The MUHC Foundation's Health Matters

Helping health care workers and patients

August 07, 2022 The McGill University Health Centre Foundation Season 2 Episode 44
The MUHC Foundation's Health Matters
Helping health care workers and patients
Show Notes Transcript

This week on Health Matters, guest host Kelly Albert discusses multiple myeloma with Dr. Michael Sebag and how immunotherapy is helping patients living with this cancer. Assistant Nurse Manager Cristian Machuca describes how a new piece of equipment could be a game-changer for patients needing blood tests. Dr. Donald Vinh explains the COVID-resistor research project at the RI-MUHC. And, Uzema Jeena who has received more than 700 blood transfusions shares her story. 

Cette semaine à Question de santé, notre animatrice invitée Kelly Albert discute de myélome multiple avec le Dr Michael Sebag, ainsi que de l’immunothérapie qui aide les patients atteints de ce cancer. Cristian Machuca, infirmier gestionnaire adjoint, décrira aussi comment une nouvelle pièce d’équipement pourrait changer la donne pour les patients requérant des tests sanguins. Le Dr Donald Vinh nous parlera également du projet de recherche COVID-resistor de l’IR-CUSM. Enfin, Uzema Jeena nous racontera l’histoire de ses plus de 700 transfusions sanguines.

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Kelly Albert:

Hello, thank you for joining us. Tarah is off this week. I'm Kelly Albert, and this is Health Matters on CJAD 800. On today's show, philanthropy can be so much more than donating money. We discuss the many ways that you can contribute to further research and help the doctors, clinician-scientists and researchers at the MUHC. And, have you given blood lately? The blood supply in Quebec is quite low, we discuss how you can help with a patient who has received more than hundreds of transfusions in her life. We begin today with a discussion about multiple myeloma. The Canadian Cancer Society estimates that about 4,000 Canadians will be diagnosed with this type of cancer in 2022 and 1,650 Canadians will die from it. While there's currently no cure, doctors at the Research Institute of the MUHC are working to find better treatments for patients living with multiple myeloma, including Dr. Michael Sebag. He is a hematologist at the RI-MUHC. Thank you so much for joining us, Dr. Sebag.

Dr. Michael Sebag:

You're welcome. Thank you for having me.

Kelly Albert:

To begin, in general terms, what is multiple myeloma?

Dr. Michael Sebag:

Multiple myeloma is an interesting cancer. It is a cancer. It's a cancer of the B cell lymphocytes. These are cells that normally produce antibodies, for example, and they're called terminally differentiated. And that is, when they differentiate into antibody-producing cells. They reside in the bone marrow, at which point they're called plasma cells. So when these cells become malignant or make copies of themselves and accumulate in the bone marrow, we call it multiple myeloma. It's called multiple for multiple reasons. One of which is it has multiple clinical phenotypes. So it will produce anemia, it can produce bone disease, it can produce kidney disease, and otherwise occupies space in the bone marrow that would be normally used to make normal cells.

Kelly Albert:

That can have a huge impact on a person's day to day life. Not only dealing with the cancer itself, but all the repercussions that could occur because of this cancer.

Dr. Michael Sebag:

Exactly. Patients often present with bone disease, for example, where they have fractures, sometimes spinal cord involvement so neurological compromise. Pain is a common feature. And, it can also present most commonly with anemia; so fatigue, shortness of breath are the two most common presenting features.

Kelly Albert:

And is that how many people discover that they have this type of cancer? Is the sort of the symptoms anemia, maybe some fatigue that is associated with that, or some bone issues?

Dr. Michael Sebag:

Yes, absolutely. It's rare enough that many doctors don't think about it immediately. But it's certainly something we're taught as we move along in our training. By rare, I mean approximately six to seven per 100,000 is the is the incidence. But non-specific symptoms of fatigue, and some shortness of breath can lead to a whole differential of diagnoses. But once anemia is established, and the cause is examined, they'll find the characteristic features of myeloma in the blood.

Kelly Albert:

We're speaking with hematologist, Dr. Michael Sebag about multiple myeloma, a type of cancer that affects plasma cells. I mentioned there's currently no cure for this condition. What is the current treatment for patients with this cancer?

