The marathon continues and Isabella MacLeod shares a patient’s perspective on healthcare during this episode of the perspectives on healthcare podcast with Rob Oliver. This is 25 in the patient’s perspective marathon. Isabella gives us a Canadian viewpoint and some interesting information about Lyme disease.
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Here is the transcript of my interview with Isabella MacLeod as she shared a patient’s perspective on healthcare:
Rob Oliver: Welcome. What is your name?
Isabella MacLeod: Isabella MacLeod.
Rob Oliver: Alright, Isabella. And where are you from?
Isabella MacLeod: I’m from Halifax, Nova Scotia, Canada.
Rob Oliver: Fantastic, Isabella. Thank you so much for being a part of this and for joining me today. Can you tell me a little bit about yourself and your kind of background and experiences with healthcare, please?
Isabella MacLeod: Yes. So I’m a former registered nurse. I was a nurse for 23 years, started off in general internal medicine and dermatology inpatient and then I went to academic simultaneously outpatient dermatology clinic Ambulatory. Then I moved for three years. I then moved on to the burn unit, plastic surgery, which was intensive care nursing, microsurgery and oral surgery on the side. So it was pretty intensive, as you can imagine. Working in the Barn unit for five years, had a little bit of a back injury, took a little break for a year or so, and then I ended up in inpatient ophthalmology, which is eye surgery and eye care, for a year and a half. And then I transferred down to the outpatient ophthalmology during perioperative nursing. We handled all getting everybody ready for any eye surgery, retinal, cataract, ruptured, Globes, anything to do with the eyes. And then I looked after them post operatively and then I ended up developing Lyme disease after 23 years. So I had to stop working, unfortunately.
Rob Oliver: Okay, if it’s not too personal, do you mind talking about your experience as a patient having Lyme disease? What’s that been like for you?
Isabella MacLeod: So I really got really sick. I didn’t realize what was going on with me. I was very healthy. I just had a baby two years prior to becoming ill and I was super healthy and busy and all that just and got really extremely fatigued, had excruciating joint pains, so much so that I was bedridden ended up so anemic. My hemoglobin was bumped down to 70, which is really low, and I lost £60 within two months, which was very unusual for me. If I looked at a chip, I would gain £10. So all of my friends and neighbors were looking at me and I looked terrible and they’re like, what is going on with you? We know something really bad. So I went to the doctors, did blood work. The only thing that was showing up is I was anemic and they thought I had cancer. So get checked out with bone scans and everything for that ended up being negative. I’m still very sick. The doctor really didn’t know. My family doctor didn’t really know what was going on with me. So I took it into my own way and I started researching my symptoms and I was showing up with Lyme disease, in my opinion, and it wasn’t very well known about twelve years ago. So ended up calling a doctor from California because the Americans from work first with Lyme disease talk to her over the phone. She reviewed my blood work and she said, I think you do have Lyme disease, why don’t you come here to San Francisco, and I’ll assess you? We have lime labs here. You can get all your blood work done. You’ll have to pay for it. And I said, okay, I will, because I was so desperate to get help. And I did went to see her, went to the Lime labs in Los Alto, had like, $1,250 worth of lime work done. But two weeks later came back. Yes, I definitely had Lyme disease. I had Bartnell, which is a coincidence of Lyme disease. The day after I got off the plane, I ended up taking the medication. I got my prescriptions that filled for the Lyme illness, ended up in Atrial Fibrillation, where my heart was racing out of my chest, could not get it under control, and it’s an emergency. Could not get my heart under control for 12 hours, and they end up cardioverting me and shocking my heart back to rhythm. And then in the end, they diagnosed me probably a month later with heart failure, which they didn’t know what caused it. And I actually said, well, I know what caused it. Here’s the blood work, and it’s Lyme disease, and it can’t affect you on every level, neurologically, cardiac, you name it. It mimics a lot of things. And I’ve continued to take the medication that the physician prescribed for me for Lyme disease, and I ended up in liver failure from that because it was too much. They’re coming right off everything doing some naturopathic medicine. Yeah. And basically, my heart did improve, and I’m actually way better, but I still have chronic Lyme because I was so far gone with the Lyme disease that I haven’t quite ever recovered from it. But it saved my life being my own advocate.
