. On today's show, we highlight the incredibly powerful connections that develop between patients, their doctors and frontline workers at the MUHC. Many of us know what it's like caring for a loved one who is going through cancer treatments, it can be very difficult and overwhelming, particularly over the last two years of the pandemic. Vicky Brikas knows firsthand what it's like to support a family member going through treatments at the MUHC. She supported her late father through his cancer journey. She joins me now to talk about that experience. Vicky, thanks so much for joining us on the show.

Vicky Brikas:

Hi, Tarah, thank you for having me.

Tarah Schwartz:

So let's begin with your dad. Vicky. Tell us a little bit about him.

Vicky Brikas:

My dad's name was Michael. He was wonderful. He was a great dad, to my brother and I. He was our friend also, which was super nice for us. My mom and him were married for about 42 years.

Tarah Schwartz:

Wow!

Vicky Brikas:

Yeah, they had a nice story. So we missed him. He was wonderful, kind hearted. And yeah, I mean, we're doing this in his memory, but for other cancer patients.

Tarah Schwartz:

Let's talk about when he was diagnosed with cancer, what kind of cancer did he have Vicky?

Vicky Brikas:

So my dad was diagnosed with the cancer of the ureter. The ureter is that little tube that connects the kidney to the bladder and it later metastasized to the bladder. At the end, it was it was pretty much all over the place.

Tarah Schwartz:

How long ago was he diagnosed?

Vicky Brikas:

He passed away four years ago, and his journey at the Cancer Center was for about two and a half years. Wow, Vicky, I know this is going to be a really lovely conversation because my dad passed away four years ago from cancer. Four years ago next month, actually. Oh, I'm sorry for you.

Tarah Schwartz:

I'm sorry too. I know, it's such a huge thing to lose your father. Tell us about his cancer journey that you mentioned at the end UHC that lasted for two and a half years. What was that like?

Vicky Brikas:

Oh, my goodness, I can't even start to praise the team at the MUHC's Cancer Centre. Everyone was so wonderful, and so caring, and so human- from the doctors, to the nurses, to the PABs, the technicians in radiation oncology. Our family is just so grateful to them forever and ever and ever. Quite frankly, I just can't put the words to it. They were just so wonderful. You know, our healthcare system is a good one once you need the system like we did, and the faces behind it are just so genuine and wonderful. My dad was well taken care of and so were we as a family.

Tarah Schwartz:

That's so nice to hear. I feel often we hear stories that can be contrary to that, that were it was difficult to access services and things were tough. But it sounds like you had such a nice experience.

Vicky Brikas:

We did. Over two and a half years, we actually became friends even with his medical team, because they were so invested in his care and in his healing. I remember at the end, when the palliative team came in and gave us the news. His oncologist, Dr. Asselah was with me, and he just started crying. At that moment, I'm like, wow, it was so moving for me because it was someone that he was losing as well. It may not have been his dad. It was really, it was really nice to see given even under those circumstances.

Tarah Schwartz:

I remember that moment to Vicky when they come in and the palliative care team has to let you know that this is the phase that they need to be moving in towards. It's such a beautiful time but it's such a difficult time. It's a difficult time to know that's where the path is going. We're speaking with Vicky Brikas and we're talking about her decision to fundraise for the MUHC social services department after the death of her father Michael. So Vicky, we've talked about it on the show before trying to make people aware that MUHC social workers are available to help all patients. When did you learn about that?

Vicky Brikas:

I did not know about the social services at the MUHC. Quite frankly, how I learned about them was through going with the treatments with my dad. I would sit at the chair with him and we had the iPad from home. We had snacks from home, just a bunch of distractions and I just keep remembering noticing a gentleman that was there by himself across my dad. It happened that we were perhaps on the same schedule as him. We saw him a couple of times he was alone. There were no distractions. There were no snacks from home. I just remember feeling just so bad for him. After my dad passed, I went to the hospital and I spoke with Anne, who's the assistant head nurse at the Cancer Centre. I wanted to fundraise for something like distractions, like an iPad or something like that for cancer patients that didn't have the support system like that. Right away she's like, Vicky, forget about the iPads what I need is money for transportation to get my patients in the door to get treatment. I just was so taken aback because I didn't think that was even an issue. She explained to me that, through social workers, they identify patients who don't have the means to make it to the hospital for treatment. I just remember being just shocked at that.

