Webinar Recording: Organizing Your PNH Medical Records in 2023
Webinar Recording: Organizing Your PNH Medical Records in 2023
The PicnicHealth Team
January 24, 2023
01:25 PicnicHealth Overview, Timeline Demo
05:28 Real Word Data Overview
06:26 PicnicHealth’s PNH Research Study
10:57 Panelist Introductions
15:10 Tips for Getting Organized
21:22 Alleviating Stress in Early Stages of Diagnosis
29:36 Recommendations for Finding a Specialist
36:20 Tips + Tools for Managing Care
45:20 Additional Supportive Comments or Advice
45:30 Looking for Silver Linings
46:52 Remembering this is a Short Moment in a Big Life
50:20 Goals for 2023
53:45 Pushing through 2023’s Ups and Downs
Ashanthi De Silva: Hi! Everyone! Thanks for joining. We'll give people about a minute or 2 to come in, since this is is the middle of the day, and I know people might be joining from work or wherever they are. But thank you for being here. Hi, everyone! Thank you for joining. We will go ahead and get started. and we thank you. Thank you, Ashley. So welcome to get organized and get ahead with PNH in the New Year. Thank you for joining us today. My name is Ashanti De Silva, and I am a community partnerships manager at PicnicHealth. It's really wonderful to be here with all of you today. and I will go ahead and share our agenda, so you can see what we're going to discuss. Excuse me, so I will share a little bit about PicnicHealth and the PNH research we're doing and share a tool that we have as well to help you manage your care this year. and then I will hand it off to our 2 wonderful speakers, Erin Fortin and Brandi Lewis.
They are 2 amazing PNH advocates in the community, and we are so honored to have them with us today. So there's going to be hopefully, really great conversation about different tips and tricks you can use this year to really stay ahead of your health, your care, so you can get back to things that are important to you. And as always, please stay until the end, because we will have an opportunity for Q&A. And you can directly ask Erin and Brandi any of your questions.
So I'll go over a brief overview of PicnicHealth and who we are. So our mission is to really help people impacted by chronic and rare conditions, access their medical data to transform their own care and then be able to use that medical data to transform research. So we were founded in 2014 by Noga Leviner who at the time was diagnosed with Crohn's disease. She was seeing multiple doctors and specialists across different hospitals, and she was very frustrated by the lack of efficiency in the health care system to obtain her medical records and really be able to easily share them as well. And I know personally, I've had a lot of issues with this, and I've had to even order multiple tests. because, you know, I wasn't able to see that 5 years ago I had the same expensive test done. So PicnicHealth was created to address these kind of issues to help get your records back into your hands in a way that's easy to navigate and help you be a more confident at advocating for yourself when you're at your doctor's appointment and managing your care. So we are a technology company, and we offer a platform called the PicnicHealth Timeline where you can get all of your medical records from your doctors in one place, and you can easily share it with your care, team or your family or friends, or anyone else who's involved in your care to keep them in the loop.
So our company, we do all the work of collecting, organizing, and digitizing your records, and this includes whether it's, you know, the doctor down your street, who might still be on a paper based system for managing records or your out of state specialists in New York, who is in, you know, a larger record management system like Epic. So you won't have to sort through, you know, hundreds of pages and have a binder to keep everything organized. You'd have it all here for you in one spot. So I'm happy to demo it for you quickly. Thank you, Ashley. So this is what the timeline looks like. As you can see if we scroll down you can see imaging, labs, office visits, all in order. And if you can't remember everything when you're at your doctor's office, it's completely fine, because you can search by date, visit, type, facility, doctor. And one thing I like to highlight here that's unique about this web application is if you go to visit type, you can see your labs across different hospital systems.
So, for example, for PNH: I know lactate dehydrogenase is LDH, is an important marker to keep track of, so if you were to go to labs and click on… we can pretend Basophils is LDH. But if you click on that, you will be able to see the trends in LDH across time. You don't have to log into multiple portals to see, you know different labs. You can see this all at once here in one place. So this would include your visits to your local doctor, your visits to your specialists, regardless of what system that record is in. We have it all here, so you can truly see what is going on with your health, and be a better advocate for yourself.
And one other thing I really love to highlight is that you can share this with anyone you'd like. So if you go and click the share button, you can share it with a provider. You can share it with a family member, and you can choose how you want to share it as well. And you are also able to control access to who can see it as well. So if you're no longer seeing a certain specialist, you can pause their access or remove access completely.
So this timeline is free for people living with PNH and to other caregivers when they join our research program. So we want your medical records in your hands, and we want you to also know that your medical records can be a part of real world data research in PNH. So real world data is recognized by the FDA as data that provides information about a person's health status. It can come from a variety of places, and that includes electronic health records. So we started to really invest in this idea. In the idea of real world data research, so we could leverage the important information that's found in your records to help researchers and advocates really understand the full picture of what it's like to live with different conditions, which includes PNH.
This is completely different from a controlled clinical trial setting. We want to see what's happening out in the real world for patients. So when you're leaving your doctor's office, or when you're leaving the ER, we want to know what is happening because this can help inform care.
So when we decide to do research, we really consider what are the communities that have a large unmet need that can be met by research. And we know this is true, for PNH. PNH is one of those communities where there's still a lot to learn, and we can do it together, because unfortunately, while there are treatments available, there are still unwanted side effects like pain and people still experience a large amount of fatigue. So we're excited to have a program in PNH because we really think we can make an impact.
