I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Episode 290 - Taryn Petry 10/14/2019

Josh Lampa - phaware® interview 289 10/11/2019

Josh Lampa - phaware® interview 289 Pulmonary Hypertension patient, Josh Lampa talks about the importance of online and in-person support groups and why disease awareness is so important for physicians. Hi, I'm Josh Lampa and I have pulmonary hypertension. I was diagnosed in 2010. I think I've always had PH, because I was always a little bit short of breath when I do my walks, and I'm always yawning and I think I've always had PH. But in 2010, I started coughing, I had coughing bouts and all of a sudden I could not walk my dog. I could not empty out the dishwasher, I could not brush my teeth. They diagnosed me. I'm retired Navy, so I get my care at the VA. They diagnosed me and they told me that I have PH and that I only have two years to live. It was very devastating. They wanted to be aggressive in my treatment, and what they did was they did IV medication right away. This IV medication helped turn around my health and after six months, I'm back to being able to do the things that I normally do. I think that the thing that I really, really want to stress about is being able to really be proactive with your health. Always asking the doctors the questions that are very important to you, writing it down so when you go to your doctor, you have a list to ask your doctor. I think another very paramount thing to do is to join a support group. That's what I did and I've met very inspiring members of support group that told me "Hey, things are going to get better." That really, really helped with me feeling very depressed and feeling down, when I was newly diagnosed. You still have to carry on with your everyday chores and at the same time you're so depressed, because you really don't know what's going to happen with you if it's going to progress. The things that you do every day, you like take it for granted until you're very, very sick. Joining a support group helped me with just feeling really, really blue. What really made the difference I think is that the medication drug that I had been put on, which is an IV medication. I was very, very opposed to having a medication pump, because I thought that you're going to carry this with you for a very long time and there's a chance of it getting infected. It goes straight to your bloodstream. So far, it's been really, really good. I'm actually to the point where my pressures have gone down a lot that I'm ready to go, to transition to oral meds. PH affects everybody very differently and I've seen people that are really, really struggling from it. I feel blessed that I'm not and I'm really hoping that my PH is not going to progress. PH affects everybody so differently and I see people that are struggling and having a really, really hard time. I always ask myself, why is my PH so stable? It's actually even regressing. The only reason I can think about is that, when I was diagnosed and I had really, really severe PH symptoms is that they aggressively treated it. I think the IV medication that I was put on really made my PH regress. PH, a lot of people don't know about it. Sometimes I really don't even tell other people, because they won't be able to understand. They see you and if they see your physical being as okay they think that you're perfectly fine. But I think everybody should be aware of what PH is. A lot of hospitals are not even aware of what PH is. Doctors are not aware. Nurses are not aware. I think everybody needs to be aware so maybe we can get more funding or help from the government for people that are like month to month struggling if they're going to get their medication or not. I think my biggest advice is, when you get diagnosed always seek a second opinion. There are a lot of medications to treat PH. It's not the end of the world. A lot of PH can regress and it can be made stable by some really, really good medications. The next important thing is to join a support group because support groups are amazing. You'll see other people you can share life experiences and maybe learn from what another person is going through with their PH. That's going to help a lot with your mental state of mind. I've always been short of breath, but I think if I could've been diagnosed earlier it probably would not have progressed that much. I think the reason why a lot of people are misdiagnosing it, is that a lot of doctors, nurses are not even familiar with PH. I think the most important thing is tell your friends that you have PH, because sometimes we're so afraid to let people know that there's something wrong with us. People can be very, very supportive. Friends, family will really, really come together and help you out and make your day easier for you. I'm Josh Lampa and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11588276

Episode 289 - Josh Lampa 10/10/2019

Theresa Lickman - phaware® interview 288 10/08/2019

Theresa Lickman - phaware® interview 288 Caregiver, Theresa Lickman discusses her husband Bill's diagnosis and the importance of living life within the limits of PH. Hi, I'm Theresa Henderson Lickman and I'm a pulmonary hypertension caregiver. My husband Bill and I have only been married for two and a half years. He was diagnosed probably 10 years before that. We did start dating nine years ago. The very first thing I did, one of the very first things, was going to University of Michigan Hospital for his appointment. I always talked to people in the waiting room and there was a lady there and she said, "Have you heard about the pulmonary hypertension support group?" I said, "No." We started going to the pulmonary hypertension support group and I think that has helped my husband a lot. Now, we've found a support group that's a little bit closer to us, too. Being a caregiver, I try and not say things a lot because he knows his limitations and he's a big boy. I don't want to be telling him things that he can't do when he really can. That's the hardest part is watching him cut wood for our wood stove and really worrying about him, especially when he was on Coumadin, because if he cut himself and I didn't know it, that could be big trouble. He's not on Coumadin anymore, which is a good thing. He is so good at taking his medication, it's amazing. The wonderful thing is he never complains about it, because taking all that medication three times a day could be a real drag and he really does very well taking it. He remembers, except yesterday when we were on the plane, he forgot. But other than that, he does really well doing that. You try not to worry and you just have to believe that his doctors know best. He has one of the best doctors for PH. I guess you just have to live your life, and we do. This is our second vacation of three this year. He knows his limits and if he gets tired, we just stop for that day. He was not a smoker. He was not anything. We think his father died from it, so there could be a genetic component. He actually had a nephew that was in his teens die and one of his brothers died of it. So there's a genetic component. We hope his sons don't have it. There needs to be more money for research. There really does. Although there have been wonderful things that have happened. For him to just take three oral medications is just a blessing, that he doesn't have to be on IV and sub-Q and all the other things that other patients have to be on. Our vision is that, actually, that he gets better. The newest drug [he was prescribed], was Uptravi. His doctor said that his heart is actually better than it was. I hoped that I would hear that, but I never thought I would. So that was cool. My name is Theresa Henderson Lickman and I'm aware that my husband is rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me @umichmedicine /episode/index/show/phawarepodcast/id/11556857

Episode 288 - Theresa Lickman 10/08/2019

Bill Lickman - phaware® interview 287 10/04/2019

Bill Lickman - phaware® interview 287 Pulmonary Hypertension patient and military veteran, Bill Lickman discusses his road to diagnosis and the importance of great caregiver support. My name is Bill Lickman. I'm a pulmonary hypertension patient. I was stationed military duty in the South and Mississippi, and I was already to get out and be redeployed back home. I was having some issues, so I figured I'd go into the doctors and check on what was going on. I was having trouble breathing and they were treating me for asthma and they couldn't find anything wrong. My late wife, who was a nurse practitioner said, "Have them check your heart." So they did this new procedure, [an echocardiogram], on me and saw that my right heart was enlarged. They did our right heart catheterization and they had to stop the procedure, because my pressure was so high, it was in the 90s. That's how they diagnosed me with PH. This was in November of 2006. Once I demobilized back to Michigan, I was in contact with the University of Michigan, with Dr. Valerie McLaughlin. She's one of the best, if not, in Michigan, in the whole country. From there, she wanted to put me on intravenous medication. I kind of hesitated at it, because I was active and everything else, and I wouldn't be able to do much of anything. So I've been on oral drugs. I started out with just Tracleer. I went back for a six month appointment and she put me on Revatio, also. I was on that until about a year ago, and she added Uptravi to that list of medicines. I'm on, basically, three drugs right now. I got involved with support groups. They've helped a lot in the answering a lot of questions, because basically I guess I was kind of in denial, even though I'm doing very well. I'm still active. I golf three times a week. I chop wood. We burn wood in the wintertime. I got an outdoor boiler, so I saw wood up. We go to Colorado. We go to Denver. The first time we talked to Dr. McLaughlin [about it], she said, "Can't you think of any place else to go to other than Denver?" Because of the altitude. We've gone up into the Rockies. We've gone over 9,000 feet in altitude, and it really doesn't affect me that much that I notice. I don't have trouble breathing or anything. When I go to see Dr. McLaughlin, she says, "You're the healthiest person I see." I would stress, do you want to do. Know your limits on what you can do, and do the best that you can with it. There's life out there, even with PH. If you have a dream, do it to the best of your ability. Go with your limits. Go with your gut feeling. If it feels rough on you, stop. If it feels good, keep doing it. Push yourself. It helps have a really good caretaker and I've got a real good one. She backs me on the things that I do. She's good support. When she tells me, "You're going too far." I'll listen to her. We'll come to a good compromise. She knows what I can do and what I can't do. She's just looking out for my wellbeing. I'm Bill Lickman, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me @umichmedicine /episode/index/show/phawarepodcast/id/11486498

