Dec 16, 2020
SPECIAL EDITION: Moving Forward
The PAH Initiative and United Therapeutics are excited to
bring you the PAH Today National Broadcast Series. This series of
virtual events is intended for adult patients with pulmonary
arterial hypertension (PAH) and their caregivers.
Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH.
This is the 4th of 4 PAH Today broadcasts to learn about how you can be empowered to stay informed, motivated, and focused on your future.
Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and PAH patients Denise B. & Lauren J. Learn more at: www.pahinitiative.com
Dr. Lana Melendres-Groves:
Good afternoon and welcome to the PAH Today National Broadcast Series. Today, we're moving forward. My name is Dr. Lana Melendres-Groves and I'm the Medical Director and an Associate Professor at the University of New Mexico.
On behalf of United Therapeutics, myself and everyone joining us today, I want to welcome you. Whether you were on your own PAH journey or here to support someone you love, I hope today's series is informative and helpful. This presentation is sponsored by and made on behalf of United Therapeutics. Healthcare professional speakers such as myself are compensated by UT. Not all drugs are appropriate for all patients, so speak with your healthcare professional to determine which treatment plan is right for you. Patient experiences relayed during this program may not represent the experiences of all patients.
If you've been with us throughout this series, you know that we've covered a lot of information, but today we really want to focus on helping you move forward on your PAH journey. We'll talk about three different areas. The first is going to be about getting informed and staying informed. Next, we'll talk about staying motivated, tips on how you might be able to do this because each of us, we all need a little help on certain days. Third, we'll focus on your goals, so that what you do today will help you through tomorrow.
All right, so let's talk about getting informed. I think that when any of us have something new to learn, it can feel overwhelming. I always think about it in terms of my daughter who's learning to read. Now, I know I can't walk up to her and hand her a novel and expect her to read it. Instead, I have to give her the basic tools to be able to. Those building blocks she needs to learn the sounds of letters. With those sounds, be able to make a word. With those words, be able to read a sentence so that someday she will read that novel.
When we think about it like this, in terms of PAH, we also need to learn the basics, those building blocks. In one of our earlier series, we talked about that. We talked about the heart, the lungs, the blood vessels, and how they all work together to keep us alive and how specifically in PAH they are working the correct way. By knowing those basics, we can then build off of that so that you're able to do your own research and find things that are important to you, or that you may have questions about. You'll be able to get those answers. More importantly even though, is to stay updated. This is a disease that we learn more and more about. Our treatments continue to expand. Over the past 25 years, how far we've come is tremendous. So knowing what may be new today can help you in your tomorrow.
Make sure that you feel like you can have an open and honest conversation with your healthcare provider, so that if you have questions, you feel like they're being answered. Let's talk a little bit about where you might be able to find some of those resources. Now, I mentioned talking to your healthcare provider. For me, I think that's the first place you should go, because they really should be the individual that you feel confident and comfortable with in terms of sharing your concerns or maybe gaps in your own knowledge. You have people right there in your own home potentially, or your community who can help. Your caregivers, they may not have the medical knowledge to answer your questions, but they're there to help. I'm sure they'll help you find that information.
That brings me to advocates. In some situation, the caregiver is your advocate and in others, that is a person who is helping you along your PAH journey. Now, I don't want to forget to mention the patient group meetings. These are essential to create a network for you while you're on your PAH journey, so that you can have others who may be able to share similar experiences or give you information on where they found something that was important for them. Some of the places that you might want to visit online are the PAH Initiative or the Pulmonary Hypertension Association. These are just several that have good information that may help you to learn more.
I do want to spend just a little bit more time on the www.PAHinitiative.com because this is a robust learning library with resources for all levels of patient education. I think it's wonderful because it has not only informative videos and interactive content, but continues to expand the information on a frequent basis, so important to visit it often. At this point, I think I've talked enough about what I think. Instead, I think it would be wonderful to hear what Lauren and Denise, who are two real patients on their PAH journeys, do to continue to stay informed about their disease.
Hi, my name is Denise and I am a PAH patient.
Hi, I'm Lauren. I am a PAH patient. I've been diagnosed about 10 years now.
As you know, there is so much happening in the PAH community and it is so important to stay informed.
I am excited to share a little piece of my story with you.
I'm sharing my journey with you today. I hope you enjoy it. Thank you for listening. When I was first diagnosed, I didn't really know the difference between a cardiologist or my PAH specialist. In my personal opinion, I believe that seeing a PAH specialist is way more beneficial to somebody because they are the expertise in this field.