This is our real world data research program in PNH. It is community-driven research. So we're going to help connect your story with researchers and enable you to share parts of your de-identified health history to help find answers that we can't find in clinical trials.
At the time Roche is one of our partners that we're working with in PNH, and we'll be helping them look into the efficacy and treatment patterns of different therapeutics in PNH, as well as using this to potentially help bring other therapeutics to market for the community, which is always a a good thing.
We've done our best to make participation as easy as possible. This will take around 10 min to sign up, and you can do it from home as long as you've received care in the US. Anyone with a PNH diagnosis can join. If you can't sign up for yourself, you can absolutely have a caregiver who has the power of attorney to sign up for you.
And when you sign up, again, you'll get access to the timeline for free. And we really value, your participation, your time, your contribution to this research. So we do offer $400 in compensation.
Next slide, please.
So again, your participation can have a really powerful impact in our real world data research. You have a story to tell, and we'd love to leverage it in research, so we can help transform the future of PNH. We're looking to recruit around 100 participants in the next few months, and when you sign up you'll be asked to complete optional paid surveys as well.
So these are our research principles. I love to go over this because it's very important to who we are as a company and our mission. We are very dedicated to protecting those who participate in our research. We do use military grade encryption to keep medical records safe. So that is the same system that banks use, and it's higher protection than most hospital use. We are HIPAA compliant, and all of our studies are approved by an institutional review board, and that is in compliance with FDA regulations.
Again, I can't stress enough how committed we are to the security for our users and advancing resource for the public good. So when we do work with research partners like Roche, all of this data that we share is de-identified. You're given a unique identification number. We never share all of your story or all of your data. We share parts of the data that are combined with other participants data, all de-identified. It's grouped together, so it's highly unlikely to be traced back to you. And we are committed to representative data, so when we're discussing, you know, soon, how to say ahead of PNH this year, if part of that for you includes possibly getting involved in research, I want to make sure that you know of the different opportunities available to you.
And lastly, you must give your informed consent to participate in this. Your data is yours. You own it. So if you ever want to opt out of this program, you absolutely can. There are no questions asked, and you will still get a downloadable PDF of all your records to keep.
So I'd love to share some of these quotes, because I think it really helps drive home what we're trying to offer to different communities and what we want to see as a result. So I'd love to share a quote from Chelsea, “I was able to eliminate the tedious work and stress of managing my records which allowed me to focus on my care and living.”
And this, you know, with the timeline, with our resources, this is one of our top goals with the program. We want you to be able to better manage your care and stay on top of things so you have room for what is truly important to you in life.
So with that, thank you.
And I would love to hand it off to Erin. She's a passionate PNH advocate. I've loved working with her. Our whole team has. She's also a new mom, and she juggles it all while managing her care and working. So thank you for being here, and I know you had to find a babysitter, so I really appreciate it. I will hand it off to you to share a little bit more about your diagnosis story.
Erin Fortin: Sure, Thank you. Hi, guys, I'm Erin. I was diagnosed with PNH back in 2019. I think that looking back on my entire PNH journey and trying to narrow down. You know what happened, I think. Looking back, I started developing symptoms a couple of years beforehand that I ignored and continue just to live through life. I was working full time while going to school full time, and just had a very busy lifestyle that I pushed a lot of my symptoms away and chose to ignore them. This did end up leading to a PNH episode is what I like to call it. I did end up in the hospital. I think this process, though, really is what led my doctors to my diagnosis. I know that there are a lot of patients out there that go years searching for answers. Like the bittersweet for me, was that it wasn't that long period of time that we were searching for answers just because everything had come to a head, and that's when I ended up in the hospital. I did need a blood transfusion. But luckily everything went very smoothly. I was able to get my diagnosis, get a plan for treatment, and then I was able to start treatment, and I am very grateful to say that I am stable at the moment, and I just like to get involved with the PNH community. If anybody sees me on social media, don't be afraid to say, “Hi.” I love meeting new patients and just connecting with the community.
Ashanthi De Silva: Thank you, Erin. Thank you for sharing more about how you were diagnosed. I'm so glad that it didn't take you a long time from, you know, being symptomatic to getting that diagnosis. That is, that is a very good thing. Yes. So right now I'd love to hand it off to Brandi. And she has been advocating for bone marrow donor awareness, aplastic anemia, and PNH all since she was 19. Thank you for joining us. We'd love to hear a bit more about your diagnosis journey, and then we can, all the 3 of us, can come on camera and just have a really great conversation about how you are managing your care and what you recommend for others who might need a little help. Thank you.
Brandi Lewis: Yeah, Thank you for having me. So like Ashanthi, said, my journey started actually in 2009. I was diagnosed with aplastic anemia the first time around and so went through that, went into remission, and in 2016 I went in just for a routine 6 month checkup, and that is when I found out that aplastic anemia had come back just by doing the casual CPC. And so my doctor decided to test me for PNH as well, and that was when I was diagnosed with PNH in 2016. So now I am stable doing very well with both aplastic anemia and PNH. But through my journey like, she said, has started a foundation at one point, to be able to advocate for blood disorder patients, and just to really help out, just like a passion project for me. But I, during that time, you know, went through a lot help wise, really just trying to focus on what I wanted to get out of it, and really focusing a lot on my health and learning a lot about myself during that journey. And so I'm thankful to say I've learned a lot, and that I'm doing very well now.
Ashanthi De Silva: Thank you, Brandi. Thank you for sharing. I'm glad you took some time to kind of just focus on your health. I think a lot of people, you know keep pushing and pushing through, and it's it's very hard to do that. But I'm glad you're you know, out at the other end of that now.
