Pulmonary Hypertension

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Pulmonary Hypertension
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    Just one of those nights

    What’s worse than insomnia? Painsomnia.

    Anyone else up and want to talk? Send me a message , let’s be friends :)

    ) #Insomnia #Painsomnia #Cantsleep #Gastroparesis #EhlersDanlosSyndrome #IntestinalPseudoOnbstruction #PulmonaryHypertension

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    Hello :)

    I’m new to this app, I’m hoping to meet people who have similar illnesses and struggles, it’s hard finding anyone who can really understand what it’s like. Adding all my hashtags hoping that I’ll meet people going through the same things I am!if anyone wants to chat shoot me a message :) #ChronicIlless #Gastroparesis #PulmonaryArterialHypertension #PulmonaryHypertension #HeartTransplant #LungTransplant #heartfailure #MastCellActivationDisorder #EhlersDanlosSyndrome #HickmanLine #FeedingTube #Gtube #PrimaryImmunodeficiency

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    I’m Aware That I’m Rare: Nola Martin

    Pulmonary Hypertension and Scleroderma patient Nola Martin discusses her road to diagnosis and the importance of support groups and seeing a PH specialist.

    My name is Nola Martin and I’m from Philadelphia, PA, and my journey with PH started about nine years ago.

    I was actually at work exercising one day. I was so excited. We moved to a new building. They put a gym in for us, and I’m on the treadmill for not even two minutes, and I could literally feel my feet swelling in my sneakers, and I’m going, “Well, this is weird.” I was having a lot of shortness of breath, but I kept making up excuses. “If I diet and exercise more. Maybe if I lose a little weight, I’ll feel a little better.”

    I was eating one orange a day. That was my meal for the entire day and it felt like I had a full course meal. Of course, I didn’t share this information with my doctor right away because, in my mind, I’m going, “Oh, diet and exercise more.” But how much more can you diet when you’re only eating an orange a day?

    I got up to walk to the printer which was less than a foot from my desk, and it literally felt like all the oxygen was sucked out of the room. I called my doctor at the University of Penn. She’s like, “I think you need to be seen right away. Are you able to drive? Can you come in?” I’m like, “Sure, I can come in.” But I didn’t tell her I was at work which was an hour away, but I drove to the hospital and when I got in, they put a pulse ox on me and they’re like, “Okay, let’s see if you can walk around this desk.”

    I took literally five or six steps, and all these alarms started going off. The next thing I know, they’re putting oxygen on me. They put me in a wheelchair. And she’s like, “We’re not even going to wait for transport.” They just wheeled me into the emergency room.

    And that’s when I start hearing things like #PulmonaryHypertension, and I’m getting an echocardiogram and oh, you’ll need a right heart catheterization. I didn’t understand any of this stuff at all. But that began my journey with pulmonary hypertension. And from that, I found out mine is due to #Scleroderma. And in addition to the scleroderma, then it’s like, “Well, now you also have congestive heart failure” and I have GERD real bad, and I have Raynaud’s and all of these other things.

    At first, when you first hear this and you go on the internet … most people want to google things and find out, because Google was the answer for everything. And I went onto Google and searched, and it was like oh, well you may have two to three years to live and you go through the whole depression thing. I said, “Wait, just let me talk to the doctors. Get my appointment, see what’s going on.”

    I discovered through that support groups, which was a wonderful thing because I got to talk to people who understood what I was going through. It’s hard when you’re trying to explain something to somebody else when you truly don’t understand it yourself. I learned a lot of information about support groups, about making sure that you are at a hospital or center or have a doctor that understands pulmonary hypertension and that can treat you.

    Because everybody has their own history and their story with pulmonary hypertension, and it may not be the same as yours. It’s very important, first of all, to make sure you get a good doctor, you get good treatment going, and that you learn the disease yourself and learn how it affects you personally.

    Read the full story: phaware.medium.com/im-aware-that-i-m-rare-nola-martin-252-f0b75358defe

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    I'm Aware That I'm Rare: Stacy Physick - phaware® interview 376

    Canadian pulmonary hypertension patient, Stacy Physick was diagnosed with PH in 2011. She immediately got her affairs in order, believing she only expected to survive 1-3 years.  Now, 10 years post-diagnosis she shares her journey and her conscious decision to lead a normal life.

    My name is Stacy Physick and I’m in Chilliwack, BC, Canada. It took a while for my pulmonary hypertension diagnosis. I actually didn’t start medication until 2011. My connection to PH is they believe it started because I had shortness of breath and a bunch of different symptoms, and I had a bunch of different tests done. Finally my doctors decided it was PH, but what they believed it was caused from was PVOD, pulmonary veno occlusive disease. They thought that was going to move fairly rapidly with me. When they finally decided to start medication, it was just to help slow that progression, hopefully, as well as the PH progression.

