Granulomatosis with Polyangiitis

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Granulomatosis with Polyangiitis
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    Need a Rheumatologist that Specialize in Vasculitis

    I am sure that I have Vasculitis but

    I cant find a Dr to diagnose me or else need months waiting list for appt.

    I have Lupus and Sjogrens.

    I would go anywhere on the East coast.

    Thank you

    #GranulomatosisWithPolyangiitis

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    I'm new here!

    Hi, my name is FeliciaDistad. I'm here because I want to elevate patient voices and create a space where we have a more active role in our own care.

    #MightyTogether #Vasculitis #GranulomatosisWithPolyangiitis #chronicallyill

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    Another chronic pain diagnosis. #ChronicPain #GranulomatosisWithPolyangiitis

    Anyone here suffering from Granulomatosis with Polyangiitis? I’m newly diagnosed and feeling scared and sad. It’s another diagnosis for me on top of IC, endometriosis and adenomyosis along with depression and anxiety. There’s some relief with a diagnosis after over a year of struggling with “mystery” symptoms but I don’t know if I can handle another #chronicdisease with #ChronicPain . I don’t know how to keep going through all of this. I feel like I am falling apart physically and mentally.

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    My son has to self quarantine because COVID-19 exposure!

    #COVID19 #Wegners #GranulomatosisWithPolyangiitis

    My 19 yo son just heard last night that the girl he shared a blunt with a few days ago is having COVID-19 symptoms, and is waiting to hear test results. Shit, shit, shit!!

    We live in a small 2 bedroom apartment together and he had been trying to be very cautious on my behalf (compromised immune system and lung problems due to GPA). But he had started getting restless and more careless recently and I reminded him that nothing had changed as far as risk of this virus... now he tells me this happened...

    We are setting up for self quarantine within our confines... I have my own half bath but there is only one shower in the unit. We have to share the kitchen unless I just leave meals for him...??

    So worried but at the same time just worn down, and hopeless, I almost hope that we just get it, and all this ends...

    We both have mental health issues, and went through a horrific divorce with his Father and myself... we both have PTSD from the experience. This all just seems like too much to bear, and we discussed the underlying relief that we may be able to die to escape without the stigma and survivors’ burden left behind from suicide. I’m not able to share this emotional hot mess with anybody else so I’m posting here...

    5 comments
    Post

    waiting very impatiently for my 20 year old to see a rheumatologist that specializes in Vasculitis. ENT started testing her for GPA last week.


    #GranulomatosisWithPolyangiitis

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    Post

    When Wegener's Strikes

    2017 began with a bang for my 21-year-old son, Dustin. He has always been an extreme sport participate and oddly had never been hospitalized. He spent the first six months of 2017 with a never-ending sinus problem that caused him breathing problems, and body aches and pains.

    Then July hit, and he woke up with paralyzing pain throughout his body. It began in his knees then moved onto his neck, arms, and shoulders. Since I have #Fibromyalgia, I expected that he did too. Because he kept saying, “it feels like my bones are broken.” Something, I could relate to.

    The pain was so bad that went to the emergency room three times in 10 days. Each time the doctors said that he just needed rest. So he went to see the family doctor. He saw immediately that Dustin was in pain. The first thing he did was a chest x-ray. It showed dual pneumonia. With the help of steroids, he was able to return to work, and he was given several antibiotics.

    He passed out at work a few days later and was sent to the nearest hospital. He stayed there ten days. During that time he had multiple chest x-rays, bronchoscopies, and a lung biopsy. His lungs were bleeding. And as they rinsed the lungs, the blood would come right back. The bleeding was so bad that his heart was having trouble keeping up, so he was put on a heart monitor. He was hooked up to oxygen and given several blood transfusions and iron through an IV. The biopsy showed he had Human Parainfluenza Virus (HPIV). Another test showed that he also had pericarditis.

    He was in the hospital for ten days, and during the last three, they told him he was probably going to die. He had just bought a house, started his dream job, and was having a baby. This wasn’t something any 21-year-old wants to hear. They couldn’t do anything more for him, so they sent him home after ten days. Armed with a load of medications and a binder of his stay, Dustin went home with much uncertainty about his life. He also left with a list full of diagnoses.