Episode 287 - Bill Lickman 10/03/2019

Marie and Zach Rand - phaware® interview 286 10/01/2019

Marie and Zach Rand - phaware® interview 286 Co-founder and Managing Director of phaware global association®, Marie Rand and her son Zach discuss breathless on Broadway® an event that honors the memory of Chloë Rand and all people touched by pulmonary hypertension. Get tickets at www.breathlessonbroadway.com #30UnitedVoices Marie: I'm Marie Rand and I am the co-founder and managing director of phaware global association®. Zach: I'm Zach Rand. I am Marie's son and I'm co-founder of breathless on Broadway®. Marie: Today we are going to be talking about breathless on Broadway, which is an event that my family does together in honor of my daughter Chloë Rand, who passed away from pulmonary hypertension in 2006. She came home from the hospital at one day old and I was told she was perfectly healthy, and she started to get lethargic. She stopped eating and I kept going back to the doctor and asking what was happening. By day seven she turned blue during a doctor's appointment. She was rushed to a major medical center in New York City, where they found she was missing her aorta and she had a hole in her heart. So at eight days old, she had major heart surgery to replace an aorta for her, because she didn't have one. They did two things. They used her subclavian artery and they put a piece of Gore-Tex in an effort to build a strong enough aorta for her. By day 10, after I had gone out for a dinner with my nephew for his birthday. [It was the] first time I left the hospital. When I returned, Chloë was seizing and went into full cardiac arrest. They did some additional testing on Chloë and found that she had some other conditions. She was a sodium diabetic, it's called diabetes insipidus. The other was a neurologic condition called semilobar holoprosencephaly. It was 1992, we had no internet, we had no cell phones and we had no real way of understanding what some of the things that were happening for Chloë were, including her neurologic condition. They showed me a picture of her brain in a book and they told me that she would never hold her head up or understand or recognize me, and that she would never speak. And so I should leave her in the hospital to die and go home and start my life over. That did not work too well for us, that concept. So at seven weeks old, after placing a gastrostomy tube so that we could medicate her properly, we took Chloë home from the hospital. She was actually a DNR, which we were advised strongly to do by the physicians. What they had told us about her as far as brain development was really, really wrong. As she was growing, she was doing the normal baby things, waving bye-bye and laughing at TV and doing the things that you do as you're developing. At about seven months old, one of her nurses who was working in my house said, “why don't we rip up Chloë's DNR because I don't think they know what they were talking about. You can't look at a picture in a book and assume that you can understand what's happening with the human brain.” We did that. We took her back to the cardiologist and they determined that her aorta had stopped functioning and that she needed a second one. We went in at eight months old, did her second heart surgery. Once again, rebuilt her aorta, this time with a piece of Safranin stain. The third heart surgery, which was to close the simple hole in her heart, was supposed to be easy-peasy I would say, is how they were thinking of it. When they did preop testing through cardiac catheterization to look around, they found pulmonary hypertension. So it's 1993, pulmonary hypertension was barely known about and they sent her home to die. They said there was absolutely nothing that could be done for her. I proceeded to not believe in that statement as they had been wrong before, and I went to a couple of the higher level institutions to have Chloë checked, from Boston Children's Hospital to CHOP. Ultimately, a very kind doctor referred me to a woman whose name was Robyn Barst, who was at Columbia Presbyterian, a hundred blocks away from the hospital where we were. He told me to take Chloë without her records and without letting anybody know, and just get her to Robyn and see what Robyn had to say. We met with Robyn, who happened to be studying the first drug in clinical trials, which was a prostacyclin. She believed that using that Prostacyclin in the operating room would lower Chloë's pressures long enough to be able to close the hole in her heart. The hole in the heart was actually keeping her pressures lower. So closing it would mean kind of like she'd be a pressure cooker and she might explode. When Chloë was a year and a half old, we did that surgery. The hope was that it was going to be successful and Robyn came out of the OR to tell me that Chloë was not coming off bypass and that they were going to have to let her go. It was a time when ECMO really didn't exist. It existed, but there wasn't much known about it and it wasn't used very often, so there were no other real devices that can be done today. Fortunately for my family, Chloë decided that she was going to turn herself around and stabilize herself and by the time Robyn got back into the operating room, she was on her way up to the ICU. That was the beginning actually of our journey with pulmonary hypertension. Many years past with Chloë being relatively healthy, being a robust responder to one of the simplest drugs for PH, which was awesome. I went on to have four more kids Liv, Zach, Ava and Elijah, and we were living life as a family who happened to be living with a sick child. In 2005, on December 31st, Chloë came down with a wicked case of tonsillitis. She was put in the hospital, she was on a vent for a couple of weeks. She finally came home and Robyn came to me and said that although we had said we would never do another surgery on Chloë, that she thought her tonsils needed to be removed otherwise she could potentially die from tonsillitis. In April of 2006, we went in to do the tonsillectomy. Unfortunately, Chloë grew septic post-op and got very, very sick. The sickest I had ever seen her. Over the course of five weeks, we went from being extremely sick to her coming off a respirator, being able to sit up and talk to us again. To then it turning around and basically the sepsis wreaked havoc on her heart and lungs. On May 9th, 2006 Chloë died. Nine months after Chloë died, Zach landed on Broadway in the revival of Les Misérables. It was the beginning of a journey for our family that was somewhat unexpected. It's very exciting to become part of the Broadway community. It's really exciting to land a Broadway show when you're nine years old. Zach started working six days a week, every week. It became a huge part of our life, but what was most important through that was Zach's connectivity to the Broadway community. Although my kids had always been philanthropic, they had always done fundraisers for people who work well or for causes, even when they were very, very small. I think it was the joining of a group called Broadway Kids Care, where the Broadway kids were taught how to give back to the world. The woman who founded it thought, well, here are these kids who are living this great life of kind of privilege. She wanted them to keep in mind that there were a lot of people out there that didn't have the same opportunities that they had. So all four of my kids spent a considerable amount of time working with Broadway Kids Care, which I ended up running for many years, where we did a lot of community service to help either raise funds or awareness for diseases. So one night when we were driving home from work, Zach turned to me and he said, "Hey mom, someday when I get bigger, if my voice gets big enough, would I be able to help people like Chloë?" I said, "Of course." That's what I would hope my children would do someday is continue their philanthropic work. A long time passed before I heard about it again. Zach: I was a junior in high school and rather than working on my college application essays, I had this idea in my head that I couldn't really shake. I really started to learn a lot about pulmonary hypertension. And that was when sort of the idea of breathless on Broadway really started to take form. I went to my mom and I said that I felt it was time for me to step into the pulmonary hypertension community and try and help in the best way that I could. I invited my friends, businessman, Jeffrey Hayzlett, to an Oscar party that my friend Jeff Calhoun hosts, because I felt that was the kind of environment that I wanted to recreate. While we were there, Jeff and I took everything in, we watched the entire experience. We decided, all right, we think we're ready to do it. That's when breathless on Broadway came to life for the first time. Marie: We approached the world famous Sardi's restaurant on 44th street, because Zach was known there. When he was little, his first Broadway show, Les Mis was in the Broadhurst Theater, which was directly across the street from Sardi's. So everybody there, from staff to managers, knew who he was. We asked them for the space and we loved the space, because that's the place where all the caricatures of the famous performers [are hung]. It's an honor to have your caricature placed in Sardi's restaurant. It's really known as a very important part of Broadway. So we continue to do breathless every year at Sardi's with our dear friends there. It gives our audience an opportunity to actually really be a part of the Broadway community, because Sardi's is such an important place for us. Zach: What we tried to do at breathless is we try and bring in my Broadway experience, as well as my family's experience with pulmonary hypertension. We spend the evening sort of vacillating between my friends coming on stage, my telling stories about how important they are to me, how helpful they were for my family in the process of grieving after Chloë passed away. Then we spent some time afterwards talking about pulmonary hypertension, talking about Chloë's experience with the disease. Then also talking about the amazing work that phaware is doing to revolutionize the tracking of the progression of the disease. Really what it is, is it's about coming and getting to know my family and getting to know our life, and seeing the amazing power of a cast of Broadway performers. Then also, inspiring people and saying that there is a lot you can do in your everyday life that can really, really change the world. Marie: It's not a typical fundraising event. It's run sort of like a show which makes it really fun. The intent of it is to teach about life and love and tragedy and rebirth and how returning to help the pulmonary hypertension community healed our family in a way that I didn't know if we were ever going to get there. For me personally, it started with phaware global association. It was a concept that Steve Van Wormer and John Hess and I started with not really knowing exactly what we wanted to do, but we had some really powerful backgrounds in business. We thought if we brought them together, we may be able to help the community in a very different way. I feel completely and utterly blessed that together we have done such great work from our global outreach and our podcasting series, to the technology that we're developing for research. I probably have not ever said this to John and Steve before, but with their help, I was able to heal in a very different way after the loss of Chloë. It was kind of like the final piece for me. So I'm very grateful to both of them and to phaware and all of the people who help us, from our medical advisory board, to the doctors that I talk to on a daily basis, from every conference that I go to. What it does is it helps bring to light that the original journey of Chloë, which was starting on that very medication while it was in clinical trials, we have a group of people who work diligently to facilitate change. I get to see it and live it every day and hope that we are able, in part, at breathless, to let other people who are living with this disease know that there's a lot of work that's being done to try and make a huge difference. So that brings us to breathless, which is coming up soon. Monday, October 7th at Sardi's restaurant. It starts at 5:30 with cocktails and then at about 6:30, we head downstairs to the main floor where we do about two and a half hours straight of performances and conversations about pulmonary hypertension. The room is filled with patients, caregivers, medical professionals, industry partners, friends, family. The idea is to bring that group together and remember all of the people who we have lost to this disease, all of the work that's been done over the past 27 years that I have been affiliated with it, and all of the hope that we are able to offer those who are sick with this. We are working diligently on new medications, new protocols. I believe in my lifetime we're going to find a cure. Zach: So we've been working on breathless for five years now and we actually recently started a version that we call breathless off Broadway where we go and we make surprise appearances at conferences or at investigator meetings, just to add a little bit of flavor I guess to the experience. My friends and I, we were all visiting the Pulmonary Vascular Research Institute and we did our thing. We sang some songs, we told the story of Chloë. I didn't really think twice about it. It was just breathless off Broadway. Afterwards, a doctor who I had never met before and didn't even tell me their name, came up to me and thanked me. They said, "Sometimes we get lost in the lab. We forget that we're working with people, not just numbers and proteins. It's incredibly inspiring to hear your story." He said to me, "you can see around the room. We all went from being at a bland, boring conference to now we're all raring to go. We're ready to figure out how to cure this disease." So that not only was incredibly special for me because that's what we're after with breathless on Broadway, we want to inspire people to change the world. But it also shines a light on the amazing people of this community. And the fact that all you really need to do is say we've got to figure this out, and everybody jumps on. Marie: It makes me happy that my children and I are able to travel into conferences, offer some hope and some entertainment and love and our belief in this PH community. That connects directly back to the work that we do at phaware, and why we work so hard to make sure people are properly informed about the disease. We work to develop technology that's going to advance research so that we can change the world for a lot of people. Zach: We'd really like to thank everyone who sponsored breathless on Broadway, because without them, we wouldn't be able to do this amazing project and this amazing event. So thank you to Actelion, a Janssen Pharmaceutical company of Johnson & Johnson. Liquidia Technologies, Reata Pharmaceuticals, Stage Door Designs, United Therapeutics, Express Concierge, and Worldwide Clinical Trials. It really means so much to us that you're able to help us make this event happen. Marie: So on October 7th if you happen to be in New York City, we'd love for you to spend the evening with our family at breathless on Broadway. To learn more or to get tickets go to www.breathlessonbroadway.com. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11408567