Brandi Lewis: Oh, yes.
Ashanthi De Silva: I'd love to start our conversation on how people can get organized this year, and really get ahead of PNH. They have time for what they love to do and feel like they're living a full life. Since we just started talking about both of your diagnosis. I would love to first kind of discuss what tips you have for finding resources after a new diagnosis and what are resources you'd recommend for people to find accurate information and support.
Erin Fortin: Thank you. So for me personally, at the time of my diagnosis in 2019, I think that there was a lot of outdated information online. I think that anybody getting the diagnosis, I don't think anybody's familiar with the name PNH when you hear that at the doctor's office unless you are connected to somebody who has it. Even going to different medical professionals where I like to say, “Oh, I have a rare blood disorder.” I think the next question guaranteed that I can bet money on that's coming out of someone's mouth is, “What is it? I think I might know it.” and my answer is always, “I don't think you do. This one's kind of rare.” So I don't usually have a lot of people that are familiar with it.
So with that being said, when I was diagnosed at the time, just trying to learn about it educate myself on it, It was really hard trying to find information. I'm very grateful and happy to say that now when I Google PNH, just a quick little Google search, the first few links that pop up are reputable resources that I trust getting information from as far as the scientific approach. But I think that my suggestion and my tip for getting more of a lifestyle resources is through other PNH patients. I think that I've gained a lot of knowledge just talking to other patients, especially patients that were diagnosed many years before me, and even gaining information from patients that were diagnosed after me. I think that a lot of PNH is trial and error, and how you approach life, how you approach your treatment, and I think that learning from other people's trials, and errors, really helps eliminate time on my end when trying new things as well.
For me personally, connecting through different patients on social media has been a huge help. I think that between doing those Google searches with reputable resources as well as talking to other patients, connecting with your doctor, and coming up with the game plan, where you can have a good relationship with them. I think that all 3 of those combined can really help someone get a very well-educated and well-rounded idea of what PNH is and how to move forward after that initial diagnosis.
Brandi Lewis: Yeah, I definitely agree with that, Erin. So for me, my journey was kind of the same. So in 2016, like I said, I was diagnosed with PNH, and same journey as far, there was not a lot of information out there online. For me, I can get really into my head when I start googling things. So I really, I always advocate for having a really great caregiver to help you out as well and so my caregiver was my parents. And so both of them really did a lot of research of Googling online for me. If not, it would have been me doing it, but I trusted them, of course, to figure out all the information. Now other than the Googling, and trying to figure out and get the little bit of research that was out on the Internet, I did connect with the AAMDS foundation.
They helped a lot, they helped us with answering just the basic questions of “what is PNH?”, “What my path may look like now that I know that I've been diagnosed with this”. You know, “What does the future look like for me?” And the questions they couldn't answer they were very helpful of giving us different resources from there of where to go to. We also connected with the rare disease nonprofit as well. They have conferences that they do all around the US. So they helped me a lot as well in my journey. I actually attended a lot of the conferences, and from one of my conferences it's actually where I found my doctor that specializes in aplastic anemia and PNH. So that was a really amazing experience was to really have those one on one discussions at the conferences with patients just like you, and they were able to help me in my journey.
So when I was diagnosed the first time around I was 19 years old, so I was very young, and didn't really know a lot. Never had been through anything health-wise in my life that was this bad or this important to me. So from those people at the Regencies Conference that also had PNH, I learned a lot from their journeys as well. If you know, having kids, what that may look like in the future… just answering a lot of those questions for me. So I loved having those 2 resources, and just like Erin, I also did social media. You know, Facebook groups helped a lot. And you don't even have to post in the Facebook groups, really just reading. A lot of people are asking the same questions you're asking in there. So really, just reading the responses and the comments from there of what other people have been through in their journey, it really really helps just to connect with other patients for sure.
Ashanthi De Silva: Thank you both. It definitely sounds like the common thread there is connection. So regardless, you know, if you just want to go through social media and search group silently and kind of get information that way, or join an organization like the AAMDS, connection is really important to finding resources and getting the support you need. I'm glad that that was something that you did.
Brandi Lewis: Oh, yeah, absolutely.
Ashanthi De Silva: Yeah, yes. But I think, especially when you're newly diagnosed with a rare disease, and you can't just meet someone, you know, immediately.
Brandi Lewis: Especially when you see the statistics, and they're like you're one in like a million, you’re like, “Where do I go from here?”
Ashanthi De Silva: Yeah, that's maybe when it's not ideal to be one in a million. I'd love to also talk about, you know you're diagnosed, and then you're experiencing symptoms, and with PNH I think a lot of the symptoms can sometimes be alarming. You know Brandi, we discussed bruising, nose bleeds, darker colored urine. Suddenly, you can't get out of bed. You're so fatigued. All of these things can cause stress and anxiety while you're trying to, you know, live your life and there are a lot of unknowns. So I am curious as to if you can think back on your journey, when were you likely the most stressed when it came to PNH, and did you have any go-tos that helped you alleviate stress? Or, now, looking back, do you have things that you wish you had done to help alleviate that stress?
Brandi Lewis: Yeah, okay, perfect. Yeah, I think those are great questions. I'd say for me the symptoms that I had the most I'll say were definitely the bruising in the beginning, the darker color urine, trying to figure out what does all that mean? How does that happen? So sitting down with my doctor and having them answer those questions for me. But I'd say in the beginning, was really when the stress started.