Dr. Michael Sebag:

So The current treatments and they're plural have really evolved at a very quick pace over the last 10 to 15 years. It really is a disease that's benefited the most from research out of just about any cancer that I know of. It's certainly not treated the same way now as it was when I started many years ago. We sort of dichotomize our patients into- Are they able to withstand an autologous stem cell transplant. That is patients that are strong, fit enough and young enough, generally below the age of 70 to withstand high doses of chemotherapy followed by an infusion of their own bone marrow or peripheral blood stem cells to rescue the bone marrow once these high doses of chemotherapy have been given. Versus those that are a little bit too old, or have some sort of medical condition that prevents them from having an autologous stem cell transplant. With that in mind, we start patients in both categories on what we call an induction therapy. Generally, it's a combination of medications that are specifically targeted for myeloma and don't involve chemotherapy for the most part. For patients that are not eligible for a transplant, they now receive a combination of immunotherapies. These are antibodies that are directed against the myeloma cell and enable their own immune system to destroy it. This is continued until progression; typically, will last five to seven years or so, before the disease inevitably comes back. For patients that are eligible for transplant, they receive another combination of targeted therapies followed by the transplant and a maintenance therapy that continues with pills until progression. Again, that continues for at least five to seven years before the disease inevitably comes back. So while there is no cure for the disease, there are a lot of options even when the disease does come back.

Kelly Albert:

And so patients with multiple myeloma, can they live a fairly regular life once they start the treatments?

Dr. Michael Sebag:

For the most part, yes. Very often, when they come in with anemia, the anemia resolves very quickly once we start treating them. So the symptoms of anemia disappear. The bone disease a little bit trickier. Obviously, if they've had fractures of the spine, and they have vertebral compression fractures, those typically don't improve. There may be some deformity and some impairment from these that may remain permanent. Very often the pain that is associated with the disease does get better. And we do have services that help with pain management. With the treatment of the disease itself, the pain does improve, and most patients will go back to a fairly normal life. But one in which they receive constant attention and therapies, we really don't let them go. They really do get the sense that it becomes a chronic disease, much like diabetes or hypertension, where they're always taking something.

Kelly Albert:

I'm speaking with Dr. Michael Sebag. He's a hematologist at the RI-MUHC and the MUHC. You mentioned earlier that the treatments have changed significantly since you started your career. What is that like to be studying a cancer, to be working in this field, and see the evolution that has occurred probably even in the last five years.

Dr. Michael Sebag:

I think it's very exciting. In meetings that we attended and we present at, we're constantly reevaluating the way we treat the disease. We're coming up with new strategies based on science, and some of them sound like science fiction, quite frankly. Or at least, they did when they were first presented a few years ago. All of a sudden, here they are, being not only tried; but tried successfully on patients. In particular, new therapies that really exploit the patient's own immune system. In this case, we're talking about either T-cell engagers or CAR-T therapies. These are therapies that manipulate the T lymphocytes- these are really the cancer-fighting lymphocytes in the patient's blood that are not very effective in myeloma, the myeloma has escaped these mechanisms. But we harness them, we sort of force them to do our biddings by various means, and then employ that, and give that back to the patient and have them fight the disease rather than a drug. This has been quite effective. And while only one is approved right now, and none are actively being given in Canada; we're working towards having this reimbursed and given as a standard of care very shortly. And we're quite excited about the results.

Kelly Albert:

That's really fascinating. And I think it leads me to my next question. We talk a lot about big dreams at the MUHC Foundation and a lot about the dreams for the future. So do you hope- as your career progresses, as we continue getting closer to better treatments and more treatment options, that this will be standard of care?

Dr. Michael Sebag:

I think so. Again as I said, I'd never would have believed that we would have had therapies of this type in this disease. Never in a million years; yet, here they are. To me, they've remained science fiction until now they're being actively used. So for sure, research and the funding that that is necessary for research has had a positive impact, and has led to really a betterment of patients' lives and a prolongation of their survival.

Kelly Albert:

That's incredible. Dr. Michael Sebag, thank you so much for joining us on Health Matters.