Tarah Schwartz:

Wow, that's so interesting, I feel you telling that story, seeing a patient who didn't have the kind of love and support that your father had, it moved you so deeply that you really wanted to make a difference. So you're launching your personal fundraising page, tell us about that.

Vicky Brikas:

Our family is going ahead with this fund. It's to fund the cancer arm of social services. If I may call it that I'm not too sure. So it's basically to pay for essentials for cancer patients that don't have the means. For example, groceries, hydro bills, TV, or whatever the social services deemed necessary to be paid. Transportation, of course, as well. Childcare because we forget sometimes that cancer just doesn't affect older people. It affects young parents that don't have the means to pay for childcare services, because their salaries are not what they used to be because they're sick which is something I never even realized until I spoke with Miguel at the MUHC Foundation. Groceries, bare essentials that we don't think of either. And it's important going forward. So we're starting it off, but our fund is going to be called Us 4 Them. Us is basically a community that has been touched by cancer- it's not just our family. It has touched many families, unfortunately. So we want to be the support system for those patients going through cancer.

Tarah Schwartz:

That's so lovely. I want to explain to our listeners what a personal fundraising page is, it's essentially something that anyone can do raise money through the MUHC Foundation for a cause that is meaningful to you. The way this cause is meaningful to Vicky and, and you can just head to the MUHC Foundation website, look under ways to give there you can find Vicky's personal fundraising page for families, you can start your own, it really is a lovely way to give back, Vicky, how do you think your father would look down and see what you and your family are doing in light of the experience that he had there? I know it's a tough question. I

Vicky Brikas:

That's a tough question.

Tarah Schwartz:

I know I'm feeling it because I honestly I feel... I know we're talking over the radio, but I feel we've had similar journeys and the timeline. I know like you, I think about my dad every day. I'm sure it's the same with you, especially now with what you're doing. But what do you think he would think?

Vicky Brikas:

I think he would be super proud of us all. And just, he was very, very generous man. So I think this would be super important for him as well. To want to be able to give an equally fighting chance to all cancer patients, because that's important. It doesn't discriminate, as we all know, based on socioeconomic status, but it does come with financial burdens that not everybody is able to meet. So it's important that we're there for everyone that's going through this and they all have an equal, fighting chance at this.

Tarah Schwartz:

We're speaking with Vicky Brikas. She has begun a fundraising page in memory of her late father, Michael, who passed away. She's raising money for social services and all the important services that they offer. Vicky, how's your mom doing? How does she feel about this fundraising endeavor that you're all on now?

Vicky Brikas:

We're all on it. It's my mom, my brother, and my sister-in-law and my nephew, who is two. He never got to meet my dad. So we're all going about it as we're giving back in memory of my dad. It's very important to us. The support system we had for him was super strong. We just feel that every patient should have the same support system, whether it comes in our version or any version. I mean, if we can help in any way to provide a support system for these patients. It's very important for us and I think it helps also with the grief. If I may say so. It makes it a little sweeter perhaps?

Tarah Schwartz:

That totally makes sense. Last question for you, Vicky, if you had one message for our listeners to know about social services at the MUHC, what would you like them to know?

Vicky Brikas:

First of all, that the service exists. Once you put into the system, it just goes so fast, and it's overwhelming that we don't even know all the services that are available. And there's no shame in asking to see what services the hospital offers. There are great services out there. We so encourage everyone to give any amount, and no amount is a small amount. With $50, we can pay for somebody's Bell services; we can pay for part of their hydro bill. Our goal is just to alleviate any financial stress that comes with their disease. So if we can take away that stress, and that's our goal.

Tarah Schwartz:

Do you have a fundraising goal in mind, Vicky? Are you trying to reach this amount?

Vicky Brikas:

The biggest amount we can, obviously (laughs). At this point, we're just starting out. So we haven't discussed an amount with the Foundation. But through grassroots and to encouraging other families like ours to join our cause, if we can raise $25,000; that would be great. If it's more than the Foundation will let us know and we'll happily raise the bar to whatever else is needed. But this is our goal for now.

Tarah Schwartz:

That sounds like a great goal. If you'd like to learn more about Vicky and her personal fundraising page, just head to the MUHC Foundation website, look under ways to give and you'll find personal fundraising Vicky Brikas. I want to thank you so much for sharing your story with us and for joining us on the show.