So after having the initial diagnosis, knowing that I was diagnosed with PNH, and for me, you know, I was also diagnosed with aplastic anemia again, and then, having PNH, so, having the stress of now knowing that I am diagnosed with 2 rare blood disorders. How do I tackle this like? Where do what do I even start? I finally figured out how to battle one, and now I have another one on top of that. So that was definitely the initial stress for me.
The way that I deal with stress the most is really keeping busy at something that I'm passionate about, that keeps my mind away from thinking negative thoughts, and bad thoughts in my head, if you know, I don't even know what my future may look like, or I don't even know what next week looks like. Am I going to be able to continue working? So really keeping busy, and that's really where I found my nonprofit. That really helped me the most was really just to find something I was passionate about, and really just hone into that and do that a lot. And the reason I founded my nonprofit was really just because, like we said, there wasn't a lot of resources out there, and I wanted to be able to help in any way that I could, financially through my nonprofit, whatever way it was, just to connect with patients and their families. So it helped a lot with managing the stress that way, was really just to keep busy for me, but keep visiting something that I was passionate about.
And then the things I wish I would have done, the way I'd say in order to help with stress, was, I do feel like I should have researched more than rather letting my caregivers do all the research. I think that would have helped me just answer and calm my mind down around the questions that I did have. But I must say, having and finding my specialists, I found my doctor from the Rare Disease Conference, which really helped me a lot. He was very honest and open at that time of where I was in my life. What could happen? What he's seen in the past, but he was also very comforting of “You're gonna have a future. You're gonna have a life”, you know. “We just need to figure out right now what you know. How do we get you there?” So, having that calming voice helped me out a lot with the stress.
Erin Fortin: Yeah. For me, I think that the most stressful time of my journey was that initial diagnosis as well. I think that there was a lot of different anxiety for me with needles and IVs, and I just didn't know what my life was going to look like moving forward. I think at the time of my diagnosis, the available treatments were, you know, relating to being poked and pried at certain times. For me, hearing that, with that being such a big phobia of mine, just clouded everything. I think that everything started just blackening in, and that was all I was focused on.
I remember, similar to what you just said, Brandi, that my doctor said the same thing. Where his exact words were “You're at Point A, I'm going to get you to Point B. Don't worry. You're going to get to Point B”. And I remember, I felt so bad– I cussed at him, and I was just like, “I don't care. I don't. I don't care about getting to Point B. How how am I getting there?” Because the answer was, you know, starting a treatment option. And I think that that to me was very, very stressful.
At the time, the way that I was managing the stress was more to try to focus on what was causing me stress and how I could divert that and change it. And I think that for me, with the biggest stress factor being needles, I started just researching different techniques on how to overcome that fear and how to overcome that phobia. And a lot of the different techniques were just saying how like, especially the inside of your arm, where your elbow is, of where typically an IV will go, is a spot that's not normally touched, where your nerves in that area aren't normally activated often. And the one piece of advice that I found to be so strange but actually helped, was even just using an electric toothbrush just to kind of push against that area. Just so you get used to being touched there, and like having, like those nerves activated. I think that just mentally trying to appease my fears helped me get through that time, that stressful time period between being diagnosed and actually starting treatment.
I think that my mind kind of took, you know, its own course of action with thinking about “What is my life going to look like?”. You know the pros, the cons, and just trying to connect with other patients going back to that will really help me learn that even though I'm going to be starting this new journey of life, it's possible to still have a happy life with that, you know, I'm viewing it more of a negative. And I think a lot of people just seeing that they were stable, they were happy. They were able to fulfill their dreams. Things that were very positive made me realize, like, okay, this isn't a negative. I can use my own language. I can turn it to be something positive in my own brain. I think that for me, the fear and anxiety were a lot of dealing with my mental health, and just trying to understand everything I think that trying to face all of it at once could be extremely overwhelming. That just breaking it down into parts of what exactly is causing me fear and anxiety, and trying to negate that, along with just what is, you know, the struggle on my mental health right now, and just trying to focus everything at once to be stressful.
Another tip that I have just for dealing with stress during those stressful times is just open communication with everybody. At the time, I was working full time, and I think another stress factor was, well, “what if I have to take time off of work?” You know, “what if I'm not feeling well,” and that was causing me a lot of stress. Once I had open communication with my bosses at the time, just to let them know, “You know I'm struggling at the moment,” you know, “I'm still fully committed to work. I want to be in this, but I just, you know I'm not feeling well,” and they were fantastic with me. They were able to give me time off whenever I needed it. You know. Maybe somebody with their positioning at work may not have that, but just having that open communication, so that you could say, you know, maybe give and take a little to say, “Hey, I'm not feeling well this day, but maybe can I come in to work early tomorrow or stay late tomorrow” and kind of figure out a way that can work for you, but just having that open communication will also hopefully eliminate some of that stress and anxiety.
Ashanthi De Silva: I love that, and thank you so much for speaking to the challenges with work, too right? It's especially as you're actively symptomatic and dealing with so much at once. I think that's really important. Something I noticed that both of you touched on is it sounds like something that helped relieve some of that stress and anxiety was having a doctor who understood PNH that you could talk to. So I'm curious, for those who, you know, registered or on the call right now who may not have access to a specialist. They were diagnosed at their local clinic, but they don't necessarily have someone who has seen someone with PNH before. Do you have recommendations for how they might find a specialist?