Dr. Michael Sebag:

You're welcome.

Kelly Albert:

That was Dr. Michael Sebag, hematologist at the RI-MUHC. Coming up on Health Matters, the blood supply in Quebec is low. Find out how and why you should donate today. I'm Kelly Albert, welcome back to Health Matters on CJAD 800. Hema-Quebec is urging Quebecers, who are able to donate blood, to make an appointment. Especially if you have A-negative, A-positive or O-negative blood. If you've never donated blood before or if you're not a fan of needles, you might be a little bit apprehensive, but it is an easy appointment, and you get a snack! Cristian Machuca is an Assistant Nurse Manager in Adult Ambulatory Medicine at the MUHC. And he's joining me now to talk about this subject. Thank you so much for being here.

Cristian Machuca:

It's my pleasure. Thank you for having me.

Kelly Albert:

Let's get to know a little bit about you. How long have you worked at the MUHC?

Cristian Machuca:

Oh I'm a long hauler at the MUHC, over 20 years now.

Kelly Albert:

Oh, wow. Incredible. You've been through a lot, you've seen quite a bit, you've worked throughout the pandemic. Particularly when Hema-Quebec says this and reaches out to the public saying the blood supply is low. Why is it important for the blood supply not to get too low in the province?

Cristian Machuca:

Aside from the notion most people have that when there's been an accident or whatnot, people need blood urgently. That's actually a very small percentage of the blood that's used in our health care system. Most of the blood is actually given for patients who chronically need blood. To get transfusions over the course of their entire lives routinely. It could be anywhere between every three to six weeks. The blood supply also feeds us some other things that we use as well. Aside from the blood itself, there are components and blood that are taken out from a blood transfusion. They are used to help patients who have clotting issues. And very lately, some of the components in our blood are being used to treat diseases such as COVID as a matter of fact.

Kelly Albert:

That's actually a really interesting part because I feel like COVID has maybe contributed to people not necessarily thinking about donating blood or not going there. How has the pandemic sort of influenced the need for blood?

Cristian Machuca:

The need for blood remains constant. And you're right that that there has been, in large part, hesitation to go and give blood. Part of the problem is that before the pandemic, you could basically just walk into a blood test center or your local blood drive and know they will take you in, you'd give your blood and head out. But the procedure has changed. Now you have to actually get an appointment. So there's a few extra steps needed before you get should get to the blood donation that probably will make people think- well, I can't just stop by on my lunch break. So they think- I'll put it off for another time and then don't get around to it.

Kelly Albert:

In conversation with Cristian Machuca, who is an Assistant Nurse Manager in Adult Ambulatory Medicine at the MUHC. You just mentioned some of the process. But for those who have never donated blood before, you basically went over it, you make an appointment, you go, you usually you have like a little bit of an interaction with a nurse. You test your hemoglobin level, if I remember correctly.

Cristian Machuca:

Yes, that's correct.

Kelly Albert:

And then the whole process is about an hour long where you give blood. In my case, I'm not fond of needles so I don't look when I donate blood. But it's not as daunting, I think it's most people might assume.

Cristian Machuca:

Don't worry about the needle part. Over 20 years, I've yet to meet one single person who actually says Yay! a needle!

Kelly Albert:

That's good to know. (laughs)

Cristian Machuca:

That's not a barrier to it at all. The process actually these days, one of the things that happened with the pandemic and that institution have an appointment is that it's actually a bit faster than it used to be. Whereas before depending on when you arrived, there was a lot of people who were arrived at the same time. It would be longer. You'd have to wait your turn, you've got a check in, then a questionnaire to fill out. And then you talk to the nurse, just make sure that everything's all right before the you do the actual donation. It could take over an hour times. Now the times that I've been recently less than an hour, it's very rare that I've got to an hour. I'm really in and out.

Kelly Albert:

That's really wonderful. And I think maybe people don't know the requirements, but the Hema-Quebec website is really great for giving you all of the variables that you can think of. If you have allergies, if you recently got a tattoo, if you had COVID, anything like that a lot of the information is there and available for you. And so Cristian, what message would you want our listeners to know about the situation with the blood supply? Why would you want them to go out and give blood if they've never done it before?