Episode 286 - Marie and Zach Rand 09/30/2019

Terry Jones - phaware® interview 285 09/27/2019

Terry Jones - phaware® interview 285 PH Patient, Terry Jones on being a patient and caregiver and why research is important for the pulmonary hypertension community. I'm Terry Jones and I'm a pulmonary hypertension patient. I started having breathing problems when I was working back around 1998, and I got diagnosed in 2009, by a right heart catheterization. When I was first diagnosed, I started on a low dose of oral medication and it didn't appear to be working. But then after about two months, my wife said to me, "Terry, what are you doing? You went out to the kitchen for your coffee without your oxygen." That was the first time that I noticed that, wow, geez, this medication really is starting to work. The limitations of what I can do have been gradually increasing. You get to realize what your limitations are and you have to kind of live from there on with the new limitations being your new normal type of a thing. Originally my wife was taking care of me and then she had a stroke and once she was sick, I ended up being a caregiver for her and had to take care of her and [was] trying to take care of myself at the same time. Once she passed, then I was just having to worry about myself. The biggest concern that I had in those regards, is when I'm in the hospital, when it comes time to leave, because I'm living by myself. The doctors say, "Well, Terry, you're going to have to go into a rehab or to a nursing home type of a situation for a period of time before we let you go home." It's just not me. So usually, they'd have me spend an extra two or three days in the hospital so I can convince them and walk and get around, start to do things, so that I could let him be able to let me go home by myself, which so far, I've been successful with that. When I was first diagnosed back in, even in 2009, the doctors were telling me that you have two or three years to live. Typically, there isn't really too much that you can do. There's not that many medications that were available, and now there's up to, I believe at last count, I believe it's around 13 different medications are available. This is all done through awareness. The more people that get to be aware and the more research they can do, the better it is. That's one of the reasons why my biggest thing is the research. I gave nine vials of blood for different organizations to be able to use for doing research to try to come up with a cure, trying to come up with a better life for people with PH. I'm hoping, that with all the research that [pulmonary hypertension] is getting to be more well known, than it certainly was five or 10 years ago. With new research, hopefully there's someplace around the corner that we're going to have a cure coming up. That is what I'm hoping for. I'm Terry Jones and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11346194