Rob Oliver: Sure. So talk to me about that. What was the interaction like, where you are taking a medication that’s being prescribed by a doctor in another country, and then that medication is causing you issues. It’s causing you heart issues and causing you liver issues. And how is that being handled by the doctors that are helping you up at home?
Isabella MacLeod: Yeah. So my family doctor wasn’t overly impressed with me when I told her I was going there. Then I was like, oh, well, you’re not helping me here. And I’m going anyways because that’s kind of the girl I am. Plus, I was a nurse, so we’re kind of pushy people and know our own bodies and our own health. I did get the results back. She was like, oh, my. She was blood. I went. And then she knew the heart failure was from the line and not the medication. So she was like, well, thank God you did go, I’m glad you stood up for yourself and all that jobs. And so was I. So initially, she was mad. In the end, she was happy because I saved my own life, basically.
Rob Oliver: And more power to you for that. So have you met any healthcare heroes along your journey?
Isabella MacLeod: Well, I’ll be vain. And I’ll say I met myself because I used to work in the burn unit, and we did save lives to critically ill burn patients who would never otherwise survive without intensive care, nursing and grafting and being in the hospital for months. And we could save a lot of lives there. And my own hero because I saved myself.
Rob Oliver: You know what? The fact that you are a self advocate and stood up for yourself and literally saved your own life, and the fact that you’re serving people that are in the burn, yet I have no problem with you self. Nominating. As a healthcare hero, it’s completely allowable by my standards.
Isabella MacLeod: Thank you.
Rob Oliver: No problem. What does quality healthcare mean to you?
Isabella MacLeod: I think it’s quality health care to me is when I was a nurse, I tried to give my 110% to all my patients. I really did very good assessments on them, especially working in the Bernie and Medicine. They’re very sick people, really analyzing them, all their blood work, all of their X rays. If something occurred with them that was as soon as something abnormal was occurring, I was right there to do an intervention, whether it be get on the phone, call the doctor, make sure EKG, blood work, X rays, anything that we both thought was necessary, if they were really sick and did a major turn. Of course, I’m right on the phone with the doctor. Have them come in and to assess. And I just think it’s really important, too, even if it’s not even a major thing. If you notice your patients, if you have them for a few days and you notice they’re off, usually. When I was a nurse, we had our patients for four days straight. So you get to know them a bit and sometimes not. But if I couldn’t put my finger on something, then I would still call the physician and say, this person is acting different. They’re feeling different. They’re extra tired, they’re extra in pain, whatever they needed. I was always on there because the little things can mean a lot sometimes. And if you missed it, that could be absolutely to the detriment of your patience. So I always evaluated the patients constantly.
Rob Oliver: Okay. Tweetable moment. Little things can mean a lot. Can you talk to me about that? Or maybe give me some generic examples of what you’re talking about?
Isabella MacLeod: Probably. When I was on Medicine, we’d have a lot of elderly patients, and they had a lot of health issues and everything. And all of a sudden they would just say, I don’t feel that good right now. And I’d be like, okay, what’s going on? And check their vitals, make sure everything’s going on. I check them. Their temperatures through the roof or their blood pressure through the roof, different things like that. And then all of a sudden they turn really quickly like they actually can arrest or their breathing up so bad they had to be intubated. And I never, ever just go kashaw to those patients. I would make sure that I did a major assessment. When I checked their blood sugar, if they were diabetic, I checked everything. Because when they’re saying this to me and I knew them especially, I made sure and I actually picked up on a lot of stuff with some person going into pulmonary Deem or congestive heart failure that they never had before because they were on different medications or they had a reaction to a medication that they were given that was new things that could be life threatening and had to intervene with them. So they did pick up on stuff that occurred with patients like that.
Rob Oliver: Yeah. And that’s so valuable and having somebody that is paying attention to you and listening to you because sometimes people are dismissed. But no, it’s pretty amazing. And it’s good to have someone that’s paying attention to what’s going on with you.