Cristian Machuca:

What happens when the supply is low is that we have to start getting very selective with how we use our blood. We may, in certain situations, ordinarily give blood but we'll have to put somebody off for a little while before we can actually give them their treatment. If we give blood as a treatment, we have to kind of watch the blood supply very carefully. That causes delays that can cause missing treatments for some patients entirely, which can have a very serious side effect on their health.

Kelly Albert:

Absolutely. I mean, we're speaking with a patient later in the show about how many blood transfusions she's needed. It's in the hundreds at this point. So that can have a really detrimental effect on people's health.

Cristian Machuca:

Absolutely. They're dependent on this not because of an urgent trauma type situation, but just to live for their daily lives.

Kelly Albert:

And so I want to ask you, the Quebec Society of Thalassemia through the MUHC Foundation is fundraising to buy this really cool special piece of equipment and it has to do with donating blood and giving blood samples. So I need you to explain this because it sounds so cool. I'm in conversation with Cristian Machuca, who is an Assistant Nurse Manager in Adult Ambulatory Medicine at the MUHC, tell me about this really cool piece of equipment.

Cristian Machuca:

This piece of equipment is really high tech, we're talking almost sci fi. Most nurses, like myself, will tend to go by feel. You put a tourniquet on the patient, wait till the veins plump up a little bit, and then you are feeling around your fingers. And in some cases, we have a small, it's almost like a red lamp that you can use to just kind of get a sense of where veins are. They're used to get a certain shadow and then you then you go with your fingers and feel. This new piece of equipment, which is called the veinviewer is actually like a light projected on the limb, the arm usually, which lights up all the veins. I've seen some of the demonstrations really fantastic. You don't have to search around, you can immediately see where they are, how big they are. And this is fantastic. So we don't have to poke a patient more than once usually, which does happen when you're going the old fashioned route like I do. You just light it up, you get the needle in in one shot. No multiple pokes for patients which for patients, like the one you will be interviewing afterwards, is a lifesaver. They don't have to get these multiple needle sticks to try to get one vein.

Kelly Albert:

Generally, I imagine that veins are sort of in the same place for all people. But you mentioned the size, like some can be bigger, some can stick out more. So it must be challenging sometimes, if you have a hard time seeing the veins on a patient.

Cristian Machuca:

Absolutely. And some patients who have to get poked chronically like the thalassemia population, sickle cells and other one, even the patients who are getting chemo- over time from repeated needle sticks those veins, they get harder. They get difficult to actually get an IV into, they start getting closing up a little bit and then start looking for more veins. So the vein that has always worked eventually won't work anymore. Then you restart that whole process of trying to find the right vein, multiple needle sticks, etc;

Kelly Albert:

It must be really interesting to get to see how technology is evolving in the medical field to make your job easier, to make the life of the patients easier as well. Is that really interesting the stuff that you get to see behind the scenes?

Cristian Machuca:

Absolutely. I can tell you over the last 20 years that the leaps and bounds in technology. What we do in the hospital or the medications administration, or in the blood test are -across the board in critical care settings like the ICU or with the emergency room- the technologies is night and day from when I started out in the business.

Kelly Albert:

I bet, I can only imagine. Cristian Machuca is the Assistant Nurse Manager in Adult Ambulatory Medicine at the MUHC. We have a couple minutes left. I'm really fascinated by that aspect of fundraising for these pieces of equipment. Obviously at the MUHC Foundation, that's what we do. We like to purchase equipment to make life easier for our medical staff, and also for the patients. But philanthropy is so much more than just fundraising. It's also giving of your time, volunteering, and also donating blood in this case.

Cristian Machuca:

That's right. I'm a regular blood giver. I'm closing in on my 50 donation pin as a matter of fact. That should be coming up hopefully this year. There used to be an old commercial, it's the easiest way to save four lives. And it's true. With each one donation of blood, for an hour's worth of your time -you could literally give blood for different people. There's four different kinds of products that can be pulled from one unit of blood. Easiest way in the world to save somebody's life, and you get a cookie.

Kelly Albert:

I love that you get a juice box and a snack. Cristian, thank you so much for your time today. It was really lovely to chat with you.