Episode 285 - Terry Jones 09/26/2019

Chuck Thompson - phaware® interview 284 09/24/2019

Episode 284 - Chuck Thompson 09/23/2019

Alicia & Adriana Kubes - phaware® interview 283 09/20/2019

Alicia & Adriana Kubes - phaware® interview 283 Sisters Alicia and Adriana Kubes discuss Alicia's pulmonary hypertension diagnosis and Adriana's role as a caregiver and ways they are facing this chronic illness together. Alicia: My name is Alicia Kubes and I'm a pulmonary hypertension patient. Adriana: Hi, my name is Adriana Kubes and I'm a pulmonary hypertension caregiver. Alicia: I'd been feeling off for a long time. I know that back in 2010 I had some heart palpitations and I went and did all the testing and nothing showed up. I just thought I was having panic attacks and was just getting really tired. I use public transportation in New York city, so when I wasn't able to walk up the stairs, I knew that something was wrong, but it took several months of blood tests and EKG's. Nothing came up that said anything. Finally, in the new year when I had an echocardiogram, that's when they noticed that there were very high pressures in my lungs. By that point, I was swollen all over my body. I had 25 pounds of fluid and I barely could even walk up two steps. I had the echo. The doctor came in and said, "You have to go to the ER right now. Your pulmonary pressure is really high." So I drove myself to the ER and I was lying on bed. There was a monitor there and that's where I Googled pulmonary hypertension and figured out what it was. Adriana: She was having problems for several months and I wasn't expecting it to be anything serious. I was hoping maybe anemic or some sort of, you know, something that would be just a pill, an easy cure. I was at work. She actually called me before she called our parents, because she didn’t want to get them nervous. I knew she had a doctor's appointment that day and she called me and she said, "I'm actually driving to the ER right now, because I have severe pulmonary hypertension." I didn't understand what those words meant. When I got off the phone with her and I told my boss I had to leave to go to the hospital and see her. I just said, "Well, what's severe pulmonary hypertension?" I never heard of it. I didn't understand it and it didn't even sound that scary. I just knew she was going to the emergency room. Alicia: My thinking was just dread and fear and confusion and it was very scary. I was terrified, but my family came to the emergency room and my sister was the one who was with me in the hospital every single day. Just having her, she counteracted all of my negative thoughts. I would just speak my thoughts to her and she would always keep me in perspective. Adriana: When she was getting diagnosed, I started to research it, and there were just so many questions I just had. When you hear about the life expectancy, medications, I didn't know. I didn't know what was going to happen next. I think that was the scariest… the unknown. Alicia: Where I was diagnosed in New Jersey, we don't have specialists there so I was transferred to a hospital in New York City where I was started on treatment on IV Remodulin and on pills. I've been reacting very well to that medication, so now it's just slowly getting back to normal. I challenge myself every day with something I wasn't able to do before, like I'll try to walk five minutes more than I did yesterday. I'll try to walk one step more than I did yesterday. I'm very much a goal-oriented person, so I have this goal of getting off the pump therapy one day and I try to maintain a positive attitude and picture that goal, so that's what kind of gets me through. Adriana: Well, the way it's really developing is that she's my older sister, she's my big sister, but I feel very protective over her. I have to learn that she needs to live a life and I shouldn't protect her that much. I shouldn't worry about her going to work every day or doing everyday things. So, I'm learning and she's teaching me that I should let her be free and let her take that extra step, take that extra walk, even though she had a long day at work. I think that's what I'm learning, is just helping encourage to have her live the fullest life as possible and not be scared. Alicia: The main tool has been just to educate ourselves and she's been the same way that she was with me in the hospital every day and counteracting my negative thoughts with positive thoughts. She has been educating herself. We are both now starting a support group in New York City as co-leaders so that there's both a patient and a caregiver angle to everything that we do and all the resources that we share with others in our area. Adriana: I think educate yourself. Understand that there's still so much that is not known about this disease and that there is a lot of hope. There is just more good news than there is bad news. So I just want everybody to take it day by day and really just look at this in a positive light, because positivity is a choice. So just try and move forward and just be there and enjoy every day that you can. Alicia: Our hope is that together we can help get more people diagnosed just by being vocal about our own experience, because obviously there are others who are suffering right now and they don't know they have PH. There's a personal hope that I will overcome this and be a good example and good data for other people. Adriana: Our hope is just to share our story and also teach other siblings and other family members how to work together and how to support each other. I openly talk about it all the time. Even if somebody doesn't ask me about pulmonary hypertension, I'm like, do you know? So I just think it's bringing awareness to the cause, letting people understand the seriousness of it, but then also the hope of it. There is more future and good news. Adriana: My name is Adriana Kubes. Alicia: My name is Alicia Kubes, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11311853

Episode 283 - Alicia & Adriana Kubes 09/19/2019

Dora Erdelyi - phaware® interview 282 09/17/2019

Dora Erdelyi - phaware® interview 282 Hungarian Ex-PH patient, Dora Erdelyi, discusses her double lung transplant and how patients in Budapest grapple with PH. I am Dora Erdelyi. I came from Budapest, Hungary. I'm an ex-PH patient, a double lung transplant survivor. It began when I was feeling that I got tired easily. I couldn't go up to the second floor in my apartment. This was unusual for me, because before that I was doing kayaking for years and I was always having sports. I was going up to the sixth, seventh floors without any problem. I was always strong and then I suddenly couldn't lift things, et cetera. So, I went to see my family doctor and he told me that it's your age and your weight. I said, "I'm 35 and okay, I’m [slightly] overweight, but I don't think that's an explanation, so let's go and see what it is." He sent me to [have] an X-ray. At the X-ray, they asked me that when were you last time you did X-ray, because you should have been invited back. Then they asked me, "Are you being treated for heart disease?" And I was like, "Why, should I be treated?" They told me that my heart was a lot bigger than it should be. Then I went to see a cardiologist and she did an electrocardiogram. It didn't show anything special and then she did an echo because of the size of my heart. Then, she started suddenly looking up in books like what should I do with you? And I was like, "I'm not going to drop dead here. So, what's the problem? What's the worst case?" Then she said, "Oh, you might have pulmonary hypertension." So, what does that mean, what's the worst case? She said, "lung transplant." I was like, "Yeah, sure, lung transplant. Leave me alone." After that, she sent me to the specialist. It was on a Wednesday and on a Friday, I was already at the best doctor in Hungary. Then he said, yeah, there is a substantial doubt that I have pulmonary hypertension. He said, "Welcome to the club." Of course, we went through all the examinations. By November I had the diagnosis. That's about the what you can learn about Hungary, that there are those who are wandering in the system and those who are instantly diagnosed due to some luck that they go to see some cardiologist who already heard about it. So that's why we think that awareness is a really important question in Hungary. I can feel that the doctors are also hungry for information because, for example, if I go to my family doctor [and he is] not there, [the doctor who is replacing] asks for the whole story - how was I diagnosed, what were some of the first symptoms, et cetera. They had to call an ambulance once to my workplace. They asked all sorts of questions as well. So, we know that there is room for improvement regarding the informing the regular doctors about what is PH. We are very lucky because we have all that is available in Europe. From that point of view, Hungary is very lucky and it's all financed by the government, luckily. There are some individual cases when you have to apply for it every three months, but [patients] get it. So, there is no such problem at the moment that someone needs something desperately and then it's not approved. We estimate that there are about 500 patients in Hungary. We are a population of nine million people, and 130 is the number of our members. It includes physical therapists, physicians, also, and supporters, but many patients as well. What is very important for us, there are two main events that we are organizing our work around. One is World PH Day, where we have some kind of sport activity. So, we are trying to get normal people to get breathless to experience what we are feeling after five steps or 10 steps. They can feel it after a couple of kilometers' run or something like that. Then, we have also a patient meeting in every autumn, where we invite government officials to talk about financing, doctors to talk about new therapies and the research possibilities. We talk about rehabilitation, exercises, et cetera. We are always asking our members what are the hot topics and then we are trying to organize the meeting around that and it's works very well. So that's where we meet, because otherwise our patients are in the elderly age groups and they are not so much on Facebook or on social media. So, we are calling them on the phone and this meeting is where we get together and we catch up with each other. You can see my case that I was diagnosed instantly almost. I didn't have such severe symptoms and I went through all the scale of therapies: the combine, the two combinations, three combinations. I still ended up needing a lung transplant. So, I can understand why it's crucial because I was on the list with urgency at the end. So, the progression of my illness was really bad. This can happen to other patients as well. Just imagine if they were not diagnosed instantly, they might end up not getting the chance of some new lungs and a chance for a new life like I did. I'm Dora Erdelyi, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11201747