    I also had open heart surgery when I was four and a half years old and I’m now 63. It didn’t stem from that. I’m left with a VSD, a ventricular sepal defect. I also have a small ASD that I’ve developed over the years, but I’ve held real stable my whole life with that. I’ve always been checked by a cardiologist. So that’s really where my journey began is because of my breathing issues and shortness of breath and tiredness and things like that.

    How I knew the diagnosis was happening is I see a cardiologist on a regular basis. I’ve seen him annually for basically my entire life. He started with a change in my pulmonary pressure. He noticed, and he said, “You know, don’t worry about it yet. It might be okay.” I had been at that point already identifying that I had shortness of breath. I wasn’t remembering things quite as well. I was a corporate trainer and I also did a lot of presentations, pretty much daily. I did that for a few years. As the years progressed, I started getting shorter and shorter breath trying to talk. So he had noted this pulmonary pressure increase. Then what he did is he said, “We’ll just watch it.” Then six months later, I came back for a second echocardiogram and the pressures were even higher.

    Then my doctor sent me to a pulmonary specialist and that’s when they did some more testing. I had pulmonary function tests, another echo. I had a heart catheterization and that’s when they determined that, “Nope, you’ve got pulmonary hypertension.” That’s where it started from.

    The whole reality at that point was kind of a shock to me because he continued to do other tests and then he did the CT scan found out that looked like I was full of PVOD in my lungs. Then the diagnosis came that’s likely what it was. We were going to treat it as that. He had done all the clinical testing he said minus the fact of a lung biopsy, which would be the ultimate check off point to say that definitively it was PVOD. Then they set me up with a thoracic surgeon and it was at that time based on my pressures too, they said it was too risky to even do the lung biopsies. So I sort of started with that.

    Read the full story: phawarepodcast.libsyn.com/stacy-physick-phaware-interview-376


    I'm new here!

    I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾

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    Identity and chronic illnesses #ChronicPain #Identity

    #Fibromyalgia #Lupus #Infertility #COVID19 #Depression #PulmonaryHypertension

    I have not written for a while, the simple reason I had to take a break after writing my book. I landed a bestseller allowing people to step into my journey with fibromyalgia, depression and infertility. The struggle to find out who I am now that I cannot work, and the meaning of life continues to be a daily journey. In 2016 I stopped working and was in severe depression and in excruciating pain. In 2019 I was diagnosed with lupus. By that time, I was so tired of the fight I shrugged my shoulders and cried and went on with life.

    2020 I was in the first group of COVID sufferers. I almost lost my life and the subsequent chest infections and sepsis with 4 admissions in the last 2 years have taken a lot out of me. My lungs were scarred and I have borderline pulmonary hypertension. Accepting living with a limiting diagnosis and reduced mobility has made me quiet. Quiet because I got tired of explaining to anyone what they could not see. I did write the book, did I not!

    Many of us struggle in finding who we are again as the pain rips through our bodies. It is a daily decision. Our responsibilities as husbands, wives, siblings and colleagues weigh heavily against the pain. We diet, we walk, we look for solutions and you find no size fits all. Who you are is your character, it is not your job title and through therapy, we revisited my values.

    As a fibromyalgia and sufferer who suppressed a lot of pain, I learnt to have boundaries and put myself first. I learnt to be self-full (coined by Iyanla Vanzant). It has been a surprise to many. I am lonely, something I had not counted on. My friends have moved on with their lives and even when you get an invite you have to choose between the pain the next day and disappointing people.

    The next big decision I made was not to have children. With the pain, depression and inability to have a child, I chose to not adopt or go for surrogacy. The tradition, of course, was busy challenging me “you know you have to have a child to work for”. My question was, if my pain is 15 on the richter scale and I take opiates, how do you deal with a 2 year old? The grieving of motherhood was difficult and continues to be a companion who turns up at inopportune times triggering a flare.

    I reinvented myself to be a best selling author and I am writing my second book on grief. I have had to fight against the norm of how people did things. Social media did not help the insecurity of not being good enough. I found a lot of people do not understand invisible illnesses and the safeguards we have to ensure to live. It took me 5 years to write my book and I wrote it so that someone who looked like me, a cross-cultural British Kenyan woman would have a reference point. Perhaps I continue to hope that professionals will read the book and understand how we present with pain. The language we use when explaining pain needs to be understood. I have been able to help people in Eastern Africa and America who have struggled with understanding the multi-system diagnosis. Yet I still don't feel I am good enough.

    I have found my passion for creating awareness on mental health and infertility which are a taboo subject in the African community has been worth it. I evolved and became more compassionate and learnt to listen. I now use a walker to help me walk and sometimes I cry because I am an old woman with a young spirit. Then I am reminded who I am and how I stand with the weakest is most important. I think one of the greatest challenges is not being financially independent and is soul destroying, but that is a story for another day.

    Hang in there, the sky may be grey the sunshine will turn up when you least expect it.