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Thread: Introduction and Story

  1. #1
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    Default Introduction and Story

    Iíve been a lurker of this forum since being diagnosed and while Iím still figuring out how to live with GPA and how to share my story of grappling with a rare life threatening chronic illness, I want to add my experience to this collection in hopes of providing connection and reflection for those who are struggling for or with a diagnosis of GPA.

    It started in June of 2015 when I had what felt to me like an ear infection. I hadn't had one since I was a kid but could tell there was fluid on my ears. I thought it could have been many things: I had recently moved to an entirely different part of the US, a white mulberry tree was heavily pollinating the air, maybe it was something in the new house, like mold...I had no idea. I saw an urgent care doctor who confirmed the fluid and prescribed an antibiotic. After a week of no relief, I saw my primary care doctor who also saw the fluid and prescribed a different antibiotic. I gave it two weeks during which I started having sharp pain regularly in my jaw and teeth. The symptoms remained and my primary care doctor referred me to an ENT. The ENT tried another round of antibiotics but my ailments not only remained, they grew worse with the addition of pain in my face and nose. I visited the ENT regularly for a period with no progress. At one point, an eardrum was lanced (it had previously ruptured from a water accident) to remove the fluid but it returned once the incision healed. With each visit I became more emotional and frustrated by the lack of progress and the doctor seemingly ignored my claims or didn't believe me. The ENT at one point referred me to an allergist where no allergies were determined and diagnosed. Meanwhile, my symptoms worsened: increased and constant pain in my face and jaw, regular nose bleeds and intense crusting in nose, more fluid buildup in my ears, constant tinnitus, and the beginnings of nerve and inflammation pain in my body. I had also developed what appeared to be a small bump at the top of my nose, right at the bridge. More antibiotics were tried and at one point prednisone which offered amazing momentary relief. By the holidays of 2015, my ailments grew worse (especially the pain afflicting my body and face) and I was finally referred to an infectious disease doctor by the ENT. But, I had also developed an irregular heartbeat that would practically paralyze me with shortness of breath every time it struck. Days before the new year, I went to the ER as was recommended by a family member who had seen me at the holidays and said that if anything, the next time the irregular heartbeat returned, I needed to get to the hospital. Doctors in the ER were immediately and only concerned with the cardiac arrhythmia, despite my begging them to address the infection and other problems. I was admitted to the hospital as a cardiac patient and was diagnosed with Wolff-Parkinson-White syndrome by a doctor who I grew to distrust. I was discharged days later and was referred back for a checkup and further cardiac observation in six weeks. I declined and asked for a referral to the cardiac doctors of a major hospital in the area for follow up but I couldn't secure an appointment any sooner than five months out. I began seeing an infectious disease doctor in the new year and it was almost the same scenario I had with the ENT: no willingness to listen to me, different oral antibiotics, and worsening symptoms. The inflammation pain in my legs and arms became so bad that I found it difficult to move. I was having night sweats regularly and despite being constantly tired, I couldn't sleep the night through. I had developed a complete lack of appetite and had lost over 30 pounds. The nosebleeds were now regular and sometimes impossible to stop. And, the arrhythmia had returned. With no progress being made, it became a tense relationship with the doctor and I was much desperate. The ID doctor started requesting imaging when a mass was discovered in my left lung. A biopsy was done and it came back as necrotizing pneumonia. Meanwhile the pain and arrhythmia were worse and so constant that I had to take leave from work. At home, I lived mostly on the couch and in the bed in a vicious cycle of addressing the pain with heat, nursing fatigue as much as possible, and being helped to move about the house. The ID doctor ordered intravenous antibiotics that required the installation of a PICC line. Twice a day I was having the antibiotic administered for a period of two weeks. My symptoms remained. Finally, the arrhythmia became too much to handle and I went back to the ER.