Cristian Machuca:

That's my pleasure. Thank you very much.

Kelly Albert:

Christian Machuca is an Assistant Nurse Manager in Adult Ambulatory Medicine at the MUHC. Next up on Health Matters, have you been repeatedly exposed to COVID-19 and have never tested positive? You can help further research. That's next. I'm Kelly Albert filling in for Tarah Schwartz this week, and you're listening to Health Matters. Many of us unfortunately know what it is like to have COVID-19. But there are some people who have managed not to catch it. And if you've never had COVID-19 despite being in direct contact with positive patients, you may be able to help our understanding of the virus. Dr. Donald Vinh is an infectious disease specialist at the MUHC and the RI-MUHC. Thank you so much for joining us, Dr. Vinh.

Dr. Donald Vinh:

Thank you for having me, Kelly.

Kelly Albert:

As a researcher, can you describe to me what it's like to think back to the start of the pandemic and then where researchers are now?

Dr. Donald Vinh:

Kelly, as a clinician scientist, I think I can give you two different perspectives. Firstly, as a clinician, we went from an infection that we knew nothing about. And to which we which we were all petrified as health care workers because there were all these dramatic rates of people dying. And now, where we have all these various, different life-saving treatments available- that's been simply amazing. But I do have to say as a clinician, and knowing that we're still in a pandemic, it's also been very disheartening to see the apathy that's emerged, and that continues to rear its ugly head. Remember at the beginning, health care workers were considered guardian angels, sacrificing ourselves and our families to care for sick patients. We still continue for that cause; exposing ourselves to contagious patients. But somewhere along the way, some sectors of the public stopped appreciating that and that's been disappointing. But on a more positive note, as a scientist during the pandemic, the new knowledge gained, and the rate at which it was coming was just astounding. The global scientific community came together; we were able to understand rapidly that it was a novel virus causing disease. We did clinical study to find out who is at risk for disease, we've developed different models to figure out how to fight the virus, we develop different treatments that target the virus and to target the inflammation that was life-threatening. We've developed vaccines that have contributed to saving millions of lives. And all of this has been so gratifying.

Kelly Albert:

It must be and it must be so disheartening as well, at the same time to know that as we grow and get a better understanding of this virus, that there is still a sect of people who don't think it's all that bad, who maybe go out upon being infected or don't think that masks work, or all of the misinformation and disinformation that has been kind of consistent throughout the course of the pandemic.

Dr. Donald Vinh:

Yeah, in a way we can see this as we are a victim of our own success. The scientific advancement and the translation of those scientific findings to clinical care, to saving lives; it was great. But on the other hand, it also blunted the impact of COVID, to the point where the very science of status is now being doubted. And that's just confusing.

Kelly Albert:

Absolutely in conversation with Dr. Donald Vinh, an infectious disease specialist at the MUHC in the RI-MUHC. Now you're working on a research project that involves COVID resistors. We'll get to that in just a moment. But I do want to talk in more general terms about the way viruses work. Because I think we, in a big picture scenario, understand that you come into contact with the virus and get sick. But how does the COVID virus work to infect someone?

Dr. Donald Vinh:

The general concept here is similar to something like a lock and key mechanism. What do I mean by that? You have to take a step back and say, humans are flooded by microbes all around us. In the air, in the water, in our food, in our soil. But obviously, we don't have life-threatening infections every minute despite that exposure. That's because for those microbes to cause disease, they first have to infect us. And that means that they have to attach themselves to ourselves, whether it's cells in the airway, or in our gut, or on our skin, but that attachment is the first key step. And not all microbes can attach to ourselves. Only those microbes that possess certain proteins on the surface, and that are capable of recognizing specific proteins on ourselves can do that infection. So that's what I mean by the lock and key mechanism, that microbial protein has to match a human protein. And then that micro can unlock the door and infect ourselves. And if that that match doesn't happen, then there isn't any infection. And in the case of SARS-CoV-2 the virus spike protein, or the s-protein that we hear about the news that attaches to our human h2 protein. It allows the virus to enter cells, reproduce, make millions of copies of itself, and then to cause disease and transmit to others.