Vicky Brikas:

Thank you so much, Tarah, for having me. It was such a pleasure.

Tarah Schwartz:

Pleasure was mine. Thank you, Vicky. Coming up on Health Matters. We speak with a social worker at the MUHC to find out more about what they do and who they help. Hello, I'm Tarah Schwartz. Welcome back to a special best of episode of Health Matters. Moments ago, we spoke with Vicky Brikas. Vicky's father passed away from cancer and the experience inspired her to give back to the hospital by fundraising for the MUHC Foundation in support of the Social Services Department. Did you know that there are dozens of social workers at the MUHC who are available for any patient who needs their services? They help patients going through treatments, and they help with everything from support, to grocery expenses, to transportation costs to and from the hospital. Catherine Tessier is a social worker at the MUHC in the hematology, cancer and palliative care wards. Catherine, thank you so much for joining us.

Catherine Tessier:

Thanks for having me.

Tarah Schwartz:

So Catherine, how long have you been working at the MUHC?

Catherine Tessier:

I've been working here for a year and eight months, so not quite two years.

Tarah Schwartz:

And how's it been going?

Catherine Tessier:

I absolutely love it. I'm really happy and grateful to be working here.

Tarah Schwartz:

What inspired you to become a social worker? Tell us a little bit about your history.

Catherine Tessier:

I think like a lot of people growing up, I didn't really know what social workers did. So you can say that it was a little bit of a happy accident. I didn't always know that I wanted to be a social worker. It was very much later in life that I realized that that's that was a good career path for me.

Tarah Schwartz:

You mentioned that people don't really know what a social worker does. So why don't you enlighten us tell us what a social worker is in broad terms?

Catherine Tessier:

Absolutely. What social workers do, first and foremost, we work with the patients, with their families, with their communities. So that could be quite broad, and we work in many different settings. That could be in youth protection- that's typically the one people know; it could be in a hospital setting like myself. It could be in schools, or it can be for even community organizations. Really what we do is support patients and families and connect them with resources.

Tarah Schwartz:

And what is it like to work with patients in the words that you do? We mentioned those were hematology, cancer and palliative care.

Catherine Tessier:

So it is very rewarding. But it can be quite challenging and to be honest, it can be very sad at times; depending on how your patients do. Yes, definitely not easy, but very rewarding.

Tarah Schwartz:

We're speaking with Catherine Tessier, a social worker at the MUHC. Catherine, do you think patients and their families are aware that they have access to a social worker while they're in treatment at the hospital?

Catherine Tessier:

I think the majority don't, actually. And they are surprised sometimes when social work is consulted, and then I explained my role and they think that they're in some type of trouble. Or perhaps don't think that they would benefit from Social Services. It's only after I've explained my role and our services, but then they understand it a bit better. And often reconsider and tell me oh, great, I think I would really benefit from those services.

Tarah Schwartz:

I mentioned a few of them when I was introducing you- helping for grocery expenses, Vicky talked about hydro costs. Tell us about some of the things that you are able to provide patients with, as far as Social Services are concerned at the hospital.

Catherine Tessier:

First and foremost, big scale our interpersonal skills. So really listening to the patients, to their families, and understanding what is their reality. What are their challenges? And then seeing what we can do to help you at this moment, and this is where we use our knowledge of the resources. Yes indeed, at the MUHC, we do have a through the Cancer Foundation through Can-Support, we can help the patients. Sometimes assisting cancer patients financially with things like hydro costs and food vouchers. But in general, social workers can do so much more than that. We can connect them with a CLSC, we can find support groups for them; our goal is also to really empower the patient to be their own advocate.

Tarah Schwartz:

I love that empower the patient to be their own advocate. Expand a little bit on that, Catherine, I think that's really important.

Catherine Tessier:

I think if you're not coming from a health care setting, it can be extremely overwhelming from one day to another, to be sick to find yourself in the hospital or in a clinic. There's so many different health care workers with different job titles. You're meeting a lot of people and you're receiving a lot of information. So that is very overwhelming. Then you're just trying to understand how the system works. Where do I ask for this or for that? For us, we're really sitting down with our patients and their families trying to break it down so that they understand where they can get help, who is the right person to ask for resource A, and really empower them to not be shy to ask questions. Because often they have many questions, but they feel like maybe it's silly, or that they should know this, or they're not comfortable for whatever reason.