Erin Fortin: Yeah, I think for me. Personally, I was able to find specialists through the PNH Support group on Facebook. Luckily the timeline of how that all played out for me was very quickly. Same as Brandi, my caretakers really stepped up and helped me while I was mentally trying to process everything. The day after I received my diagnosis, actually, it was that night, my mom had found a group on Facebook and connected with the patients, and they all recommended PNH specialists for me in my area, and I was able to get an appointment the following day. So, luckily for me, I was able to see a specialist just 2 days after my diagnosis.
I think, in hindsight though it was a lot of information at once. I just wish that I would have maybe just taken a minute just to sit on it and breathe and focus on just understanding basics when seeing the PNH specialist was very info base. It was very scientific, it was, you know, it was a long– I think I was there for about 5 hours that day. It was a long, long visit with the specialists, but as far as finding this special specifically for me, it was through just talking to other patients in my area.
Brandi Lewis: Yeah, I am very big on finding a doctor that really understands you when you can be open and honest with that doctor. My journey was very different. Where I am, I, or where I live. There is no specialist in my area. So like I said, I found my specialist by going through a conference. But I think you can find a specialist the same way Erin did, or really just talking to other PNH people. That's really where it's going to be the best way to find a specialist. My specials actually lives in New York, so me and my family traveled there. We were like, this is my health. This is very important. I need this to live. We don't mind traveling, so I would travel. I think we started going every month, and then every 3 months, and now every 6 months. But I developed a great relationship with that doctor, and even just my initial visit with him I was able to be very open and honest with him, and he was very able to be very honest with me. I mean he would even joke with me, “I think it's time that you, you know, start doing this, Brandi.” Like he would say it very nicely. But he was very honest with me. Of “This is where we are,” and like me and Erin said in the beginning, “You know I'm going to get to you to that Point B. I'm going to get you where you want to be. But please trust me.”
So you have to find a doctor that you can trust. That's going to be the number one thing I always advocate to patients. It's just to really find a doctor that you can trust. And it's okay if you see a couple of doctors and you have, you know, initial meetings with 2 or 3 different doctors until you find one that you're like, “Hey, I really like this person. I vibe with them. They understand me, I understand them, which is great”. And then, lastly, another thing that I've done in my journey is now. I see my specialists well since before Covid. It was every 6 months, but I have a doctor and oncologist that I see where I am now. And my oncologist I see him every 6 months now for a check-up. He will then talk to my doctor and send my specialist in New York my medical records. They actually talk on the phone about my journey just to make sure that they're both understanding of where I am. And I love that I have my doctor here, and he does not have to pry in order to say, “I don't know what this is, but I want to help you, and I want to treat you.” So he works very closely with my doctor in New York just to make sure that they are on the same page as far as the treatments that I need. He'll talk to my doctor in New York and be like, “Hey, she needs this type of medicine or this treatment,” and my doctor here is like “I'm on it. We'll get it ordered”, you know all of that. So I do have a very great relationship with now with 2 doctors, one that's just an oncologist, since there are no specialists in my area, who now talks to my doctor in New York. So you know there are so many different ways to find your doctors. But as long as you trust who you're around, that's really all that matters, for sure.
Erin Fortin: Sorry I was just laughing a little bit, because my doctor, my local doctor, does the same with my PNH specialists, and one time he was bragging to me “Well, I have his cell phone number. I can him personally”. And it was just, it was a cute moment where I'm just like “Well, I have his cell phone number, too”. Like because PNH is so rare, I think that the doctors, they really take it seriously, and it's really comforting to be in good hands.
Brandi Lewis: Yes, it is very comforting. Yeah, that's so funny. I love that.
Ashanthi De Silva: Oh, I'm so glad that both of you have that relationship, you know, not just with your specialists, but with your doctor that you see more regularly where they can communicate as well. So you really, you're not just, yeah, putting all your eggs in one basket, you have a lot of support. I think that's really important for you people with PNH or rare diseases to remember is that you are worth it. You're worth, you know, doing that search, seeing who works with you, you know, there are always options. So don't feel like you have to be, you know, stuck with the one person you that's in your area. Keep looking and keep, you know, searching for the person that really is out there to support you because there those doctors are out there. And that's why I'm so glad you both have those experiences because I think patients sometimes need to hear that. That. “Okay, that's what's out there for me.”
Erin Fortin: Yeah, I actually ended up switching doctors. My original local hematologist. I felt, you know wasn't giving me the support that I needed, and I was able to switch doctors and find that. So I think that also, being your own advocate is finding a doctor that fits you. If there's one that doesn't, it's okay to switch to others.
Ashanthi De Silva: Absolutely. I feel like we should put that in a quote somewhere. So thank you both for discussing that a little bit more. And I'm curious as to, you know, when we're talking about not just getting ahead of PNH, but also staying organized. Again, so you have time to feel like you're, you know, doing the things we actually want to do. Are there tools or tips or tricks that you're using to stay organized with your health? And you know, help you keep on top of things? Sometimes, when you devote a little more time to these things, it actually makes the rest of life a little easier. So I'm just curious if there's anything like that that's helped you.
Brandi Lewis: Oh, yeah, I'd say for me, like we talked about, the bruising is a big thing. I always say you know your body better than anybody else that knows you. Like, you know, once you get in tune with yourself, you know, if you're not feeling well that day, you know, if you like, you have bruises on your body you can just start feeling it. Because I feel like through any health journey, anybody has been in, you really start to get in tune with your body, and you can feel it. And so for me, I just try, you know, check my body out regularly and make sure, you know, I don't have any bruising, the dark color urine.