    Upon this second visit to the same ER, I was rushed in and had 15 or more personnel in the room working on and observing me. They even rolled the ďred cartĒ in. I requested a different cardiologist and they got the arrhythmia under control and determined that the pneumonia wasn't responding to the antibiotic treatment. An electrophysiologist and pulmonologist took over and ordered a catheter ablation for my heart and a lung debridement for the pneumonia. After the two procedures I was referred to a different ID doctor who along with the pulmonologist raised the question of GPA but hesitated to make a diagnosis pending test results. I was discharged from the hospital and referred to a new ENT within days. At the ENT appointment the doctor checked me over and removed material from nasal cavity. We were nearing the end of the visit when I lifted my glasses (I wear them for sight) and pointed out the bump on my nose. He said he thought he recognized it and although he wanted to wait for test results, but that he believed I was suffering from GPA. It was the first I had ever heard of GPA and the realization that I might possibly be suffering from a serious chronic illness shattered me. While he wanted to be certain through tests, itís what I learned was known as saddle nose that tipped it off for him. It was finally at the consensus of these multiple doctors in April 2016 that I received the correct diagnosis of GPA. After being discharged, I was immediately referred to a rheumatologist who felt that my health was good until the onset of the disorder and that my case was severe enough to warrant immediate and consecutive rituximab treatments. I had five weekly treatments and was on bactrim DS. I finally noticed relief, especially in regards to the inflammation pain, between the third and fourth week of infusions. A week after the fifth and final treatment I returned to work in June 2016 and an almost normal work schedule. Now I see a rheumatologist, nephrologist, ID doctor, ENT, and cardiologist with less regularly a year after my last treatment. For remission, I take azathioprine daily and bactrim DS three times a week. I also take verapamil daily for my heart. I've adjusted well but have noticed limitations that weren't there before. Those realizations can be frustrating and defeating. Itís also tiring and frustrating to be on top of everything, aware of what I expose myself to and what my energy needs are. I have to flush my sinuses and constantly am clearing my nose and throat. I have heart palpitations a shortness of breath. Iíve noticed a minor loss of hearing and have recently developed a nasolacrimal duct obstruction. But in the end I'm grateful to have already been someone who is in tune with my emotions and I'm also grateful to have a strong partner and concerned network of family and friends. I wouldnít have been able to survive and endure.

    It's a terrible disease that amazingly affects people in different ways. I've always been a relatively healthy person and having this sudden onset of symptoms that grew worse rapidly was terrifying. Iíve never had to deal with doctors, hospitals, health insurance, surgeries, medicine and treatments and looking back it can be shocking that I survived it all. To go through such pain and receive multiple misdiagnosis and facing doubt in your experience from medical professionals was at times more traumatic than what my body was going through.

    Iím naturally optimistic and canít help but recognize some positive in the experience. This has been one of those times that teaches you a lot about yourself and I had a share of lifeís challenges prior to this health ordeal. But I learned a great deal about my character and self. Iíve always been self aware about mortality but a new acceptance was found. Ever a realist, I see that as a positive thing. Iím more aware of my body and itís needs, although itís still a big challenge. A greater sense of self acceptance and understanding was found. And while I like to think that Iíve always been a kind and empathetic person, itís become more of a mission to display both as a means to connect and share.

    This forum was such a resource for me after my diagnosis and Iím grateful for the candidness and kindness on display here.

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  3. #2
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    Lurk no more, Levi!! Your disease onset symptoms were a lot like mine. I was fortunate to be sent to a large teaching hospital (Ohio State) where the docs had some hypotheses about what I had (wegs not among them) but no preconceived notions to focus their diagnostic efforts. They arrived at a diagnosis of wegs by process of elimination. Once treatment began, so did recovery. I was diagnosed five days after being admitted to the hospital (via the ER). From the time I first noticed symptoms (persistent ear infection, cough, and night sweats) until diagnosis was about five weeks.

    I'm fortunate. I was diagnosed before too much damage was done. Thanks to some great docs at OSU who diagnosed and stabilized me and a Vasculitis specialist at Cleveland Clinic who has kept me stabilized, I lead a nearly normal life. I had retired about nine months before disease onset, so I don't have to deal with work stressors.