Kelly Albert:

Using the lock and key mechanism metaphor, that's why there's some people where the key doesn't fit in specifically to the lock. And that's why their infection is more mild, is that sort of the way it works?

Dr. Donald Vinh:

Well, I think that there's different aspects. There are some people when the key does fit into the lock, but other aspects of their immune system. Whether it's the cells at the front line, like in our airway, or whether it's cells of the immune system, they're able to mobilize quickly, especially if they've been vaccinated. And then they can blunt or make an infection mild or even completely asymptomatic, or at least prevent the life threatening complications. We've done research into trying to understand why some people get very severe disease from COVID like we saw in the earlier ways, while others don't. That seems to be related to some of our findings related to auto-antibodies, to cytokines or hormones of the immune system, as well as some genetic mutations that predispose people. But on the other hand, if that key doesn't fit into the lock at all; well, then the infection doesn't happen. People are resistant to infection and that's we're going to try and study.

Kelly Albert:

That's what's so interesting about this study that you're working on. Dr. Donald Vinh, an infectious disease specialist at the MUHC and RI-MUHC. So that would be sort of the COVID resistor that you're looking for? So tell me the general profile of this patient that you're looking for?

Dr. Donald Vinh:

I could just tell you a story. At the start of the pandemic, when I was directly taking care of patients with COVID, I remember seeing patients in their rooms with life threatening disease. Meanwhile, I was talking to their family member on the phone, trying to get more medical history from their loved ones. And I remember thinking, how is it that the patient who is in the room in front of me has life threatening disease. But this person that I'm talking to on the phone, and who lives with this sick loved one has absolutely no symptoms. Now, we've since learned that a large proportion of people can get infected, but have either no symptoms or mild to moderate symptoms that don't require hospitalization. We just talked about that and we also know that vaccines protect really well against life threatening disease, even if people do get infected. That's also a sign of scientific success. But throughout the pandemic, there were these people who lived with infected patients, and never vaccinated. And yet, when those people were tested, either by PCR or more recently with rapid antigen test, they're always negative for COVID. And that suggests, they were never even infected. And when we do blood tests to look for antibodies of the virus to see maybe if they did get infected, but just had no symptoms. We find no antibodies. So because of my research program that was already in place, Kelly, I was able to get right into an international consortium called the COVID Human Genetics Effort, which is an international group of experts that's trying to understand all the different aspects of COVID. And they were observing the same thing as me. What we've tried to do is hypothesize that maybe, just maybe there are people who are resistant to infection, they cannot be infected. And these are the resistors that we're trying to study.

Kelly Albert:

In sort of a speculation of what could come like, how could these resistors help you further the science and further the understanding of this virus?

Dr. Donald Vinh:

In this study, what we're trying to do is we're trying to find out, why is it that people are exposed but don't seem to be infected. That really is a question that has such scientific implications. First of all, it's an absolutely intriguing clinical phenomenon, it really does beg a scientific explanation. Because by studying people who seemingly cannot get infected, we can understand more about the virus' biology. Importantly, about how the immune system avoids or even aborts that attachment process we talked about earlier. But secondly, from a medical perspective, if we can find out the molecular shield that prevents the virus from infecting humans, then we can envision that this could lead to the development of new treatments, including therapies that can prevent infection and therefore prevent transmission. And just maybe, those types of therapies will help minimize the development of new variants and help rein in the pandemic.

Kelly Albert:

And so a hypothetical treatment like this in conjunction with the vaccines would really help protect the population even more?

Dr. Donald Vinh:

It would be, I think, a one two punch that can be really detrimental to the virus, and really beneficial to humans.

Kelly Albert:

In conversation with Dr. Donald Vinh, we just have a few seconds left Dr. Vinh. If someone fits this criteria, who is listening to the show right now, how can they get in touch with you?

Dr. Donald Vinh:

They can email us. On Google, if you type in MUHC COVID-19 Biobank, please visit our website. Under the link how to participate, you'll find our biobank email address, where one of our coordinators will guide you to determine your eligibility for the study. If you're based in Canada, or it will direct you to one of our consortium international portals if you're contacting us from outside of Canada.