My relationship with my doctor is very good. I respond very well to people that are straightforward. There's no sugarcoating. She said, "I'm your specialist. I promise I will take the best care of you that I can, and this is what's happening right now."
I think it's pretty important to stay on top of the research and to find out what's going on out there and you might talk to your doctor about the new things that's upcoming or different drugs that are out there. You can talk to them and see how they feel about something. Is it something that is going to be right for you?
Assessing your risk level goes hand in hand with being compliant as a patient. So when your doctor orders tests and appointments for you to show up at it is crucial that you show up and get those testing done, because based off that it shows how your PAH is in a current standing. So are you stable? Have things changed? Have your pressures gone up? Do we need to change medications?
The most drastic changes for me personally, that I've had to make is that I'm not going to bend over and pull things out of the bottom of the cabinet, or you don't want to pull things off the top shelf. It's just learning your new normal and to be able to do different things.
The lifestyle modifications were quite a bit of a challenge too, like how do I hide my pump? All of that kind of stuff was more of a barrier that I dealt with on a daily basis.
I see my PAH specialist about every six months. Usually when I prepare for my doctor's visits, I would just tell them if I had had chest pain or tightness, or if I feel like I was at a grocery store and by the time I got home, I couldn't even breathe.
I wear a heart rate monitor when I exercise and that way I can see what did I do that day. I can always show it and reflect to my doctor how I'm feeling based on where I'm at. You need to be clear in communication with your healthcare team and mention things way sooner than later. PAH is a very stubborn disease, and I think it is so important to stick to your plan with which you had made with your doctor in terms of medication and adherence to medications.
Dr. Lana Melendres-Groves:
Well, we've talked a bit about how we stay informed and become more informed. Now it's time to talk about staying motivated. Although I'm going to talk about goals, which may not seem the same as staying motivated, I think in a minute, hopefully you'll understand. A goal is something that drives you to move forward. We want to reach that goal. And in order to do that, trying to stay motivated. By making personal goals or treatment goals, it allows you to have that checkpoint in insight where it's not just one day after the next with no end. Instead it's, I would like to experience fewer symptoms like fatigue or shortness of breath. Maybe it's spending more time with family or friends or just being more active. All of those things may be an important goal for you. Then let's move over to treatment goals and these may seem completely foreign or different from your own personal goals.
Often this is where I think there's a disconnect between what a provider is talking about and what a patient is talking about. Well, I hope I'm able to align those for you today, because treatment goals may be something like improving how the right ventricle is functioning or slowing down the disease progression. By achieving those treatment goals, we're also potentially achieving some personal goals where when your heart is functioning better, you'll have fewer symptoms and be able to do more. So I think it’s important to start thinking about goals for yourself that are achievable. In doing that, it's really important that one, you write them down. I think that we often forget what we could do back when we felt normal. So it's important to remember back how you used to feel and what you used to be able to do and then you really think about how you feel today. And in talking with your healthcare provider, what might it be goals of three months from now, six months or a year from now, so that you really have something to look toward and to get to.
It's then important to check in often on, are you achieving those goals? Have you surpassed those goals and need to make new ones? These goals don't have to be groundbreaking. They may just be being able to bring your groceries in from the car. That is okay. That is the baby steps that turn into miles and miles of road behind you on your PAH journey.
So how can we bring those PAH goals to life? Well, this is where I think everybody is very individual. For me, if I wasn't in the medical field, I think I would have been a, probably struggling artist, but I love it. I love to express myself through creative means. So a vision board may be the right thing for me. I actually really liked poetry. So potentially writing a poem that had some of those things that you would like to be able to do again. Other people are more concrete. They may write themselves a contract because they can stick to that. But it's important, whatever works for you, you write it down. You look at it often, so that you can continue to move forward toward those goals. When I was looking through all of this and preparing to talk with you all today, I thought back about my mother when I was a child and how I used to hear her talking in the other room. Now, at first I thought she was talking to somebody. But later, I realized that she was actually just saying out loud that things that she planned to get done that day and over the course of the week. I thought it was funny as a little kid and now I realize that when you say something out loud, it is so much more meaningful.
