Brigette McKern | Patient Advocate | Double Lung Transplant Recipient
"I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life" Brigette Mckern.
Introducing Brigette Mckern and her Journey Living With Cystic Fibrosis
My name's Bridget McKern, I'm 36, I'm right now. I'm mostly a professional patient and I do work part time as well in a library. right now I am just maintaining my health and I hope to travel more. That's my plan. When we look with cystic fibrosis CF, that a genetic disease that affects the lungs and the digestive system. It's a genetic disease and basically the lungs filled up too much mucus. They produce too much mucus so a bacteria and illnesses can live in there. Usually you get lung illnesses progressively, it's hard to get rid of them. So you do things like nebulizers, like asthma patients would do to break up that mucus, but just over time it takes over your lungs and you also built up cysts in your lungs.So usually transplants is needed at some point.When I was four years old I came down with pneumonia, I ended up in the hospital and that's when they diagnosed me. I had symptoms that I was showing, they tested me and found that I had it. I was a pretty healthy child, I wasn't in the hospital again until I was an adult and then it kind of started. My disease progressed, my lungs get worse. When I was 30 I was listed to receive a double lung transplant. I waited two years on the waiting list and then received my transplant and that was three and a half years ago. So now I'm just trying to maintain my health.
Growing Up With Chronic Illness
I knew I was different from my friends, but again, I didn't grow up with other people who had CF. So for me, I was luckily a to be a normal kid. I went to birthday parties, sleepovers and I went to school. I had friends, so I don't think I really thought I was too different. I knew I had to do medications and my friends, I don't know, I think it was in a way kind of cool for them. They were like, oh, what's your nebulizer machine? Or what do you do? And you know, actually that was nice. Nobody picked on me or anything. So it wasn't bad. I think as my disease progressed, it got harder and I kind of wanted that outreach to reach out to other people who lived with my illness to understand it better. I noticed a lot when I graduated college and when I went out to get a job and to work, I didn't really want people to know about my illness. I was worried it would prevent me from getting a job if they knew that I would have to take days off, I would possibly have to be in the hospital at times and I thought it would be a barrier.So when I was a kid, it wasn't something that was very visible unless they saw me take medications or something like that.
Invisible illness and Adulthood
As an adult and my disease progressed, I had a chronic cough and people especially working in an office, oh, are you sick, do you have a cold? And I would just say, Oh yeah, allergies or you know, I didn't have anything contagious, but I knew it was pretty obvious that I had something wrong. I would miss days of work and things like that. But then sometimes I think it's easier when people can see it in a way that then they understood, you know, people tend to understand sickness, like when somebody has a visible cold or the flu, you know, and you, Oh, I'm so sorry. Um, and maybe if they can't see it, they think, oh, you know, you cancel these plans, you're flaky or you don't want to come to work. You're not a good worker. And it's kind of that hard place of you want people to understand, but you don't because you don't know how it's going to jeopardize what they think of you or what that means to your professional life.
Reflecting On Receiving News of Needing Transplant
When I was listed for transplant, actually, it was a surprise to me that I needed transplant. You know, living with CFD you kind of know, oh, that could happen. And when it did, it just seemed so foreign and I didn't have anybody to talk to who had been through it. I really used Facebook and social media to find other CF patients, other patients who went through transplant and really seeing other people share their stories. That's what made me want to share mine because I thought, okay, this person's story made a very big difference to me. If I could do that from one person who maybe was in my position and felt really lost and not sure what they were going to go through coming up and it would be worth it. I was much more open to sharing those experiences because I didn't feel I would have that stigma of thinking. I don't want people too close for you to know too much. But now I just share it because just the reason that it meant so much to me that other people shared their stories and it makes it so much less scary. Just to have one person say to you, I know how you feel and know what you're going through, that makes a world of difference.
I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life. I remember crying because it's just very overwhelming. When you think, oh this means you know, I could possibly die very soon. Growing up, pretty healthy. I didn't think my life would be to shorten. Then after that, there's about four months of testing and evaluation you have to go through just to see if you qualify. Because, even though you're at end stage, they want you to be as healthy as you can, to go through. Actually lung transplants are considered the hardest surgery that you can go through physically and usually each transplant center they have kind of an average waiting time. For my center it was four months, but because of my size and the fact that there aren't as many organ donors as we need. I ended up waiting 28 months and my disease progressed through that time as I spent more time in the hospital.
Managing Fear While Waitlisted
It's scary because you don't, you don't know what the outcome's going to be. I didn't know if I would get a transplant before I passed away. I didn't know how long. You know when you have a scheduled surgery you can think, okay, I just have to make it to this point and with that unknown, like I didn't know. So it was kind of everything came down just day by day. I just wanted to make it through and get to that point, so it's overwhelming. I actually was diagnosed with, major depressive disorder and anxiety during that time. I went through talk therapy and took antidepressants because it was like you said; it was just mentally tolling to take it day by day, and not be able to make long term plans, to not to see an end to it coming.
Mental Health Post Transplants
I also went through it again after transplant and I felt, I'm not sure how common it is coming out of transplant. I felt really guilty. I felt guilty that I have this transplant and there's so many other people that need transplants. I didn't, you know, you can't guarantee anybody else is going to get a transplant or they're going to be successful. Through social media I knew people who passed away either waiting for transplants or after they received them they didn't recover well. That's a hard thing to take too. Also looking at, you know, I have a donor, a person who had to pass away so I could have this chance. It's a lot of pressure on you, I want to be the best person that I can. I want to do everything I can now for my donor, for their family, for my family, because my family, my poor parents had to go through that with me as well.