Kelly Albert:

Absolutely fascinating stuff. Dr. Donald Vinh, thank you so much for joining us on Health Matters.

Dr. Donald Vinh:

Thank you, Kelly.

Kelly Albert:

That's Dr. Donald Vinh an infectious disease specialist at the MUHC and RI-MUHC. Coming up on Health Matters, why you should donate blood. I'm Kelly Albert, you're listening to Health Matters. Earlier in the show, we spoke with an Assistant Nurse Manager at the MUHC about the importance of donating blood. Quebec's blood supply is quite low. And as you heard, patients need the blood supply for treatments, not just for emergencies. The Quebec Society of Thalassemia is actually fundraising through the MUHC Foundation for a special piece of equipment that will help make blood tests and patients who have to give blood a little bit of reprieve from a lot of pokes from a needle. We thought we'd speak with a patient about what it's like to receive a lot of blood transfusions because my next guest has received a lot of blood transfusions in her life. Uzema Jeena is a woman living with thalassemia and she joins me now. Thank you for being here, Uzema.

Uzema Jeena:

Thanks Kelly, it's great to be here.

Kelly Albert:

So you have a disease called thalassemia. Can you tell me about it?

Uzema Jeena:

Thalassemia major is a severe anemia. It's an inherited blood disorder that causes my body to have less hemoglobin than normal. So I need to receive blood transfusions every three weeks to keep my hemoglobin stable enough to survive. I was diagnosed when I was six months old and that's when I received my first blood transfusion.

Kelly Albert:

Oh my goodness. So you've received hundreds of blood transfusions in your life in this case?

Uzema Jeena:

That's right. Believe it or not, I've received over 700 blood transfusions so far.

Kelly Albert:

Oh my goodness. This is a disorder that really has an impact on your day-to-day life if you can't get blood supply?

Uzema Jeena:

Very, very true. Very, very true. I mean, basically, these blood transfusions are what's keeping me alive.

Kelly Albert:

Tell me, how does thalassemia impact your life? What are the effects of having this disorder?

Uzema Jeena:

First of all, I guess I can say I have a lot of hospital appointments because of my thalassemia and also my other medical conditions. Taking care of myself is almost like having a part time job on top of my regular job. It's a lot to handle on top of everyday stresses of life. My energy levels tend to fluctuate a lot. Getting a transfusion is always a shock to the system and it takes me time to recover from that. But once they recover, I feel great and I'm able to be very active. No matter how I feel, I try to make the most of every single day because I fight so hard to be alive. People say that I'm brave, but I'm actually terrified a lot of the time. But I think being brave, pretty much simply means that you're just doing what needs to be done even if you're scared.

Kelly Albert:

Absolutely. I think that's really understandable. Especially when you see headlines like the blood supply in Quebec is low. Does that fact give you apprehension? Are you intimidated by that?

Uzema Jeena:

I have to say it does scare me. Because, as I mentioned, I've received over 700 blood transfusions so far. And so that means I'll probably need at least 700 more for the rest of my life. And I am hoping to live for a very long time. Knowing that I'll need that many blood transfusions. It's scary. But you know, I just tried to take things, one transfusion at a time.

Kelly Albert:

I'm in conversation with Uzema Jeena, she is a woman living with thalassemia. She has had as you heard over 700 blood transfusions in her life so far with more to come. And we're talking about the blood supply being low in Quebec. You actually volunteer with the Quebec Society of Thalassemia; you volunteer with blood drives and things like that. What message would you have as someone who needs so many blood transfusions for the people who are interested in giving them maybe they're a little bit apprehensive about giving?

Uzema Jeena:

I think that giving blood is really the most heroic and generous thing you can do. In your lifetime, you or your family or friends may need blood, because of an accident, maybe because of an illness. Every day, every moment, there's someone out there who needs blood. It could be your sister, your child, your best friend, your aunt, your colleague. And I mean, if I just look at me, I need blood on a regular basis. And I'm also someone's sister, someone's child, someone's best friend, and someone's colleague, and I've been saved by countless strangers. People I've never met over and over again. I'm just so grateful that there's such generous people out there. I think it truly is the most precious gift that one person can give to another.