    I hope you're able to return to a nearly normal lifestyle. Just give it time, learn as much as you can about the disease, and become a fuller partner with your doc regarding your care.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Welcome Levi!
    Hope you are currently in remission.
    Diagnosed April 1995

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    Hi Levi, thanks for coming out of hiding.

    Since you have read, I guess millions of posts by now, you will know that your symptoms sound like many others on here

    Now that you are no longer a stranger - Welcome
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome to the forum, Levi, and thanks for sharing your story. You had a rough journey. Thanks God they have eventually found out the right diagnosis.

    I hope I can ask: do you have heart involvement of WG or is it a reaction to other inflamations ?
    I had reactions of my heart (fluids and feeling of the heart beating with force on the chest walls) but it was a reaction to wg flare. When the flare was over, the heart issues were gone too.

    are you a librarian ? We have a wonderful lady here who worked as a librarian.
    Last edited by Alysia; 10-07-2017 at 03:10 AM. Reason: I wondered about the wolff parkinson white but then googled it so no need to ask
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  11. #6
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    Welcome, Levi! I've been to Fredrick many times as I used to work close to there. Nice place. Good write-up on your story.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  12. #7
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    Default Re: Introduction and Story

    Quote Originally Posted by Alysia View Post
    ...I hope I can ask: do you have heart involvement of WG or is it a reaction to other inflamations ?
    I had reactions of my heart (fluids and feeling of the heart beating with force on the chest walls) but it was a reaction to wg flare. When the flare was over, the heart issues were gone too.

    are you a librarian ? We have a wonderful lady here who worked as a librarian.

    The cardiac involvement is the biggest lingering question and concern for me. I had never had heart issues until the height of my GPA symptoms and ailments which at the time were not diagnosed. The ventricular tachycardia was the scariest symptom of all, above the constant nose bleeds, paralyzing body pain, rapid weight loss, etc. The cardiac doctors at my treating hospital have never believed that my cardiac issues are connected to the GPA diagnosis but they also have not been able to establish an alternative explanation. My infectious disease doctor and rheumatologist have been more open to the possibility.

    I have not had any signs of ventricular tachycardia activity since the ablation that was performed at my second visit to the ER when the diagnosis was made. If you're not familiar with the procedure, they try to recreate the tachycardia, locate the source in the heart muscle, and either burn or freeze that section of muscle that's overreacting. But after my operation, the electrophysiologist remarked that they had a difficult time recreating the tachycardia and locating the source but had done so enough to successfully perform the procedure. I do still have occasional what can be best described as palpitations. My doctors have been interested in but not concerned about this. I can't help but feel though that my cardiac issues, treated and existing, are connected to my GPA. From inflammation? From affected organs near by? I don't know and haven't been able to find out, but GPA seems the most likely answer seeing that I was a healthy 32 year old with no previous health issues before the onset of GPA.

    I am a librarian currently working in a public library. I'm fascinated by information and like connecting people to it for whatever their need is. Public librarianship can be hard and tiring and is often not what people think the work really is. I like it so far though and have found it to be the most rewarding work I've done.

    You've all been so welcoming and I appreciate the opportunity to share my experience with GPA and learn from all the experiences shared in this forum. Thank you!

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  14. #8
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    Default Re: Introduction and Story

    I guessing you'll be a huge asset to forum with your research abilities.

    I haven't heard of anyone bringing up tachycardia issues before. Is it associated with wegs? Who knows? I have had several central nervous system issues arise and the verdict as to cause is split about evenly among my doctors. The first issue was almost 2 years ago now (how time flies). I was having shortness of breath and they found that my right phrenic nerve that controls my diaphragm was damaged causing a paralyzed diaphragm. I had diaphragmatic plication surgery -- no fun. Not long after that, I was discovered to have bradycardia and a pacemaker was installed. And, supposedly, I am now hypoparathyroid, but I'm not buying into that just yet. A week ago, my cardiologist called to tell me I have tachycardia and put me on meds. I can't say if any of these are caused by wegs, but it sure seems like a lot of issues for one person to have. I can't imagine its coincidental. Either wegs or something else.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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