Episode 282 - Dora Erdelyi 09/16/2019

Vicki Banos - phaware® interview 281 09/13/2019

Vicki Banos - phaware® interview 281 Pulmonary hypertension patient Vicki Banos discusses her PH diagnosis. My name is Vicki Banos and I'm a pulmonary hypertension patient. I had had a knee replacement in Denver in 2012, and I began to feel really weak and fatigued. I couldn't walk two blocks. I had some other things going on at the same time. I had an undiagnosed cough for about eight years. And I was seeing an allergy asthma doctor and they thought maybe I had a blood clot from the knee replacement. So, it started with a V/Q scan. Then I ended up fainting and going to the ER a couple times and I failed a stress test. Then a doctor there said that I needed a right heart cath. I had two of them and they diagnosed me with pulmonary hypertension. I was originally from New Orleans, so I had moved there after Katrina. I was alone. I didn't have anyone going with me for any of this. So, it was a little shocking at first. I just decided to Google it as much as possible and learn as much as possible about the disease. So, I've tried many medications and I recently moved to lower altitude, to Florida. I'm feeling a lot better, although I still have good days and bad days. I really try to be very positive, because I think that that's the most important thing. I actually met some pulmonary hypertension patients when I was going to National Jewish [Hospital], in Denver, just sitting in the waiting area. But I hadn't been to any support groups or anything until when I got here to Florida. That was very helpful meeting other people that had the same disease. Up until now, it's been pretty much me managing my disease by myself and my doctors. At first, I thought it was a death sentence. I didn't know how long I was going to live. It was kind of scary. I didn't go out a lot. I didn't do a lot of things. Now, I try to go to the beach four times a week. I go out. I don't let it stop me. I do a lot more things. I think I'm actually feeling a lot better. I encourage people to get out and not let it stop you from anything that you want to do. One of the things that I've noticed is that when you don't look sick, people don't think you're sick. I think that's one of the biggest things, because I have really great days and then I might have a bad day. I think that awareness is important, because it's kind of an invisible physical disease, unless you have oxygen tubes. Not everyone always knows that you're sick and they think, "Oh, she looks great. So, there's nothing wrong with her." You really need to be your own advocate. You need to learn about it. Don't just trust in other people to take any medication. Learn a lot about it and be good to yourself. It's good to know other patients. I Facebook with other people around the country. That's been really, really good now, having other people to talk to about it. It's always a learning thing. Everything's new every day. My name is Vicki Banos and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11201399

Episode 281 - Vicki Banos 09/12/2019

Yon Sung, MD - phaware® interview 280 09/10/2019

Yon Sung, MD - phaware® interview 280 Yon Sung, MD is a Clinical Assistant Professor of Pulmonary & Critical Care at Stanford University School of Medicine and specializes in the care of pulmonary hypertension patients. She also serves as the Director of Community Outreach for the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford and in this position, has the goal of increasing awareness of PH and providing clinical support and education to clinicians and patients alike. In this episode, she discusses the 19th Annual Race Against PH 5K, taking place at Stanford on November 3rd, 2019. My name is Yon Sung. I'm a pulmonologist and one of the pulmonary hypertension specialists at Stanford. I'm also the Director of Community Outreach at the Vera Moulton Wall Center for pulmonary vascular disease. I would say we're a comprehensive center for learning about and treating pulmonary vascular disease and in particular pulmonary hypertension. At the Vera Moulton Wall Center, our mission is to promote research in pulmonary vascular disease, specifically pulmonary hypertension, but also spreading education about this disease and, of course, caring for patients. I think I've gotten really good at developing our own research initiatives and developing our clinical practices within Stanford and within our own little kind of bubble, but also realizing that there was a huge opportunity for us to connect to lots of other entities in the community. For us to connect with other community providers, we're also co-managing our pulmonary hypertension patients with us. Also, to connect with patients on a different level as opposed to just in the office one-on-one or when we see them in the hospital. [We] try to get a sense of what's going on with them outside of our interaction as a doctor-patient relationship kind of thing. Then, also just to the broader community in terms of raising awareness and educating people on what this disease is. How I got into pulmonary was honestly mostly great teachers when I was a medicine resident and they just made lung disease and pulmonary very interesting for me. I came to Stanford for my pulmonary critical care fellowship. My first year of fellowship I was working with Dr. Mark Nichols, who is our division chief and did a lot of research in pulmonary hypertension. We had been working on a clinical rotation together and he had introduced me to work that they were doing in their lab and invited me to come do some research there and that's pretty much what got the ball rolling on that. I think before that, I didn't know much about pulmonary hypertension. I didn't have any particular interest in it necessarily, but that's how I got in. I worked in a lab for a bunch of years, looking at different animal models for pulmonary hypertension, trying to understand how inflammation was involved in the development of PH. From that I got connected into the clinical practice of it. I've been treating patients again, since 2011. For me, after a few years of doing the lab research, I realized that wasn't really for me and where my passion was and where I felt like my skills were best used were interacting and treating patients. So, I converted over to doing that a bunch of years ago and certainly am much happier in that realm of pulmonary vascular disease. I think part of what makes us special is I think we really integrate many of the different aspects involved in pulmonary vascular disease into a very cohesive team. You know, on a daily basis I'm interacting with people who obviously take care of patients all day long like myself, and all of our nurse practitioners in our office who are all helping to take care of patients on a daily basis. What's also special is that we on a day-to-day basis interact with basic science researchers who are really trying to understand the pathogenesis, that's how we get to this disease. Then also clinical researchers who are helping us run clinical trials to try to find new therapies for this disease. I think what's also special is that we have a very tight connection to the pediatric side of this, so we also get that different perspective, about how the disease is different and certainly how treating patients is different on that side of it. Coming up this November is our biggest fundraising event of the year. It is our 19th annual Race Again Pulmonary Hypertension. It will be November 3rd on the Stanford campus starting at nine o'clock in the morning. We always like to remind people that it's actually the transition out of daylight savings time. Everyone gets an extra hour of sleep so there's no reason to not be able to come. It was started back by friends and family of Patty Ewing who was a patient, and it's since grown to be one of the largest and longest running PH events in the country. The entire PH staff shows up for the most part. Of course, somebody always has to be on call to see the patients. But for the most part, we all show up and I would say most of us end up running or walking the race. One of the great things about this race is that we do see our patients there and their families and we have patients who come every year. We can see from year to year, they're transition of how they're dealing with this disease. I can think of certainly a few patients who come to this terrible diagnosis, they're feeling horrible, they can hardly do anything. We get them on some therapies that are really effective and then the next year they're able to walk the entire 5K and do the entire race. And as the years go on, as we know this is a progressive disease and for almost everybody it gets worse over time. Then we see that where they transition and maybe they can just show up and be with their family. Then for those of our patients who then go on to get a transplant, that is always amazing to see because you know, we on the pulmonary hypertension side care for them when they're at their end stage, or their end-stage heart failure. They [some patients] get their transplant. I know we pass them off to the transplant team and we hardly see them anymore. It is really a wonderful opportunity to see a few of these patients we’ve had a come to the race. I remember one young patient who was the following year able to run the race after she had a transplant and that was really incredible. This year we hope to be again our biggest event yet. We'd love for anybody and everybody to come out. Again, on November 3rd on the Stanford University campus starting at nine o'clock in the morning. To register or if you're interested in volunteering or participating in other ways, all the information is at www.raceagainstph.org. My name is Yon Sung and I'm aware that I'm rare. Register for the 19th Annual Race Against PH 5K: med.stanford.edu/raceagainstph Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11184068