One big thing, and I forgot this Ashanthi, was the brain fog. Brain fog is a huge symptom of PNH as well, which that's, I say, one of the main symptoms I do still struggle with today. So I have an app on my phone that's just like a memory game app. And so I'll do that every once in a while, just to really help me with the brain fog, and I work a full-time job now, so I'll like write notes down just to make sure I'm remembering it. So I have little tips, and you know, little tricks that I use just to help with the brain fog on a daily basis.
But other than that, I just, you know, stay in tune with my body, check it out. If my body is saying that I need to rest, I don't over do it. I used to over do it. And now I'm like, no, take that time. Rest. It's going to be okay. I feel like I learned the art of resting. Finally. It really is like an art. I feel like, you know, just really understanding that those days that you rest, you aren't like what you feel like you're supposed to be doing. You aren't taking away from that. This is something you really truly need in your body. Saying, I just need a day to rest, and tomorrow I'll feel better. And that's really okay. And I think mentally being okay with that also, especially in our health journeys, fatigue is huge. And so, when your body is like, I'm tired, I really can't go anymore. Just rest. And really, just listen to your body.
That's been a really big tip for me, and then also with Covid being here, you know I'm more sensitive now to like washing my hands, sanitizing, making sure that you know when I come into my office that my area is sanitized. And if I need to wear a mask if I feel more comfortable some days wearing a mask I'll do that as well. But really just noticing what's going on around me, but also just, you know, trying to say to myself and stay sanitized.
Erin Fortin: Yeah, for me, I think that with managing my care, I definitely see 2 different roads here. One of them as far as organizing my medical records and just being on top of everything. And then the other part of managing my care is actually managing symptoms and day-to-day life. So breaking them kinda down into those two. I think that going off what Brandi said about managing my day-to-day symptoms is really just listening to your body. I think that taking a moment to just really think about what's going on sounds very simple. It sounds like, oh, yeah, I do that all the time. But do you actually do that? I think that really just taking that moment to breathe in and breathe out, and really kind of like, think about each part of your body from head to toe. And just think about how does everything feel? How do I feel mentally? And kind of just check in with yourself.
I think that for me, before PNH and it still pops through at times, my lifestyle was very focused on productivity. My day would be started, I would think about my to-do list in the morning, think about what I wanted to get done, and if I didn't get everything done at the end of the day, I would be hard on myself and think, like “Well, was I lazy? Was I sitting around? Why would I do that. I didn't get everything done.” And I think that PNH really taught me how to slow down and realize that life isn't about productivity. It's about just feeling good and having a great day. If I get certain things done that's great. If I don't get them done. That's okay, too. There's always tomorrow. I think learning where your limits are is important for managing your care. Learning where you need to rest where you need to stop and take a break is really important for the managing your symptoms. As far as managing my care organizational wise, I think that there's a lot of unknowns when it comes to PNH and the one known that you can take control of is staying organized. I think that watching your lab work, watching your patterns, the graph chart of where all your numbers are at is important. I think that it can lead to connecting how you feel to your labs. So, by watching your graph of where all of your labs are at, you can connect that to how you feel and kind of use that as a tool to determine how you're going to feel for that period of time. If you get blood work done. If I know that, say, for instance, certain labs are in a normal range and good range, and it's like all right. Well, you know, I use that as my silver lining to say “All right, well this is going to be a great week. I'm feeling good”. It's almost like like the idea of a placebo pill where it's just like. Mentally, I'm like, “I know my numbers are good. So like I'm gonna have a great week, and whether I do or don't, I'm gonna make the best of it”. So I kind of use it as a way to mentally prepare for the upcoming days and upcoming symptoms, and everything like that.
As far as like saying organized, though, before joining PicnicHealth, I had a lot of experiences with trying to request my medical records for my doctors. I think that it was such a process that I would have to call them, I'd have to drive there, pick them all up, and then organize them. I had my huge binder to go through everything. And when all of this was happening, I was also trying to process my diagnosis, process how to carry all this weight on my shoulders of what my life will look like, at the time connecting with other PNH patients. There was just so much going on that now I'm extremely grateful to have all my medical records available online.
See, for instance, the other day, I was getting involved in a project and I needed to provide proof of my PNH diagnosis with just, you know, paperwork. And I was thinking to myself, you know, normally, I would have to call my doctor's office, which me being a millennial– doesn't like to talk on the phone. So I was already getting anxiety that I'm like “Gosh! Now I have to call. I have to figure out how to use a fax machine, so I can get it as soon as possible”, or you know, tell them my email address, trying to spell everything over the phone. And it was just like stressful. And now I was able to kind of eliminate that process and have my medical records online that I was able to pull up easily. I'm able to pull different PDFs from PicnicHealth to save onto my computer. So even I have it more handy that I can just have it saved in my email and send things out easily. I think that managing your care really helps you stay on top of the game with PNH. Just because of how unpredictable it is that certain things that you can control really helps you to feel empowered in your PNH journey.
Ashanthi De Silva: Thank you both.
Erin, I'm so glad that the timeline has helped you in that way, and I loved what you said. I don't think I've ever put those two things together, but looking at your lab, you can maybe kind of give yourself some grace if you are feeling badly that week you can say, “Okay, well maybe this is why”. You have like and answer or reason around it. That makes a lot of sense.
Both of you, you really touched on being present and I think, really being in tune with your body. And so that can help. And I hope people, you know, take that as like a take away from this, that you don't need to have an app or anything like that. You know, one of the most important things is probably just being present, focusing on yourself, and not ignoring the symptoms that you're going through.