Tarah Schwartz:

How does someone get access to your services? Catherine Tessier is a social worker at the MUHC. She's joining us on the show today. If somebody does want to have access to Social Services, who did they talk to about it, Catherine?

Catherine Tessier:

Anyone that's involved in their care of the hospital. They can mention, I would love to see a social worker, could you please connect me with one? For example, that could be your nurse who's coming into your room -simply asking her. Sometimes the team will have already flagged a case to us. So we will go into a patient's room. Maybe before they're even aware that their case was flagged to us because we think that we can help with a particular issue that they have raised. But a patient can always ask to see a social worker.

Tarah Schwartz:

For so many reasons, I think that people or patients don't necessarily reach out for help to social workers and Social Services. What would you say to encourage them to do that?

Catherine Tessier:

I would say if you have any type of issue that is not strictly medical, and have questions and would benefit from getting a little bit extra help. Ask to see a social worker. Worst case scenario, we will redirect you to someone that's better suited than us to help you. Best case scenario, we connect you with resources that could potentially be life-changing.

Tarah Schwartz:

And what about the rewarding part? You mentioned that earlier in the interview. What is the most rewarding part of your job?

Catherine Tessier:

This sounds so cheesy, but it's really true.

Tarah Schwartz:

I love cheese. The cheesier the better... hit me with it. Hit me with it, Catherine.

Catherine Tessier:

I think the most rewarding part is really feeling like you have made a big difference in someone's life. They're really difficult moments that our patients and their families are going through when they have cancer, or one of their loved ones is in palliative care. They're very emotional days. You're meeting patients and their families on the worst day of their life and you're trying to support them as much as you can. So feeling that you're not solving all the issues, and the situation might still be sad, but it's just a little bit better because of your input; because of your help. I find that extremely rewarding.

Tarah Schwartz:

And just last question for you, Catherine. Vicky Brikas was on the show just before you talking about how much she loved the social workers and how they helped. She's decided to raise money for the cancer ward's social workers at the MUHC. How does that make you feel?

Catherine Tessier:

Well, thank you so much, it makes me feel great. Very grateful for feedback like that. I do really think that all my coworkers are so hardworking. There are so many needs, unfortunately, that we're seeing in our patients. We all want to do more, but there are limits to what we can do. I would say, thank you so much. The people that we are seeing are really in need. Whether that's emotionally going through a very dark time, financially obviously, physically since we're at the hospital. So many different spheres of their lives are being affected. So thank you so much.

Tarah Schwartz:

Thank you, Catherine, for joining us on Health Matters.

Catherine Tessier:

Thank you so much. Have a nice day.

Tarah Schwartz:

Coming up, learn more about an incredible research project that sounds straight out of a science fiction novel. It's called Heart in a Dish. Hello, I'm Tarah Schwartz. Welcome back to a special best of episode of Health Matters, highlighting the connections built between patients, doctors and frontline workers at the MUHC. Personalized care is a bit of a buzzword in the medical world right now and for good reason. It's one of the ways doctors and researchers at the MUHC and the Research Institute at the MUHC are working toward improving treatments and outcomes for patients. One project is called Heart in a Dish. It's all about personalized treatment. And it's also really, really cool. Dr. Nadia Giannetti is the Director of the Heart Failure and Heart Transplant Program at the McGill University Health Centre. Thank you so much for joining us.

Dr. Nadia Giannetti:

Thank you so much, Tarah, for having me.

Tarah Schwartz:

I love the Heart in a Dish project. It is so fascinating. It really is a heart in a dish. Tell us more.

Dr. Nadia Giannetti:

The Heart in a Dish is a large team initiative. And it stems from the Courtois Cardiovascular Signature Program, which was made possible through a large donation to the MUHC by the Courtois Foundation. What this is, is a project that's looking at a particular kind of cardiac pathology called dilated cardiomyopathy. Dilated cardiomyopathy is really a disease of the heart muscle where the heart muscle is weak. Cardio is heart, pathy is weak, and myo is muscle. So cardiomyopathy is weak heart muscle. That's really we're trying to understand- the cause of cardiomyopathy in our patients, so that we can then personalize the treatment for those patients.