Episode 280 - Yon Kyung Sung, MD 09/09/2019

Michelle Johnson - phaware® interview 279 09/06/2019

Michelle Johnson - phaware® interview 279 Native American PAH patient Michelle Johnson describes her long road to diagnosis. Michelle's journey was complicated due to her cultural customs and her struggle with accepting her illness. My name is Michelle Johnson and I'm a pulmonary hypertension patient. Back in 2011, I had been coughing for a year. 2008… 2009… 2010 was approaching and I was just coughing, coughing, coughing, coughing, coughing. I couldn't stop coughing. I went [to a doctor] and they kept misdiagnosing me, and they kept telling me I was crazy. They told me I was a hypochondriac. They told me I was depressed. They told me I had allergies. So they told me I had asthma, seasonal asthma. They told me that they wanted to give me breathing treatments, steroids. I had fatigue syndrome. They said maybe I was just too stressed out, and I was living at a high elevation. And all these things that they kept saying, everything was coming back normal. At the end of 2010, I started bloating up with water. In 2011, it was around March and I had a silent MI, and I ended up in the hospital. Then at the end of April, they flew me out to Albuquerque, New Mexico. From there, what led to that was a heart attack, a full blown heart attack. So then there they told me, "You have two weeks to live and we can't do a transplant because you're 400 pounds. Your BMI is 56, this and that and the other. You're too high risk, you'll probably die through the transplant, and we need to do a lung and a heart." So I freaked out. I told my whole family, "I'm dying. This is it. There's no therapies. There's nothing they can do for me that would be fast enough to keep me alive." So from there (because I'm Native American, I'm Navajo), my family started having ceremonies and they started to do Native American church ceremonies. We have a medicine and they started giving me the medicine. So when I was taking this medicine, it kept me alive. Then from there I kept getting different people, doctors, things started happening and changing in my life. Finally on May 7th, they diagnosed me with pulmonary arterial hypertension idiopathic. To me, I didn't know what that was. They told me, "There's probably a thousand of you. This is like one out of a million people." They gave me all this statistics. They told me, "We don't know anything about this disease at the heart hospital of New Mexico." They said, "Your best bet is just to move to a lower elevation." So I moved my whole life to Arizona where my mom lives, which is 1200 elevation. So moving there I started to breathe a little easier, but I was still bloated with water, couldn't breathe, my lips were blue, I ended up in a wheelchair. My legs were so swollen, I couldn't feel my legs. I had leg pain. I had diabetes and pulmonary hypertension, congestive heart failure. All these things just kept crashing and I was just ended up in the hospital. I kept going to the hospital, hospital, hospital and nothing was helping. I tried all these therapies and like probably nine or 10 different therapies and none of them were working. Pretty soon it was 2015 and I was raring into the end of summer and I just started blowing up with water again. It was just uncontrollable. By that time I had had two right-heart CATs and so they said, "You have severe pulmonary hypertension, your heart's going to bust, because it's really, really dilated." [The doctors] were just saying all these things to me. I got a cardiologist, a pulmonologists. I had a little team of six doctors and all of them had no idea what pulmonary hypertension was. On my reservation where I lived, nobody knew anything about it. I had no idea what to do because I couldn't even talk. I couldn't even laugh. I couldn't even function. I was so depressed and I didn't know what to do, so I just slept. And I had a daughter and she would try to help me. I was bedridden for five years. Finally, one day, I couldn't breathe and I went to my doctor and I told him, I said, "I can't do this anymore. I need to do something." They gave me a cardiologist and my cardiologist, he said, "I'm going to send you the Tucson. They have a pulmonary hypertension clinic there." He said, "You're going to see this doctor and this doctor. I'm going to send you there for a transplant orientation and see what they can do about transplant." And so I went and they told me, "We can't do a transplant because your BMI is too high and you're still too overweight." So I was like, "Well, what am I going to do?" And so they had me in the ICU. They admitted me, because I was building liquid in my lungs. So they put me in the ICU. Once they put me in the ICU, my doctor, he said, "We're putting on Remodulin.” I said, "What's that?" And he said, "It's uncomfortable. It's this, this, this, and this." I'm like, "No, just let me go. You know, it's my time. Maybe I just need to go." I was scared of transplant, scared of any medicine. It wasn't going to work. I was determined. I didn't want to accept my disease. I just wanted to go. So in my culture, that's what we do, you know? I thought, "Okay." Because in our culture we're not allowed to have transplants. So it was an omen. I just thought, "Well, I'm just going to do this Remodulin." My daughter, she said, "Mom, you can do it." She was only like six or seven. And she said, "Mom, you need to try everything because if you die and you didn't try everything, you're going to regret it. So try the Remodulin." And I said, "Okay, I will." She said, "I'll help you." And I said, "Okay." My mom encouraged me. So I did the Remodulin and once their module started working, the first six months, I felt energy enough and I got physical therapy. So I started moving my legs and I got out of my wheelchair. Then little by little I got a walker and I started using a walker. And then I started walking again. And then once I started walking again, then my whole life changed. And then I started to lose weight rapidly. Then I started getting into support group meetings. I decided that I was going to lose weight and I was going to do this and do that. The energy started flowing after I got on Remodulin. My whole life completely changed and it was full of hope and I got to meet new people. I was on the pulmonary hypertension support group. I was on the Remodulin support group and I was going to support group and I was slowly starting to make my bed and all these things. The Remodulin really helped me. And so now I own my own business. I am back to beading professionally, I'm back to cleaning houses, detailing houses. I'm a caretaker part-time. I'm all these things that I never thought I would ever be again. After losing the 200 pounds, I decided that I was going to be healthier and think healthier and eat healthier and everything has changed in my life. Just all the positivity and not giving up and holding onto hope and seeing the light into the tunnel, all those different things that people have shared and said, and those all came to light. My life finally, they say [came to] fruition. And so that's what's happening in my life and I'm very, very, very happy to say I look forward to tomorrow and all the days to come and I pushed myself more and more every day to do more, to be more and to support and be supportive and give wherever I can. Pulmonary hypertension, I want to immerse myself in it and teach people and show people that anything is possible. My name is Michelle Johnson. I'm aware that I'm rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11117819