Isabella MacLeod: Yeah, go ahead.
Rob Oliver: Okay. I was wondering what is one thing medical professionals can start doing today to improve the quality of health care?
Isabella MacLeod: Specifically my issue with Lyme disease or any illnesses. If you cannot find what’s going on with the patient, you shouldn’t dismiss them thinking they have psychological emotional issues. There are illnesses that are rare that occur. They’re not always just your basic illnesses, like you’re diabetic. You have a heart problem. You have a basic neurological problem. You really have to go out of the box. You don’t dismiss the patients. I would want that for my family members. I have several family members who have some uninteresting abnormal issues. One had an eye problem and she was just off. They thought it was her eyes ended up she was beginning to have dementia. There’s me with Lyme disease. My line was not showing up under regular blood work. I knew something was very wrong. I think it’s really important for everyone to be their advocate as well. And doctors should listen to their patient, especially if they’ve had them for a long time. And don’t dismiss them as psychosomatic because they’re not following their usual ABC one, two, three diagnosis. So always continue. I think that’s really quality of care when you don’t give up, you don’t just dismiss a patient. That’s super important, in my opinion. I want that for myself. Family, anybody.
Rob Oliver: Yeah. So tell me more about don’t give up and don’t be dismissive. Can you talk to me more about that? Is that an experience that you have had yourself, or is it an experience that you’ve seen in others? Tell me about that, please.
Isabella MacLeod: Yeah. Like I’ve had with the Lyme disease as well and other issues. I think like I said personally with the line, I did not give up. And if I did, I wouldn’t be here. I’d be in a coffin right now and not here for my children. I have two children. I end up having a divorce over my illness because initially my ex was not believing I was ill. I will never give up on myself. If you know your design self be true. Never, ever have somebody tell you no matter what there’s something they’re mentally ill. You’re not really sick if you’ve know you’re knocking on all cylinders and especially me where I was a nurse, you absolutely always be your own advocate because doctors and nurses aren’t perfect in healthcare professionals, we try to do the best that we can with the information, but there’s always some unusual new illnesses which are occurring that don’t always fit the box. So I really think that doctors should always try to think out of the box. If they don’t understand something themselves, they’re always learning as well. Healthcare professionals are always learning new techniques and illnesses to deal with and diagnostic tests and even with Lyme disease are still developing new ways to test for that. They’re more into PCR testing, like with the covet now because that’s the gold standard instead of just blood work. If you’re too far gone in line, then it doesn’t show up. But a PCR shows up the actual DNA of the Borella bacteria for Lyme disease. So stay up on all of your elements and don’t ever dismiss patients.
Rob Oliver: It’s interesting to hear you talk about this with making sure that medical professionals are educated because the technology is changing all the time and the information that’s available is changing all the time. I would say there’s another side to it in which patients need to educate themselves as well because there has never been greater access to information and to be able to have your own knowledge and information and move forward with that and almost be as educated about your condition as your doctor is.
Isabella MacLeod: Just to interrupt every second. Introduction we have a Lyme disease education of Nova Scotia that we put all of the symptoms testing what blood work is available, what doctors are available because it’s still really hard to get treatment for chronic Lyme. Canadians might have to go these days, people to prevention. If you get it from a tick. So huge prevention. You’re in long grass. Wear long pants, long clothing. Check yourself if you’re hiking right afterwards. Prevention is huge with this as well.
Rob Oliver Okay. Excellent Lyme education of Nova Scotia is lens, I’m assuming, but wonderful. So, Isabella, thank you so much for being with me today. I appreciate you sharing and I respect your perspective on health care.
Isabella MacLeod: Thank you very much. Thank you. It’s a pleasure being here.
Rob Oliver: Thank you. Thank you. Bye.
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Disclaimer: All opinions expressed by guests on the Perspectives on Healthcare Podcast are solely the opinion of the guest. They are not to be misconstrued as medical diagnoses or medical advice. Please consult with a licensed medical professional before attempting any of the treatments suggested.