The Role of Support System in the patient journey
I have friends and they actually live in Orlando, their about an hour and a half away and every time I was in the hospital they would come and visit me. My fiancee John, he was there as well. Every trip to the emergency room, he had to either drive you there, or call the ambulance. My parents actually live in Minnesota and they came down and especially during my recovery, I had to have full time care for about three months after my transplant. So my parents came down and did that. A lot of people sacrificed time from work, time from their social lives. I know mentally it was hard for them as well. But yeah, I wouldn't have gotten through without them helping me. Just not only physically because I couldn't breathe, I couldn't cook. When it came down to it, I needed help washing my hair, things like that. Then just mentally having them keep me up for every day and getting through really made a difference.
Processing Donor's Decision making process
It's overwhelming to know that somebody I've never met and will never meet, literally saved my life. They made a selfless decision and their family did, before they passed away. I can't imagine during the time of losing a loved one making such a big decision. It's been almost four years, that's more holidays, I've had with my family, days I've had with my friends. I've volunteered and I'm just happy to wake up every day. It's a very overwhelming thing. I think, I think people need more education, more facts about organ donation. I think there's a lot of false information or stigmas that are around it. People think if you went into a hospital, they want to save your life, if they knew you were at organ donor, which is completely false. They always do everything they possibly can and also that it's something that will come down to your family or your next of kin.It's important to talk to people around you that want to be an organ donor because in that hard time it could be hard for them to make that decision. But, if they know your wishes it might be a little easier. Actually, it was great during translated really awesome nurses and they worked specifically with transplant patients so they knew the process and they knew how hard it was everyday, you know, just to eat, to get up and walk and all of that.
Clinicians, self advocacy & Patient Experience
I actually had a really great nurses and especially because you don't spend a lot of time with your doctor, you spend more time with your nurses. They're there 24/7. I got to know them and their family stories and they got to know my family that would come to visit. I think that reaching out to the staff, to the health care provider, they were there when your family's not there and I just had really great nurses. I was very lucky. But again, their kind of that bridge between you and your doctor as well. So it's important for them to know everything you're going through and to voice when you have pain, when you have problems with medications and things like that. Be your own advocate and be outspoken and don't be afraid that anybody's going to judge you or you know, I think I went through that, especially as the kid, I wanted to be the perfect patient, I wanted to come in and you know, I didn't want to complain and that. But, it gets you in more trouble when you don't because then you have problems that you're not taking care of. So I think just don't be afraid to voice anything.
A Day in the Life of Brigette
Very busy, very scheduled. A lot of the treatments that we do. The nebulizers, there's also a thing called a vest machine and it's literally you put on the vest, it hooks up to a machine and it shakes. It does percussions on your chest to also help break up that mucus and those treatments are done two to three times a day and it can take up to an hour each treatment so that along with pills two to three times a day. It's a very laboring process to take care of yourself. Also, frequent doctor appointments. There are designated cystic fibrosis centers at certain hospitals and I've been seen at those, I've been seeing just at hospitals and I will say it's very different. The cystic fibrosis centers, they know about treatments, they know how the disease progresses and generally in a hospital it's not something that's seen commonly. So it can be hard to be properly treated. The way you would treat infections would be different than with an average person. So sometimes there's a lot of confusion there. It is a very extensive disease, unfortunately. Medications and treatments.
The Cost of Wellness for CF Patients
The machine I was talking about, the vest machine, most families can't afford it. It's thousands of dollars and so things like the Cystic Fibrosis Foundation or you can find other areas that can help you. Sometimes people donate the machines when they don't need them anymore because they are such a high cost. Medications are expensive, my parents both had to work full time when I was growing up so I could have health insurance. When I aged out of their insurance, I had to focus on getting a good job, getting something that I could support myself and get the insurance to pay for those medications. That's hard too because a lot of times when you get to adulthood, your disease is so progressive. It's hard to work full time, but you know, you have to choose what you're going to do. So I worked probably longer than I should have, they told me. But, I needed that insurance, I needed that help. So I'm not sure what the answer is, but, somehow bringing down the cost of drugs would help, also, the amount of time before a drug can become generic. A lot of the drugs we take when they first come out, obviously they're patented and they're expensive. I think maybe shortening that amount of time and allowing other companies to produce, explaining things. It's kind of a monopoly with very few drug companies that produce the drugs needed.
The Future for A Regenerated Double Lung Transplant Recipient
I would like to tell my story more in person, maybe a volunteering. There are a lifelink Florida's organization that procured my donor lungs, so maybe working with them or somebody, just to share my story to raise more awareness about organ donation and what that can do. I've been keeping myself healthy and building up that stamina so I can do a little more physically. That's why social media's easier for me a lot of times. I still have a lot of treatments, a lot of doctor's appointments and things. So it's easier for me to get messages out that way. I think it's up to every patient because I know there was a time that I wasn't necessarily ready for everyone to know all those details and it can be very hard. I think if you feel you're ready and you can do it in small steps, even just talking to people in your life, your friends or people you work with and then kind of building up from there.
Social Media & Patient empowerment
I wouldn't tell people yes or no. I think it beats a person's journey. But just for me it was very therapeutic, it helped me kind of process everything that was going on. Again, I moved down here from Minnesota with family and friends in other states. So it was easy for me to update them on what was going on rather than having to call all of these people. I would just say if you want to do it, don't be afraid to take those first steps. Even if they're little, take it day by day and know that you're strong and you're going to make it through and don't be so hard on yourself. Don't think you have to do everything yourself. Be okay to ask for help and reach out to people, because it can be isolating as well. Also, you don't want to feel like a burden on somebody else, but you're not. There's people around you for a reason and they want to help you out and take care of you.