Brandi Lewis: Yes, for sure, please don't ignore them. Yeah, your body is telling you something all the time.
Ashanthi De Silva: Absolutely. Well, I know we have just a few more minutes, and I'd love to leave some time for questions and answers. So do you have any last, you know, supportive comments or advice for folks on managing their care.
Erin Fortin: I think just for me, just to continue looking for silver linings is a really good piece of advice that was given to me that I like to give others. Everything can be spun to be a positive.
It's easy to get pulled into a black hole when you receive such heavy news of a diagnosis. I think it's easy to sulk in that, and you know just kind of let the days go by as you're trying to process. I think that trying to spin things positively is really great for not only your mental health, but I think your physical health as well. You know, starting each day by getting dressed, you know, doing your hair, brushing your teeth, just starting a day off right is that mindset that's also with your lifestyle when it comes to living with PNH or any diagnosis. That starting your day off strong, your week off strong, your year. Especially now that it is a new year going in 2023, I think having that positive mindset will really help you push forward. So just continue to look for the silver linings in everything. You know for me with PNH, say for instance, right now, my silver lining is talking to you guys, connecting with each one of you, meeting you guys in general. If I didn't have this diagnosis, I wouldn't meet any of you. So different ways to look for silver linings.
It's very true. We all have met each other for a reason.
I'd say for me, my mom always said this quote to me every day. And she always said, “This is only a mere moment of your life right now”. It looks huge right now. It looks big. But looking at me and Erin now down the road, we probably never thought we'd be on a Zoom Webinar talking about our journeys and being able to help other patients that are in need.
So I always say “Where you are right now. It looks so big, it feels so big right now”. But years later you will be thanking yourself that you know, “I got through that, I did it”. Like that's my little award to myself. I really did that. I accomplished that. I feel like people that have gone through any health illness are very mentally strong people, because you learn how to be mentally strong. You don't have a choice. So it all starts in your mind as well. Just whatever it is that makes you feel good about yourself, whatever it is that makes you feel just a little bit of peace, even if it's just for a mere second. Just something just to give you piece while you're going through the journey. I say, do that. Go with that for as long as it gives you peace and then find something else if it's not working anymore. For me like when it was working out, then i'd work out for a little bit. I'm like that's not helping anymore. I'm going to do a passion project. So it's always something different. But just finding something that gives you peace in your mind is really going to help you on your journey.
And then the last thing I would say is for me, when I first found out that I was diagnosed with PNH, I found out on a Friday. And so it was actually on my lunch break, and so I didn't go back to work. But I found it on a Friday. And so I remember telling my parents, and I was like “I just need the weekend to sulk and then I will get up Monday, and I will fight”. But I need to give myself time, and my body that time to just cry it out, be in shock for a little bit. So I took the weekend, I literally sulked, stayed in my bed, watched all the movies, ate all the ice cream on Saturday and Sunday. And then I got up Monday and I live with my parents, and I'm like, “Okay, I'm ready. Let's fight. Let's do whatever it is in order to get me to where I need to be in my journey health wise.” And so I say, take that time to sulk. It's okay. Don't feel bad for doing that. It's a part of your journey. But don't stop fighting. Always fight for where you are in your life, and just never stop fighting for who you are, and you're meant to be here for a reason.
Ashanthi De Silva: Oh, Thank you both so much. I love that you know really just to ensure that you're taking time for yourself, that you're being kind to yourself. Those things are really really important, and remembering that, you know you are a resilient person, and you can get through these times. So I really appreciate you both sharing that.
I know I'd like to take the last 10 min or so to answer any questions that people may have. You can feel free to use the Q&A chat box and drop any questions if you haven't.
Erin Fortin: Brandi, I like that you use the word passion projects. That stood out to me instead of calling things hobbies. Passion projects– that definitely adds a little umph behind it. I'm going to use that moving forward.
Brandi Lewis: Yes, I do. I feel like they're more passionate projects because you're doing it because you like it. You're not doing it for you know the money or anything else for sure.
Ashanthi De Silva: So we did have a few questions come in, and this might relate to, you know, your passion projects. But someone is curious about ,you know, what are some of your hopes and your own goals? For 2023?
Brandi Lewis: I'll go first. For me my goals this year is… I love telling my story, and I want to keep doing that this year. So I I wanted to keep doing and doing it even more this year, is really just telling my story, being able to help anybody that's been on the same road as me. Going through some of the things that I've gone through health wise because I feel like we're… So many people helped me in my journey, and I feel like now it's my turn to do that, you know, passing the torch. So I really want to spend the year just helping others, whatever way that is. You're welcome to reach out to me in any way. I am happy to talk to anybody, and really helping them out.
Another thing for me is just really keeping my health at the forefront, I think, is a really big goal for me this year. I worked out a little bit with with Covid. It's been kind of off and on. So I'm really wanting to get back into finding some way of working out that I really love. I'm actually taking a hot yoga class this afternoon, so I’m excited about that. I took one Sunday. It was hour and a half. It was very long, but I was like, you know I'm gonna stick with this. So just finding something that I– I love Yoga just because it, you know, eases your mind, you're at peace, you're only in that room. So just finding something that mentally is helping me. You know, we all have a grind of day to day things that are going on. But to really just stop and be thankful for where I am, but also stop and do something that I want to do for me. And so I'm really, really big on doing that this year.