Kelly Albert:

I think that's such a beautiful message that you have; how strangers have completely changed your life. And how it's a gift that takes less than an hour. We heard now with the pandemic, you can make an appointment with Hema-Quebec. It takes less than an hour, you get a little snack afterwards, you get to know your blood type. I spoke about this earlier about how philanthropy is not just giving a donation. It's not just volunteering; it's doing something like this to help our greater society.

Uzema Jeena:

Exactly and you mentioned my volunteering. I find that volunteering is really a way for me to create something good out of the pain and difficulty of living with an illness. I discovered I'm in a unique position to help myself and others who need blood and it's so rewarding. It really helps me to cope with this illness and my other medical conditions just by helping others. I had started volunteering with Hema-Quebec about 12 years ago, because I'd always wanted to say thank you to both the volunteers and the blood donors that these blood drives. It's really because of them that I'm alive today. There was a blood drive happening at work and I went to speak to the volunteers to thank them for their help. And they helped me get into volunteering for Hema-Quebec I did speaking engagements for them and TV commercials, several radio commercials. I also became the spokeswoman for the blood drives held at my office. I discovered that my coworkers just needed a little extra nudge to get them to start donating blood to. And for the Quebec Society of Thalassemia, I started working with them when I was in my 20s. Thalassemia is really not an easy illness to live with and a good support system is so vital. I joined just because I wanted to do everything I could to improve my life and also the lives of others living with this illness. I'm so delighted that we'll soon be buying a new piece of equipment, the veinviewer, as you mentioned, and donating that to the MUHC. Hopefully, this piece of equipment will make everyone's lives a bit easier at least.

Kelly Albert:

I would love to speak to you about your experience with this. We're speaking with Uzema Jeena, who is a woman living with thalassemia, over 700 blood transfusions in her life so far. We spoke about the sort of technical aspects of this piece of equipment, it's sort of sci fi, it shows the veins. As someone who's received, I'm assuming quite a few pokes in the arm with a needle in her lifetime...

Uzema Jeena:

Unfortunately, yes.

Kelly Albert:

How much of a game changer would something like this be from your perspective? If a nurse has an ability to find a vein really easily that'll work for you?

Uzema Jeena:

I think it would be huge. I mean, the veinviewer can help people living with thalassemia like me, who gets blood transfusions every three to four weeks. It can help so many other people and I've been receiving blood transfusions since I was first diagnosed at the age of six months. My veins are really my lifeline. But when my veins are used so often over and over again, they get scarred and they get sensitive. It's been decades now. Getting a blood transfusion can become a painful experience. Because of that, there are times when I'm in tears, because I'm in so much pain. Sometimes it takes five to six times to get my vein and several nurses try. Sometimes I go home with my hands and my arms all swollen and bruised. And that takes a lot of time to heal as well. I'm also demoralized, because then I know I'll have to do this again and I'll have to do this forever. I wonder what's going to happen in 20-30 years. That's the physical side of it, but it also causes anxiety, because then of course three weeks later, I have to go in from a transfusion again. But if the nurse can get my vein in one shot, hey, it's like it makes all the difference. And once we have the veinviewer, we're hoping that this will make things so much easier for everyone. Not only people living with thalassemia, but just also for the nurses and everyone who comes to the medical day hospital for treatment.

Kelly Albert:

Absolutely. I think that's a really wonderful message to end on just how impactful this piece of equipment will be how much it will help patients and help our health care workers as well. Uzema, thank you so much for joining me on the show and sharing your story with me.

Uzema Jeena:

You're very welcome, Kelly. Yeah, it was a pleasure to be here.

Kelly Albert:

That is Uzema Jeena. She is a woman living with thalassemia and shared her condition that has made her receive over 700 blood transfusions in her life. What a remarkable story. I'm Kelly Albert, thank you for tuning in. What would you like to hear about on the show? You can write to me at health matters at MUHC Foundation dot com. You can also join our community. Follow the MUHC Foundation on social media or sign up for our newsletter at MUHC Foundation dot com. Tarah will be back next Sunday. Thank you so much for listening to health matters and stay healthy.