    Within a week he’d lost even more color from his face, his chest was tight again, breathing hurt, his pains were back, he couldn’t lift his arms, and he had chills, a fever, and no appetite. Upon follow-up, Dustin was admitted to our local hospital.

    The doctors performed some of the same tests as the former hospital and some new ones. The bleeding was still in his lungs, and so he was being treated for every symptom he had. The steroids made him look like a blowfish. The hospital started taking blood from him several times a day. They were looking for something autoimmune. Several days later the bloodwork came back positive for Wegener’s Disease, also known as, Wegener’s Granulomatosis.  Or more frequently, Granulomatosis with Polyangiitis. Wegener’s is the result of blood vessel inflammation, called “#Vasculitis” and can be seen mostly in the sinuses, lungs, and kidneys.

    So Dustin’s weight loss, fever, fatigue, body aches and pains, persistent runny nose, coughing up of phlegm, and shortness of breath were all due to Wegener’s.  The cause is not known, but the treatment involves chemotherapy medication given intravenously.  The goal is to build up the immune system and to send the disease into remission.

    Wegener’s is treatable, but it is not curable.  If not caught early, Wegener’s will kill you. And sadly, it can affect anyone at any time. Though it’s usually found in people much older than Dustin.

    Dustin will forever be on medication for pain and to build up his immune system so he doesn’t catch what everyone may have. Every six months he has Rituxin treatments once a week for two weeks. And each time he hopes he hopes it will be the last. He looks forward to remission even though he knows that his Wegener’s will never go away. He’ll need treatment for the rest of his life, which is a long time for someone so young.

    References

    Granulomatosis with Polyangiitis. John Hopkins Vasculitis Center. Retrieved from www.hopkinsvasculitis.org/types-vasculitis/granulomatosis-wi....

    Granulomatosis with Polyangiitis. Mayo Clinic. Retrieved from www.mayoclinic.org/diseases-conditions/granulomatosis-with-p....

    Granulomatosis with Polyangiitis (GPA, formerly called Wegener’s). Cleveland Clinic. Retrieved from my.clevelandclinic.org/health/articles/wegeners-granulomatosis.

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    Anxiety isn’t real

    For the longest time I didn’t believe that I could have anxiety. I struggled with mental health since 7th grade maybe even before that... but anxiety wasn’t the problem. Not until one day in highschool. It was my sophomore year and all I remember was walking into the wrong classroom which shouldn’t have been that big of a deal. I’ve done it plenty of times before. But that one time triggered my ignored and underlining . This fog began captivating my mind. I couldn’t think clearly and I found myself sitting in the middle of the hall crying because I didn’t know where I was or what I was doing. I just sat there feeling almost as if my brain just shut down. No thoughts coming in or out. Then it went away as if nothing happened. Then flash forward a few years I started college and It got worse. I never told anyone about that whole situation that previously happened in highschool until college. I missed one class and being behind stresses everyone out but for some reason I became extremely worried and panicked since I was now behind. Then one class led to another which led to a whole week and month and to me waking up to go sit in my car and cry because I just drove the Hour to school and I was surprisingly school smart but for some reason I fell. I couldn’t get myself to go to class or to explain to my professor or advisor what was happening. I went home one of those rough days and called my best friend and just bawled my eyes for no reason. I couldn’t breathe. Again, my brain just felt like it was shutting down. No thoughts were coming in or out. I didn’t remember what I was saying. That’s when I knew i needed to seek help. I went from a girl with a 4.2 gpa to a girl who dropped 3 out of her 5 college classes. Not just one semester but both. All because I was to scared to tell someone. So if you are in the same boat. Please tell someone. It will help. I promise #Anxiety #Depression
    #MentalHealth

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    Who else has pets that help them make it through each day? #ChronicIllness #RareDisease #Alpha1AntitrypsinDeficiency #GranulomatosisWithPolyangiitis

    These are my two pups, who make me have to get out of bed on my worst days, but crawl back in to bed and curl up with me, who make me laugh, keep me company through good and bad, and make each day worth it. I also have 2 cats and 2 horses, and couldn’t survive without them. ❤️

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    Do we move on without unsupportive family? #Vasculitis #GranulomatosisWithPolyangiitis #FamilyAndFriends

    Unsupportive family are hindering my recovery both mentally and physically. Finding it very hard and deeply hurtful to accept that they just don’t seem to care. How do we move on?

    3 comments