Episode 279 - Michelle Johnson 09/05/2019

Barbara Barry-Nishanian phaware® interview 278 09/03/2019

Barbara Barry-Nishanian phaware® interview 278 Pulmonary Arterial Hypertension patient Barbara Barry-Nishanian discusses her long road to diagnosis and adjusting to a different life with PAH. I’m Barbara Barry-Nishanian and I've recently been diagnosed as a PAH patient. It has been a long, long, long, long journey. It started back in 2000. I like to dance, and all of a sudden, I couldn't get through half of a record or a song. I couldn't dance. I ended up in the hospital for a week. People could not find out what was wrong with me. I'd had rheumatic fever, never bothered me. Been on a C-PAP machine, that was fine. I was tired. And you know, we feel so guilty because we're not capable of doing the things we used to do. We go on a real guilt trip that can lead a lot of PAH patients into depression, because they're not able to do what they were supposed to do. You've heard people say, "Well, you're crazy. It's in your head. You've got asthma, you've got this, you're old, you're a hypochondriac." At one time, I was on 17 pills a day, and at one point there were three months I had to let someone else run my accessory gallery and art gallery, because I couldn't get out of bed. I wasn't in pain, I wasn't hurting, but I wasn't me. I kept going to doctors, and doctors will send you to specialists, and thank God for the specialist. My doctors came in and said, “let's have a catheterization.” I had already had one. We'd go back in. I didn't bring my pajamas, because I'm going home. Nothing's wrong with me. And she wakes me up. "Barbara, Barbara, wake up." She said, "You've got 98% blockage in one, you've got 80 something in another." And she said, "We're putting you into the hospital immediately." She said, "You will be dead before you hit the floor." Triple bypass is a walk in the park. It's really an easy operation and I was not going to get pneumonia. So, I'm chasing my doctor down the hall and low and behold I get double pneumonia. I just wasn't doing good and they sent me off to rehab. I never experienced what happened to me. They didn't understand that I didn't want to do the rehab. I didn't want to lift my leg up, much less try to walk. Six weeks later they'd say, you've got to go home and I'm saying, "I can't talk" and I couldn't talk. I could hardly breathe. I didn't know what I was experiencing, and that was more frightening than the open-heart surgery. But let me tell you, two days after open heart surgery, I hate to get so personal, but I said, "What are those coffee grounds in my pee?" I was bleeding to death internally, and two days after open-heart they had to go in and give me another surgery. I said, "I can't go home, there's no one to take care of me." They said come in and let's do an EKG. They called the emergency ambulance immediately and sent me to the emergency room of the hospital. I'm losing my cookies all the way there. And I get there and I have double pneumonia again and blood clots in both lungs. I had gone in in October, and now we are at Thanksgiving and it just was going downhill. But the surgery was fabulous, the complications were awful, and I had a chest tube. They did not have time to give me anything to numb it and I'll have triplets for three people before I want to go through that again. That was the worst. I had to close my jewelry shop and my art gallery and one of my artists said to me several months later, “we're going to San Antonio, do you want to go take a painting class with us?" And I'm ready to go. You just say travel and I'm ready to go. And she said, "Well, can you walk the river walk?" I said, "Of course I can walk the river walk." Well honey, they were a block ahead of me. I would stop and I'd lean up against the wall and I'd try to catch my breath. So, we took our class and we come back and we'd get to the airport three hours early and I'm "larrying" like a slant board in my chair with indigestion. And I'm borrowing Tums and everything from my fellow passengers. Finally, I am so sick behind the counter. What an embarrassing moment for a girl who tries to be a lady all the time, and I was violently, violently ill. I've never hugged a trashcan so closely in my life. When the attendants came, they said, our friend is sick and they came in, they did the EKG and they said, "Lady, you're having a heart attack here at the airport. We cannot let you go home." I said, "Please, I want to go home. And they said, "No, we can't put you on the flight." Can I say something funny at this point too? Because I think this has to do with attitude. So, in the ambulance, I give the guy my camera and I said, "Will you take a picture of me?" He said, "Lady, you're having a heart attack." I said, "I know, but I haven't been on a vacation in 12 years and I want my husband to have a picture of me." He said, "Turn that ambulance around, lift taker did this other hospital." So, for whatever reason, they change hospitals and I told my two surgeons what had happened in the ambulance and they would take the camera into the operating rooms and I got to meet everybody. I was diagnosed with this. I did not know what it was, and I tried to make people laugh, and so when they said, "What's wrong with you?" I tell them "I'm on Viagra and I won't give any pills to my girlfriend for their husbands," and I just try to keep a positive attitude. I was really ignorant, because I had had asthma, I'd been to all these specialists and people are not aware. I want to get on a soapbox to make people aware that it's not in their head. They are not crazy. We are not lazy. That we can't breathe is abnormal. The advice I would give for someone who is newly diagnosed is this is the different life. It is not the end of your life. Do the things that you like doing. I'm not painting now, but I'm going to produce a poetry book. Find something else to concentrate on. Try to help other people. You help yourself better when you try to help others. So, find a support group. Believe that what you're feeling is not in your head. Don't let anyone define you by this disease. Don't let anyone define you by, "It's in your head." You know your body. Get someone who will listen. I'm Barbara Barry-Nishanian, and I am aware that I am rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/11037185

Episode 278 - Barbara Barry-Nishanian 09/02/2019

Mary Jan Hicks - phaware® interview 277 08/30/2019

Mary Jan Hicks - phaware® interview 277 Mary Jan Hicks discusses her daughter Meaghan's PH diagnosis and road to double-lung & heart transplant. My name is Mary Jan Hicks. I live in Gig Harbor, Washington. My connection to pulmonary hypertension is as a caregiver for my daughter, Meaghan Hicks. We were stationed in Heidelberg, Germany. Meaghan went in for a test, and the pediatric cardiologist that did the test told us that she was good, she was healthy, and sent us home. Then he called and told me that he wasn't sure, that he thought that she may have pulmonary hypertension. That was in 1994. They didn't have a means to care for Meaghan where we were, so she and I were medevaced out and we were sent to Walter Reed. They could not care for her there, so then we were sent to Robyn Barst at Columbia Presbyterian Hospital. That's where we met Robyn, and that's where Meaghan's pulmonary care began. Meaghan was fortunate enough to be able to stay on oral meds for quite a while. I was obviously very protective. Meaghan had just turned 13, and by the time she went into high school, her friends were wanting her to go places with them and ride in their car. I didn't want her to leave the house without a raincoat. I had a wise individual tell me that I was living my life waiting for the other shoe to drop. A light bulb came on for me, and I realized that whatever time I had with Meaghan, I needed to use it to the best of our abilities and not spend it in a worry mode. That's when I started letting her kind of take the reins and be responsible and take a back seat and let her become the person who, when she went off to college, she had to be on top of her meds. She had to send in for the refills. I monitored, but as she got old enough and as she learned, she was a very responsible young lady. She wanted the best quality of life for herself, and so whatever that meant she had to do, she was ready to do it. And we were her support. Dr. Barst, on one of our earliest visits once Meaghan was on meds, she said, "At some point in time, I'm just going to tell you, she's going to refuse to take them. They all do. I'm just giving you a heads-up so that you can prepare for yourself for when that happens what you're going to do." Jesse, her younger sister, at one point in time turned to Meaghan and said, "I just don't know how you can take all those pills. I just wouldn't do it." And Meaghan said, "I take all these pills because, when I do, I feel better." That's when I knew I was not going to have to worry about it. Meaghan and Dr. Barst struck a bargain that Dr. Barst would not take Meaghan down the road of transplant until it was absolutely necessary. With that in place, that's what happened. Meaghan did struggle with it. She had support by way of psychologists and doctors and family, and she talked to other people. She just decided, "If this is going to allow me to stay among my loved ones longer, then that's what I will do." Transplant initially started out [with] what they called a dry run, where they thought they had compatible lungs. We flew to Stanford, but it turned out that they weren't. However, we did find out then that Meaghan's heart had been compromised. So now they, at that point, knew that Meaghan was going to need the double lung heart block transplant. It was only a few months later and we got the call again. We went back down. Meaghan's transplant was, according to those surgeons in the room, textbook. However, when she was in recovery, she had problems with bleeding, and so they had to take her back in again. After that, that's two surgeries right in a row. So she ended up in ICU and an induced coma for 10 days to allow her body to try and get to the point where it could handle the trauma that it had just been through. It literally was like having Meaghan reborn. She had to learn to walk, to write, to talk, everything. And she did. We were at Stanford from February to June, and then we went over to the interim home where you stayed and kind of functioned on your own and then were close enough to get back for visits to Stanford. We came home, and while Meaghan was in the hospital, she suffered some infections and different things along those lines. Then, when we came back home, she was about a year out and she started having difficulties. She developed congestive heart failure, and then she just kind of went downhill from there. We were at the University of Washington when Meaghan felt herself slipping away. I was in the room with her, and we called. They came and rushed her down to the emergency room. As they're wheeling her out, she said, "Mom, I'm scared." I remember telling her, "Meaghan, it's going to be okay." Now, I didn't know at the time what I was telling her, but it was okay because she had gotten as far as she was going to get. I spent a lot of time with Meaghan. We were each other's best friends. We could agree to disagree. When she went, I told her it was okay to go, that she would always be with us. I accepted that that was something that was going to occur at that point in time. I had always prepared myself for it. She always prepared herself for it because, whether it was going to be part of her future or not, it was something that was a possibility. So to ignore it or to act like it wasn't, wasn’t realistic. I guess the one thing that has stayed with me throughout all of this after Meaghan's passing is how much of an effect PH has on the entire family. Everyone is affected, and I would say that a lot of attention and help as far as mental health, physical health, all that, was given to Meaghan. I think, in some ways and in some cases, other members of the family who were affected by it stayed silent, and the help that they maybe could have used or needed at that time, they didn't get. That has affected our family as a whole and each of us as individuals about how we look at life going forward. My name is Mary Jan Hicks and I'm aware that I am rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me For more about Meaghan's journey, visit www.meaghanhicks.com. /episode/index/show/phawarepodcast/id/10987871