Tarah Schwartz:

Do you take a portion of someone's heart and put it in a dish to study it and help find personalized treatment? Tell us about that angle.

Dr. Nadia Giannetti:

This is the fascinating thing about Heart in a Dish. This is done with just a simple blood test. We take blood from patients. A standard amount of blood, and the routine kind of poke for blood test. The blood is then processed in the lab with my colleague, Dr. Renzo Cecere. In that lab, they process the blood; it takes a few weeks, and they're able to create what are called stem cells. This is a particular kinds of stem cells, which are pluripotent stem cells. This means that they are stem cells that can differentiate into different cells. So the blood in Dr. Cecere's lab is transformed into stem cells. From that lab, we send the blood to McGill campus, into the lab of my other colleague, Dr. Terry Hebert. In his lab, they take the stem cells, and they create cardiomyocytes in the dish. So that means that we go from blood to stem cells to muscle cells in a dish. The cardiomyocytes in the dish are literally muscle cells in a dish of the one particular individual. We see them in the dish and they're actually contracting as cardiac muscle cells do. Cardiac muscle cells contract that's part of the particular feature of a heart muscle cell. So we can see them beating in the dish, which is what really what is so fascinating about this project.

Tarah Schwartz:

Yeah, I really wanted to make sure you mention that. Because when you were talking about contracting, I really wanted to jump in and say, Okay, Dr. Giannetti, this heart muscle is quite literally beating in a dish.

Dr. Nadia Giannetti:

That's right. So we can see the heartbeat of this cardiac muscle. This allows us to look much more closely. Again, this is done in Dr. Hebert's lab where they look much more closely at the cellular level at what is happening -the biochemical pathways at the cellular level. Once you identify changes within the pathway at the cellular level, then you can imagine a scenario where we would try different therapeutic options. So different medications directly on that particular person's muscle cells in a lab. So the plan or the ultimate goal is to take that one individual; take their blood, process their blood, create muscle cells, and then see what the problem is with the muscle cell. And what in particular that muscle cell responds to in terms of therapy to improve the function or normalize the function of that muscle contraction.

Tarah Schwartz:

Absolutely fascinating. We're speaking with Dr. Nadia Giannetti, we're talking about personalized medicine, and one in particular called heart in a dish. So how many hearts in a dish have you studied right now? How many patients have benefited from this project so far?

Dr. Nadia Giannetti:

So we have about 150 patients in mode and we're continuing to enroll patients. Not all 150 are at that point yet. It's a timely and costly endeavor. So we're moving forward. At this present time, we have about 25 patients who have heart muscles in a dish, and we're continuing to process the other patients. We're finding things. I'm not at the point yet where I can tell you what exactly we're finding. But we are finding variants in the different kinds of muscle cells that are being analyzed. It's really actually a very exciting project. I'm hoping that within a year or so we will have really reasonable results, and reproducible results to start talking about our findings. And really, we hope that in the near future, as I mentioned, we'll be able to really start personalizing the way that we treat people with weak heart muscles. I'm very optimistic that this project is going to yield some very interesting results.

Tarah Schwartz:

25 hearts that are currently beating in a dish. How long does it take from a blood test to growing the stem cells to growing heart muscle that is beating in a dish? What is that timeframe?

Dr. Nadia Giannetti:

It's somewhere between eight and 12 weeks. It has to be done in a very, very precise, very meticulous manner. There's a whole team of people I mentioned my colleagues that I work with, but they have they each have large teams. This is a really large team effort from the start at the MUHC where we're recruiting participants. We have a team here. There's a team and Dr. Cecere's lab, a team in Dr. Hebert's lab. So there's really just this project, there are currently about 30 to 40 people working on this project. So the scope is enormous.

Tarah Schwartz:

You mentioned that you're still not at the point where you can talk about results and findings. But when do you think you might be able to when is that? What are the next steps for this project in terms of who can benefit?