So using positive language and encouraging yourself. Checking in regularly with other people so that you feel like everybody is helping you along that journey. Then, celebrate the successes. I think we're so hard on ourselves often. But we have to remember that whether it was a little one or a huge milestone, we have to be able to congratulate ourselves so that we can for at least that moment, breathe deeply and really feel as though we're moving in a positive direction. Checking in with our advocates. Celebrating ourselves. Those are things that I would really ask you not to forget to do.
So we've talked about how we might be able to stay motivated, write down goals. You may already be doing a huge amount to improve your PAH, but you should never stop asking, "Is there something more I can do for my future?" This is where you need to feel confident to want more for yourself and to talk to your healthcare providers in order to get there and to achieve that. To be able to ask yourself critically, "Am I feeling better? Are my symptoms the same? Do I feel as good as I could feel," so that you continue to reevaluate those goals and make new ones for yourself. This is where I'm going to get to invite Lauren and Denise to give us a little bit more information, because they are experiencing this on a day in and day out basis. It would be lovely to hear how they continue to stay motivated.
I literally think I spent the first year on the couch, not because the doctor told me to, but I was scared to literally move. I wish somebody could have told me in the beginning that you don't need to be fragile, you're not going to break. I mean, I'm not telling you to run a marathon, just do a little something more positive tomorrow than you did today.
I think it's important to set improvement goals for yourself while you're working with the different therapies and all of that. What can you do to make things better? It's all about the fight, because if the fight isn't there, then what are you going to accomplish? Set your goals and then set them higher.
Generally, it is a goal of mine to try to beat the last six minute walk test. The doctor comes in and he'll say, "Oh my gosh, you walked farther than you did the time before." It's definitely a good feeling.
A lot of staying positive for me is reaching for my daily goals. So a lot of that has to do with my exercise and I also am a practicing Yogi. So I do yoga probably twice a week. I do everything in my human power to make sure I'm in the best health that I'm in. So my husband and I have adopted a low sodium diet. It took a couple years to get used to the whole idea, but it was worth it.
To be able to go to the grocery store on my own or drive that two hours to an event or different things, definitely is something that I wasn't sure I was going to be able to do. It's just learning your new normal.
There was one time I remember running up the stairs to my apartment and being like, "Wow, I can breathe. That hasn't happened in a while. That's pretty cool. I think things are working."
One day I went to the beach and I was by myself and walking through the sand is hard enough, but with PAH it's hard to walk. But I walked pretty far. It was pretty amazing. It was like I had no limit that day.
My support network for me has been everything. A huge chunk of my support is my husband. He stuck with me through it all, even though I told him to run.
I really think you need some kind of outlet, you need some person to talk to and find something, whether it be another PAH person or just somebody. I'm definitely looking for in advancements in PAH treatment. I hope we find a cure very soon.
Never stop achieving. Never stop reaching for your goals. It is so important to have the motivation and strive to reach for something. When you hit that, reach for the next goal. Never settle, own your health, talk with your doctors and you're not in this alone.
Dr. Lana Melendres-Groves:
So we had a chance to talk about staying informed and staying motivated. Now we're going to shift gears just a little bit and talk about staying focused on your goals. So what can you do today to impact your tomorrow? For me, the very first thing is finding a PAH expert who's right for you. Now it's important to know that PAH is a rare disease. So not all cardiologists who are heart specialists or pulmonologists who are lung specialists have expertise in treating it. That doesn't mean that they're not great physicians or providers. This may just not be their area of expertise. So make sure to seek out a health care provider and a treatment team with experience using all of the available types of PAH medicines.
This brings me to, if you find that person, feel confident that you can share information with them, good information or bad information. We understand. We all have slip ups along the way. So maybe you ate a little bit more salt in your diet and you have swelling. It's okay to talk to us about that. We're here to work together, not criticize, not critique, but instead to help make sure that your tomorrow is even better than today.
So how do we move toward a better future? Well, in most things, it's important to be empowered. For PAH, it's even more so. You need to feel that if you're still having symptoms, that you can talk to your healthcare provider, so that you can come up with ideas or management strategies or treatment options that might help you do better. Then, never discount today. Even if you feel as though getting up is just too overwhelming. Just a few steps every day, a few minutes even, to be able to improve your tomorrow. Continue to make strides so that your tomorrow is so much better than today and that your goals can be reached.
This concludes the 2020 PAH Today National Broadcast Series. To watch parts one through three in this series, visit www.PAHtoday.net. Also, consider joining the PAH Initiative at www.PAHinitiative.com, where you can stay informed, stay motivated, and stay focused on your future. Thank you.
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