Episode 277 - Mary Jan Hicks 08/29/2019

Stephanie Bachelder - phaware® interview 276 08/27/2019

Stephanie Bachelder - phaware® interview 276 Pulmonary Hypertension patient Stephanie Bachelder on being diagnosed with a terminal illness, the power of combination therapy and why she feels she is no longer dying of her disease, but living with it. My name is Stephanie Bachelder and I am a pulmonary arterial hypertension patient. For probably about 15 years, I was symptomatic, having shortness of breath, swelling of the legs. I was passing out. I had extremely high blood pressure. I was very obese, morbidly obese, and I just kept being told by my doctor that I was fat and lazy, and had asthma, and to go exercise. I wasn't sent to any kind of specialist or anything like that and it wasn't until I was in complete respiratory, right heart, and kidney failure that the doctors finally looked at my case and started doing some tests, which included the echocardiogram and then the right-heart catheterization, which confirmed the diagnosis. It only took me about a month to be diagnosed once I was that sick, but again, 15 years, symptomatic with no diagnosis. When I was first diagnosed, I went home and I looked up the information and I was horrified. I was resigned that it was a death sentence for me and that there was nothing that I could do to get better. Even with the medication that my doctor had put me on that was supposed to help me breathe better, I didn't see myself living much longer. Well, the first therapy wasn't the right therapy and unfortunately I progressed from stage three to end stage. So again, I was already in right heart failure. I was in stage three end diagnosis, but stage four by 2013, they told me to get my affairs in order that I probably wasn't going to see the end of that year. So at that point my doctor had tried a different therapy, two therapies, a combination therapy. So probably within six months of starting that therapy, I was off the oxygen. I was blowing out of the water, the six minute walk test. I walked like 300 meters further than I had in the previous walk test six months before. I got off the oxygen. At that point as I was getting better, I was able to lose a little bit of weight. I had been involved in a weight loss program, but they kept telling me that they would not do the surgery on me to have the gastric surgery, because I was too sick and I'd never make it through the surgery. My pressures came down enough on that combination therapy that they did the gastric sleeve surgery and I've lost 250 pounds, which has further, absolutely further improved my condition. I am now on a triple therapy. I live a normal life. My pressures went from in the hundreds to down in the low thirties now. I think it's important to first of all get diagnosed and get the right kind of meds. There's 14+ approved treatments out there now, whereas there wasn't several years ago and people are living longer with the right treatment and each case is individual. I can't say that somebody would be able to go through exactly the same steps that I and my doctor did and have the same results. So it's an individual case by case thing to be able to find that right medication, that right combination. Some people have other conditions (I mean I had multiple morbidities, co-morbidities, they call them), and I still live with health problems, but I live a better life than I lived previously. I'm grateful for the little things and I don't sweat the big things anymore, because I know that I've been through something very, very big and I was fortunate enough to make it through it. The questions that I get and the advice that I then give after these questions are about the side effects with the medicines. I tell people that those side effects can be very, very, very difficult to live with on a daily basis. Especially if you're living with a family, you have a family to take care of, you have a job that you're working. It's hard. It's very hard to deal with joint pain and jaw pain and diarrhea. You have to carry an extra change of clothes with you sometimes. I mean you have to make adjustments, but I live every day managing my symptoms when I have them with over the counter medicines. I've been fortunate enough that I can do that. I tell people I bullied my way through those side effects and the titrations up on the medications to go up to the highest dose that they wanted me on. Like I said, still have the side effects, but they're more manageable now and you have to stick with it. Absolutely have to stick with it. I tell people that I'm no longer dying of my disease. I'm living with it. My name is Stephanie Bachelder and I am aware that I'm rare. /episode/index/show/phawarepodcast/id/10911105

Episode 276 - Stephanie Bachelder 08/26/2019

Cathy Downard - phaware® interview 275 08/23/2019

Cathy Downard - phaware® interview 275 Lupus and Pulmonary Hypertension patient Cathy Downard discusses her rare disease diagnosis and how she battles depression by helping kids in her the community become citizens. My name is Cathy Downward, and I am a pulmonary hypertension patient. I was diagnosed with lupus when I was 17. Like most teenagers, I was pretty independent and I wanted to do everything. So when I was passing out, because I played basketball and I didn't want anything to stop me from playing basketball or being in the school plays, I just didn't tell people. I was diagnosed with lupus, and then after many years of being treated, like I was a leper in the emergency room. When you go in with a problem and you're in pain or whatever, doctors, a lot of times write you off, if there's not something they can test for and see that there's something wrong with you. So I'd made up my mind. I was not going to go to the emergency room, no matter what. I got really sick in August of 2013, I'd had some strokes, I'd had some other things, but I was in the midst of this, “I'm not going to the emergency room.” And when I was sick, I was obviously running a fever, but I wasn't really making good decisions. It was about a hundred degrees in Indiana. I had two pairs of pajamas on and three quilts, and no air conditioning, and I was shivering in bed. I just went to sleep. I got up in the middle of the night and had to go the bathroom, and the point when I realized I had to go to the emergency room was when I had to crawl to the toilet. Then I was like, "Okay. I took this little far." I went to the emergency room and they began to treat me for sepsis, which I had, but I had it, and I'm lucky that I did because there's no way I would have went to the emergency room. Through that visit they sent me to an Indianapolis hospital from my local hospital, because my oxygen saturation just kept plummeting no matter what they did. They were about 24 hours from intubation. When I was finally told that's what I had, the doctor that told me said, "Well, we think you might have pulmonary hypertension." I didn't know what it was, but I already had lupus so it didn't matter. I was laying in an ICU bed and I'm looking at him and he said, "Don't worry. We're going to try some pills and if that doesn't work, we'll just try a transplant." I was like, "Transplant what?" That's how I found out. I did two oral medications for the first year. Over the course of that year, I continued to get worse. I was in school to become a teacher, and so I was traipsing across campus with oxygen tanks. I finally went to the doctor and I said, "I think things are getting worse. I don't know what we'll do from here.". Then he said, "Well, we've hired a PH specialist in the group and I'm going to send you to him." At that point they did at another right heart catheterization with no sedation. People don't realize that anesthesia affects your right heart cath. I was at a 90,( the pressures and my lungs), and he said during that right heart catheterization they decided that I was a candidate for Remodulin. They put me on the Remodulin, and I was a different person. I have been ever since. I had IV at the time, I have had some problems with the medication. Lines continued to come out and become infected. I had seven lines in one year, and so they decided to move me to Sub-C. I was pretty upset and cried because everything online talks about how bad it hurts, and it does. It hurts, but I was able to start teaching this last year. I taught for a whole year special education, sixth grade and there is no way with having the lines that kept coming out, and having to have those emergency trips to the hospital, and a hospital stay over a couple of nights, that I would have been able to teach for a year. So it's providing me with purpose. I do suffer with some depression and anxiety from time to time, but I know myself. I know the depression is going to come, and I know that I'm going to rebound. When I get depressed, I try and think of some way that I can help someone else with PH or just someone in general. There have been times when the only healthy thing that I could do is from a hospital bed, compliment the nurse, or try and pick up my own tray, or do something of that nature. I mentor our junior National Honor Society and they do five hours of community service a semester. So not only am I responsible for helping kids learn to read, and helping kids learn things that they need to be able to get the rest of their education, I also can benefit other areas of the community and help them become citizens. And they need me. I come from a very poor school district. They need me to show up every day. They need me to correct them even though they don't like it in the moment, to help them become adults. I am not a long-term survivor yet, but I will be. My name is Cathy Downward, and I am aware that I am rare. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me /episode/index/show/phawarepodcast/id/10910967

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