Dr. Nadia Giannetti:

That's a good question. So I look forward to talking about results and findings. Whenever we have findings, we want to make sure they're reproducible. Just to give you an example- we're seeing differences in males and females, in terms of some responses to stimulus. That would be very interesting to be able to show that. But before we start talking about results; we want to reproduce this in a large group, not just have one or two patient cells. So we're looking to be able to show that these results are robust and reproducible before we share our findings with everyone. But I expect that we'll be able to share our findings certainly within the year, we'll have some interesting findings. The goal is to then present this at meetings and peer review with other colleagues and eventually write up in journals. Again, this is peer reviewed. So this data has to be a peer reviewed, meaning that it's reviewed by other scientists and that it's reproducible. So I'm hoping that within a year, we will be able to really divulge some of the very interesting results that we are finding. So it's very exciting. I'm very excited. I'll tell you, Tarah, the reason that we got involved in this is that, in my role as the Medical Director of the Heart Failure and Heart Transplant Program here at the MUHC. We see a lot of patients that are coming to the hospital. We're a large referral center for patients with serious medical issues and in my case, serious cardiovascular issues. We see a lot of patients coming to our door, who have what's called dilated cardiomyopathy. Some are very young, some are older, some is because perhaps they've had chemotherapy that has affected their heart, some it's a familial, some it's completely unknown, some it could be a virus. Many remain kind of unknown and unexplained and they come to our doorstep into the hospital and some are really critically ill. Some of these patients need to have a transplant down the line, some of them are living with mechanical hearts. As somebody who takes care of patients and see patients, this is something that I feel very strongly about of trying to understand why this is happening to people who are otherwise healthy. Why are they developing cardiomyopathy? Why are they coming to us in cardiogenic shock? Why do they need transplants and mechanical hearts? So really, in some cases, it's a very serious cardiac condition and we really need to find answers. That's really why, to me who takes care of patients, why this is so important.

Tarah Schwartz:

We are talking about personalized medicine hearts in a dish with the MUHC's is Dr. Nadia Giannetti. Dr. Giannetti, I have just a few moments left. And I just want to ask you one question. Is this one of the most interesting science fictiony projects you've worked on? Or is this part of the day's work for you?

Dr. Nadia Giannetti:

This within the scope of the Courtois Cardiovascular Signature Program; because this is one of the studies within the Signature Program, is by far the most exciting thing that I am doing as a clinician researcher at the MUHC. Definitely. And the most exciting thing I've done in my 20-year career. We're moving forward, we're very optimistic. And obviously, we could not do it without the support of the Courtois Foundation, the MUHC Foundation, all the members of our team. I can't emphasize enough how much this is a team effort and how many people are involved to make this happen. We're very, very fortunate to be at this point.

Tarah Schwartz:

Absolutely. I cannot wait to hear more about this project. Dr. Nadia Giannetti, thank you so much for joining us on Health Matters.

Dr. Nadia Giannetti:

Thank you, Tarah. Thanks for taking the time. I appreciate it.

Tarah Schwartz:

Next up, hear from a patient with personal experience to the Heart in a Dish project. I'm Tarah Schwartz. Welcome back to a special best of episode of Health Matters. We just heard from Dr. Nadia Giannetti, who discussed her fascinating research known as the Heart in a Dish project. Researchers grow heart tissue in a dish and use that to help find better treatments for patients. Sharon Steinberg is a patient at the MUHC who has a personal connection to this project, and has made a significant donation in support of this cutting edge work. Sharon, thank you so much for joining us on the show. Welcome. You were diagnosed with cardiomyopathy. Tell us what that condition is like?

Sharon Steinberg:

Before they did anything for me, I was having trouble walking a quarter of a block without stopping to breathe. I was having a lot of trouble breathing. Then at the hospital, they fixed me up with a defibrillator and now I have no trouble going for a walk.

Tarah Schwartz:

That's wonderful. How long ago were you diagnosed with cardiomyopathy?

Sharon Steinberg:

I was having trouble for a long time. It took a while until it was it was figured out what the problem was. But I was in the hospital at the end of August, beginning of September this year.

Tarah Schwartz:

Okay. We're talking about the heart in the dish project. I think most people, myself included find this absolutely fascinating that heart tissue beats in a dish at the MUHC and they're looking for ways to help treat people with cardiomyopathy. How do you feel about being part of this project?

Sharon Steinberg:

I'm really excited. They promised me that I'll be taken to the hospital to see cells from my body beating in a petri dish.

Tarah Schwartz:

That's what was going to be my question Sharon. I was going to ask you have you seen your own heart beating in a dish? But I guess that hasn't happened yet.

Sharon Steinberg:

Not yet. But soon.