Erin Fortin: I think for me, my hopes and goals for the year, I think that going back to my old self, of productivity, my goals are to, you know, do X, Y, and Z. To be more specific I think my husband and I are in the process of searching to buy our first home. That's been a very exciting goal that we have going into the year. Of course, you know, being active and being healthy. Those are goals that I think a lot of people have going into the New Year.
PNH wise, my goals are just to stay healthy and stable, continue my process and my journey. But I do have to admit, not to sound cliche, but I think that I almost want to put a big X through all of those goals, and just make my main goal for the year just to be flexible. I think, just being more in the present. I think that that mindset of that productivity of you know “These are my goals. I have to meet them” like almost just to give myself grace for the whole year of just “You know what? Let's just have a good year. Let's just go a day to day. Let's just have fun”, and whatever happens, happens. I think that where I'm at in my PNH journey right now really is just focusing on flexibility. And just some days are going to be good, some days might be a little bit harder. But overall we're just gonna have a fun time.
Brandi Lewis: I love that. Give yourself Grace. That's a good goal.
Ashanthi De Silva: Oh, that is beautiful. I think that also just helps you stay present, too. So yeah, that's really lovely. We did have a question, and I think it kind of relates to that. You know, for this year, how are you both continuing to have hope, and even say, if you're going through health ups and downs. How are you kind of able to push through that?
Erin Fortin: Yeah, I think that it's definitely a hard question. There's not always an easy answer. I think it's going to depend upon each person. For me just talking about those silver linings. For example, my treatment days in the beginning, when it was harder for me to process and I had a lot of anxiety, even just the night before or the day of. Just a burden, and that weight to carry that it was a treatment day. I like to set little rewards for myself that something as simple as taking a multi vitamin. I take gummies and I like the purple flavor which is the grape flavor. And they're always delicious, so I would save my purple grape multi vitamin gummies for just treatment days. So that way it was kind of like my little positive, for the day is like, “You know what this this stinks, I have treatment” but then I go over to my pill box, and I'm like, “Oh, purple!” And I get all excited. So like kind of just those silver linings to really help– just give you little pieces of joy.
I think that understanding and being realistic, that maybe not every day is going to be filled with 24 hours filled with joy. Even if you can just give yourself just a couple of minutes of joy, and look forward to those next set of minutes of joy, it can really help you push through the tough times. And just really trying to remain positive. Again, it's easy to go into that sulking moment, as Brandi said, “Let yourself have that moment”. The more you fight it, the harder it's going to be to keep moving forward to let yourself have that sulking moment, but then move forward and find those bits of joy and just kind of help you get through that period. I think that the more you do it, it's easier, and you find yourself subconsciously fighting through it more than you even realize that you're doing it.
Brandi Lewis: Yeah. And for me, like Erin said, it is a hard question to answer and I feel like it's going to, of course, be different for everybody. But for me, finding hope now and even during my journey was really finding something to look forward to. I, at one point had a calendar and I would just write like even little things like, okay,” My sister's coming into town this weekend. That's something for me to look forward to”. You know “It's Fourth of July, like I'm gonna do fireworks”. So being intentional and finding something to look forward to, even if it's just like me, I have a yoga class this afternoon. That's something that I have to look forward to. That's gonna help me mentally and to better myself. That has always helped me in my journey just to find hope of “Okay, I'm one step closer. I'm one step closer”. “Okay, I have a treatment this day, it may not be the best day, but after that, you know, this is what's happening on my calendar”. So, having something fun to look forward to, whether if it's like traveling or going out of town to see friends and family. That will really help you. I feel like just to find some hope in, you know the next day is coming. This is what I have the next day. And then another thing I used to do every morning is I would literally, when I open my eyes I’d say “I am thankful for this day”, like “I'm awake, I'm alive. I'm here, I'm here to fight. Thank you for this day”, and really just giving myself being gracious of that from the start of my morning really helped me set me on, you know, for the rest of the day. That helped a lot.
Ashanthi De Silva: Oh, my goodness, there is so much that both of you have said that you know I just feel like it's been wonderful to hear both of you talk about your– while they have been very different journeys, there's so many similarities and how you can manage things. I think sometimes being diagnosed with a rare condition you're kind of just forced to slow down a little bit and yeah, wake up and just be thankful for that day. Life gets a lot simpler sometimes. So I just can't thank you both enough for your time for how thoughtful you've been in your answers, and for being willing to be an open book and share so much. I really appreciate it. And I know people here do too. I don't know. If you realize but I feel like you have taken people from a place of fear, which is very understandable when you're managing so many unknowns, but to a place of empowerment. Because there was so many wonderful tips that you both mentioned that were, you know. It's something like waking up and trying to say, “Thank you for this day.” It cost no money. You don't need to download– nothing like that. And it's just something that you can have as one of your tools. So thank you both, you know. So so much.
Brandi Lewis: Absolutely. Thank you. I'm excited to be able to do this.
Erin Fortin: It was really nice talking with you guys.
Ashanthi De Silva: Yeah, it was lovely speaking with everyone and thank you for joining. We will be putting this recording up on a new PNH website soon, so we'll keep you posted about that. And I hope you all have a wonderful rest of your day. Thank you.
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
Ensure You Have the Appropriate Legal Status
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
Gather and Organize the Medical Records in One Place
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
Review the Medical Records to be an Informed Advocate
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
Explore treatments and clinical trials.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
Make time for self-care.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Having trouble managing your loved one's medical records?
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.
Learn more about contributing to IgAN research with PicnicHealth.