Tarah Schwartz:

You must be really looking forward to that.

Sharon Steinberg:

I am indeed I'm totally blown away by the concept of what they're trying to do.

Tarah Schwartz:

I think many people ar. We're speaking with Sharon Steinberg. A patient at the MUHC, who has part of her heart muscles beating in a dish at the MUHC; part of the heart in a dish project. Now you made a significant donation to this heart to dish project. Why did you want to support it?

Sharon Steinberg:

First of all, because I'm involved. Because there are many worthy causes that are asking for money all the time. But this is my project, I'm involved. I've always, all my life really, I was brought up to share whatever I have to share. And I can't imagine a better project. It's something that you feel identified to.

Tarah Schwartz:

We spoke to Dr. Giannetti, just a few moments before you and she was saying that she was so excited to be able to release some form of findings to her peers to the medical community within a year. Are you looking forward to hearing what's going to come up in the next year with this project and the findings that they're going to be able to release and tell us all about?

Sharon Steinberg:

Well, of course, I'm a beneficiary. I mean, there are many others. I'm just one of the large groups that are being investigated. But I can't wait, of course.

Tarah Schwartz:

And tell us what your life has been, like you said that they fixed you all up, does that mean that you're feeling good that you're able to do the things that that you enjoy doing?

Sharon Steinberg:

Totally. I was misdiagnosed that it was my lungs. But then they found out it wasn't my lungs, it was my heart. And now I go for a walk every day that the weather is permissible. I do everything I read books, I belong to a book club, I shop for my own groceries with a mask. I'm doing fine, really.

Tarah Schwartz:

When you tell people about this project, how do you describe it to them?

Sharon Steinberg:

Just like you and me. They took some blood and then they had a questionnaire. I answered my heredity and I've been told that it's not something I was born with. They just don't know why it happens. My heart was beating too slowly and now if it stops, it automatically corrects itself with this defibrillator that the doctor put into my body. And I'm doing fine.

Tarah Schwartz:

Sharon, will you permit me to tell our listeners about your donation to this project? The amount that you donated?

Sharon Steinberg:

Yeah, I guess.

Tarah Schwartz:

Well, I'm going to do it now because you said yes.

Sharon Steinberg:

I really believe that when you live well; a person has an obligation to share. I have a lot of disrespect for people who live very well and never share and I feel very strongly about that. And it doesn't have to be a lot of money, it can be a very small amount of money. But all the different small amounts make a big amount.

Tarah Schwartz:

You took the words right out of my mouth, because I have said that often. So you donate an incredibly generous $500,000 to this heart in a dish project which is going to help so many people and so many patients moving forward. And that message about donating small amounts that add up to one big amount. I love that you said that. Because you're giving this large amount of money but it doesn't matter does it? If you can give $500,000 or $20 whatever is possible.

Sharon Steinberg:

Absolutely. Because even the $20 amounts all add up to a large amount.

Tarah Schwartz:

And so what is your hope for this heart in a dish project of which you are so closely connected, what is your hope for moving forward?

Sharon Steinberg:

Well, I'm being selfish to me who will benefit.

Tarah Schwartz:

And no doubt it will benefit so many other patients who have cardiomyopathy.

Sharon Steinberg:

No question about that. But, have you heard the expression charity begins at home?

Tarah Schwartz:

This is it.

Sharon Steinberg:

There's nothing wrong with being selfish about it. But of course I care about other people that will benefit.

Tarah Schwartz:

Well, it's very exciting. I'm looking forward to hearing back from you, Sharon, when you get to see your heart tissue beating in a dish. I hope that you'll get in touch and tell us about it.

Sharon Steinberg:

Absolutely. My son promises to come in from Vancouver when it happens.

Tarah Schwartz:

Very exciting. I want to thank you Sharon Steinberg, for your incredibly generous donation in support of heart. In addition, I want to thank you for taking the time for joining us on the show.

Sharon Steinberg:

Oh, you're so welcome.

Tarah Schwartz:

I'm Tarah Schwartz. Thank you for tuning in. What would you like to hear about on the show? Write to me at health matters at MUHC Foundation dot com. You can also follow us on social media or sign up for our newsletter, just head to our website at MUHC Foundation dot com. I hope you'll join me again next Sunday. Thank you so much for listening and stay healthy.